JayCS’s Fibro Blog

[JayCS]

2023-09-21 Thursday - recovery? Nope. Praps from the stress overload of the last few days and nights, but a bit feverish in the afternoon. Also histaminey, I think from yogurty stuff and - now I get it - half a walnut this morning, also the insect bites. RR/supp changes? Better today.

What … worked / went wrong … today:
Wednesday evening I was so hungry, Thursday I’m quickly satiated - don’t get that. Friday morning fairly hungry again, but the kind that’s quickly satisfied.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down:
Jump out of hamster wheels:
Self-treatments:
Wall sits: , but 2x TT
Balance exercises:
Prepare supps by 15:00:
Back exercises by 16:00: , but at 21:00 .
Encapsulating by 17:00: , but at 18:00 and 21:00
White/blue lip massage / puckering: - not sure it’s worth it, my wife Friday morning says ‘that’s cheating’. - Funny even if she says I look bad (today “yellow-white face”), or I look in the mirror and have to agree, I often don’t feel it, neither before nor after she says it. But of course I’m used to not being able to move for long.

How was I today?: Feeling 70-75%-ish (), energy today (), sleep Wednesday night (), sleep Thursday night , nausea 0% , fog 10% (), 3 bites, going up to 5, forgot to watch out , and even when I did spread the oils everywhere, even back, some more appeared, vertigo 0%, 100% of the time (), sinuses and sneezing in the garden, as if histamine were up. Oh and sinus headache, so it is up - the half-walnut!

Today working mainly on … time management, self-treatments RR more, for energy I don’t really know what to work on at the moment, altho it’s the most important thing I need to keep in focus, I spose LDN is the next.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅) - high from 22:00 to 3:00 like the night before, histamine incl. stress and bites? But also constipation/pee pain.

|09:23:00|148|92|72|After TT, moving, typing|
|12:55:00|148|91|66||
|13:22:00|137|97|67||
|13:25:00|134|93|74||
|13:26:00|133|90|64|working|
|16:32:00|139|89|66||
|16:33:00|142|88|67||
|16:40:00|124|83|64||
|17:34:00|165|96|65|After garden, before cycling to TT|
|18:18:00|137|92|63||
|18:22:00|133|89|63||
|19:02:00|129|85|63||
|22:08:00|150|78|71|After undressing|
|22:13:00|148|79|69||
|22:14:00|132|79|67|down again|
|23:14:00|128|76|66|A bit high from 10 to 3, I’m blaming the stress together with histamine|
|23:47:00|120|71|69||
|00:49:00|129|80|69||
|01:35:00|126|80|66||
|02:28:00|124|76|66||
|02:47:00|116|84|59||
|04:54:00|101|67|67||
|06:26:00|108|70|79||
|06:54:00|115|73|83|Now that’s a good start after getting up|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (❌) vs. post postural ache ✅. Stiffness ✅. TT 1:1 and 2:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/4 - taking care to stop almost immediately (❌), gardening/moving ➔ 80%/4 (❌), talking 15' ➔ 80%/4 ❌. White lips60-90% (❌). Exhaustibility "90%" and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 7h45, up 7x (50'), all deep. Sinus headache 20% better by the morning, instead of as usual worse ✅, 2-3x p5 ❌, everything else OK ✅ ➔ getting up: 70%/2 ❌, severe adstringent stomach pain made me jump out of bed, but RR 115, and quickly drinking stopped it ✅. Since I often feel almond milk causes adstringency in my mouth I researched, see below.

Sleep 22:15-6:50,
23:13 high cos constipation/pee pain, from histamine(?) incl. bites.
2:27 still ‘high’ after p5 2nd time, bites itchier. plants till -2:44
6:20 sinus 0% headache 0-10% nostrils 5%
6:50 Adstringent stomach pain.,
Sum: 1h45+6h50-(6x5+1x20’=)50’ = 8h35-50’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Managed to calm down more today, but I'm still "sick" from / of the stress that's in the background. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee (✅), local pains, weather, dry mouth (✅) well under control: Details...

except GI: stools loose0% , appetite , pee pain: 2p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Like I’ve often felt, almonds are mildly adstringent due to the tannins in their skins. I thought however their skins are removed for almond milk, I don’t think they are cos it doesn’t say on the package and it’d be even more expensive. And “mildly” wouldn’t really explain that severe pain I had the other day in the upper GI tract and today in stomach that woke me up, and maybe started similar to that the other day. Maybe also it’s the tannins that are causing the raw tongue tip, like the other day when that increased due to eating unripe grapes.

Quality of life: 85%, despite “Feeling well”: 70-80%.

Lessons in self-care:
a) First table tennis I made sure to stop almost immediately pain came up, after 15 mins. Second table tennis I didn’t talk. A work video appointment I was planning on keeping to 5’ I cancelled completely, cos of my sinus headache.
Reasons to be cheerful:
a) This is sort of the calm after the storm, I’ve stopped stressing out… I hope… trying to muddle myself up, so I don’t get caught up, cos I can’t remember why I should…
b) Cos I was alone with the guinea pigs in the evening I realized I also make the same cheep chiiiirp great tit call as she does… - she admitted she didn’t realize, now I realize I didn’t either…
c) Several blackbirds have been chasing thru the garden, I think playing. But also very shy, easily scared, when I come blundering along - well actually, I try to be so careful to the point of it straining and hurting me, but to know avail, so it feels like blundering and I may as well do what I can’t change anyway.
d) Pigeon Duey visits me regularly, his wife sometimes too, what’s her name again? The one that’s not hatching.
e) Squirrel just scarpered past right in front of me, a yard away.
Simplified: -
Foggies:
a) Dropping quite a few things again today.
b) Talking is too much. First time talking praps 20 words during 2nd table tennis.
c) It’s not very handy at all to have a phone that resets every time I drop it or place it too ungently…

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-22 Friday - recovery? Tried, but absolutely not. Alll systems defunct. Well not all. But bladder pain and UTI have started up again, sinus headache, and this severe pain in the right upper abdomen (reduced towards the morning, a little worse again Saturday), which I put a hot water bottle on. RR/supp changes? Not sure, the way I binge worked it shouldn’t’ve been, but when I did check, it was soon OK.

What … worked / went wrong … today:

Habit encouragement… :
Time (= stress) management:
Keep blog time up: ()
Keep forum time down:
Jump out of hamster wheels: Work, guinea pig, the old favourites…
Self-treatments:
Wall sits: () - wouldn’t’ve been wise, I felt.
Balance exercises: - would’ve been wise.
Prepare supps by 15:00: , but 19:00
Back exercises by 16:00: but half at 18:00
Encapsulating by 17:00: , didn’t, even forgot 1 supp I think.
White/blue lip massage / puckering:

How was I today?: Feeling 70-80%-ish (), energy today , sleep Thursday night /, sleep Friday night , nausea 0% , fog 10% (), 3-5 bites , vertigo 0%, 100% of the time ().

Today working mainly on … time management, self-treatments RR, energy.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅). 22nd: (✅)(✅) - considering work stress. Regularly to or under 140, at night it took 4h to dip under 110, but did go <100 too.

|16:22:00|144|78|77||
|17:37:00|176|98|79||
|17:38:00|153|95|76||
|17:39:00|146|89|77||
|21:35:00|163|96|67||
|21:37:00|149|85|70||
|21:38:00|143|78|65||
|21:59:00|136|78|66||
|23:06:00|136|81|65||
|00:01:00|131|78|70||
|00:52:00|118|79|67|arrh|
|01:39:00|113|75|68||
|03:15:00|102|68|67||
|04:50:00|95|78|69||
|06:06:00|128|64|66||
|06:07:00|111|77|72||
|07:19:00|131|68|71|arrh|
|07:20:00|136|81|72||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (❌) vs. post postural ache ✅. Stiffness ✅. No TT 2:0 (moving 10%, talking 15%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3-5 ❌. White lips60-80% (❌). Exhaustibility "89%" and sleep ✅, click for details:

EXHAUSTIBILITY today: “89%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 1h very slow, 1h slow, 0h medium/quick

SLEEP (click for details): h ✅/❌, everything else OK ✅/❌ ➔ getting up: 80%/2 ✅.

Sleep 22:05-7:12 high Milz pain: wind? 3 Milz 70% → 50%, 5 Milz 30%, nostrils 0/20 head 20%, 6 Milz 20%, nostrils " head 20-30%

?60-70%/?2-3/?5% p0 st2 fw2’ fl0’ deep/ air? -A8 drymouth30% sore throat10% tongue20% itch 0% nostril/s0-10% dryhands0% nausea0% stomach0-10% sinuses0% headache0% stools0 loose% zombie0%. plugs0 cream0 gel0 wet0 heat teeth0
Sum: h+h-()’ = h-’ = h, up x ('), all deep.

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Work kept coming up, but getting one of the last bits done and writing to my colleagues helped, and BP was OK, considering. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today - work and relaxing.

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
The spontaneous decision to write to secretive colleagues was a clever one to get it off my mind.
Reasons to be cheerful:
a) Subadult Blackbirds and great & blue tits playing again, Duey and wife visiting me fairly closely.
b) Let off steam by writing to 2 colleagues about boss, which helped and got a helpful response in the morning.
c) Someone asked me if I’d like to contribute to their gardening newsletter by illustrating how I go about my garden.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-23 Saturday - recovery? New symptoms improving, old symptoms all better than usual. RR/supp changes? Calming down, BP keeping down, finding a baseline and trying to make sure I don’t flare up from that from any excitement.

What … worked / went wrong … today:
The above, my main focus, went well, but most new habits went down the drain…

Habit encouragement… :
Time (= stress) management:
Keep blog time up: ()
Keep forum time down: ()
Jump out of hamster wheels: (), but in the morning got into forum stuff, then jumped out.
Self-treatments:
Wall sits: - despite no TT.
Balance exercises:
Prepare supps by 15:00: , but in time
Back exercises by 16:00: , but later, altho I had hardly any energy then /.
Encapsulating by 17:00: don’t think I did any.
White/blue lip massage / puckering: , but seems silly, seems more important to watch what showering does and keep warm or get warm quicker.

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Friday night , sleep Saturday night , nausea 0% , fog 10% (), 1-2 of the bites still itching, but better (), vertigo 0%, 100% of the time (). Hmm, can’t I delete nausea, fog and vertigo as it’s always the same? (Oh, and decrease energy profile hours…)

Today working mainly on … time management, self-treatments RR, energy.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd: (✅)(✅), 23rd ✅✅ - seemed low, so didn't check, interesting when I did tho, a plunge from 150 to 118 inside of 2 minutes

|21:55:00|150|79|65||
|21:57:00|118|78|66|WHAT A PLUNGE!|
|23:12:00|104|75|70|arrh|
|00:28:00|118|75|65||
|01:41:00|107|70|66||
|05:08:00|95|68|61||
|06:34:00|120|79|65|getting up|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. No mates for TT, gardening/moving ➔ 80%/2-3 cos slow (✅), talking 5' ➔ 80%/3 ❌. White lips60-80% (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 8h07, up 4x (20'), all deep. 80%. Brushed teeth and realized I can get up, surprised how time flew with only 4x up. Itchy scalp for a few hours, after not having been able to wash hair for 6 days, new symptoms improving, old symptoms all better than usual. (✅), everything else OK ✅ ➔ getting up: 80%/2 ✅.

Sleep 21:58-6:25 Sum: 2h02+6h25-(4*5=)20’ = 8h27-20’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ❌➔✅: no guineas, work 30' with nice colleague still stress, said to her I keep wanting to find the "off"-switch for people after 3 minutes, cats: feverish, shop evening slow: someone in said always pleased to see I'm still walking, cos it always sounds as if it could end, I answered well it's been the end of making music, who knows, but knows if it'll begin again. Very tired, could hardly manage back exercises in the evening. Morning jumped in with nerve-wracking forum posts, but then managed to jump out. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
Concentrating on keeping calm is working. What helped was finishing most of the stuff I needed to do for work and then letting off steam.
Reasons to be cheerful:
Bit sad when I saw a broken egg outside next door underneath a pigeon nest. Then thought it seemed a bit big, turned it over to see how big, and it had a date printed on it…
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-24 Sunday - recovery? Like yesterday. However at 17:30 my body feels “ill”, unspecifically. And 1’ of a worship song per zoom that I love and then 3’ live, really nice, without pain rising to 5-6. New & weird. RR/supp changes? Like yesterday, but then the RR before and after the night dip seems to reflect an inexpicable tension.

What … worked / went wrong … today:
Above, main focus, remained good, habits were better today.
Habit encouragement… :
Time (= stress) management:
Keep blog time up: ()
Keep forum time down:
Jump out of hamster wheels:
Self-treatments:
Wall sits:
Balance exercises:
Prepare supps by 15:00: , but 17:45
Back exercises by 16:00:
Encapsulating by 17:00: yup, 16:00 , whilst wife fed guinea pig.
White/blue lip massage / puckering: , FWIW.

How was I today?: Feeling 80%-ish (), energy today (), sleep Saturday night , sleep Sunday night - but had an inexplicable tension an hour before I’d wanted to get up, for which a cold shower once again worked brilliantly! 1-2 bites ().

Today working mainly on … time management, self-treatments RR, energy.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd: (✅)(✅), 23rd ✅✅, 24th: ✅(✅) RR 180/103 at 20:25 cos of pee urge and a small work problem I was solving, but felt calm, and did go down to 135-145 quickly. However the sleep dip only reached 110 at 1:30 and <100 from 2-5, and then back up a bit to >120 at 6. So I'm wondering if this was all a result of whatever that was at 20:25, or what lead to it, I'd think music/service and cats were too much, altho it didn't feel like it I can't make out anything else...

|12:45:00|125|79|64|half an hour after getting guinea pig grass|
|12:46:00|121|70|65|This is how I feel it was yesterday too|
|12:48:00|119|70|66||
|13:11:00|134|94|66|gardening, not tense (cf. SBP?), but strain/Ache (cf. DBP?)|
|20:21:00|180|103|64||
|20:30:00|164|96|59||
|20:35:00|143|92|55||
|20:36:00|153|96|59||
|20:37:00|141|89|56||
|20:38:00|134|88|64|arrh|
|20:39:00|143|90|56||
|20:41:00|146|94|60||
|22:24:00|138|92|57||
|23:30:00|132|77|68||
|23:31:00|139|87|65||
|23:32:00|142|84|62||
|00:26:00|121|80|64||
|00:27:00|124|77|59||
|01:30:00|112|78|63||
|02:41:00|96|61|60||
|04:02:00|98|64|65||
|05:22:00|109|76|64||
|05:47:00|120|81|63||
|06:04:00|123|74|58|still tension|
|06:13:00|145|88|59|Directly after cold shower and getting dressed|
|06:15:00|126|72|57|back down very quickly|
|07:24:00|136|87|58||up, loo urge
|07:29:00|143|90|56||
|07:30:00|135|83|58||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. No TT, talking 15' ➔ 80%/3-4 ❌. Music 1' ➔ 60%/5 ❌. White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 7h55, up 7-8x (1h), all deep, plus 15' shallow which I've counted as part of the last sleep break before the successful cold shower to get the tension down ✅. Longsleeve at first till damp, then again from 4:30? cos of sore throat, despite feeling warm, except feet, so need onion layering at night again. 5:35 spontaneous heart thumping, "strain" from nothing, dream/thought not troubling, RR 120 (after pee and 5' forums). Pee pain of regularly 3 more urethra than bladder(?). Everything else OK ✅ ➔ getting up: 80%/2 ✅.

Sleep 22:25-7:20. -5:46 10’. Hmm, 5:59 can’t get back, still heart thumping. Cold shower? Have to anyway, let’s see. RR before and after, worked!: -7:20
Sum: 1h35+7h20-(5+5+5+5+5+5+30=)1h = 8h55-1h =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Music!? - New extreme reaction inside of a minute in the evening, tried several times with breaks, varying a bit, all much-loved, first via zoom, then "endured" 3' live, which I enjoyed, was peaceful, seemed to reduce tension - until it ended, where the pain shot back up to 5, so slowly back home, longer break, cats. My RR values then and before and after the night dip <100 may have been a reflection of that "excitement"/tension. A new one. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Evening fluey feeling, coughing a lot, not eating that much, easily satiated, slight weight loss.... now that all sounds familiar, like the inkling of my wife's "CoV" in March, however no temperature and no night sweats. My wife is nagging for me to try someone else on this to either think up a new idea or get a little further with the dangling praps-cancer issue. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)).GI: My wife has something, turned into half a day of diarrhea, so maybe my ill feeling is actually still something GI or a big bug, and a tiny bit of strange wind at 18:00 and later shows that, as well as the fever feeling without temperature, with CoV negative. :

1) GI, pee, local pains, weather, dry mouth well under control. Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
a) Found how to sit on the window sill first thing to look at the sunrise/sky without twisting my torso too much, so that the supps can slip down my esophagus properly, and without risking to fall. I need to put one foot up on the outside ledge, but the other deep down in the room, for safety. Worked today at least.
Reasons to be cheerful:
a) Still butterflies around, even in the cold mornings. Never been more than a few, I’m a bit disappointed I couldn’t attract more insects.
b) Nice to keep seeing the blackbirds back, flurrying scaredy-cat, but also bathing regularly,
c) Squirrel chattering in the cherry, but didn’t stay.
d) Every one minute stint of robin singing wakes hope of more.
e) Duey came up inside of a few inches of my sticking out foot. But I know if I get him some sunflower seeds, he’ll be gone.
f) His wife came too after, and kept on longer, and I was actually able to sneak in and back out to put the seeds out a yard away from me, and then she came. I noticed when she comes on the balcony that her eyes seem to have more white around the pupil than Duey has, and definitely if she has I think she may have a black stripe at the bottom edge of the folded wing, like Duey and other pigeons have, but if she has it’s hidden. Difference between pigeons or between male and female? Have to check with the other pair once they’ve finished breeding and they’re not chased aways so much.

Simplified: Trying to get apples from a bag to a tray was a trial, so I put the bag in the tray, that was easier…
Foggies: … before I did that I dropped one apple, during these 5’ I dropped 6 things altogether and had to pick them up, so Ache up to 5, altho I was feeling good beforehand, felt like “doing stuff”…

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-25 Monday - recovery? No way, just small variances on a low level. RR/supp changes? Quite good, now I need to check even more often again to make sure.

What … worked / went wrong … today:
“Feverish feeling time” seems to be 18:00 to 20:00 every evening. That would be similar to the tiredness feverishness I’ve had, but this feels “sicker”.
Right rib cage has added, so quickly treating that in all 4-5 ways, pressing, stretching, massager, arnica & praps heat.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down: (only once at night)
Jump out of hamster wheels:
Self-treatments:
Wall sits: - short to keep backlash down.
Balance exercises:
Prepare supps by 15:00: 19:45 ()
Back exercises by 16:00: - slowly with many breaks at 21:30, but completely ()
Encapsulating by 17:00: , 19:10-25 ()
White/blue lip massage / puckering: , FWIW
Jaw tendons: massage, arnica, whatever…

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Sunday night /(), sleep Monday night , 1-2 bites ().

Today working mainly on … time management, self-treatments, RR, energy, new symptoms.

Yeah, working on energy: Dosing activity lower. And considering going to my wife’s doc instead of mine. General time/stress management improving, self-treatment time management is lax, but I get it all done just in time, new small symptoms (jaw, cough,

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅ - need to keep a closer eye on the evenings, though, before 20:00 was slightly high. Or everything: I may be missing something if I only check when I think it's high. Today I measured at 13:00, 14:00, 20:00 and 22:00-8:00.

|07:30:00|135|83|58||
|12:39:00|147|81|68|moving|
|12:41:00|142|81|63||
|12:42:00|142|85|66||
|12:43:00|128|80|63||
|13:50:00|150|95|64|after garden pics pain 5 and loo|
|13:52:00|123|86|65||
|19:51:00|144|86|66||
|19:52:00|146|85|63||
|19:54:00|139|85|66||
|19:55:00|138|85|64||
|22:17:00|147|89|61||
|22:18:00|137|84|60||
|22:19:00|148|88|62|after moving and undressing|
|23:53:00|130|80|62|before and…|
|00:46:00|118|85|61|…after moving, 6, plants|
|02:27:00|117|73|64||
|02:29:00|120|75|63||
|03:59:00|99|76|67|<100 3-5?|
|06:21:00|123|78|66|headache, altho not that low? (Or is it just higher from moving)|
|07:36:00|127|73|66|headache for an hour|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT only 5', winning to :0 (moving 20%, talking 20%, counting 0%) ➔ 80%/5-6 (❌❌), 20' gardening/moving ➔ 80%/5 (❌), talking 5' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌. White lips60-80% (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 7h55, up 4x (1h15), all deep. One long break, not sure why that seemed necessary, but it worked out well. Ah, I've remembered: What I did was probably good for the UTI. Headache starting 2:25 till 8, don't know why, unless it's that the BP had dipped more than the measurements show. ✅, everything else OK ✅ ➔ getting up: 75-80%/3 ✅.

Sleep 22:20-7:30
23:45- pee RR 6 plants -0:45. 2:25 balance 30%, headache 10%.
Sum: 1h40+7h30-(1h+5+5+5=)1h15 = 9h10-1h15 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅?: Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update 24th: New opinion/appt? Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

Esophagus block at 15:15 with a bit of sweet potato, but felt I should wait for it to go thru, even if it takes a time.

4) UNDER CONTROL ✅ (attention necessary (✅) - GI with feverishness will be a bug):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
a) Made sure I tried to move a bit in between, cos once I’ve rested I feel “OK”, but then that OK dissolves inside of minutes.
b) Thursday morning feeling really bad after guinea and finishing off 2 work mails, but then better after eating, shouldn’t underestimate that, and that might be a reason to stop the Time Reduced Eating by delaying the 1st meal.
c) Not sure if I’m up to phoning the doc’s office today, but I’ve looked up the number. It’s my wife’s, who immediately sent me to hospital when I had my vertigo attack on Aug 9th, and seemed very caring.
d) Need to start doing more for my jaw tendonitis. But Monday night, Tuesday morning it’s my right rib cage that needs focusing.
e) My hands have started to hurt and be dry again the past few days. I just realized that’s cos I was by mistake using the wrong soap, instead of the “citrus & olive” I need. Maybe I should chuck the other one away. Well at least write something on it!
F) 2 major thoughts about why all the small observations about the birds, the bees, the flowers (like the following) are so important to me: As I hardly anything else, this is my way to make my new world my new home. Like when I used to cycle thru all roads in a new town I’d moved to, to know where things are, find nice parts, and feel at home there quickly. And…
G) These small observations are the kind of “excitement” that now can fuel and satisfy my curiosity and wish for progress. Same way as being pleased about small bits of progress with my symptoms are important.
They are parts of my conscious efforts to cope with and form my environment.
Reasons to be cheerful: Mainly bird stuff
a) A seemingly new Pigeon, Starry Left, visited me, small white spots, and only sometimes a black wing stripe visible, so I believe female - but was confident enough to come up fairly close and get the rest of the sunseeds that Duey’s wife had left this morning. It just came to me I think I called Duey’s wife Bobby cos the white spots were like a bob haircut. But Starry Left’s right side is sort of Bobby, not sure yet if it is praps Bobby, just confusing cos asymmetrical. It would explain why the black stripe isn’t visible (now), the white around the pupil is big and she’s confident to come near (the wife of the other pair never ever came this near). The 2nd from bottom of the 4 white stripes on the right side is sometimes shorter, sometimes it’s exactly a precisely cut bob, depending how she holds her neck. Seeing her again Tuesday morning, I’m now pretty sure Starry (left) is Bobby (right).
b) Squirrels playing up and down the cherry and cornel cherry again. All these exciting ? are keeping me from eating!
c) Subadult Blackbird was on the right Feeding Place for a long time (cos I was hidden), ate and dreamt, until neighbour disturbed.
d) Just saw 2 great tits fly in and out of shed hole, I’d never thought they’d go in that. I heard a different call this morning, my wife said it’s a great tit, and sure enough it was, haven’t heard that call for ages tho.
e) 2 dunnocks playfully sped past me, the older subadult-male blackbird is in the firethorn again - so shy, don’t look! Just listen to flurries or praps watch from the cellar again. One of the 2? younger subadult ones is near the water, now 2. Great and blue tits speeding around, now looking for insects in the buxus, hope they can keep it cleaner. I just realized seeing a blue from near that they have much less black on the wings as well as breast, explaining why we call a great tit “coal” tit.
f) Duey is on his way towards me, cos after his look from afar I put out some oat flakes for him. Gotta be careful not to move my hand to my nose too quickly, when it’s itching. Oh dear, the other pair have to watch out now, one just tried, but got chased away immediately. Duey is definitely much bigger than BobStar, and has the pronounced black stripe, but I think the white of his eyes is just as big as hers. Another one comes down further away, Duey doesn’t react, so it’s BobStar, and sure enough they come close. Ooh, a 3rd one is going to the food, who is it? Duey and BobStar are in the grass, not reacting. Female from the lesser white neck, but with a visible black stripe as opposed to BobStar.
g) Lovely wispy clouds today.
h) Nice to see the birds using my sculpture as a landing place, also using a (sort of?) metal bird table with water in to get at the firethorn berries.
i) Baby pigeons squabbling in full sight in a nest in a climbing plant next door.
Simplified: Watching esp. Blackbirds thru the cellar window allows them more privacy. I do understand that being looked at for longer signals danger for them.
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-26 Tuesday - recovery? A bit. RR/supp changes? Seemed OK, but laxer with measurements than intended.

What … worked / went wrong … today:
Managed 12’ of TT at 11:00 and at 17:45
Jaw, cough, UTI & ribs all improved, all needs continuing.
Still reduced weight and usually pretty quickly satiated.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down: (quiet anyway)
Jump out of hamster wheels: (at 16:20 I realized there were too many work mails coming in on me, so jumped out. Next I’ll approach from a distance and prioritize them and only do one.)
Self-treatments:
Wall sits: a few seconds, plus 2x12’ TT.
Balance exercises:
Prepare supps by 15:00: , but 19:00, OK-ish ()
Back exercises by 16:00: , but at 21:00, with enough energy to do them properly ()
Encapsulating by 17:00: 16:00 (not encapsulating, but ordering, which is “the same”).
Treat 1) jaw tendons , 2) cough , 3) UTI , 4) ribs , ignore lips .

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Monday night , sleep Tuesday night , 0 bites () - too lax about putting oils on, but was lucky.

Today working mainly on … time management (OK-ish), self-treatments (the new ones), RR (not enough), energy (dosing well).

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, always down quickly to 140 or under, at night no headache and not <100, but 100-110.

|11:27:00|144|91|75|after pee moving|
|11:38:00|129|83|71|after moving|
|11:49:00|135|88|69|resting actively|
|11:52:00|139|88|69| „|
|11:53:00|149|94|69|thinking of doc appt|
|11:55:00|135|85|69|thinking a bit less about doc appt|
|11:56:00|140|83|70|thinking about birds and sculpture|
|12:04:00|141|83|72|blogging|
|21:39:00|147|87|61|pee urge|
|21:44:00|152|97|63|after pee and blow drying, cuff hurting|
|21:48:00|139|89|61|cuff hurting, uncomfy in back too|
|22:46:00|99|71|61||
|23:19:00|108|73|66|yucky back, like before.|
|00:49:00|111|71|63|p3 all night up to now.|
|01:50:00|99|68|68||
|02:33:00|108|67|63||
|03:50:00|111|71|64||
|05:20:00|99|69|66|100-110 all night|
|07:10:00|131|89|67|loo urge|
|07:27:00|141|94|69||
|07:40:00|142|82|64||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2x 2:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/5 ❌, gardening/moving ➔ 80%/5 ❌, talking 15' ➔ 80%/5 ❌, music 1' ➔ 70%/5 ❌. White lips 90-70%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 8h30, up 7x (35'), all deep ✅, but annoying to have to get up so frequently (always strong pee urge, but a bit yucky lower back too, despite proper back exercises), sleep stints were 40', 30', 1h25, 55', 40', 1h10, 1h25, 1h40. ❌. I believe back to sleep quickly each time, but I kept feeling the time was short, so obviously it wasn't enough. Maybe I should have a look at the med my clinic urologist prescribed after all. Back often being yucky, makes it hard to keep still for BP measurement, so increases the RR ❌. So the short stints / frequent breaks may also have been my back. That I keep feeling is. Everything else OK ✅/❌, 80%/2 ✅ ➔ getting up: 80%/2 ✅.

Sleep 21:55-7:00 Sum: 2h05+7h-(7x5=)35’ = 9h05-35’ = 8h30
23:16 yucky back, like before.
0:44 p3 all night up to now.
131 loo urge

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅?: Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep27th: Wife's GP..... Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control, except at night high frequency from drinking a lot, and yucky lower back from sitting on it too much, both need working on. Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
Stopped TT just in time.
Reasons to be cheerful:
18:30 Robins are in the house, ehrm in the garden, what beautiful song!! And answering to a second nearby, so continuous and double - awesome! Again later, again in the morning. Wife says cos end of summer, I’m hoping beginning of winter, so more and more from now on…
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-27 Wednesday - recovery? Yes, a little, considering doc appt. another trigger, but managed well. RR/supp changes? Tried checking more, and was good, just 16:10 seems a bit tricky.

What … worked / went wrong … today:
New doc is actually planning on doing 3 things for the unresolved still slight cancer suspicion. This is something new, what if he really does!?
15’ TT in the evening went OK too.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down:
Jump out of hamster wheels:
Self-treatments:
Wall sits: , but 15’ TT (and new doc)
Balance exercises: () - too short, but again at night as a test .
Prepare supps by 15:00 : 19:00 ()
Back exercises by 16:00 : 21:00 ()
Encapsulating by 17:00 : 19:30 ()
Treat 1) jaw , 2) cough , 3) UTI , rib OK , ignore lips.
Slight clavicle problems at night.

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Tuesday night - but 7 annoying breaks, sleep Wednesday night , 0 bites ().

Today working mainly on … time management (OK), more self-treatments (new ones good), RR (but only in the evening when it seemed high), energy (dosage).

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅)✅ A bit higher at 16:10 150-140-155 thru moving and discomfort.

|16:09:00|150|99|68|moved, typed|
|16:13:00|140|88|69||
|16:12:00|155|94|68|having to hold myself cos of back|
|19:17:00|139|85|68||
|20:39:00|153|97|66|after stress talk|
|20:47:00|164|98|70|after moving, eating etc. - I should only group readings once I’ve started resting!|
|20:48:00|151|91|67||
|20:50:00|148|94|69||
|20:52:00|143|88|65||
|20:53:00|147|87|65||
|20:54:00|142|86|65||
|20:55:00|147|85|65||
|20:56:00|149|86|64||
|20:57:00|141|83|64||
|20:58:00|141|83|63|Inside of 9 minutes is perfect|
|21:06:00|141|85|65|1x later, but after moving|
|22:06:00|154|89|66||
|22:07:00|145|92|67||
|22:09:00|142|79|66||
|22:10:00|138|77|66||
|22:17:00|151|86|65||
|22:13:00|128|89|69|down in 7 mins|
|23:35:00|137|72|69||
|23:36:00|114|71|65|down in 1 min|
|00:37:00|110|73|64||
|00:42:00|129|80|64|arrh|
|00:44:00|122|74|57||
|00:45:00|123|75|63||
|01:27:00|99|66|63||
|01:38:00|112|68|65||
|01:50:00|133|76|56|arrh|
|01:51:00|117|79|56||
|03:20:00|112|78|64|arrh|
|04:10:00|107|73|60||
|05:46:00|106|70|58|nauseous sinus headache, probably histamine rather than BP|
|06:46:00|145|78|58|After Up, windows, bed, pee|
|06:49:00|104|67|62|immediately after, down in 3 mins|
|06:59:00|144|84|67||
|07:00:00|124|77|60|down in 1 min|
|08:14:00|144|86|57|after poo, feeling very shaky|
|08:22:00|140|82|62|after typing this fast, arrh|
|08:23:00|140|82|55||
|08:25:00|129|86|58||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, but talking with doc was 30' "on cortisol" and first I was OK as long as that held I was OK, then needed a few hours rest, music 1' ➔ 60%/5 ❌ (I think, didn't even feel like trying). White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 7h27, up 6x (53'), all deep. 6 before and FCS at 1:30 to try to reduce sleep breaks didn't. 1:35 FCS p0 cos of >GABA -1:48. 4:05 dry mouth cough. 5:43 106 wonky again, but tightrope walk OK, sinus headache 20% from 2x100g baked beans, nauseous when getting up. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅. I feel sleeping shorter was better for energy - or is it the other way round?

Sleep 22:15-6:35 Sum: 1h45+6h35-(5+8+25+5+5+5=)53’ = 8h20-53’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Stress from wife cos of stopping the candesartan in the evening. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep27th: Wife's GP: Seems very helpful, as well as nice. Recommends taking the CVD meds of course, but will get an appt for me with a cancer doc and ask my GI doc if he recommends another enteroscopy, last gastro was Feb22. Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)): jaw ✅ - reduced to 30% just by pressing the whole hurting area from above the joint to 4cm away from it, 2) cough ✅ - I'm very surprised that using umckaloabo and bronchipret minimized the cough completely immediately, even when I get a bit cold ✅, but I'm keeping it up, 3) UTI ✅, but this time carrying on with at least a few calendula essence treatments a day, I'd used a pad cos of small pee drops a few days, wife appreciated that, but told me to stop it again, unnecessary. Rib completely OK now ✅, but a small neck/clavicle spot started up at night, pressing got it down ✅:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

The three or five second rule" for eating something after it’s fallen on the floor is controversially/partly debunked by research. No, some types of bacteria can infect some types of food (esp. moist) from some surfaces (varies: one says less on carpets, another doesn’t) almost immediately. But yes, in one minute they can often do this much worse than in 5 seconds. And generally: Public flooring is cleaner than we think, and touching other places like refrigerator handles, wallets and light switches is not to be neglected.

The solifenacin for my OAB bladder has dry mouth as the most common side effect (but one study said ‘only’ 11%, whilst I’m always lucky in the draw). In my case, this could then cause more waking from that, from severe dry coughing, mouth sticking together. Apart from that constipation wouldn’t be a problem, UTI at the moment after the bladder exam and infections would. Hyperthermia from decreased sweating, hmm, no idea. Somnolence (sleepiness or drowsiness), and the succinate form is more likely to cause severe allergic reactions than the others.

It occurred to me, sort of an own ‘research’ hunch, that when it comes down to it, maybe all my treatments of local pains are at least partly types of “stretches” of the tendons (partly muscles): The single pressure from pressing and the regular quick pressure using a massager are both moving in and then out of the tendon

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
a) I need to vent a bit: Preparing my supps in the evening I got sad after the new doc appointment, cos I feel so left alone when they say things like “I don’t know anything about supps”, me sort of like “heck, well you may not know anything about it, but what are you gonna do to help me then?”
b) Another vent: My wife was happy I’ve now gone to her doc, a different one, but when we were talking it suddenly emerged that I’m not taking the 4mg candesartan for my BP at the moment, cos I feel it is reducing my night BP too much and I think that’s the cause of non-sinus headaches. She got worked up that I hadn’t told her or rather she says that “we hadn’t agreed on it”, here her way of saying ‘do what I say’. That caused me difficulty with eating, had to take a break. But the problem is she hardly ever wants to talk about health details, cos it’s all too much for her.
c) Tailbone yuckiness at night may be from too long lying on my tailbone during evening back exercises, so earlier is better. Today I kept the sitting down.
d) I should only group RR readings once I’ve started resting!
Reasons to be cheerful:
a) Robin singing again in the evening,
b) Something shuffled in the dark behind the suneyes, I’m sure it was one or more of the subadult blackbirds.
c) The talk before she got narked was lovely.
d) Squirrels back in the morning, been seeing dark squirrels all around in the neighbourhood the past days. They make such a weird noise!
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-28 Thursday - recovery? Bit more energy, I think sleeping <8h helped again, but difficult to know when time’s up, cos I always feel tired however long I sleep. RR/supp changes? Quite good, but got to check a possible regular spike at 16:00-18:00.

What … worked / went wrong … today:
My weight is still around 80kg after all.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down:
Jump out of hamster wheels: ()
Self-treatments:
Wall sits: , but TT twice
Balance exercises:
Prepare supps by 15:00: , 20:00 ()
Back exercises by 16:00: , 21:00 ()
Encapsulating by 17:00: , 19:00 ()
Treat 1) jaw , 2) cough , 3) UTI .

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Wednesday night , sleep Thursday night , 0 bites ().

Today working mainly on … time management , better self-treatments (), RR (), energy ().

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅)✅ - watch 16:00, 28th: (✅)✅ watch 17:15 (but I'm sure I was moving) and at 21:43 my sitting got more and more uncomfortable, that's something I need to care about more.

|13:55:00|135|87|64||
|13:57:00|136|85|62|typing|
|17:18:00|166|94|65||
|17:25:00|152|87|60||
|17:25:00|149|88|62||
|17:26:00|150|92|64|This was after somehow moving around, shortly before TT|
|21:43:00|131|83|62||
|21:44:00|134|84|62||
|21:49:00|142|81|61||
|21:56:00|136|86|62||
|21:57:00|141|84|62|sitting uneasy, irritating|
|22:52:00|144|85|64|undressed|
|22:53:00|142|87|62||
|22:55:00|138|88|62|unangenehm, yucky|
|00:09:00|131|77|59|After going downstairs to pee|
|00:10:00|134|80|57|same|
|01:12:00|102|57|69|arrh|
|01:59:00|123|80|60|Cold Shower|
|02:14:00|118|70|61|After cold shower|
|03:44:00|134|79|52|during pee|
|03:46:00|108|65|63|after pee|
|05:40:00|111|87|73||
|07:26:00|174|77|59||
|07:27:00|129|78|62||
|08:17:00|150|91|66|nauseous sinus headache 20%, pics in garden and slight pee urge|
|08:52:00|146|94|67|after TT with pain 5-6|
|08:56:00|146|90|61||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2:1, 1:2 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌. White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 7h26, up 6x (45'), all deep, cold shower was cos of back again I think, cos witting felt yucky before going to bed. (✅), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:55-7:06
0:07 10’ pee downstairs
-1:09 10’ 102!
1:56- 123 before FCS -2:11 20’ 118 after cold shower
134 during pee, 108 after -3:43
Sum: 1h05+7h06-(5+10+20+5+5=)45’ = 8h11-45’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: can't remember if there was anything, I think only short. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Now I’ve got my first LDN, 60x0.5mg, I’m again looking for information from people I can feel I trust. Masterjohn doesn’t say anything about it, but by chance I found a German video by “Alexandra” with FM, ME/CFS, MCAS and more, who here says the German post vac centre in Marburg also now prescribe LDN, that’ll be comforting for my wife. Her latest update here is it didn’t help for pain, but for exhaustion and many other symptoms. She mentions nattokinase which I don’t take, so here is what she’s taking. At the pharmacy an ex-colleague I met said her daughter has auto-immune and stuff since a stem cell donation, also “invisible”, no energy etc.

Quality of life: 85%, “Feeling well”: 70-80%.

Lessons in self-care:
a) Talked too much (4’) with mate before TT, and too tired, so thought better to stick to 2 games of TT, since I started with a pain of 3-4. (early Friday morning)
b) It’s difficult to emulate my sofa outdoors. I’ve got loads of old pillows out of the cellar and draped them around me, now I’m sneezing from dust, hopefully not mould. Not good when it starts raining. I need some kind of chair with something a bit soft on it, without handles. But I’m already feeling comfyer, altho I’ve left the plastic bags around them first. (Friday morning)
Reasons to be cheerful:
a) Red sky in the morning (- shepherd’s warning? - yep, it did rain quite a bit.)
b) Putting conkers in the bowls of water in front of our house together with the last suneyes, cos I love that shiny brown - let’s see how long that will last in just water, don’t feel like preparing them in any way (e.g. 25% glycerine).
c) New flower in the garden, I’m excited, the app was telling me it was something that I couldn’t fully believe it was, and now the blossoms are turning out purple instead of yellow. Might be a new different form of campanula/bellflower. But one of the suggestions is called ‘late Michaelmas daisy’ in English and … whaddayaknow: today is Michaelmas (German: Michaelis)!
d) Another seeming new subtype of sunflower has now fully bloomed, but this time the app is surer than with the previous one that it is a Jerusalem artichoke/topinambur.
e) Other mysteries I still couldn’t solve yet (either, Michaelmas isn’t more than a hunch). Like 3x single orange berries on a stalk without leaves in bed “R”. One with tiny purple flowers that reminded me of veronica seems to have gone, but the white veronica is still there, and maybe I can still identify the purple ones.
f) Saw a jay and a carrion crow fly off after collectin guinea pig grass, but couldn’t find if they’d got any carrion they were feeding on.
(All Friday morning)
Simplified:
My table tennis mate is picking up conkers (chestnuts) for me.
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-09-29 Friday - recovery?: Yup, still fairly OK today, praps a very slight improvement or at least fairly stable, back exercises for instance no problem any more. RR/supp changes?: BP spike at least at 17:00-19:00, praps all afternoon, and looking back possibly every day, just it’s a time when I didn’t always check and even if I did, not thoroughly. So this needs cornering, analyzing and targeting (passiflora and magnolia bark later? Can I improve it by eating earlier?

What … worked / went wrong … today:
Too high blood pressure in the afternoon, but good in the morning. Supps too late, screen curfew too lax.
Early Saturday morning I massaged the 3 hard painless lumps I got from or after the bladder exam to try to “uncrease” them, as they seem undramatic, 1 may be better.

Habit encouragement… :
Time (= stress) management:
Keep blog time up:
Keep forum time down:
Jump out of hamster wheels: ()
Self-treatments:
Wall sits:
Balance exercises: - left is always worse than right.
Prepare supps by 15:00: , 19:00
Back exercises by 16:00: , 21:45, but well ()
Encapsulating by 17:00: , 19:30
Treat 1) jaw (), 2) cough (), 3) UTI (). All gone, so lax today, everything, but only short and only 1-2x, instead of 3-4x 2’.

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Thursday night (), sleep Friday night , 0 bites ().

Today working mainly on … time management, better self-treatments, RR, energy. Screen curfew needs re-improvement!

GABA night (22:00 to 6:00) = 8x0.3 2.4g vs. day = 2x0.6+3x0.3 = 2.1g. That’s around 4g, a record amount, but it’s got my bladder pain down again and seizures apparently too. Praps reduce all the same? When I took less at night due to reduced breaks I got bladder pain again a week or two ago.

Makes absolutely no sense to take a pee retaining med whilst I’m not sure I’ve got the UTI completely gone. Maybe the frequent pee sleep breaks are a result of the UTI or of the bladder exam, at least they are good for that.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th: ✅✅. 27th (✅)✅ - watch 16:00, 28th: (✅)✅ watch 17:15. 29th: ✅(❌)✅ best to watch all afternoon the next few days, risky time? Night 23:35 was a bit high, and around 0:40 it spiked cos of a cold shower. BP gadgets: Mine is tested as one of the best, otherwise I'd've thought about getting another one, cos of my high variability. I found it saves time if I put the cuff on tighter. Not sure if the temperature makes a lot of difference or hardly. Sitting "comfy" is often hard, uncomfy for back, gotta work on that. Wondering whether I should check less and if so when.

|10:33:00|182|104|69|guinea, exhaustion/Ache 5 and urge, hardly headache, thirsty|
|10:46:00|160|97|69|after poo, dead spider out on windows sill, photographing it (scared phone’ll fall)|
|10:47:00|130|83|66|why so low? (sittin?)|
|10:48:00|137|91|66||
|10:56:00|135|82|67|I can relax better on my sofa today, maybe I need to emulate that outdoors|
|11:08:00|139|81|68||
|11:09:00|129|75|65||
|13:12:00|152|85|65||
|13:13:00|134|82|57||
|13:14:00|140|84|59||
|13:15:00|146|78|62||
|13:16:00|130|82|56||
|15:39:00|135|92|67|moving|
|17:06:00|183|107|73|forum post, humid weather: slight danger for HBP it says as opposed to low, no problems for inflammatory rheumatic diseases, as opposed to degenerative ones|
|17:28:00|179|107|75|pee urge, arrh|
|17:30:00|173|95|62|during pee|
|17:32:00|178|103|68|moving back, sitting|
|17:35:00|167|100|70||
|17:36:00|162|92|67||
|17:36:00|166|96|65|Still going to TT, see what happens then|
|18:54:00|151|95|64|well it hasn’t increased…|
|18:55:00|153|94|71||
|18:56:00|158|94|69||
|18:57:00|138|90|66|… and here it decreased|
|18:58:00|144|90|63||
|18:59:00|160|95|68|Why back up, weather?|
|19:00:00|140|86|68||
|19:01:00|140|87|62||
|19:03:00|141|86|64||
|19:04:00|134|93|61|better from reading forums & mails!?|
|19:05:00|138|91|66|Juckig & alarm, 11 MINUTES IS OK I THINK, BUT THE DPB IS STILL HIGH|
|19:15:00|154|90|76|reading new post to me, sinuses burning|
|19:16:00|140|87|60||
|19:17:00|150|90|63||
|19:19:00|143|87|64||
|19:22:00|147|90|61|why is the DBP so high altho I’m not using my muscles?|
|20:04:00|147|91|58|moving a lot though|
|20:33:00|146|87|56|WHILST phoning with kid! (end of 15‘)|
|21:16:00|149|91|60|after eating, moving around & to sit down|
|21:17:00|142|91|59||
|21:19:00|142|91|63||
|21:20:00|152|87|61||
|21:21:00|133|86|62||
|21:25:00|144|91|61||
|21:32:00|142|87|60||
|21:33:00|140|89|60||
|21:40:00|142|87|60||
|22:34:00|129|82|69|I think 23:34, bed 22:25|
|23:36:00|137|79|65||
|23:37:00|125|76|62||
|00:20:00|122|76|67||
|00:21:00|113|70|63||
|00:42:00|133|88|62|FCS|
|00:43:00|140|88|58||
|00:45:00|140|83|60||
|00:46:00|129|80|54||
|00:47:00|127|84|56||
|00:48:00|142|87|59||
|00:50:00|137|87|59||
|00:51:00|137|87|58||
|00:52:00|123|82|56|after FCS and multiple RRs|
|01:05:00|123|86|58||
|02:16:00|104|71|69||
|03:45:00|98|65|59|Rhodiola + magnolia not with B-supps today|
|04:27:00|101|79|65||
|06:43:00|106|77|64|up, |
|07:27:00|131|78|58||
|08:11:00|166|94|59||
|08:12:00|157|96|59||
|08:13:00|148|87|52|why so slow? Like vertigo day|
|08:14:00|143|91|54||
|08:15:00|147|94|58||
|08:16:00|147|94|55||
|08:17:00|147|90|54||
|08:19:00|144|94|58|8 mins|
|08:56:00|162|94|68|Moving & typing a lot|
|08:58:00|152|87|63|lie hoodies on me|
|09:00:00|152|84|60||
|09:01:00|136|86|60||
|09:02:00|143|84|58|flush, not eaten yet|
|09:04:00|133|75|59|Eating 9:03, 8 mins|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20% (too much), counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 1' ➔ 70%/4 ❌. White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “92%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 1h very slow, 2h slow, 1h medium/quick

SLEEP (click for details): 7h20, up 6x (45'), all deep ✅. 6:30 nostrils 0/20%, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:25-6:30 Sum: 1h35+6h30-(45)’ = 8h05-45’ =
-0:49 after FCS and multiple RRs
-1:02 after work thoughts (boss vs. voluntary work) → NSDR ('‘5’)
2:13 104.despite cough. -2:15

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Talking (too much myself too, that's one of the problems that I can't manage to curb myself!). Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)). I'm positioning my litres of almond milk so I can see whether it's 3 or 4/d. It's 4. No wonder I have to pee so often if I'm drinking 4L/d and also drinking at night for the 0.3g GABA! Also slightly enlarged prostate.:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%, “Feeling well”: 85%.

Lessons in self-care:
Feeling quite good, getting much more things done, even tho talking is still exhausting.
Reasons to be cheerful:
a) Blackbird singing soft song much longer and nearer, like in the firethorn not far from where I’m sitting.
b) Collected more chestnuts to decorate around the house.
c) Managed to phone kid at last, even for about 15’ with not too much backlash.
Simplified: I’m used to putting the vibration on with my alarms, but the amount I’m now using them again with my new phone, I’ve realized it’s the vibration which is annoying, not the gentle sounds I’ve chosen. So I’ve taken that off most and will add if I feel it makes me do something better - maybe alternating.
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[rosebud74]

Hi JayCS
I hope you are feeling less sad today. I am afraid doctors are not trained in supps well they are not in England, because nothing shows up in tests they do not seem to have time for us.

It is not easy when we feel all alone when nobody understands us or wants to talk about health issues, which are important to us. My brother when he sees me or phones me tell me to think positive, its mind over matter, it is just pain exercise more and stop winging!!! He just wants to walk in my shoes.

[JayCS]

Hi Rose, thanks so much for your support!
At least we’re not alone feeling alone, ey?

Yeah, my previous GP at least pretended to be a naturopath, but when it came down to it, hardly used any of his knowledge on me, except starting with rhodiola for blood pressure. But first start with him before the fibro diagnosis he promised to get me a rheum appt. and 3 months later had obviously forgotten. And so often disappointments, forgetting many important things, talking to me at eye level about his problems, esp. as doc, at length though, boy did he have time for that… So if I do finally switch GPs I won’t be missing that, but I will miss not being able even to talk about supps, at least I could mention a few things, and he wanted my list (but never looked at it) and asked me to educate him on some stuff (but never read it). And going to the best alternative practitioner(s) I could find in my town didn’t help either, so I felt as if I were in outer space…

Oh well - wish me luck with my LDN trial up next…!

[JayCS]

2023-09-30 Saturday - recovery?: Stabilizing low. RR/supp changes?: The spikes seem to vary.

What … worked / went wrong … today:
Esophagus block, maybe from the alarm rushing me to eat more? (And sweet potatoes is a typical culprit.) Could have tried waiting, but didn’t feel like it. Wife thinks 3x/m is “too often”.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels:
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: but 18:30 , back ex. by 16:00: , capsules by 17:00

How was I today?: Feeling 80-90%-ish (), energy today (), improving, sleep Friday night , sleep Saturday night .

Today working mainly on … time management , better self-treatments , RR , energy , screen curfew .

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅: 16:00)✅ , 28th:(✅: 17:15)✅. 29th ✅(❌)✅ afternoons risky? 30th (❌)✅ today the morning, and also the night was pretty high, 16-18 was OK, a peak period despite rest before 12, but did "end" on 140 after 8 mins, similar 20:25-20:45, however average of 138/86. It's difficult to check it regularly when we're sitting together, cos it annoys my wife, but praps like a 24h unit once every 15'? I need to write down what I'm doing more at the critical times, like in the evening I think I was eating and I ate late, but can never remember exactly.

|09:31:00|157|95|60|After eating, higher than expected|30.09.23||
|09:33:00|147|86|60|still flush|||
|09:34:00|152|92|61||||
|09:44:00|146|91|58|after typing|||
|09:45:00|154|89|60||||
|09:48:00|146|87|59|Cold, 17 mins|||
|11:19:00|159|81|68|after poo, warm, no flush any more|||
|11:20:00|153|83|65||||
|11:21:00|133|83|66|relaxed my left leg on stairs|||
|11:21:00|128|85|67|2 Mins|||
|11:47:00|159|80|66||||
|11:48:00|143|87|64||||
|11:49:00|139|79|62||||
|11:50:00|158|80|63||||
|11:51:00|139|82|60||||
|11:52:00|146|79|63||||
|11:53:00|134|82|62||||
|11:54:00|151|78|63||||
|11:55:00|140|83|61|8 mins|||
|12:15:00|142|96|65|working|||
|12:24:00|145|95|64|working|||
|12:32:00|145|90|61|working|||
|12:36:00|141|86|62|directly after work|||
|13:31:00|166|90|66|up and down stairs several times, moving stuff|||
|13:37:00|150|95|65||||
|13:39:00|142|83|63|arrh|||
|13:41:00|142|90|65||||
|13:45:00|140|80|67||||
|13:46:00|139|83|66||||
|13:47:00|139|85|66||||
|13:48:00|153|85|64||||
|13:49:00|142|88|65||||
|13:50:00|131|86|65||||
|14:07:00|152|90|62||||
|14:08:00|144|91|65|OK, considering I’m moving cos my alarm is telling me to eat|||
|15:27:00|151|94|74|after regurge|||
|15:41:00|140|98|72|arrh|||
|17:20:00|141|85|74||||
|17:21:00|125|77|73|arrh|||
|17:23:00|134|76|68|Well this is good, considering it’s the critical time…|||
|17:41:00|149|90|66||||
|17:44:00|141|89|64||||
|17:47:00|138|82|63||||
|17:49:00|136|91|62||||
|18:49:00|137|88|58|researching|||
|18:53:00|140|88|61||||
|18:59:00|134|89|56||||
|20:24:00|146|96|59|Keep missing it when we’re sitting together|||
|20:25:00|151|93|60|I think I was moving quite a bit|||
|20:26:00|142|91|56||||
|20:38:00|145|94|67||||
|20:40:00|126|82|59|Well, let’s see what the average then is|||
|20:41:00|137|85|59||||
|20:44:00|144|85|59|138,4|That’s under 140|141,375|
|20:45:00|140|85|57|86,2||88,875|
|22:45:00|124|85|58|before sleep|||
|00:02:00|115|74|57||||
|01:00:00|126|73|61|arrh|||
|01:37:00|124|78|58||||
|02:54:00|113|73|63|arrh|||
|04:55:00|118|68|58|Relatively high all night, why? Sinus headache till ?8|||
|06:15:00|119|77|58||||
|07:43:00|118|77|66|Same, which then counts as low, after getting up, even swinging out of bed, blinds & bedstuff…|||
|08:42:00|159|83|65||||
|08:44:00|124|74|58|low pulse before eating|||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2:1 (moving 15%, talking 10%, counting 0%) ➔ 80%/2 after 2 games, then ➔ pretty suddenly, starting with one hit 70%/6 with PEM (❌), gardening/moving ➔ 80%/3 (❌), talking back down to 5' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌. White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "12h rest"), 2h very slow, 2h slow, 0h medium/quick

SLEEP (click for details): 8h25, up 6x (30'), all deep, nauseous sinus headache & nostrils since about 5 ✅, everything else OK ✅, but still 70%/2 (✅), ➔ getting up: 70%/2 (✅), don't know if it was the headache, sleeping too long, too high blood pressure at night or what else...

Sleep 22:40-7:35, Sum: 1h20+7h35-(30)’ = 8h55-30’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Talking I think it was. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Block again from sweet potatoes maybe rushed by my phone alarm reminding me to eat? (Didn’t want to wait that long this time.) (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today: a BP longer drop after getting up and after eating isn’t that normal, both are compensated for, eating by constriction and faster heartbeat.

(I was wondering about a day where I had under 60 bpm upon awakening, and then higher upon eating.)
Orthostatic/postural hypotension: “You have orthostatic hypotension if your blood pressure drops more than 20 millimeters of mercury in systolic pressure or 10 millimeters of mercury in diastolic pressure within three minutes of standing up.” (But before it says there’s no number, it’s individual, so I’m confused.)

Orthostatic Hypotension (Postural Hypotension)

“When a person eats, their body redirects blood to the digestive tract to aid with digestion. This causes a temporary decrease in blood pressure elsewhere in the body. To compensate, blood vessels outside of the digestive tract constrict, causing the heart to beat faster and more forcefully. This helps maintain healthy blood pressure throughout the body. Some people experience a persistent drop in blood pressure after eating. This happens when the blood vessels outside of the digestive system do not constrict. Doctors refer to this condition as postprandial hypotension, or low blood pressure after eating. A person with high blood pressure is more likely to experience postprandial hypotension.” High blood pressure after eating: Is this normal?

Quality of life: 85%, “Feeling well”: 70-80% (so down a bit)

Lessons in self-care: -
Reasons to be cheerful: -
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-01 Sunday - recovery?: Sleep Saturday night longer, not better, TT better, but sleep Sunday night after LDN slightly better, less breaks, and feeling better. RR/supp changes?: better, may be getting the hang of it. LDN?: 4-5 positives - so far so good.

What … worked / went wrong … today:
Bit foggy all day, 5’ service brought pain up to 5, let’s see how LDN goes… hmm… went quite well… despite not knowing how much is in the capsules, cos it says 0.005g instead of 0.0005g. so I took only a speck: less lower back problems, slightly less sleep breaks, felt better at night, just unusually a dead cat image in dreams, other dreams vivid/intense, but starting GABA was weirder and that calmed down quick. Plus energy improvement Monday morning, see there.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less (), jump off hamster wheels: () - not too long in them, but altogether a bit too much distraction.
Self-treatments: Jaw, wall sits , balancing , supps by 15:00: , I think 20:00 (), back by 16:00: () (partly 10:00, partly 22:00), capsules by 17:00: couldn’t be bothered, most are fairly full.

How was I today?: Feeling 75-85%-ish (), energy today (), sleep Saturday night () - slept fairly “well” but didn’t feel good, sleep Sunday night (LDN speck).
Really bad from 11:10-11:30 was sitting indoors to get better wifi to send off these posts reliably without glitching. Because I was near my neighbour’s door and he had his telly and radio on. Not too loud, but after a few minutes I started hurting all over, went up to 6. Not gonna ever do that again. Ear plugs or somewhere else.
Similarly bad was 5’ of service - with ear plugs.

Today working mainly on … time management (), better self-treatments , RR , energy ().

The HELP apheresis HHM questionnaire I was pointed to by healthrising and did Friday came back today saying I have severe HHM and need their “blood washing” treatment, see “research” below.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅: 16:00)✅ , 28th:(✅: 17:15)✅. 29th ✅(❌)✅ afternoons risky? 30th (✅)(❌?)(✅). 1st ✅✅, night dip took it's time, everything else fine, yesterday re-visited better than thought, depends.

|09:47:00|148|90|67|lots of moving, higher pulse after eating|
|10:10:00|151|86|65|lots of moving again|
|11:46:00|146|91|59||
|11:48:00|148|81|59||
|11:52:00|139|89|60||
|12:18:00|139|95|66|working. Pee urge (it’s from the cuff!!) arrh|
|12:22:00|149|83|56|after stairs to pee|
|12:24:00|135|87|56||
|12:28:00|135|91|56|lower heartbeat before eating?|
|12:47:00|165|96|59|after talking with neighbour (loud voice) for 5‘, and working|
|12:49:00|154|92|||
|12:56:00|139|93|56|working/tabs|
|13:21:00|159|99|56|after pee/stairs/surprise mail|
|13:23:00|138|86|56||
|14:05:00|150|91|63||
|14:10:00|122|80|75|up down up down pee urge|
|14:49:00|137|83|70||
|16:13:00|150|83|68|After stairs/pee, itchy face from hair|
|16:15:00|150|82|67|Take this seriously!|
|16:17:00|137|82|66||
|16:26:00|142|94|67|slight toothache|
|18:19:00|166|98|61|stairs down|
|18:21:00|150|97|60||
|18:22:00|149|85|62||
|18:24:00|139|85|59||
|18:27:00|130|80|60|8 mins|
|18:57:00|145|92|58|after service 5‘ hurt 5-6|
|19:01:00|153|91|61||
|20:28:00|141|98|59|EATING!|
|20:29:00|151|92|60||
|20:42:00|146|88|60|while eating, same as the past days|
|21:01:00|143|84|60||
|21:02:00|137|93|62||
|21:04:00|147|97|66||
|21:04:00|149|92|64||
|21:43:00|145|83|65||
|21:44:00|137|83|60||
|22:34:00|123|71|61||
|23:51:00|124|74|64|Least dip, 135 to 124 = 8% of 135|
|01:06:00|114|72|62||
|02:38:00|117|66|62||
|04:20:00|103|70|55|Lowest, strongest dip, 135 to 103 = 24% of 135|
|05:48:00|117|87|59||
|07:31:00|129|77|60||
|07:43:00|134|79|57||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. No TT :0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌ (a few minutes of hearing my neighbour's telly and radio on, and 5'+ in service). White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:

EXHAUSTIBILITY today: “90%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "14h rest"), 2h very slow, 0h slow, 0h medium/quick

SLEEP (click for details): 8h09, up 5x (30'), all deep, FCS not nec., so when I got up (LDN?). !0.05mg LDN . 2:25 5'+5' break: vivid dreams, but not that much more. Damp 20% with long sleeve on, but with it off (first break) sore throat 20%. "Feel better" than the last nights. 5:44 dead cat on street at aboout 4-5 (LDN?), nostrils/sinus headache 5%. ✅, everything else OK ✅, 85%/2 ✅, ➔ getting up: 85%/2 ✅.

Sleep 22:30-7:09 Sum: 1h30+7h09-(6x5)’ = 8h39-30’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: 5' service, and generally talking. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Oct 1st/2nd: Need a new uro appt. cos of the 1cm hard lump since the bladder exam. And a new dentist appt. cos a big filling seems to have fallen out again yesterday (annoying, cos it often falls out, but I don't want a bridge). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) I hadn't been mentioning it, but if I hadn't cold showered at night the previous 4-5 nights, my lower back unrest would have made me stay up longer, was very uncomfy - seems better with LDN??:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

a) When I got the HHM test back I was wondering how reliable, if it’s another bogus, looked at the research they linked to - it was pretty much their on, on researchgate, not pubmed, critical articles like this on bmj from 2022. After first excitement as it’d be accessible to me, I’m not at all sure about the cons.

b) Night time blood pressure dip should be 10-15%, mine is usually >30% from 130 to 95, so that’s like I think much more than normal, whether that’s necessarily a bit bad, like I’ve been thinking, I’m trying to research.
More about blood pressure (during sports, talking, eating, activities to reduce) tomorrow!

Quality of life: 85%, “Feeling well”: 70-85%.

Lessons in self-care:
a) To check my bp when together with my wife I could see if going into my room is “acceptable”.
b) At least on sunny days it’s much warmer outdoors than in my room (facing north).
c) I need generally to restructure what I do when now daylight is becoming scarcer and I want to keep use of artificial light down too. I can use the (south) balcony for reliable wifi rather than the staircase.
Reasons to be cheerful:
a) Squirrel float-jumping around the garden a few times.
b) Saw a bird of prey flying fairly high at 8:00, trying to find out what exactly it was, a sparrowhawk or goshawk, cos the tail was very long and slender, which would be a sparrowhawk, but it seemed bigger (so definitely a female) and flight was calm, slow and straight, which would be a goshawk. Later heard a pieeew in the garden. That would be a sparrowhawk. Also clarified today that kestrels kill with their beaks, sparrowhawks and others with their claws, so that’d confirm what I thought that it was one of our local kestrels that got the Kami and one of the blackbirds. Arrgh, our locals are not kestrels, they’re peregrines!! But both kill with beaks. (And sparrowhawks.)
b) I’m starting to get curious and interested in finding out the less common birds by their calls, not sure how to yet, but I’m in contact with our local ornithologist whose books I can get off of.
c) 5mg or 0.5mg LDN? I asked for 0.5, and am pretty sure the pharmacist will have done that, but she put 0.005g on the label, which would be 5mg… I took a tenth of a capsule just in case. Maybe could in any case first.
Simplified:
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-02 Monday - recovery?: Yes! RR/supp changes?: LDN?: Helped!

What … worked / went wrong … today:
LDN worked overall, time management more like “just in time”.

Habit encouragement… :
Time (= stress) management: Blog earlier (), forums less , jump off hamster wheels: ()
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , 19:40 (), back by 16:00: , 19:30 (), capsules by 17:00 , 19:50 ()

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Lots of energy, but “tense” till midday, TT 4:0, some pain, but can I really use this energy or is it once again fake? 9:44 surprisingly clear vision, 11:37 still. But 11:37 after standing working pain of 6, as well as some stiffness, despite energy still being OK…

Today working mainly on … time management, better self-treatments, RR, energy, esp. via LDN (very low, but fast! )

LDN - or rather VLDN, very low dose naltrexone (ULDN is ultra = 1µg/1mcg)

(VLDN or ULDN are sometimes used together with an opioid for pain.)
LDN dosage: Oct 1st 21:00: ~0.05mg, 2nd 22:30 ~0.05mg (if the pharmacy has compounded properly and not ten-fold)

LDN : 1) Higher energy all day, for TT 4:0 at 9:00 till 20:40 shop & back full speed . 2) less lower back unrest , 3) less sleep breaks , 4) felt better at night , 5) swung out of bed , 6) hardly any morning stiffness , 7) fairly awake early (good or bad), 8) often clearer vision , 9) I can listen to my mate talking longer, 10) considerably less Ache from overdoing it . 11) Energy more sustainable, reliable, stable without (as opposed to the additional energy from Chinese acupuncture of cryotherapy) .
LDN : 1) dreams 2) tenseness with the energy at first (), back exercises helped early Tuesday morning. . 3) Itchy at 22:30 (arms, left face, upper left neck/back) , but only then , and I believe it was mainly a B3-flush, 4) woozy/unbalanced in a different way at night , 5) awake after 7h seems a bit too early , 6) twice poo in the morning, 2nd time soft/diarrhea ().
LDN : 1) still yellow-white face 2) and white lips says my wife. 3) still local pains like clavicle (or odd achiles), I had nothing else at the moment.

How much naltrexone is in one of my capsules?!? - The prescription I asked for said 0.5mg. On the label it says 0.005g = 5mg. The pharmacy first thought they’d made a mistake. Then they called back to say all’s well, only “the computer” made a mistake on the label. Well… I can’t quite believe that. So I’m keeping the dose minimal first specks.
The pharmacists couldn’t believe that it’s no problem to take a rough tenth of the capsule. The difference would be 0.04-0.06mg, which may seem 50% more, but compared to 0.5mg or 50mg it’s absolutely nothing. So I just have to see myself where I land and then praps get that amount compounded, if there is a next time.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st & 2nd ✅✅.

|09:52:00|142|81|67|LDN energy, heartrate high altho not eaten|
|10:17:00|140|87|69|after eating and talking|
|11:10:00|157|94|72|stairs, moving, arranging|
|11:25:00|142|85|73|after talk & phone, typing, standing|
|11:48-51|154|98|70|after phoning about 10-fold LDN|
|11:57-12:00|149|91|70|While typing lyrics a lot, arrh|
|12:28-12:31|158|98|66|While typing lyrics a lot, arrh urge|
|13:31-36|161|98|62|Moving, standing, pee urge|
|13:53-57|146|91|56|Having peed, moved, sitting|
|14:20:00|168|99|66||
|14:21:00|155|89|61||
|14:23:00|139|92|66||
|14:51:00|160|87|63||
|14:52:00|146|89|61||
|15:19:00|140|89|69||
|17:52:00|119|80|66||
|19:49:00|138|85|57||
|19:54:00|148|90|57||
|19:57:00|131|85|60||
|20:24:00|145|92|58||
|20:25:00|132|87|54||
|20:40:00|132|83|55||
|21:28:00|139|84|67||
|22:42:00|143|79|62||
|00:46:00|127|73|67||
|00:47:00|115|69|64||
|01:22:00|112|64|57||
|02:58:00|111|71|60||
|04:36:00|110|68|61||
|06:34:00|101|71|68|despite having swung out of bed.|
|07:17:00|147|85|70|after jumping up from sofa|
|07:19:00|127|73|61|despite sitting on hard window will|
|08:46:00|142|87|60||
|08:48:00|130|85|66||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (easy, moving 20%, talking 20%, counting 0%, picking up 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌ (= improvement ✅). White lips80% (❌). Exhaustibility "84%", so relatively "✅" "much" higher (+60% energy) and sleep ✅, click for details:

EXHAUSTIBILITY today: “84%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "8h rest"), 2h very slow, 4h slow, 1h30 medium, 30' quick

SLEEP (click for details): 6h50, up 3x (50'), all deep, plus praps 30' dozing, dunno, I didn't know I'd only slept so short, and my BP was only 101, but was feeling maybe I should be trying to get to bed at 21:30 anyway. Bit difficult seeing as it's now dark both in the evenings and the mornings. Headache 15%, not sinusey, but frontal helmet. ✅/, everything else OK ✅, 80%/2 ✅, ➔ getting up: 85%/2-1 ✅. Woozy all night, sore throat, but down again as soon as I put my long-sleeve on (like the past week or so).

Sleep 22:40-6:20
5’ → 0:42- 6 → 1:12 112 1:18 = 40’
6:30 101: Does that mean I should continue sleeping? I’ll try. 6:34- after poo. 40’+5+5! Sum: 1h20+6h20-(50)’ = 7h40-50’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. SEPTEMBER SUMMARY: Sept 4th bladder exam 3 days of 'screaming' while peeing (again 18th seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and "2nd" UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt 'ill' and realized I couldn't hear music any more. (27th: New GP OK.). Oct 1st starting LDN... Excitement (= stress) ✅?: Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). Oct 1st starting LDN…

3) DOCS: Last update Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) Still cavicle a little off and on, and stabby pee pain, rather than bladder too, lower back unrest had been worse before LDN, I'd forgotten to put the esophagus block in here on Sep 30th:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose40%, 2nd time (), appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 30th. Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? or so. Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Blood pressure
Still didn’t manage to check what’s tolerable/normal
a) during sports,
b) while talking,
c) while eating, plus
d) activities for reducing it.
e) No chance to find the answer to this question directly: If I get up and my bp is still 101, should I try continuing to sleep or not?! My own answer is and was: yeah, try.

Quality of life: 85%

Lessons in self-care:
Good to have been wary about the LDN!
Reasons to be cheerful:
a) Luckily I’m a patient (or what’s the opposite an impatient? ) that can take a compounding pharmacy’s boo-boo in his stride and use it for the good/better…!
b) Found both lost things again. Good thing about being overtense is getting
Simplified:
a) Washing hair in the “long autumn evenings” now is probably a good time.
b) For transferring the bp readings (from the gadget to my table) I found that I can usually remember numbers better if I say the first one (aural memory) and just look intensely at the 2nd one (visual memory). Almost perfect, and easier, less strain.
c) Ah, found my two thingies again (see below) in the morning!
Foggies: Lost two thingies again, my wife: - but she’s lost just as much as me the past few days. However as we always grimly joke: “that’s something different”.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-03 Tuesday - recovery?: Yeah…? RR/supp changes?: BP/RR up? Now research, less checking. VLDN?: Still positive overall, still wary…

What … worked / went wrong … today:
VLDN helped with TT, housework, listening to people for a long time and cycling, but not able to talk that much and trying to arrange some music was much too much of a strain, too much in one go, partly cos of time pressure.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels: ()
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , instead 20:00 (), back by 16:00: , capsules by 17:00, instead 20:00 .
Got caught up doing a music arrangement in the evening and early morning, asked for short-term. This was possible cos of the additional VLDN energy. But it was after I’d done lots. And my blood pressure was up already. And became a hamster wheel. Plus entailed ‘making’ music a little (‘10’ minutes, spread out), now a particularly unwelcome strain. Meant delaying supps and eating. In the evening and morning contributed to tension in bed. But I spose worth it, cos my first work without listening to it wasn’t quite right, and perfecting the correction turned out very well.

How was I today?: Feeling 80-85%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .

Today working mainly on … time management , better self-treatments , RR (), energy, esp. via VLDN .

VLDN

Dosage: Oct 1st 21:00: ~0.05mg, 2nd & 3rd 22:30: ~0.05mg.
LDN : 1) Energy 2) lower back 3) sleep 4) night 5) up 6) stiffness 7) more awake 8) vision 9) listening 10) Ache 11) reliability . More?
LDN : 1) dreams 2) tenseness (got it down quicker, but need to concentrate on that) 3) itchiness none, 4) woozy - less 5) up early (), but dozed at least, might’ve been ‘excitement’ . 6) diarrhea () - less, plus now 7) belly ache starting at 4:00, so I may need to take it earlier with my last meal and eat my first meal earlier again. 8) calf cramps () - 2-3 in the morning, haven’t had those in ages, but it might be from moving more, like the achiles tendons yesterday. 9) Hangover kind of feeling from midday on, altho dubious slow energy is still there ().
The better lower back might be coming from getting the tenseness down by doing the back exercises early.
The belly problems might be part of the liver and abdomen problems I had before, or they’re the typical LDN side effects.
LDN : 1) yellow () 2) white () 3) local pains (). Plus:4) I still feel fluey sick quite a lot of the time (). But that might now be from sleeping shorter, so that’d be what to work on, decreasing the length of my first sleep break. It could also be like “sore muscles” from my body having to get used to moving “so much” more.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st & 2nd ✅✅, 3rd: ✅(✅?) - 140-160 during action, mainly <150, and >160 only twice directly after "jumping" around.

|11:08:00|149|83|75|03.10.23|
|11:29:00|141|91|73|after moving |
|11:44:00|135|87|69||
|12:23:00|145|81|67||
|12:56:00|138|84|65||
|13:20:00|168|98|64|After running (jumping!) down- and upstairs to save things in garden from getting wet, then sitting on barstool typing (forum stuff)|
|13:24:00|158|95|65||
|13:29:00|153|90|64||
|13:33:00|148|90|65||
|13:35:00|149|92|63||
|13:45:00|142|94|63|arrh, come down all the time|
|13:49:00|149|91|64|But trying to quickly work thru forum posts|
|14:05:00|150|87|57||
|14:06:00|151|98|60||
|14:16:00|144|92|57|sofa, typing blog template, hamster wheel, wife annoyed about dunno what|
|14:20:00|148|98|59|low pulse before eating/drinking|
|14:21:00|141|93|55||
|14:22:00|138|93|56||
|14:35:00|169|99|58|after moving again|
|15:31:00|142|89|64||
|15:53:00|157|88|66|arrh|
|16:09:00|155|85|65|after moving|
|16:16:00|141|86|61||
|16:23:00|151|90|63|annoying fly|
|16:27:00|147|85|62|All of these are pretty directly after activity|
|18:57:00|154|91|61|after cycle-walk/rain|
|19:11:00|152|92|66|arrh, after cycle-walk, rain|
|20:12:00|165|95|59||
|20:13:00|150|94|57||
|20:28:00|147|93|56||
|20:30:00|144|87|56|OK, considering working on music, fairly low heartbeat|
|Battery flat, recharging|||||
|05:22:00|140|84|55||
|05:24:00|127|85|50||
|05:25:00|123|85|49|extremely low heartrate|
|06:51:00|147|85|58||
|08:32:00|143|88|53||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 60%/3 (❌), music 5' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "86%" ✅ and sleep ✅, click for details:

EXHAUSTIBILITY today: “86%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "8h rest"), 2h very slow, 4h slow, 1h30 medium, 30' quick

SLEEP (click for details): 7h13, up 4x (67'), praps 1x more (✅), all deep except the last hour. I think too short ❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅. Abdomen ache/pressure of 20% from 4 to around 11 (a while after eating first meal), and sore throat at 4 too, so needed long johns additionally to the longsleeve.

Sleep 22:30-6:50, last bit dozing.
0:00 45’+ 6, 2:15 +6’ 4:25 +8 abdomen ache of 20%. 5:18 +8’ , batteries in. 140/84 127/85 123/85. Abdomen 20%. throat 20% from 4 on, despite long sleeve, so long johns. Wasn’t I up at 6 as well?
Sum: 1h30+6h50-(45+6+8+8=)67’ = 8h20-67’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Quite high blood pressure anyway, I was thinking cos of rainy windy weather, then moving ('jumping') a lot, did quite a lot of housework, then I something else, I think work, then we wanted to go out, but then talked with friends outside first for 15', then after 10' got caught in the rain, had to wait 20' for it to stop, when back at 7 I did most of the music arrangement which was asked to be done by tomorrow morning, that was as said the most strenuous. So I spose loads of reason to feel a bit "sick". Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…

3) DOCS: Last update Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.05mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Blood pressure
a) during sports and
b) while talking increases of course, and
c) while eating - I still haven’t done these properly today, but the last two:
d) weather: higher when it’s colder, but also “sudden change in weather patterns, such as a weather front or a storm… abrupt changes in humidity, atmospheric pressure, cloud cover or wind in much the same way it reacts to cold.”

How cold weather affects your blood pressure

(That’d explain today’s spiking from 13:00 onwards: windy and rainy, and I feel also some of the previous peaks.)
plus
e) activities for reducing it - this small study from India from 2023 puts it very long-windedly, but what increases heartrate, esp. in anticipation, is active conversation, whilst that and both SBP and DBP are decreased by soft instrumental music if it pleases, as well as multi-tasking with tracing a maze with one hand and something else (with “hedonistic pleasure”) with the other, requiring “set-shifting” and the promise of rewards and contentment. Hehe, as a similar study has something to do with “erotic content”, I’m thinking that’s why they’re not getting specific here…

A case where ULDN helped for neuropathic as enhancement for an opioid in the JPSM https://www.jpsmjournal.com/article/S0885-3924(03)00139-8/fulltext
Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization - PMC

Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization

2018 Toljan & Vrooman
LDN has been “shown to reduce glial inflammatory response by modulating Toll-like receptor 4 signaling in addition to systemically upregulating endogenous opioid signaling by transient opioid-receptor blockade”
whilst ULDN In “a dosing range at less than 1 μg per day, oral naltrexone or intravenous naloxone potentiate opioid analgesia by acting on filamin A, a scaffolding protein involved in μ-opioid receptor signaling.”
“A dosing range between 1 μg and 1 mg comprises very low-dose naltrexone (VLDN), which has primarily been used as an experimental adjunct treatment for boosting tolerability of opioid-weaning methadone taper.”

Michelle Moser LDN is usually taken before bedtime, empty stomach seems OK, if not tolerated well then in the mornings. What German youtuber Alexandra adds is that evenings might be better for sleep, and surprisingly that seems to be helping, as I seem to only have been up 3x tonight, unless I forgot to note it once, then 4x.

Quality of life: 85%

Lessons in self-care:
VDLN is one target, but not overdoing it, plus understanding BP better rather than measuring.
Reasons to be cheerful:
Fairly hopeful about VLDN working out - still lots of possibilities.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-04 Wednesday - recovery?: The “slight” improvement is stabilizing - relatively it’s an enormous improvement, I can now do four-fold, albeit slowly (however playing TT 4x is still the limit). RR/supp changes?: A bit more research finally… (actually Thursday later). LDN?: Good effects stable and increasing, bad effects dissolving. If the bad effects decrease to 1, e.g. the slight heartburn sometimes, I’ll want to increase the dose.

What … worked / went wrong … today:
VLDN is definitely working so far.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels:
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , back by 16:00: , capsules by 17:00

How was I today?: Feeling 80-85%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .

Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .

VLDN: 13 : 2 .

Dosage: from Oct 1st ~0.05mg, 1st 21:00, 2nd & 3rd 22:30, 4th: 20:30

VLDN : 1) Energy 2) lower back 3) sleep 4) night 5) up () 6) stiffness 7) more awake () 8) vision () 9) listening 10) Ache 11) reliability 12) 26’ walk no problem 13) shorter recovery times 14) local pains less, even after 26’ walk, clavicle only slightly.
VLDN : 1) dreams: no 2) tenseness: improved () 3) itchiness: no 4) woozy: no 5) up early: no 6) diarrhea: no , 7) belly ache: no 8) cramps: no 9) hangover: still , 10) heartburn sometimes ().
VLDN : 1) yellow 2) white

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st & 2nd ✅✅. 3rd: ✅(✅?). 4th ✅✅ - high as expected when moving a lot, doing sports. RR when it's cold outside or inside my room will likely be higher. Kind of contradictory if I now take my tops off so it's on my skin, like recommended....

|09:02:00|171|100|49|extremely low heartrate|
|09:21:00|152|97|54|arrh, low heartrate before eating (10:00)|
|10:10:00|164|95|77|moving, eating.|
|11:19:00|175|94|80|after TT|
|11:20:00|152|96|76||
|11:21:00|158|87|76||
|11:42:00|139|86|68||
|11:44:00|140|84|65||
|12:06:00|160|98|70||
|12:07:00|148|94|61||
|12:56:00|161|101|60||
|12:57:00|171|97|63||
|13:14:00|151|98|56||
|13:20:00|144|94|55||
|02:52:00|109|68|70||
|03:37:00|99|69|60||
|05:25:00|107|74|67||
|05:26:00|121|79|61||
|05:28:00|116|76|60||
|05:28:00|115|83|62||
|07:29:00|139|89|63|after undressing|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 20%, counting 5%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4 ❌. White lips80%? (❌). Exhaustibility "84%" ✅ and sleep ✅, click for details:

EXHAUSTIBILITY today: “84%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "7h rest"), 2h very slow, 5h slow, 1h30 medium, 30' quick

SLEEP (click for details): 8h27, up 6x (52'), all deep. Only heartburn 30% at 23:00. Forgot to prepare the 0.3g GABA, but realized at midnight, and could take the evening GABAs in the (increased) sleep breaks. ✅, everything else OK ✅, 70-80%/2 ✅, ➔ getting up: 70%/2 (✅).

Sleep 21:40-6:59
23:10 15’ PEA order. heartburn 30%, 0:33 5’ heartburn 3%
1:55 5’ heartburn 0% 22:43 8’ 109? 3:35 12’ 99 5:22 7’ 4 RR: 107 over longsleeve, 3x higher on skin(?).
Sum: 2h20+6h59-(15+5+5+8+12+7=)52’ = 9h19-52’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Kept it down by making sure I got the stress stuff finished by early afternoon, so I could shut down after. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…

3) DOCS: Last update Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.05mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today: how to take blood pressure properly

Prevalence of pseudoresistant hypertension due to inaccurate blood pressure measurement - PMC Bhatt et al. 2016:
Proper technique is … rarely followed: correctly sized cuff; placing the cuff on skin; sit; rest 3–5 minutes before; no other activities; avoid operator bias, even more exact was their type of measurement: The BpTRU device takes 6 consecutive BP measurements one minute apart providing an average based on the last 5 measurements, 5’ rest, quiet room, back supported, feet on the floor, with the arm used for measurement supported at chest level and placing the appropriately sized cuff … directly on the skin on the non-dominant arm, physician left the room allowing for unobserved BP measurements.
“Whether guidelines should be revised to not have a 5 minute rest period with use of devises that take serial readings is an important methodological question for subsequent studies.”
“An average of multiple measurements could also explain a portion of the observed BP discrepancies between the two techniques; perhaps by regression to the mean. A prospective trial with randomization to the timing and number of BP measurements would be needed to differentiate between these effects.”
Relevance to me: Most of my measurements are during or immediately after activity, esp. the first ones, I never wait - deliberately to see how high it is then and how the reduction curve is. This appears not really to have been researched properly as it says in this study. It also means when I’m in the area of 150 then it might well be completely OK, as I’m sometimes not sitting, hardly ever am doing nothing, I’m usually reading or even typing, if I am it does go down more. Apart from that the main thing I could “improve” is cuff on skin, but I’m still usually outdoors and it’s getting chilly… I believe taking an average is oversimplifying by watering down my varying variability (sic, cos sometimes it’s a jumpy reduction, sometimes a gradual constant one), and when they talk about “regression to the mean” that’s part of what I mean.

Still to do: Blood pressure…
a) during sports,
b) while talking,
c) while eating… etc.

Quality of life: 85%

Lessons in self-care:
I think I might be able to increase pushing thru the pain a bit more, seeing as so far I haven’t had a bad backlash… .
Reasons to be cheerful:
a) Fun learning more bird sounds.
b) Robin song is increasing, in the evening, and a loud one for a short time before my bedroom in the morning. My wife also remembered a year where she’d heard a robin in November, half-correcting her attitude that they’re only singing cos it’s the last bit of summer.
c) Managed to be up almost with the dawn and see the jackdaws flock out a bit. (I’ve always been up earlier and then forgotten to watch and listen, or then later.)
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-05 Thursday - recovery?: Definitely able to do much more, but slowly. RR/supp changes?: Satisfactory, and bit more research. VLDN?: Even longer energy, not higher, without backlash.

What … worked / went wrong … today:
Getting activities done like housework, but forgetting some self-care stuff like phoning the docs cos of all the appointments.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels .
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , back by 16:00: , capsules by 17:00
5-fold

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night .

Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .

VLDN

Dosage: Oct 1st 21:00: ~0.05mg, 2nd 22:30 ~0.05mg, 3rd-5th: 20:00 (wind). Correction: These were 0.07mg, since i divided the 0.5¶¢mg capsule up into 7.
VLDN : 1) Energy 2) lower back 3) sleep 4) night 5) up ( 6) stiffness 7) more awake () 8) vision () 9) listening 10) Ache 11) reliability 12) 15’-30’ walks no problem 13) shorter recovery times 14) local pains less 15) pee frequency slightly less (e.g. today during table tennis), 16) pee urge less (e.g. at night I wake up, but only feel the urge (“again” I spose) after a few minutes).
VLDN : 1) dreams: no 2) tenseness: improved () 3) itchiness: no 4) woozy: no 5) up early: no 6) diarrhea: no , 7) belly ache: slight Friday morning () 8) cramps: no 9) hangover: if I did, it was no problem to push thru it , 10) heartburn sometimes (), 11) wind ().
VLDN : 1) yellow 2) white

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st to 4th ✅✅, now focusing on research.

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 15' ➔ 60%/4 ❌. White lips80% ❌. Exhaustibility "82%" ✅ and sleep ✅ (slight nauseous headache at 6:25, colder and dryer), click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest"), 2h very slow, 6h slow, 1h30 medium, 30' quick

SLEEP (click for details): 8h30, up 6x (47'), all deep. Sore throat -> long johns at 4:30, Nostrils 0/20% and nauseous sinus headache 30% at 6:25., but zombified and slight headache when getting up, maybe the warmth of the long johns and sleeping longer. Mouth's dryer as well as my hands hurting. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:10-7:27
23:05 7’ knuckles hurting from dryness / washing → cream.
23:50 15’ rib pain: cried out, → press / massager spot under and behind left shoulder, massager made a spot on the forearm 10cm from right elbow hurt, so pressed that too.j
(filling of tooth 2-7)
1:17 4’ better, except right knuckles.
2:35 5’
4:30 12’ sore throat → long johns → 127, teeth → 116.
6:25 4’ nostrils0/20 nauseous sinus headache 30% pee urge, but less, left blinds up, but still slept longer than I intended, maybe good.
-7:27 bit zombifiied 20%, headache 10% “when waking” (not while dozing), drymouth 40% since 4, bit wind, no more.
60-70%/1-1/0%
22:10-7:27
Sum: 1h50+7h27-(7+15+4+5+12+4=)47’ = 9h17-47’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅?: Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…

3) DOCS: Last update Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)). 23:50 rib pain: cried out, pressed / massager spot under and behind left shoulder, massager made a pain spot on the forearm 10cm from right elbow hurt, so pressed that too, fully resolved! Hand skin very dry and hurting, so I'm reducing washing, trying not to use too much cream yet, but that'll be the winter challenge again altho I drink >3L/d:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.05mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Still to do: Blood pressure…
a) during sports,
b) while talking,
c) while eating… etc.
Found lots of pages/studies, but haven’t worked thru them yet:

Quality of life: 85%

Lessons in self-care: Have to prioritize more and not just “do”, I’m using my new phone for that more now. Forgot all the doc phone calls I was praps thinking of doing today.
Reasons to be cheerful: a) Great to manage to do so much.
b) The new sunflower is turning out to be a different type again.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-06 Friday - recovery?: Stable. RR/supp changes?: Why again high at 17:00? Annoying! VLDN?: stable.

What … worked / went wrong … today:
Generally, things worked quite well, I spose. Up and down with my feelings about my blood pressure, sometimes I think I’m getting somewhere, sometimes I think I have no choice but to take the med again.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels .
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , back by 16:00: , capsules by 17:00 .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Thursday night , sleep Friday night .

Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, from 3rd on ~20:00.

VLDN for:

1. Energy up from 10% to 18%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ , stiffness , shorter recovery times , all constantly . But : still yellow/white face and black eye rims.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision (), bladder: pee frequency & urge ()
4. Sleep : feel better in breaks, waking up better, more awake

VLDN only what’s stayed:

1. tenseness from energy change: improved (),
2. GI sometimes, e.g. diarrhea 1x, belly ache 3x, heartburn 3x ().

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st to 4th ✅✅, next implementing research, e.g. testing what difference it makes putting the cuff on the skin, made it spike to 229/131 for a few minutes, which showed me mine does go up:

|16:37:00|155|95|66|06.10.23|
|16:38:00|155|126|65||
|16:39:00|159|98|62|reading|
|16:41:00|147|88|60||
|16:42:00|139|90|64||
|16:43:00|147|89|60||
|16:44:00|148|85|62||
|16:45:00|150|90|64||
|16:46:00|154|88|63|Leaning against balcony, is it the tension waiting for kid’s call or sitting or what? Weather is good|
|16:48:00|152|88|59|It’s not low pulse either|
|16:49:00|147|92|59||
|16:51:00|153|93|62|139-159 (avg. 150), 16:37-51.|
|17:15:00|155|99|56|after walking & worrying|
|18:00:00|199|117|77|>1’ of wall sit|
|18:02:00|229|131|87|1’30‘‘ of wall sit|
|18:05:00|173|104|61||
|18:08:00|164|94|58||
|18:07:00|162|98|63||
|18:09:00|145|95|57||
|18:10:00|157|103|60||
|18:12:00|152|93|57|low pulse|
|18:13:00|155|92|56||
|18:20:00|167|102|62|pee urge|
|18:26:00|156|103|60|stairs and pee|
|18:27:00|165|103|64||
|20:42:00|159|97|57||
|20:43:00|150|91|54||
|20:45:00|134|87|54||
|20:46:00|144|94|57||
|20:48:00|137|90|56||
|22:07:00|149|89|66||
|04:30:00|113|74|61||
|06:04:00|124|80|65|over clothes|
|06:06:00|125|79|59|on skin|
|06:07:00|105|67|56|tight/skin|
|06:13:00|99|67|60|tight/skin after stairs!|
|07:12:00|134|96|67|tight/skin but pee urge|
|07:21:00|120|62|57||
|07:22:00|134|62|52||
|07:24:00|112|58|55||

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 3' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "82%" ✅: 4h slow & 4h medium(&quick) energy, and sleep ✅ (6h34 a bit short, breaks again too long), click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest"), 2h very slow, 4h slow, 3h30 medium, 30' quick

SLEEP (click for details): 6h34, up 5x (89'), all deep, except last half hour deep dozing. ✅/❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:35-
23:40 15’ fl10’ (slight 2nd pee urge)
0:56 66’ (fl45’ 6)
3:25 4’
4:25 4’ 113/74
6:08 7’ 125 over clothes 127 on skin 105 tight on skin. Thinking of naturadb before, thumping. 99 tight/skin after stairs! -6:15
-6:45
Sum: 1h25+6h45-(15+66+4+4+7=)96’ = 8h10-1h36’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: OK. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…

3) DOCS: Last update Oct 9th: Need to phone all these! Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.05mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Just sharing first, before blood pressure stuff:
At last Bruce Gillis is hopefully getting into trouble for his FM/a “test” - scam!:

CSPI sues EpicGenetics, maker of test for fibromyalgia, for false and...

Astounding that Gillis had the cheekiness to re-invent the same test and say it’s now finding a new disease called IDD:
“EpicGenetics also allegedly markets an identical but differently named product, the 100Sure Test, as “100% accurate” in diagnosing “Immune Deficiency Disease,” or IDD. However, according to the complaint, that is not a medically recognized disease but rather a term created by EpicGenetics to fit the results its tests generate.
That is, EpicGenetics, having failed to create a test that accurately diagnoses FM (the FM/a Test), has now created a disease (the so-called IDD) that fits that test’s results, and released a rebranded version of the underlying test (the 100Sure Test) as a diagnosis for this manufactured disease,” in the words of the complaint.”

What’s important for measuring blood pressure is: Empty bladder, not having eaten, no physical activity 30’ before, arm at heart level, not crossing legs, not talking. What confuses me is that bloodpressureuk says don’t do sports that spike the blood pressure, but I’d read wall sits are perfect training, however mine spiked blood pressure. I think I just have to watch not to do them as long as I did, keep to 30’’ That I could trial.

Generally:
AMA: If the patient has a full bladder, that can lead to an error in systolic BP of up to 33 mm Hg, and the white-coat effect can have an error of up to 26 mm Hg… It is important for the patient to rest comfortably in a quiet environment for five minutes in a chair. The patient should also have an empty bladder and not have eaten, ingested caffeine, smoked or engaged in physical activity at least 30 minutes before the measurement … having the patient’s arm lower than heart level can lead to an error of 4 mm Hg up to 23 mm Hg. Procedure related error might also occur if the patient’s legs are crossed at the knees or if talking occurs during BP measurement. … Physician readings were also found to be higher than nurse readings, which is the white coat effect in action. (Hmm, I thought a study said the other way round…?)

a) during sports:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7793423: It’s not certain how bad Exercise-Induced Hypertension is, but that’s >210 SBP, far higher than I’ve ever seemed to have, so not helpful. OK, let’s measure it: 18:00 during wall sit 199/117 (77), then repeating (>1’ of wall sit) 18:02 229/131 (87), but <150 inside of a few minutes.

https://www.hopkinsmedicine.org/Press_releases/2004/04_06a_04.html
… “exercise hypertension,” an abnormally high spike in blood pressure experienced by generally healthy people during a workout, is a known risk factor for permanent and serious high blood pressure at rest. … believe … rooted in the failure of cells that line the blood vessels to allow the arteries to expand to accommodate increased blood flow during exertion. … also is associated with aging, … high cholesterol… Hmm, not directly relevant either.
https://www.bloodpressureuk.org/your-blood-pressure/how-to-lower-your-blood-pressure/healthy-living/exercise-physical-activity: *140/90mmHg – 179/99 mmHg This is high blood pressure, but it should be safe to be more active to help lower it… Exercises to avoid: any exercise that is very intensive for short periods of time, such as sprinting or weightlifting. They raise your blood pressure very quickly and put too much strain on your heart and blood vessels."
https://www.ahajournals.org/doi/10.1161/JAHA.119.015554

This is only about too low blood pressure during and after exercise, so not relevant: Blood Pressure Drops After Exercise: What’s Normal, When to Be Concerned | livestrong

b) while talking,
The effects of talking on the blood pressure of hypertensive and normotensive individuals - PubMed Old one from 1981 says “In some hypertensive individuals increases blood pressure greater than 25-40% occurred within 30 sec after the initiation of human speech.” (This was the one cited by Channeling of Brain Towards Engaging Sensorimotor Tasks for Inducing Hedonic Pleasure to Alleviate Blood Pressure in Hypertension.)

c) while eating… - well, I’ve already cited that blood goes to the intestines, so I’ve understood the pressure goes down (?), and that’s the reason we shouldn’t have eaten the 30’ before…

Quality of life: 85%

Lessons in self-care: -
Reasons to be cheerful: -
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-07 Saturday - recovery?: More glitter than gold: 5:1, but overdid it all day. RR/supp changes?: Still a bit confused where it’s going. VLDN?: I can now step up (or down?) the dose. All 3: lots to watch & adjust!

!! Need to put on my trigger list (3) that Dec22 after the 3rd jab made me stop all manual treatment!

!! I’m now sitting & typing mainly on the right side of the cellar entrance, which I tolerate much better - so maybe my vertigo attack was partly from sitting on the left side?

What … worked / went wrong … today:
Desperately need to tone down! Overdoing it!

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels .
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , back by 16:00: , capsules by 17:00 (early enough anyway).

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Friday night , sleep Saturday night - overlong though.

Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00.
VLDN for:

1. Energy up from 10% to 18%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ , stiffness , shorter recovery times , all constantly . But : still yellow/white face and black eye rims.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision (), bladder: pee frequency & urge ()
4. Sleep : feel better in breaks, waking up better, more awake
   VLDN Nothing any more, only as ever needing to “curb my enthusiasm”.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease. Haven't put the measurements in here yet.

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 5:1 (moving 30%, talking 40%, counting 0%) ➔ 80%/4 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3-4 ❌, music 5' ➔ 70%/4 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep (✅) - but sleep breaks too long (maybe cos of not doing the screen curfew properly and worse now I write the break times on the laptop instead of just measuring BP and keeping to 5'). And then slept too long rather than too short (despite pulling the blackout blinds up). Click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest"), 2h very slow, 6h slow, 1h30 medium, 30' quick

SLEEP (click for details): 8h41, up 5x (86'), mostly deep. (✅), everything else OK ✅, 75%/2 ✅, ➔ getting up: 70%/2 (✅).

Sleep 22:40-
23:45 5’
0:40 5’
2:20 17’
4:25 55’ 6 hp
6:25 4’ partly dozing
-8:47! partly dozing.
Sum: 1h20+8h47-(5+5+17+55+4)86’ = 10h07-1h26 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅?: Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop all manual treatment from Dec on!
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam severest pain, “3” UTIs, 12th and 18th: twice CoV-type symptoms a few days: fluey Ache, cough, belly discomfort, feverish, “temperature”, up 11x, moving difficult. Before 20th: binge work stress. 21st: feverish, histaminey, 22ff: Right upper abdomen pain for a few days. 24th: felt ‘ill’ and from then on couldn’t hear miuch music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct 1st starting LDN…

3) DOCS: Last update Oct 9th: Need to phone all these! Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today:

Bits’n’bobs

Quality of life: 85%

Lessons in self-care:
a) I’m now quite enjoying feeding up the guinea pig, we often now eat together. I notice that I’ve never talked much with animals. But I love them, and stroking, and nose kissing.
b) Getting all confused, phone’s helping, it’s a phase.
Reasons to be cheerful:
a) Got the books by the local ornithologist about our birds and animals, really good!
b) A few more tiny flowers and some big ones, like asters and forms of sunflowers.
c) Also finding the moss is coming up a bit better now.
c) Small groups of geese are flying south already.
Simplified: I don’t think I’ve mentioned I’ve now prepared supps for 5 days, which was a bit of a slog that evening, but if I can get that more regular and better boxes.
Foggies: OK, just I’m finding it hard to adjust to the new energy with limitations - as ever…

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2023-10-08 Sunday - recovery?: Nope, backlash. RR/supp changes?: Nope, too confused. VLDN?: Sleep less good, but no other side effects than having to adjust, so increasing.

What … worked / went wrong … today:
Going to the local gardens for an hour was stretching it even without table tennis. But then listening to a lot of our service via video was much too much, very painful, despite ear plugs, going out of the room regularly, multi-tasking.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels .
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: already done in bulk , back by 16:00: (), (capsules by 17:00)

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night .

Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 1/4 of 0.5mg = 0.125mg.
VLDN for:

1. Energy up from 10% to 18%: for activities, but not easy to use, so I’m estimating at ~15% (), walking: up from 5’ to 30’ - but risk of overdoing it (), listening: up from 3’ to 15’ - also risky (), stiffness - that’s still quite good now, but has also increased again (), shorter recovery times - not after overdoing it at length (), not too constantly any more, but still gradual (). But : still yellow/white face and black eye rims.
2. Pain: overall Ache - increased a little again from overdoing it (), local: lower back - that’s stayed , less , hangover .
3. Muscles: eyes = vision - less good (), bladder: pee frequency & urge still less, but why then the many sleep breaks?? ()
4. Sleep : feel better in breaks, waking up better, more awake

VLDN Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increase dose, but avoid strain by only using half the energy I feel. Mornings now to influence sleep breaks.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease.

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. No TT, not much gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/4 ❌, listening to music 5' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "86%" ✅ and sleep ✅, click for details:

EXHAUSTIBILITY today: “86%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "10h rest"), 2h very slow, 2h slow, 1h30 medium, 30' quick

SLEEP (click for details): 8h32, up 7x (53'), all deep except 30' after remembering my onco doc. ✅, belly ache at 5, probably from LDN, and thirsty as ever (✅), everything else OK ✅, 70%/2 (✅), ➔ getting up: 70%/2 (✅).

Sleep 21:40-

1. 22:47 5’ teeth
2. 23:35 5’
3. 0:25 6’
4. 1:28 5’
5. 3:00 8’
6. 4:35 4’
7. 5:05 20’ tense & belly ache, 6 drink, not feeling that well after either.
   -7:05
   Sum: 2h20+7h05-(5+5+6+5+8+4+20)53’ = 9h25-53’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Trying to listen to the service caused "pain", then bladder pain and an itchy left face (typical stress sign, I believe trigeminal). Click for list, incl. Sept summary added Oct 2nd, added Dec22 on Oct 9th...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Dec: Had to stop cryotherapy/acupressure & acupuncture from then on.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…

3) DOCS: Last update Oct 9th: Need to phone all these! Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.05mg. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 85%

Lessons in self-care:
a) Writing down the two dreams in a sleep break wasn’t the problem, but the onco doc dream triggered stress, so dozed tensely after that, and had to take another break for stomach and praps FCS.
b) Good to tone down today and go to bed early as well. Best keep that up.
Reasons to be cheerful:
a) Even more robin song today.
b) Funny-embarrassing dream about finding a lost phone: Called by “Jay-CS” on my phone (not by my real name). Surprised I blocked the call. Then realized somehow someone must have found a phone of mine. Called back and was told where to get the phone. Then went to the police to tell them, which was a bit complicated to find. After a few minutes we realized that I hadn’t told the police I’d lost it, so thanked kindly and went and got the phone back.
c) Similarly my wife had dreamt yesterday that my onco doc had come to me and asked for a second chance to help me and write a report at last. Which reminded me that I wanted to report that doc when 6 months is up.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”