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