2023-09-18 Monday - recovery? Occasional left-overs from bladder exam (slight stabs started again today) and flu (cough now and then), TT OR talking now up to 15’. RR/supp changes? Keeping strained periods down, RR OK, so have stopped the med completely, so it doesn’t cause more low pressure headaches at night.
What … worked / went wrong … today:
Well sleeping so deeply Sunday night I took less GABA and Monday 21:00 got a small focal seizure. Could maybe have prevented it by taking 0.6 GABA with the evening meal. At 20:30 I’d started getting a slight burning sinus headache of 20%. I was wondering if that was the dairy jogurt I’d eaten a lot of today, or anything else. At 21:30 my tongue tip burning went up to 30%, another histamine sign more related to food.
Habit encouragement… :
Time (= stress) management:
Keep blog time up: 
- could have been earlier.
Keep forum time down: () - could have been less.
Jump out of hamster wheels: () - managed at 10:30, whilst I got up late and fed the guinea pig for an hour till 9:15.
Self-treatments:
Wall sits: no, but twice TT .
Balance exercises: .
Prepare supps by 15:00: 19:00+19:50 (
)
Back exercises by 16:00: directly upon getting up at what was it, 8:00? 
Encapsulating by 17:00: () 19:00+21:00
White lip massage / puckering
How was I today?: Feeling 80-85%-ish (), energy today () - compared, sleep Sunday night , sleep Monday night , nausea 0% , fog 10% (), 0 bites , vertigo 0%, 100% of the time ().
Today working mainly on … time management, self-treatments RR, energy.
[details=“RR: HIGH BP PERIODS: Sep 12th: No more spike periods after stopping eleuthero on 10th. 13th: A few spikes and not enough dip at night will have been from the “flu”. 14th: Not brilliant, not diligent at daytime, but at night. 15th: When >150 that will always have been after doing something and it always went down <140 soon after. 110 at night, better than <100. 16th: Day same, night <100 with nauseous sinus headache and cold. 17th: Day same, up at night in 2 hamster wheels ended on 130, slept 4h and then another 2h without breaks! 18th: Hamster wheels in the morning ended on 140, then OK, at night >100.”]
| 11:44:00 | 170 | 91 | 77 | hamster wheel forum till 10:30, then perfect getting ready |
|---|---|---|---|---|
| 11:45:00 | 154 | 91 | 75 | hamster wheel house stuff: front light |
| 12:36:00 | 142 | 87 | 83 | hamster wheel cleaning |
| 12:43:00 | 140 | 87 | 76 | hamster wheel garden photos |
| 18:16:00 | 154 | 80 | 76 | |
| 18:17:00 | 135 | 85 | 76 | |
| 20:50:00 | 146 | 88 | 63 | |
| 20:59:00 | 127 | 79 | 65 | |
| 22:28:00 | 139 | 81 | 74 | |
| 23:28:00 | 120 | 80 | 70 | |
| 00:05:00 | 115 | 74 | 68 | |
| 01:04:00 | 106 | 70 | 67 | |
| 01:58:00 | 98 | 73 | 68 | |
| 03:21:00 | 108 | 75 | 60 | |
| 03:29:00 | 102 | 64 | 57 | |
| 05:46:00 | 104 | 65 | 68 | |
| 06:43:00 | 121 | 79 | 75 | arrh |
| 07:06:00 | 102 | 71 | 65 | Headache 10% |
| [/details] |
[details=“1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise () vs. post postural ache , but sort of a continual malaise, not influenced much in its quality by exertion or posture (). Stiffness . TT twice, 2:0 and 2:0 (moving 20%, talking 10%, counting 0%) ➔ 80%/5 , gardening/moving ➔ 80%/3 (), talking 15’ ➔ 80%/4 . White lips60-80%? (). Exhaustibility “88%” and sleep , click for details:”]
[details=“EXHAUSTIBILITY today: “88%”. 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”), 1h very slow, 2h slow, 1h medium/quick"]
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SLEEP (click for details): 7h57, up 7x (40'), all deep. Only headache at 10%, rest as usual. ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:30-6:40 Sum: 1h30+7h02-(7x5+5=)40’ = 8h32-40’
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2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Kept excitement down today, didn't need to react much to bad world news or mate's funeral experiences, was able to 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 (✅)): Improving my appetite with
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: 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 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: 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 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: All the Wolfe-stuff in the previous post.
Quality of life: 85%, “Feeling well”: 80-85%.
Lessons in self-care: Managed quite a bit today, with pain on a medium level, but energetic and stable enough to get up on a ladder to change the light settings, clean an upper window (pretty senseless, I felt, but I was asked and wanted to try). And twice table tennis for 15-20’ each, but curbed talking.
Reasons to be cheerful:
a) Our last pigeon nest of the year: Duey was sitting on it today. Better luck this time.
b) Recognized a call of my wife’s to the guinea pigs - it’s the great tit’s ‘cheep chiiirp’! I wonder if she realizes.
Simplified:
Praps keeping the supp lids in my hand doesn’t make much difference, I’ll see from ay to day.
Foggies:
The rest is pretty detailed, short version:
Dropping things like wobbly walking is to me a (brain-)body-foggy (impaired proprioception), but with the arm fog I tend to improve for the worse, and best for me in the end seems to be to just “let it go” and keep calm.
I put dropping things under “Foggies” on my blog a few days ago. Then wondered if it isn’t more “body fog” than “brain fog”. Since it’s got to do with proprioception, “the sense of self-movement, force, and body position.” This “is mediated by … neurons located within muscles, tendons, and joints.” So at the moment I’m thinking it may be best to think of it as “brain-body-fog”.
For others this might not be so conspicuous, but my brain is able to do so much thinking when it’s left to itself, but when it has to interact with other people via direct talking (remembering words) or with my body, that’s when the fog starts. So I can’t say I have brain fog. Either it’s body fog, or brain-body-fog. I’m not sure how much brain is actually involved. And what we sense I think matters more than how scientists describe proprioception. But it seems technically parts of the brain are involved, however not as we tend to think of brain fog as more the conscious part.
Now dropping things I get something a bit different with my arms than my legs:
When I try to move something the body fog can nowadays often make me slightly misjudge where it is or where I’m wanting to put it. However additionally to that I sense that and when I try to correct it, it always falls and so I feel it actually usually makes it worse. I can react either placid or with a small gasp which makes my wife overreact “what’s up, what’s up?”, which also just irritates additionally, cos it doesn’t help. Talking about it helps calm the reactions about the reactions. If I were as careful as when I’m getting on or off a bike, it wouldn’t happen, I’d prepare focus, everything in me would concentrate - probably increasing strain, blood pressure, overdoing it. As it is I usually just let it happen, and try not to be annoyed, even if it actually is annoying, even if it might take me more time and strain, because the chances are fair that it won’t happen and the strain of considering what might happen every second I am moving wouldn’t be appropriate…
My wife is sometimes amazed how calmly I just wipe the stuff up slowly, without the least wince. If she gets uptight, I just say I’m doing my best and try not to even wince inside from that either.
[details=“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”
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