JayCS’s Fibro Blog

Symptoms & Treatments
1319

2023-08-29 Tuesday - recovery?: ever so slightly. RR: quite good, no spikes found today, but wasn’t that regularly.

What … worked / went wrong … today: ?
How was I today?: Feeling 75-80%-ish (:white_check_mark:), energy today (:x:), sleep Monday night (:white_check_mark:), sleep Tuesday night (:white_check_mark:), nausea 0(-10)% (:white_check_mark:), fog 10% (:white_check_mark:), no bites :white_check_mark:, vertigo 0%, 100% of the time (:x:).

Today working mainly on … recovery, RR vs. increasing/tolerating blood meds, energy.

RR: Good in the daytime at 14:00 and 21:00-22:00, brilliant at night, good at 8:30, OK at 9:00. Listening to some videos about blood pressure reminded me that I'm deliberately not waiting 5' till I've calmed down, but starting to measure as soon as I sit down, even if still moving, so the higher values are much higher. With vertigo Wednesday morning (not having eaten yet, as often) completely normal blood pressure. That now establishes that the vertigo has nothing to do with high blood pressure. And the stroke unit established that there never was any risk. So now I can calmly try to find out more about BPV: blood pressure variability, which I may have and has recently been found to be a separate CVD risk.

14:01 136/82 (57), 14:05 116/71 (53), 14:06 123/76 (57)
21:08 126/71 (64)
21:42 139/85 (66) work (not allowed!) then pee urge. 21:59 115/67 (59) after loo, up/down, gnat hit
00:56 104/56 (55)
2:35 104/46 (57), 2:44 91/64 (56)
4:59 101/58 (55) 5:20 115/64(54)
6:24 100 58 (54) after loo.
-7:50 126/60 55 altho not sleeping that deeply, I thought. No headache.
8:24 120/75 (68) despite pee urge
8:51 136/71 08:55 130/67 (61) after alternate shower, ending with white lips and putting clothes on.

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (doing things, quickly severe, muscles) ❌ vs. post postural ache (rest) ✅/❌ is the only possible adjustment now, stiffness OK ✅: no TT, gardening/moving ➔ 80%/4 ❌, talking 5' ➔ 80%/4-5 ❌. White lips60%? (❌). Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), 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 extremely slow?, with "?15h rest"), 1h very slow, 0h slow/medium/quick
SLEEP (click for details): 8h55, up 5x (50'), 70%/2/5% deep/ except 6:30 A8 sore throat10-60-30% tongue100-20-10% so will have been real burning ✅, everything else OK ✅, Why so tired? ➔ getting up: 80%/2 ✅.

GABA A2/+A3/ A3:0 A4:0 teeth✅ p0 FCS#1✅? (3rd # is lower back unrest)
Sleep 22:05- tongue 100%
23:07 6’ same, rest normal. A4
00:51 6’ (104/56 (55)), rest normal. A5. tongue 40%
2:35 11’ 104/46 (57), sore throat 60% (no idea why) 2:44 fl3’ 91 64 (56)
4:59 21’ 101/58 (55) 5:20 115/64(54), after that dozing, shouldn’tve. no headache
6:20 6’ no headache. 6:24 100 58 (54) after loo, stools -20% cos of goat’s milk.
-7:50 126/60 55 altho not sleeping that deeply, I thought. No headache.
8:24 120/75 (68) despite pee urge
Sum: 1h55+7h50-(6+6+11+21+6=)50’ = 9h45-50’ =

Burnt tongue in the evening, but can’t remember anything histaminey, so praps I did burn it with my first bite of a hot egg? But I didn’t feel the burn, I usually do immediately. Ate quite a few sour grapes in the evening, but they don’t contain histamine.

2) Watching TRIGGERS (updated Aug 23rd 2023) at least once a month with additional symptoms and continually bringing energy down from 20% to 10%, Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% ✅, tongue burning: 10% day, 20% night ✅. Excitement (= stress) (✅): Neighbour's son's "If I may give you a word of advice, just as small word: my father likes things tidy" yesterday is annoying me today - I f...ing hate that kind of thing. But in the evening I laughed with my wife about it, cos it's actually kind of pathetic, and funny, and silly and all to say that and to get annoyed by it too. Stress from doing quite a bit for work, but it was kinda fun once I forced 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.

3) DOCS: Last update (simplified 18th and 23rd): VERTIGO: Aug 9th-14th: No cause of the severe vertigo & wonky gait on the 9th found in stroke/neuro. 20th: Need to take blood pressure and lipids more seriously now, adding meds to all the supps, even if the association with vertigo is unclear. ONCO/URO: Onco Apr 24th was useless up to now. Bladder exam Sep 4th mainly cos of bladder problems (finger exam July 31st, bloods Aug 7th). Click for details.

Starting Feb/March with “B symptoms” (GP Mar 29th: night sweats, cough plus appetite & weight loss), mamila swelling, PSA high Apr 20th. Mar 30th: So lung X-ray OK, Apr 6th: mamilla OK. Sweats OK Apr 9th, appetite OK-ish by June, weight OK-ish too, but down again after vertigo. Apr 24th: Weird, 20’ onco appointment, feedback STILL pending, incl. onco blood results (just others on July 20th). So now uro at least. Feb-bloods: Ω3 needs increasing, much too low.

4) UNDER CONTROL: attention necessary ✅/(✅):
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details on SEIZURES: GABA better up (also for pee pain). Aug 1st, July 25th + 7th were only seizure-ish 4-5x, increase in May-June was stress/histamine/less GABA: LAST Aug 9th: 2x. July 17th (2), Jun 23rd (4) & 16th & 6th (2), May 25th (2) &14th/13th, Apr 16th/15th. Last ESOPHAGUS BLOCKS: Aug 26h, Aug 8th, July 23rd & 16th, May 31st (all 3 cos distracted), before that 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 seizur-ish 4x. 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. 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 - 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. 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”: 75%.

Lessons in self-care: Measuring BP all day is sometimes stressful, but sometimes I feel like it.
Reasons to be cheerful:
a) Bank vole scuttling around (making me wearing gloves even more so I don’t catch the PUU-hantavirus from them).
b) I think a wren in the (red-flowering) currant, at least something like the smallest of birds.
c) After cleaning some of my wild flowers yesterday they’ve all rewarded me with little new blooms today.
d) Managed to plant new seeds everywhere too, down and balcony, and new ideas, only the ones that may still flower in September of it’s warm even later.
Simplified: -
Foggies: Often spilling things, and just calmly.

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