JayCS’s Fibro Blog

2023-09-06 Wednesday - recovery?: Not really. RR/supp changes? Not satisfactory.

What … worked / went wrong … today: Energy still OK-ish sometimes, but blood pressure too high.

How was I today?: Feeling 75-85%-75%-85%-ish (:white_check_mark:), energy today (:x:) - compared, sleep Tuesday night :white_check_mark:, sleep Wednesday night :white_check_mark:, nausea 0% :white_check_mark:, fog 10% (:white_check_mark:), 3 bites, 1 better, 1 still worse, still annoying :x:, vertigo 0%, 100% of the time :white_check_mark:.

Today working mainly on … recovery, RR vs. increasing/tolerating blood meds, energy only watching the added eleuthero (also for BP).

RR: HIGH BP PERIODS: 25th morning 5h, 31st afternoon 50', 3rd morning 4h, 5th: midday 2h, 6th: 9:30-9:50... and 12:00-13:00.
09:29:00 168 104 69 calm, TT, bins, pee urge
09:34:00 150 84 53 after p6
09:35:00 146 88 60
09:37:00 146 83 54
09:38:00 143 83 57
09:39:00 151 85 60
09:40:00 140 82 55
09:41:00 131 77 58
09:42:00 134 88 59 thoughts of to do
09:44:00 139 80 56
09:45:00 144 81 61 relaxing
09:46:00 138 85 60 Todo-thoughts
09:48:00 152 97 64 work mail
09:50:00 154 89 59 Todo-thoughts
10:24:00 162 101 68 after talk, while flush & eating
10:26:00 139 96 64 eating (flush)
11:20:00 164 83 67 after carrying, stairs, p5
11:21:00 132 79 64 reading
11:23:00 128 77 66
12:04:00 165 91 71 forums
12:42:00 125 93 72 forums, up down
12:44:00 153 95 68 sitting, reading, typing
12:45:00 156 94 66 Plus pee urge (p4-5 for 1‘)
12:52:00 163 96 68
13:43:00 176 110 69 pee urge (p4-3 for 1‘)
17:32:00 164 98 75 after realizing lost card & phones, searching, reporting
17:34:00 149 92 73
17:35:00 144 95 71
17:37:00 144 90 68
17:38:00 148 91 73
17:40:00 140 83 70
18:18:00 153 88 67 after cycling to shop to ask, then running up & down 2 stairs for fun & energy, 2 steps at a time
18:20:00 134 92 67
18:21:00 143 86 68
18:23:00 151 93 72
18:24:00 132 86 67
18:25:00 136 92 72
18:57:00 161 96 65 insect oils on
21:10:00 122 84 65
22:02:00 118 78 62
23:21:00 117 76 69
23:22:00 125 78 68
00:11:00 89 62 67 arrh, Linksdrall, Gleichgewicht
01:01:00 102 63 66 P6→3 overheated, sweaty
03:13:00 127 75 64 hard, swung up + down
03:14:00 130 78 62 altho tired
04:20:00 110 81 69 p5 for 15‘‘
05:56:00 127 75 65 vivid dream p5 10‘‘
05:58:00 129 79 67
06:31:00 108 76 71
08:55:00 151 93 58 after feeding up
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 1:2 (moving 20%, talking 10%, counting 0%) ➔ 80%/5 ❌, gardening/moving ➔ 80%/3-4 (❌), talking 5' ➔ 80%/4-5 ❌. White lips80% ❌. Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), click for 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 extremely slow?, with "?12h rest"), 1h very slow, 2h slow, 1h medium/quick
SLEEP (click for details): 7h51, up 6x (30'), all deep ✅. Itch 20% nostril/s20% headache10% in the morning. (✅), everything else OK ✅ ➔ getting up: 80%/2 ✅.

GABA A2/+A3/ A3:0 A4:0 teeth :white_check_mark: p0 FCS#1​:white_check_mark:
Sleep 22:05-6:25, 6x5’ 1h55+6h26-30’ = 8h21-30’ =

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) ✅: Tried to keep thoughts down. 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 Sep 4th: ONCO/URO: Sep 4th all cancer clear, slightly enlarged prostate, med for pee frequency (which I won't be taking). VERTIGO: Aug 9th-14th: No cause of the severe vertigo & wonky gait on the 9th found in stroke/neuro. 20th: Taking blood pressure and lipids more seriously now, but adjusting supps and trying to keep the meds down (cos night RR is fine/low. 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: Nothing to be seen, whether PSA & testosterone bloods or in bladder, just prostate a little enlarge, after phytosterols don’t seem to be working, prescribed a med for pee frequency which I doubt I’ll be taking. 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 31st, Aug 26th, 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 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 1st: NADH 10-20mg 20' again before meals, order Ω3 again (others too), passiflora & magnolia before 1st and 2nd meals instead of in the evenings, eleuthero up to 4x before 1st meal, keep up apigenin and myo-inositol in the evenings, in case. GABA down to max. 6x0,3 eve/night, +3x0,3 before meals. 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 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”: 75-85%

Lessons in self-care:/Reasons to be cheerful: Still not upset about forgetting my phones and cards, but still hoping someone’ll find and return them - they’re not of any use to anyone.
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