JayCS’s Fibro Blog

Symptoms & Treatments
1329

2023-09-08 Friday - recovery? Energy is “OK-ish”. RR/supp changes isn’t.

What … worked / went wrong … today:
It’s still tough, I’m not at all successful in keeping my stress down. Once I’m in the hamster wheel, it turns fast, and I usually can’t snap out of it by myself.

How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:white_check_mark:) - compared, sleep Thursday night :white_check_mark:, sleep Friday night :white_check_mark:, nausea 0% :white_check_mark:, fog 10% (:white_check_mark:), bites not itching any more (:white_check_mark:), UTI annoying, but improving a little.

I’ll leave this as written…
Vertigo 30% at 16:00, ?0% of the time (:white_check_mark:). I’ve been sitting twist-stretched a lot now, maybe that’s contributing. Unbalanced. Up to 50% at 16:20. Maybe twist-stretch in the other direction? Eating late 1st meal at 12:00, stress praps in the morning.
Burning tongue from about 15:00, up to 60% at 16:00, is that from yesterday two half portions of baked beans? And was the wind yesterday evening from that too? Unusual, but maybe with something else together?
This now also makes me doubt about the cardio’s explanation of the vertigo from too low BP getting suddenly too high. The vertigo started at night, where the BP is usually very low.
Is this maybe the BP coming down rather than going up?
Wondering if the tongue burning on the right side is something visible. Walnut only reacts on the left. Yup, it’s bright red on the right side. I seem to remember sometime I bit myself, but that was ages ago. Praps that’s gradually become inflamed. OK, put some calendula essence in my mouth, doesn’t feel bad.
16:58 Difficulty walking. Reminds me I haven’t been practicing tightrope walking any more. I can do it now fairly well part of the time, it varies.
I remember laughing when someone at the cardio said suck a sweet if you have vertigo. I guess that’ll be if blood sugar is low, looked it up: Yeah. So I was gonna eat a dried fig anyway… 17:03 Let’s see. No nausea this time by the way. I’d already drunken a lot to take my D-supps for 2nd meal. Is this all from eating too late? Didn’t I eat enough in the evening of the 8th?
Well I got diarrhea from blueberries on Monday 7th August. On Tuesday 8th, I had an esophagus block from carrots plus chocolate, doesn’t say when, but it’s sometimes a reason to eat less. And I did do quite a bit more that day, cos I had more energy.
Back to now: walking around a bit I’m leaning to the left more, and holding on to things. My lips look 80% blue-white with light off, but 60% with light on, I’d need my wife to say what’s correct. 2nd fig 17:14 with 55% sugar, some dark chocolate with 32% sugar. When standing, I’m constantly changing from one foot to the other.
Do I dare try cooking 3 eggs? Bad idea, the first breaks in my hands, so now it’s fried eggs, even more careful. Egg yolk all over the place. Cleaner than before. Sloooowly down and up.
Just remembered that I ate the last bit of tiramisu far beyond expiry date that I’d opened the day before. Maybe first day was no problem, but 2nd was… - definitely explains the wind 2h later. That and the baked beans together.
I had to go out for half an hour, cycled very slowly and carefully, got off a few times just in case. The dizziness subsided fairly well. Maybe the fresh air, having eaten, not twist-stretching any more.
OK, I hadn’t eaten that many baked beans, had the rest today, no problem.
Having another look at what can cause vertigo, it says a stiff neck, which definitely again is something I had at the time, but hadn’t taken it seriously. Maybe several things. The ones that I could say I had today was sitting twist-stretched too long plus eating less.
On the 9th I’d felt cold before, so it could be a temperature thing too.

Today working mainly on … recovery, RR vs. increasing/tolerating blood meds (as well as definitely supps, NSDR & more), energy, vertigo.

RR: HIGH BP PERIODS: 25th morning 5h, 31st afternoon 50', 3rd morning 4h, 5th: midday 2h. 6th: 9:30-9:50, 12:00-13:00. 7th: 2h, NSDR helped, slight movement brought it up for a time. 8th: possibly high in morning, unsure how many hours. 16:00-17:00 140-150 during vertigo of 20-40%, possibly OK-ish after. Good at night. Decided to now concentrate more on tension rather than measuring first. But then the biofeedback part will be missing.
12:00:00 138 98 86
13:46:00 151 85 91
14:15:00 135 85 87
14:37:00 135 82 82
15:20:00 145 85 79 Down + up stairs, open 2 packages, toiletry
15:23:00 134 85 77 typing
15:51:00 148 93 76
15:52:00 149 88 75
15:53:00 132 87 73
16:07:00 149 83 73 Vertigo 30%
16:11:00 141 85 73
16:18:00 129 81 70 Vertigo 30% despite NSDR
16:35:00 163 94 71 V 40%
16:36:00 156 100 74
16:39:00 146 99 68
16:40:00 151 92 71
16:41:00 155 89 66
16:46:00 157 90 70
16:46:00 154 95 67
16:51:00 146 91 66 After 10‘ NSDR V 20%
16:53:00 148 91 65 after typing the last results
19:17:00 143 91 74 While typing a bit
19:19:00 143 86 75
19:46:00 138 78 71 While typing a bit
22:34:00 134 82 72
00:07:00 125 72 64
00:11:00 122 68 67
02:09:00 101 70 68
03:41:00 120 67 68
05:18:00 118 68 66 arrh
06:47:00 116 91 71
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 ✅: TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/5 ❌, gardening/moving ➔ 80%/2 ✅, talking 15' ➔ 80%/4 (❌). 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 moderately slow, with "12h rest"), 1h very slow, 2h slow, 1h medium/quick
SLEEP (click for details): 7h40, up x (25'), all deep. ✅, everything else OK ✅ ➔ getting up: 80%/2 ✅.

Sleep 22:35-6:40 5x5’ breaks
Sum: 1h25+6h40-()’ = 8h05-25’ =

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) ✅?: 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 7th: VERTIGO: My cardio agrees that I should focus on keeping blood pressure spikes down using supps and relaxation etc., but also meds at the moment, since the RR jumping up from 110 to 160 when I get up is a huge burden for the system and might well have caused the vertigo. Sep 4th: ONCO/URO: Sep 4th all cancer clear, slightly enlarged prostate, med for pee frequency (which I won't be taking). 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”: 70-85%.

Lessons in self-care:
a) Gotta take more care of vertigo, stress and BP.
b) Shouldn’t get caught up in forum stuff, maybe I should take a break from others? I am actually doing so at the moment.
Reasons to be cheerful: Getting things done. Sometimes the wrong ones. Sometimes the right ones. And the main chores are OK. But no matter.
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