2023-10-09 Monday - recovery?: Bit better after a while. RR/supp changes?: Feels OK, but not checking. VLDN?: This week 0.125g in the mornings, cos I’m not sure about sleep.
What … worked / went wrong … today:
Slept a bit long Sunday night, the morning seemed a bit of a struggle but came out fine once I was playing TT. The problem may be the energy is there, but I feel sick and Achey if I use all of it.
Screen curfew at 19:00 and changing VLDN to the mornings: decreased sleep breaks to 4, <30’ 
. Let’s see which, or both, or neither…
Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels ().
Self-treatments: Jaw , wall sits - well actually a horse stance , balancing , supps by 15:00: - in bulk, back by 16:00: , capsules by 17:00 ( - not that necessary today, GABA half-capsules next).
*As a joke I balanced the table tennis bats an ball on the metal net of our outdoor table (cos the table was wet from rain) and said to my mate: “They told me in the hospital to do balancing exercises”! (I wasn’t sure if he’d think it funny, but he did.)
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .
VLDN
Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th 10:00 0.125mg.
VLDN 
for:
- Energy up from 10% to 18%: for activities - better now I’m more careful, walking: up from 5’ to 30’ - actually longer, but after that time of keeping up with my wife I had to drop back, slow down and take breaks, listening: up from 3’ to 15’ , stiffness - always up stairs quick still, shorter recovery times - now I’m not overdoing it, all constantly . But
: still yellow/white face and black eye rims. - Pain: overall Ache () - less again now I’m toning down, local: lower back - still no problems, less - hardly new problems, hangover - less when toning down. The Ache has definitely not improved as much as the rest.
- Muscles: eyes = vision () - off and on, bladder: pee frequency & urge () - not pee, but evening screen time or evening VLDN may be the main cause for increased sleep breaks…:
- Sleep: feel better in breaks, waking up better, more awake - after screen curfew at 19:00 and VLDN in the mornings sleep breaks decreased to 4, <30’.
VLDN
Nothing any more, only as ever needing to “curb my enthusiasm”. An hour or two after taking the first 0.125 dose I got a strong pain in the back of my left thigh, when starting a walk, but it got better after 20’ and didn’t repeat. Never had it before that I can remember.
How to continue: As planned Sunday: Increase dose, but avoid strain by only using half the energy I feel. Taking it in the mornings now to see if sleep breaks decrease.
RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease.
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 3:1 and 2:0 (moving 30%, talking 20%, counting 0%) ➔ 80%/3 (✅), not much gardening/moving, except shop, but cycling to shop and table tennis was OK (fast) ➔ 80%/2-3 (✅), talking 15' ➔ 80%/4 ❌, music 5' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, click for details:
EXHAUSTIBILITY today: “82%". 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 "8h rest"), 2h very slow, 4h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h15, up 4x (24'), all deep ✅, better after pulling screen curfew forward to 19:00 and switching VLDN to the mornings, tongue burning higher in the evening before cos of 100g baked beans, everything else OK, incl. belly (LDN) ✅, 80%/2 (✅), ➔ getting up: 70%/2 (❌) - not restored, not awake, as usual at the moment.
Sleep 22:35-
23:59 4’
1:05 4’ heartburn?
2:35 12’ hp
5:07 4’
-7:14 .
Sum: 1h25+7h14-(4+4+12+4)24’ = 8h39-24’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Doing another music arrangement first thing was actually too much of a strain, altho it seemed fun - but difficult. Talking with a very talkative and also with my other table tennis mate after the evening games was the other big strain. Click for list, incl. Sept summary added Oct 2nd...."
(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%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) 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%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…
3) DOCS: Phoned cardio to bring my appt time forwward, more tomorrow. Last update Oct 9th: Need to phone all these! Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). 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 (✅)):
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: 1x/m - 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: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Sep 19th?? 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (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 Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. Increased ginkgo to 3 again pretty soon. 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.
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.
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, 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
Quality of life: 85%
Lessons in self-care:
a) Toning it down paid off from this afternoon on.
b) Pulling screen curfew forward seems to be working.
Reasons to be cheerful:
a) The “balancing exercise” before table tennis of course wasn’t the only reason to be cheerful, I don’t mention it, but the laughter is another really good thing about table tennis.
b) Found a slug and then a snail in the bird food box, both as pretty as they come. I chucked the slug down as it was on the way to the food, but left the snail. Later looked out for the snail and where it had been was now one of our bank voles looking at me, completely still for about 5’, so I could take pictures.
c) Robin song more and more, sunflowers and asters more too.
Simplified: I asked my mate for a typecase to see if I can get my supps sorted in there for praps a week. Got not typecases, but just small plastic boxes with 10-12 big compartments from my mate, which is actually much better, cos that’s about what I need per day to get my 80 capsules in, and he’s got more if I find they help, just got to decide if the big or the small ones.
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