2023-10-20 Friday - recovery?: Still good. RR/supp changes?: Seems OK. LDN?: jumping up to 0.5mg from 20th on. 
It’s supp drink earlier before the 3rd meal that will be better for sleep!
What … worked / went wrong … today:
Pretty good actually, getting used to the cold rainy weather too.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels . Try again to pull 3rd meal forwards to 18:00-19:00. (): Hmm, supps at 19:00, doesn’t seem early enough.
Self-treatments: Horse stance , balancing , 
.
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Thursday night , sleep Friday night .
Today working mainly on … time management , better self-treatments , RR , energy, esp. via (V)LDN .
(V)LDN (0.5mg would be smaller than usual, but still no longer VLDN)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg
LDN 
for:
- Energy up from 10% to 18%: for activities - OK till hangover came up, walking: up from 5’ to 30’ - completely normal brisk speed for 23’, listening: up from 3’ to 15’ () - found some melodic acoustic guitar music I could listen to longer, stiffness - yep, shorter recovery times - think so, all constantly - yep. But
: still yellow/white face, black eye rims and white lips - very fitting to the hangover feeling… - Pain: overall Ache - yep, local: lower back - yep, less - yep, hangover - once again, at 14:00, from increasing the dose, not from overdoing it.
- Muscles: eyes = vision () - too dark day to decide!, bladder: pee frequency & urge () - OK-ish.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake - OK-ish.
Nothing really since Oct 18th , except 20th: hangover 14:00-17:00, but hardly GI (slight pressure left upper abdomen 7:00, but firm stools), no weird dreams.
Interesting reading on this German site that LDN might make listening to music less pleasant, anecdotes not conclusive. In my case listening to music had become a problem before LDN, I first noted it on Sept 24th, and started LDN on Oct 1st.
How to continue: Side effects of 0.25mg gone in 2-3 days, so jumping up to 0.5mg on 20th. No side effects, so staying there a few days, no further improvement either.
RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅, see details) actively trying to decrease? (✅) - slomo.
|16:08:00|154|76|60|20.01.23|
|16:09:00|146|85|58||
|16:10:00|138|85|59||
|16:11:00|143|85|61||
|16:12:00|135|82|58||
|00:26:00|128|64|48||
|05:02:00|108|73|62||
|07:09:00|132|87|53||
|07:16:00|117|81|52|having typed|
|07:19:00|123|77|57| „|
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT, I could have tho, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 (✅) - depends, music 15' ➔ 70%/3 (✅) - depends. White lips 80% (❌). 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 "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick
SLEEP (click for details): 8h05, up 4x (24'), all deep. ✅, thirst headache at 5, BP OK (108/73), everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:15-
0:23 7’ 0:29 128/64 48
1:19 4’
2:25 5’
4:55 8’ thirst headache? → problem for my idea to pull drinking forward. 5:02 108/73
-6:44 overfirm stools (#1?)
Sum: 1h45+6h44-(7+4+5+8=)24’ = 8h29-24’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: getting 48L of almond milk on and off my bike was a bit tough, but OK. 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.
Summary (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 VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling. Listening 15’ to very selected music improving. 20th LDN 0.5mg.
3) DOCS: Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I'm not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn't help for sleep breaks, and thirst and headache at night) Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. 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 - Oct 18th/19th (3). 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: Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. 2x 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 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: LDN 0.25mg, mornings, 20th: 0.5mg, mornings. 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. 16th: Silymarin 2x.5g now, LDN 0.25mg. 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?
LDN this German site says works by blocking µ1-Receptors for 4-5 hours, which increases endogenous opioids (endorphins), which are anti-inflammatory, as well as decreasing the neurotransmitter glutamate which decreases overexcitability of the cells. Once the blockage stops, this starts working via a rebound effect.
Wikipedia says the endorphins might upregulate the immune system and the anti-inflammatory effect might be from antagonizing toll-like receptor 4 found on macrophages (incl. microglia).
Normal dose of naltrexone if I understand wikipedia correctly reinforces GABA.
Quality of life: 85%
Lessons in self-care: -
Reasons to be cheerful: After “e) human life” and “f) environment” I’ve now added “g) my body”.
a) Plant life:
aa) Got more red leaves and pink petals.
ab) About time I solved more photos.
b) Bird life:
ba) Beautiful jackdaw evening round at 18:15.
c) Animal life:
d) Plant, bird & animal life:
e) Human life:
f) Environment:
fa) Rain all day, first cold then warm - all no problem, outside as much as ever, just no table tennis.
fb) Getting used to being out in the dark a bit, did it in the morning too.
g) Body:
ga) Hangover only 3h, rest of the time fairly able-bodied.
gb) Wow, I can now pretty reliably go for a fast walk with my wife, since (V)LDN, that’s real fun.
Simplified: -
Foggies: Still dropping / dripping things: Need to take more care and not get in an excited rush.
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