2023-10-03 Tuesday - recovery?: Yeah…? RR/supp changes?: BP/RR up? Now research, less checking. VLDN?: Still positive overall, still wary…
What … worked / went wrong … today:
VLDN helped with TT, housework, listening to people for a long time and cycling, but not able to talk that much and trying to arrange some music was much too much of a strain, too much in one go, partly cos of time pressure.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels: ()
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: 
, instead 20:00 (), back by 16:00: , capsules by 17:00, instead 20:00 .
Got caught up doing a music arrangement in the evening and early morning, asked for short-term. This was possible cos of the additional VLDN energy. But it was after I’d done lots. And my blood pressure was up already. And became a hamster wheel. Plus entailed ‘making’ music a little (‘10’ minutes, spread out), now a particularly unwelcome strain. Meant delaying supps and eating. In the evening and morning contributed to tension in bed. But I spose worth it, cos my first work without listening to it wasn’t quite right, and perfecting the correction turned out very well.
How was I today?: Feeling 80-85%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .
Today working mainly on … time management , better self-treatments , RR (), energy, esp. via VLDN .
VLDN
Dosage: Oct 1st 21:00: ~0.05mg, 2nd & 3rd 22:30: ~0.05mg.
LDN 
: 1) Energy 2) lower back 3) sleep 4) night 5) up 6) stiffness 7) more awake 8) vision 9) listening 10) Ache 11) reliability . More?
LDN 
: 1) dreams 2) tenseness (got it down quicker, but need to concentrate on that) 3) itchiness none, 4) woozy - less 5) up early (), but dozed at least, might’ve been ‘excitement’ . 6) diarrhea () - less, plus now 7) belly ache starting at 4:00, so I may need to take it earlier with my last meal and eat my first meal earlier again. 8) calf cramps () - 2-3 in the morning, haven’t had those in ages, but it might be from moving more, like the achiles tendons yesterday. 9) Hangover kind of feeling from midday on, altho dubious slow energy is still there ().
The better lower back might be coming from getting the tenseness down by doing the back exercises early.
The belly problems might be part of the liver and abdomen problems I had before, or they’re the typical LDN side effects.
LDN 
: 1) yellow () 2) white () 3) local pains (). Plus:4) I still feel fluey sick quite a lot of the time (). But that might now be from sleeping shorter, so that’d be what to work on, decreasing the length of my first sleep break. 
It could also be like “sore muscles” from my body having to get used to moving “so much” 
more.
RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), 13th & 20th: FCS decreased work stress at night, 29th: 30'? at 17:00, better after TT (28th not sure if I wasn't moving), less night dip: 27th, first 2h of 29th, all of 30th. 30th: 9:30-9:50, 11:47-11:55 not sure what I was doing (✅)(❌?)(✅). 1st & 2nd ✅✅, 3rd: ✅(✅?) - 140-160 during action, mainly <150, and >160 only twice directly after "jumping" around.
|11:08:00|149|83|75|03.10.23|
|11:29:00|141|91|73|after moving |
|11:44:00|135|87|69||
|12:23:00|145|81|67||
|12:56:00|138|84|65||
|13:20:00|168|98|64|After running (jumping!) down- and upstairs to save things in garden from getting wet, then sitting on barstool typing (forum stuff)|
|13:24:00|158|95|65||
|13:29:00|153|90|64||
|13:33:00|148|90|65||
|13:35:00|149|92|63||
|13:45:00|142|94|63|arrh, come down all the time|
|13:49:00|149|91|64|But trying to quickly work thru forum posts|
|14:05:00|150|87|57||
|14:06:00|151|98|60||
|14:16:00|144|92|57|sofa, typing blog template, hamster wheel, wife annoyed about dunno what|
|14:20:00|148|98|59|low pulse before eating/drinking|
|14:21:00|141|93|55||
|14:22:00|138|93|56||
|14:35:00|169|99|58|after moving again|
|15:31:00|142|89|64||
|15:53:00|157|88|66|arrh|
|16:09:00|155|85|65|after moving|
|16:16:00|141|86|61||
|16:23:00|151|90|63|annoying fly|
|16:27:00|147|85|62|All of these are pretty directly after activity|
|18:57:00|154|91|61|after cycle-walk/rain|
|19:11:00|152|92|66|arrh, after cycle-walk, rain|
|20:12:00|165|95|59||
|20:13:00|150|94|57||
|20:28:00|147|93|56||
|20:30:00|144|87|56|OK, considering working on music, fairly low heartbeat|
|Battery flat, recharging|||||
|05:22:00|140|84|55||
|05:24:00|127|85|50||
|05:25:00|123|85|49|extremely low heartrate|
|06:51:00|147|85|58||
|08:32:00|143|88|53||
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 60%/3 (❌), music 5' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "86%" ✅ and sleep ✅, click for details:
EXHAUSTIBILITY today: “86%". 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): 7h13, up 4x (67'), praps 1x more (✅), all deep except the last hour. I think too short ❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅. Abdomen ache/pressure of 20% from 4 to around 11 (a while after eating first meal), and sore throat at 4 too, so needed long johns additionally to the longsleeve.
Sleep 22:30-6:50, last bit dozing.
0:00 45’+ 6, 2:15 +6’ 4:25 +8 abdomen ache of 20%. 5:18 +8’ , batteries in. 140/84 127/85 123/85. Abdomen 20%. throat 20% from 4 on, despite long sleeve, so long johns. Wasn’t I up at 6 as well?
Sum: 1h30+6h50-(45+6+8+8=)67’ = 8h20-67’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Quite high blood pressure anyway, I was thinking cos of rainy windy weather, then moving ('jumping') a lot, did quite a lot of housework, then I something else, I think work, then we wanted to go out, but then talked with friends outside first for 15', then after 10' got caught in the rain, had to wait 20' for it to stop, when back at 7 I did most of the music arrangement which was asked to be done by tomorrow morning, that was as said the most strenuous. So I spose loads of reason to feel a bit "sick". 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%.
(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: Last update 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 0.05mg. 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
Blood pressure
a) during sports and
b) while talking increases of course, and
c) while eating - I still haven’t done these properly today, but the last two:
d) weather: higher when it’s colder, but also “sudden change in weather patterns, such as a weather front or a storm… abrupt changes in humidity, atmospheric pressure, cloud cover or wind in much the same way it reacts to cold.”
(That’d explain today’s spiking from 13:00 onwards: windy and rainy, and I feel also some of the previous peaks.)
plus
e) activities for reducing it - this small study from India from 2023 puts it very long-windedly, but what increases heartrate, esp. in anticipation, is active conversation, whilst that and both SBP and DBP are decreased by soft instrumental music if it pleases, as well as multi-tasking with tracing a maze with one hand and something else (with “hedonistic pleasure”) with the other, requiring “set-shifting” and the promise of rewards and contentment. Hehe, as a similar study has something to do with “erotic content”, I’m thinking that’s why they’re not getting specific here…
A case where ULDN helped for neuropathic as enhancement for an opioid in the JPSM https://www.jpsmjournal.com/article/S0885-3924(03)00139-8/fulltext
Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization - PMC
Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization
2018 Toljan & Vrooman
LDN has been “shown to reduce glial inflammatory response by modulating Toll-like receptor 4 signaling in addition to systemically upregulating endogenous opioid signaling by transient opioid-receptor blockade”
whilst ULDN In “a dosing range at less than 1 μg per day, oral naltrexone or intravenous naloxone potentiate opioid analgesia by acting on filamin A, a scaffolding protein involved in μ-opioid receptor signaling.”
“A dosing range between 1 μg and 1 mg comprises very low-dose naltrexone (VLDN), which has primarily been used as an experimental adjunct treatment for boosting tolerability of opioid-weaning methadone taper.”
Michelle Moser LDN is usually taken before bedtime, empty stomach seems OK, if not tolerated well then in the mornings. What German youtuber Alexandra adds is that evenings might be better for sleep, and surprisingly that seems to be helping, as I seem to only have been up 3x tonight, unless I forgot to note it once, then 4x.
Quality of life: 85%
Lessons in self-care:
VDLN is one target, but not overdoing it, plus understanding BP better rather than measuring.
Reasons to be cheerful:
Fairly hopeful about VLDN working out - still lots of possibilities.
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