2023-10-02 Monday - recovery?: Yes! RR/supp changes?: LDN?: Helped!
What … worked / went wrong … today:
LDN worked overall, time management more like “just in time”.
Habit encouragement… :
Time (= stress) management: Blog earlier (
), forums less , jump off hamster wheels: ()
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: 
, 19:40 (), back by 16:00: , 19:30 (), capsules by 17:00 , 19:50 ()
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Lots of energy, but “tense” till midday, TT 4:0, some pain, but can I really use this energy or is it once again fake? 9:44 surprisingly clear vision, 11:37 still. But 11:37 after standing working pain of 6, as well as some stiffness, despite energy still being OK…
Today working mainly on … time management, better self-treatments, RR, energy, esp. via LDN (very low, but fast! 
)
LDN - or rather VLDN, very low dose naltrexone (ULDN is ultra = 1µg/1mcg)
(VLDN or ULDN are sometimes used together with an opioid for pain.)
LDN dosage: Oct 1st 21:00: ~0.05mg, 2nd 22:30 ~0.05mg (if the pharmacy has compounded properly and not ten-fold)
LDN 
: 1) Higher energy all day, for TT 4:0 at 9:00 till 20:40 shop & back full speed . 2) less lower back unrest , 3) less sleep breaks , 4) felt better at night , 5) swung out of bed , 6) hardly any morning stiffness , 7) fairly awake early (good or bad), 8) often clearer vision , 9) I can listen to my mate talking longer, 10) considerably less Ache from overdoing it . 11) Energy more sustainable, reliable, stable without (as opposed to the additional energy from Chinese acupuncture of cryotherapy) .
LDN 
: 1) dreams 2) tenseness with the energy at first (), back exercises helped early Tuesday morning. . 3) Itchy at 22:30 (arms, left face, upper left neck/back) 
, but only then , and I believe it was mainly a B3-flush, 4) woozy/unbalanced in a different way at night , 5) awake after 7h seems a bit too early , 6) twice poo in the morning, 2nd time soft/diarrhea ().
LDN 
: 1) still yellow-white face 2) and white lips says my wife. 3) still local pains like clavicle (or odd achiles), I had nothing else at the moment.
How much naltrexone is in one of my capsules?!? - The prescription I asked for said 0.5mg. On the label it says 0.005g = 5mg. The pharmacy first thought they’d made a mistake. Then they called back to say all’s well, only “the computer” made a mistake on the label. Well… I can’t quite believe that. So I’m keeping the dose minimal first specks.
The pharmacists couldn’t believe that it’s no problem to take a rough tenth of the capsule. The difference would be 0.04-0.06mg, which may seem 50% more, but compared to 0.5mg or 50mg it’s absolutely nothing. So I just have to see myself where I land and then praps get that amount compounded, if there is a next time.
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 ✅✅.
|09:52:00|142|81|67|LDN energy, heartrate high altho not eaten|
|10:17:00|140|87|69|after eating and talking|
|11:10:00|157|94|72|stairs, moving, arranging|
|11:25:00|142|85|73|after talk & phone, typing, standing|
|11:48-51|154|98|70|after phoning about 10-fold LDN|
|11:57-12:00|149|91|70|While typing lyrics a lot, arrh|
|12:28-12:31|158|98|66|While typing lyrics a lot, arrh urge|
|13:31-36|161|98|62|Moving, standing, pee urge|
|13:53-57|146|91|56|Having peed, moved, sitting|
|14:20:00|168|99|66||
|14:21:00|155|89|61||
|14:23:00|139|92|66||
|14:51:00|160|87|63||
|14:52:00|146|89|61||
|15:19:00|140|89|69||
|17:52:00|119|80|66||
|19:49:00|138|85|57||
|19:54:00|148|90|57||
|19:57:00|131|85|60||
|20:24:00|145|92|58||
|20:25:00|132|87|54||
|20:40:00|132|83|55||
|21:28:00|139|84|67||
|22:42:00|143|79|62||
|00:46:00|127|73|67||
|00:47:00|115|69|64||
|01:22:00|112|64|57||
|02:58:00|111|71|60||
|04:36:00|110|68|61||
|06:34:00|101|71|68|despite having swung out of bed.|
|07:17:00|147|85|70|after jumping up from sofa|
|07:19:00|127|73|61|despite sitting on hard window will|
|08:46:00|142|87|60||
|08:48:00|130|85|66||
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (easy, moving 20%, talking 20%, counting 0%, picking up 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌ (= improvement ✅). White lips80% (❌). Exhaustibility "84%", so relatively "✅" "much" higher (+60% energy) and sleep ✅, click for details:
EXHAUSTIBILITY today: “84%". 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): 6h50, up 3x (50'), all deep, plus praps 30' dozing, dunno, I didn't know I'd only slept so short, and my BP was only 101, but was feeling maybe I should be trying to get to bed at 21:30 anyway. Bit difficult seeing as it's now dark both in the evenings and the mornings. Headache 15%, not sinusey, but frontal helmet. ✅/, everything else OK ✅, 80%/2 ✅, ➔ getting up: 85%/2-1 ✅. Woozy all night, sore throat, but down again as soon as I put my long-sleeve on (like the past week or so).
Sleep 22:40-6:20
5’ → 0:42- 6 → 1:12 112 1:18 = 40’
6:30 101: Does that mean I should continue sleeping? I’ll try. 6:34- after poo. 40’+5+5! Sum: 1h20+6h20-(50)’ = 7h40-50’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. SEPTEMBER SUMMARY: 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.). Oct 1st starting LDN... 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.
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.). 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 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 (✅)) Still cavicle a little off and on, and stabby pee pain, rather than bladder too, lower back unrest had been worse before LDN, I'd forgotten to put the esophagus block in here on Sep 30th:
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose40%, 2nd time (), 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: 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: Sep 30th. Sep 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Sep 19th?? or so. 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: 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 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. 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 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, 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:
‘Research’ today
Blood pressure
Still didn’t manage to check what’s tolerable/normal
a) during sports,
b) while talking,
c) while eating, plus
d) activities for reducing it.
e) No chance to find the answer to this question directly: If I get up and my bp is still 101, should I try continuing to sleep or not?! My own answer is and was: yeah, try.
Quality of life: 85%
Lessons in self-care:
Good to have been wary about the LDN!
Reasons to be cheerful:
a) Luckily I’m a patient (or what’s the opposite an impatient? 
) that can take a compounding pharmacy’s boo-boo in his stride and use it for the good/better…!
b) Found both lost things again. Good thing about being overtense is getting
Simplified:
a) Washing hair in the “long autumn evenings” now is probably a good time.
b) For transferring the bp readings (from the gadget to my table) I found that I can usually remember numbers better if I say the first one (aural memory) and just look intensely at the 2nd one (visual memory). Almost perfect, and easier, less strain.
c) Ah, found my two thingies again (see below) in the morning!
Foggies: Lost two thingies again, my wife: 
- but she’s lost just as much as me the past few days. However as we always grimly joke: “that’s something different”.
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