2023-10-04 Wednesday - recovery?: The “slight” improvement is stabilizing - relatively it’s an enormous improvement, I can now do four-fold, albeit slowly (however playing TT 4x is still the limit). RR/supp changes?: A bit more research finally… (actually Thursday later). LDN?: Good effects stable and increasing, bad effects dissolving. If the bad effects decrease to 1, e.g. the slight heartburn sometimes, I’ll want to increase the dose.
What … worked / went wrong … today:
VLDN is definitely working so far.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels:
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: , back by 16:00: , capsules by 17:00
How was I today?: Feeling 80-85%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .
Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN .
VLDN: 13 : 2 
.
Dosage: from Oct 1st ~0.05mg, 1st 21:00, 2nd & 3rd 22:30, 4th: 20:30
VLDN 
: 1) Energy 2) lower back 3) sleep 4) night 5) up () 6) stiffness 7) more awake () 8) vision () 9) listening 10) Ache 11) reliability 12) 26’ walk no problem 13) shorter recovery times 14) local pains less, even after 26’ walk, clavicle only slightly.
VLDN 
: 1) dreams: no 2) tenseness: improved () 3) itchiness: no 4) woozy: no 5) up early: no 6) diarrhea: no , 7) belly ache: no 8) cramps: no 9) hangover: still , 10) heartburn sometimes ().
VLDN 
: 1) yellow 2) white
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: ✅(✅?). 4th ✅✅ - high as expected when moving a lot, doing sports. RR when it's cold outside or inside my room will likely be higher. Kind of contradictory if I now take my tops off so it's on my skin, like recommended....
|09:02:00|171|100|49|extremely low heartrate|
|09:21:00|152|97|54|arrh, low heartrate before eating (10:00)|
|10:10:00|164|95|77|moving, eating.|
|11:19:00|175|94|80|after TT|
|11:20:00|152|96|76||
|11:21:00|158|87|76||
|11:42:00|139|86|68||
|11:44:00|140|84|65||
|12:06:00|160|98|70||
|12:07:00|148|94|61||
|12:56:00|161|101|60||
|12:57:00|171|97|63||
|13:14:00|151|98|56||
|13:20:00|144|94|55||
|02:52:00|109|68|70||
|03:37:00|99|69|60||
|05:25:00|107|74|67||
|05:26:00|121|79|61||
|05:28:00|116|76|60||
|05:28:00|115|83|62||
|07:29:00|139|89|63|after undressing|
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 20%, counting 5%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4 ❌. White lips80%? (❌). Exhaustibility "84%" ✅ 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 "7h rest"), 2h very slow, 5h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h27, up 6x (52'), all deep. Only heartburn 30% at 23:00. Forgot to prepare the 0.3g GABA, but realized at midnight, and could take the evening GABAs in the (increased) sleep breaks. ✅, everything else OK ✅, 70-80%/2 ✅, ➔ getting up: 70%/2 (✅).
Sleep 21:40-6:59
23:10 15’ PEA order. heartburn 30%, 0:33 5’ heartburn 3%
1:55 5’ heartburn 0% 22:43 8’ 109? 3:35 12’ 99 5:22 7’ 4 RR: 107 over longsleeve, 3x higher on skin(?).
Sum: 2h20+6h59-(15+5+5+8+12+7=)52’ = 9h19-52’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Kept it down by making sure I got the stress stuff finished by early afternoon, so I could shut down after. 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: how to take blood pressure properly
Prevalence of pseudoresistant hypertension due to inaccurate blood pressure measurement - PMC Bhatt et al. 2016:
Proper technique is … rarely followed: correctly sized cuff; placing the cuff on skin; sit; rest 3–5 minutes before; no other activities; avoid operator bias, even more exact was their type of measurement: The BpTRU device takes 6 consecutive BP measurements one minute apart providing an average based on the last 5 measurements, 5’ rest, quiet room, back supported, feet on the floor, with the arm used for measurement supported at chest level and placing the appropriately sized cuff … directly on the skin on the non-dominant arm, physician left the room allowing for unobserved BP measurements.
“Whether guidelines should be revised to not have a 5 minute rest period with use of devises that take serial readings is an important methodological question for subsequent studies.”
“An average of multiple measurements could also explain a portion of the observed BP discrepancies between the two techniques; perhaps by regression to the mean. A prospective trial with randomization to the timing and number of BP measurements would be needed to differentiate between these effects.”
Relevance to me: Most of my measurements are during or immediately after activity, esp. the first ones, I never wait - deliberately to see how high it is then and how the reduction curve is. This appears not really to have been researched properly as it says in this study. It also means when I’m in the area of 150 then it might well be completely OK, as I’m sometimes not sitting, hardly ever am doing nothing, I’m usually reading or even typing, if I am it does go down more. Apart from that the main thing I could “improve” is cuff on skin, but I’m still usually outdoors and it’s getting chilly… I believe taking an average is oversimplifying by watering down my varying variability (sic, cos sometimes it’s a jumpy reduction, sometimes a gradual constant one), and when they talk about “regression to the mean” that’s part of what I mean.
Still to do: Blood pressure…
a) during sports,
b) while talking,
c) while eating… etc.
Quality of life: 85%
Lessons in self-care:
I think I might be able to increase pushing thru the pain a bit more, seeing as so far I haven’t had a bad backlash… 
.
Reasons to be cheerful:
a) Fun learning more bird sounds.
b) Robin song is increasing, in the evening, and a loud one for a short time before my bedroom in the morning. My wife also remembered a year where she’d heard a robin in November, half-correcting her attitude that they’re only singing cos it’s the last bit of summer.
c) Managed to be up almost with the dawn and see the jackdaws flock out a bit. (I’ve always been up earlier and then forgotten to watch and listen, or then later.)
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