2023-10-01 Sunday - recovery?: Sleep Saturday night longer, not better, TT better, but sleep Sunday night after LDN slightly better, less breaks, and feeling better. RR/supp changes?: better, may be getting the hang of it. LDN?: 4-5 positives - so far so good.
What … worked / went wrong … today:
Bit foggy all day, 5’ service brought pain up to 5, let’s see how LDN goes… hmm… went quite well… despite not knowing how much is in the capsules, cos it says 0.005g instead of 0.0005g. so I took only a speck: less lower back problems, slightly less sleep breaks, felt better at night, just unusually a dead cat image in dreams, other dreams vivid/intense, but starting GABA was weirder and that calmed down quick. Plus energy improvement Monday morning, see there.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less (), jump off hamster wheels: () - not too long in them, but altogether a bit too much distraction.
Self-treatments: Jaw, wall sits , balancing , supps by 15:00: 
, I think 20:00 (), back by 16:00: () (partly 10:00, partly 22:00), capsules by 17:00: couldn’t be bothered, most are fairly full.
How was I today?: Feeling 75-85%-ish (), energy today (), sleep Saturday night () - slept fairly “well” but didn’t feel good, sleep Sunday night (LDN speck).
Really bad from 11:10-11:30 was sitting indoors to get better wifi to send off these posts reliably without glitching. Because I was near my neighbour’s door and he had his telly and radio on. Not too loud, but after a few minutes I started hurting all over, went up to 6. Not gonna ever do that again. Ear plugs or somewhere else.
Similarly bad was 5’ of service - with ear plugs.
Today working mainly on … time management (), better self-treatments , RR , energy ().
The HELP apheresis HHM questionnaire I was pointed to by healthrising and did Friday came back today saying I have severe HHM and need their “blood washing” treatment, see “research” below.
RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅: 16:00)✅ , 28th:(✅: 17:15)✅. 29th ✅(❌)✅ afternoons risky? 30th (✅)(❌?)(✅). 1st ✅✅, night dip took it's time, everything else fine, yesterday re-visited better than thought, depends.
|09:47:00|148|90|67|lots of moving, higher pulse after eating|
|10:10:00|151|86|65|lots of moving again|
|11:46:00|146|91|59||
|11:48:00|148|81|59||
|11:52:00|139|89|60||
|12:18:00|139|95|66|working. Pee urge (it’s from the cuff!!) arrh|
|12:22:00|149|83|56|after stairs to pee|
|12:24:00|135|87|56||
|12:28:00|135|91|56|lower heartbeat before eating?|
|12:47:00|165|96|59|after talking with neighbour (loud voice) for 5‘, and working|
|12:49:00|154|92|||
|12:56:00|139|93|56|working/tabs|
|13:21:00|159|99|56|after pee/stairs/surprise mail|
|13:23:00|138|86|56||
|14:05:00|150|91|63||
|14:10:00|122|80|75|up down up down pee urge|
|14:49:00|137|83|70||
|16:13:00|150|83|68|After stairs/pee, itchy face from hair|
|16:15:00|150|82|67|Take this seriously!|
|16:17:00|137|82|66||
|16:26:00|142|94|67|slight toothache|
|18:19:00|166|98|61|stairs down|
|18:21:00|150|97|60||
|18:22:00|149|85|62||
|18:24:00|139|85|59||
|18:27:00|130|80|60|8 mins|
|18:57:00|145|92|58|after service 5‘ hurt 5-6|
|19:01:00|153|91|61||
|20:28:00|141|98|59|EATING!|
|20:29:00|151|92|60||
|20:42:00|146|88|60|while eating, same as the past days|
|21:01:00|143|84|60||
|21:02:00|137|93|62||
|21:04:00|147|97|66||
|21:04:00|149|92|64||
|21:43:00|145|83|65||
|21:44:00|137|83|60||
|22:34:00|123|71|61||
|23:51:00|124|74|64|Least dip, 135 to 124 = 8% of 135|
|01:06:00|114|72|62||
|02:38:00|117|66|62||
|04:20:00|103|70|55|Lowest, strongest dip, 135 to 103 = 24% of 135|
|05:48:00|117|87|59||
|07:31:00|129|77|60||
|07:43:00|134|79|57||
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. No TT :0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌ (a few minutes of hearing my neighbour's telly and radio on, and 5'+ in service). White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:
EXHAUSTIBILITY today: “90%". 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 "14h rest"), 2h very slow, 0h slow, 0h medium/quick
SLEEP (click for details): 8h09, up 5x (30'), all deep, FCS not nec., so when I got up (LDN?). !0.05mg LDN . 2:25 5'+5' break: vivid dreams, but not that much more. Damp 20% with long sleeve on, but with it off (first break) sore throat 20%. "Feel better" than the last nights. 5:44 dead cat on street at aboout 4-5 (LDN?), nostrils/sinus headache 5%. ✅, everything else OK ✅, 85%/2 ✅, ➔ getting up: 85%/2 ✅.
Sleep 22:30-7:09 Sum: 1h30+7h09-(6x5)’ = 8h39-30’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: 5' service, and generally talking. 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%.
3) DOCS: Last update Oct 1st/2nd: Need a new uro appt. cos of the 1cm hard lump since the bladder exam. And a new dentist appt. cos a big filling seems to have fallen out again yesterday (annoying, cos it often falls out, but I don't want a bridge). 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 (✅)) I hadn't been mentioning it, but if I hadn't cold showered at night the previous 4-5 nights, my lower back unrest would have made me stay up longer, was very uncomfy - seems better with LDN??:
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: 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 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 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
a) When I got the HHM test back I was wondering how reliable, if it’s another bogus, looked at the research they linked to - it was pretty much their on, on researchgate, not pubmed, critical articles like this on bmj from 2022. After first excitement as it’d be accessible to me, I’m not at all sure about the cons.
b) Night time blood pressure dip should be 10-15%, mine is usually >30% from 130 to 95, so that’s like I think much more than normal, whether that’s necessarily a bit bad, like I’ve been thinking, I’m trying to research.
More about blood pressure (during sports, talking, eating, activities to reduce) tomorrow!
Quality of life: 85%, “Feeling well”: 70-85%.
Lessons in self-care:
a) To check my bp when together with my wife I could see if going into my room is “acceptable”. 
b) At least on sunny days it’s much warmer outdoors than in my room (facing north).
c) I need generally to restructure what I do when now daylight is becoming scarcer and I want to keep use of artificial light down too. I can use the (south) balcony for reliable wifi rather than the staircase.
Reasons to be cheerful:
a) Squirrel float-jumping around the garden a few times.
b) Saw a bird of prey flying fairly high at 8:00, trying to find out what exactly it was, a sparrowhawk or goshawk, cos the tail was very long and slender, which would be a sparrowhawk, but it seemed bigger (so definitely a female) and flight was calm, slow and straight, which would be a goshawk. Later heard a pieeew in the garden. That would be a sparrowhawk. Also clarified today that kestrels kill with their beaks, sparrowhawks and others with their claws, so that’d confirm what I thought that it was one of our local kestrels that got the Kami and one of the blackbirds. Arrgh, our locals are not kestrels, they’re peregrines!! But both kill with beaks. (And sparrowhawks.)
b) I’m starting to get curious and interested in finding out the less common birds by their calls, not sure how to yet, but I’m in contact with our local ornithologist whose books I can get off of.
c) 5mg or 0.5mg LDN? I asked for 0.5, and am pretty sure the pharmacist will have done that, but she put 0.005g on the label, which would be 5mg… I took a tenth of a capsule just in case. Maybe could in any case first.
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