2024-01-20 Saturday
Summary:
- LDN (3mg):
: Energy 30% (“pity”, not 32%, or rather only sometimes and in the evening quite a bit less), TT 2:2 , walking / cycling 30’, seemed OK at first, harder in the evening at shop (), it again feels like on Friday a certain kind of stiffness is better (downstairs), a certain just as bad (upstairs), along with variability. - Triggers: Main? Food?
- Self-care: Successful distraction from potentially worrying! Too much? Up earlier! 2L/d!
- Cheer: Noting more! Harley ate 181 syringes of mush! (details how) Birds ice bathing! Woodpigeon battles. Binoculars better! Bank vole nest. Red squirrel cute behaviours. Nice colleague mails. (Luke-)cold showering is Iron Man.
- Simplified: Better day start! Distributing stuff effectively!
- Foggies: Often clear-headed!
(V)LDN: Jan 16th- 3mg. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense 
. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 10' ➔ 70%/3 ❌, music 25' ➔ 70%/3 ❌, white lips 70-100% ❌, TT 2:2 (moving 20%, talking 10%, counting 20%) ✅, moving (cycling earlier OK, strangely more difficult in the evening, different kind of "stiffness" ➔ 80%/3 (✅), SO post exertional malaise (✅), "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ (68% only sometimes, but in the evening quite a bit less) and sleep 7h50 ✅ ("PPA": 2 ✅). Energy profile: medium, with "4h rest", 0h very slow, 2h slow, 10h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h50, up 3x (15'), all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:00-tog-7:05, Sum: 1h+7h05-(3x5=)15’ = 8h05-15’ = 7h50
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Jan 11th-18th: contrast dye (doc thinks excipients), then OK, except some nausea. Histamine foods: just a little, with no problems ✅, appetite seemed OK. Strain ✅: Colleague mail, turned out OK. Click for list...."
(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!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(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).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(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%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last.
3) DOCS: ONCO: #2 (Jan 8th/11th/18th): nothing in bloods or contrast CT, believes it'll be nothing docs can find, the week of reactions likely from some excipient(s). CARDIO (Dec 11th): Rosuvastatin? Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
CVD med effects: Atorvastatin Dec 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
4) UNDER CONTROL ✅ (attention necessary (✅)) - Less carnitine cos order taking ages. Less magnolia bark and pine bark cos of possible vertigo side effect, no feverfew (serotonin and possibly dizziness as side effect). Less histamine/DAO. Supp costs up from 350€ gradually since LDN to now 400€.
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th(?) (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. 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: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/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. Nov: salivating technique(s) for dry mouth:
Supps Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
a) Friday eve I’d seen a colleague writing and decided it might be worrying (from experience), so didn’t read, then distracted by finding an irritating forum post, just enough to prioritize that every time my mind wandered back to what the colleague might be saying. And this morning it turned out it was very nice, but also weird, cos he believed he’d seen me at work talking to boss and offered to help, which is perfect telepathy, just he can’t have seen me at work even an hour, cos that’d cost me a week or recovery.
b) Wife said I did a bit too much today, altho to me it seemed 4-5 short things. Whilst yesterday I did more housework. OK, I hung up the washing for her which is a heck of a strain for me and cleaned the sink and the 2 vinyl floors (best cos cleanest and less strain is once again kneeing and just using hands).
c) Getting up earlier (one sleep break before usual) is doing my self-discipline, self-care & diligence a lot of good (out more, getting things done better), altho I’m not sure if <8h is enough for my body.
d) Managing to get back to 2L/d to get the contrast out more. Even managed to catch up vomiting Monday where I’d only drunken 1L.
Reasons to be cheerful: Today I’m thinking I’ll write down more reasons, cos I feel I’m leaving out a lot.
a)-d) Plant, bird & animal life:
b) Birds:
ba) Robin ice bathed again in the dusk…
bb) Already heard Magpie at dawn.
bc) Woodpigeons battling near last year’s nest (in semi-dawn), not sure if territory or unsuccessful mating attempt.
bd) I’ve realized that frost is just as difficult water-wise as drought, if different. For flushing the staircase toilet I’m needing to use water stored in the cellar from the summer.
be) Getting used to using the binoculars, aiming quicker, so less nauseating.
bf) Magpie and carrion crow down close, and a small pair I couldn’t identify.
c) Animals: ca) Harley ate 181 syringes of mush today and kept his weight better, seems to have been eating in between too.
cb) 43 syringes first meal Sunday, after chicory tips.
cc) He’s taking so much cos I’m using 4 different kinds of mush and I’m continually changing the patterns how I use them, so he gets a lot of variety, which seems extremely important, as well as knowing which ones he likes how, like one is coarser, but nice, so i alternate that with fine-grained ones. The first 20 syringes 2 types in a variety of ways (basis is 1 and 1, then 1/2 and 1/2), then the other 2 types, then alternating and mixing more and more towards the end.
cd) When he suddenly breaks off feeding and runs to his cardboard box, I thought he was just finished, but today he had to pee immediately (he’s actually pretty potty-trained), so good to know.
ce) Cleaned up the bank vole’s cellar area (masked & with gloves) and found one died a short while back, then found the other in a plastic bag with cloths in it, it finally got away, and poked head thru hole if can come back in. Put a small cardboard box with straw and woolen sock in front of the hole neighbour had made. Don’t think that’s enough, but better than nothing. Maybe I can renew it once or twice a week.
cf) Red squirrel so cute sitting with “hands” together. Then chucking nevously near the 6 pigeons all in the same area of the cherry, tail tautly up back, as if nervous about them, but then suddenly relaxed and staying there.
e) Human life: (ea) TT laughter. eb) Skip-Bo.) ec) Wife: Nice talks and interaction. ed) Nice mail from colleague who I’d had some trouble with/from a while back, so needn’t’ve worried in the evening. ee) Private mailing a colleague after 2 weeks was nicer than thought as well as just one I felt the need to get done.
f) Environment: Frosty is helping being Outdoors cos dry rather than hindering. Hot water bottle.
g) Body: (ea) Energy.) eb) Feel like an Iron Man managing to (luke-)cold shower with windows slightly open despite frost.
Simplified:
a) Sensible would be to start the day looking at the calendar & chore-ToDos first, then blog, then mails, forums & tabs last.
b) I’m looking more in a room what needs to be taken somewhere else, do that all at the same time, and then distribute it (but careful how much I carry at the same time, cos something falling can steal time.)
Foggies: Sometimes “100%” clear-headed after half an hour of getting up, duller in the evenings.
Click for development/summaries and see profile...
More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023