2024-06-20 Thursday
Summary:
- LDN reduced Jun 20th to 1.5mg: Brilliant sleep, but frontal sinusey headache, all Friday, maybe only temporary. Jun 19th 3mg. May 20th- 3.5mg (Mar 21st- 3mg)
for Energy “30%” , partly usable = 10% 
, energy profile “very slow” , TT imp. , jackknives , walking / cycling 5’ . - Triggers: Doc appts. May 29th: 9 days , Jun 7th ?d , Jun 10th . 0 bites .
- Last focal seizure: Today, Jun 20th (+15d). Jun 5th (+9d).
- Sleep : Altho Screen curfew late , late bed cos of: guinea pig and camera/lens bidding “”. QCS at 10:00 . Airing: 4h .
- Thoughts: -
- Feelings: After the first rush I need to be more restrained about bidding on camera etc.
- Cheer: Grandkid 30’! Beautiful scene: Willow warbler? and blackcap! bathing! in the aqua-sandarium! Robin watching!
Pic(k)s of the Day
= expanding happiness
Discovered some more purple fairy bellblowers at the back of the garden:
Awmless brome-grass? or tall fescue? - again a beautiful grass:
Pity this tree around the corner had to be cut up, but lovely to look at wood and I took a bit for my street plants:
New snails, yesterday’s were all banded, even if we can’t see it, same as this new brown-lipped one, seems most are brown-lipped here:
This tiny one had muck on it, and turned out that it didn’t move a day, so is no longer alive, but still sweet. So often do I think something is muck and it turns out to be a creature, so now I inspect everything, just in case:
How’s my friend the Asian invader doing?:
Swift groups and nearer. Wing span is 40cm. One has been recorded to have been in the air for 10 months without a single break:
LDN: Jun 20th 1.5mg: Brilliant sleep, but frontal sinusey headache, all Friday, maybe only temporary. Jun 19th 3mg. May 20th-Jun 18th 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)
10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. (Slowly up from Oct 1st ~0.07mg).
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly 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. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
[details=“1) MAIN ISSUES: talking 5’ with grandkid/mum, neighbour more but with lots of breaks ➔ 80%/4 , music 20’ a bit better ➔ 80%/3 (no nausea, strain less) (), white lips 70-80% (), TT imp. , moving ➔ 80%/3-5 , balance (), body fog (), jackknives (), SO post exertional malaise (), “post postural ache”, “PPA” (), stiffness (), exhaustibility theoretically “70%” / actually 90% and sleep 7h33 (Airing: 4h . vQvCS: 10:00 , “PPA”: 2 ). Energy profile: since Jun 10th “very slow”, with “10h rest”, 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months…”]
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h33, all very deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).
Sleep 0:10-7:55 3x4’, 0 deep doze. Sum: 7h55-h10-(x5’=)12’ = 7h45-12’ = 7h33.
0:10- q6 + back exercises
4:06 1st! Blackbirds and robins, 0 else.
6:24 4’ 2nd must be LDN. Frontal sinusey headache.
7:35 3rd wonderfully deep
7:55 up, 8:10 4th GABA
[/details]
2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."
(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. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) ,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first , from Jun 8th on .
(Jun 10th) Too long 55’ public health officer appt., immediately: .
(3) DOCS: Trying for higher disability from Apr 25th on. But Jun 20th: Are these flares worth it?! Click for latest (Jun 7th) details.)
DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.
(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
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 . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
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.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): 23:19 focal seizure from the culmination of guinea pig not being able to eat properly, bidding for the camera unsuccessful, and being misunderstood writing to the seller. 9:13 praps it’s the ALA half an hour before the first meal setting my acid off and causing the liquid stools sometimes, maybe if I wait too long before eating? Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Jun 20th 1.5mg. Jun 19th 3mg. May 20th-18th 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1) 21st (1) May 27th (1) Jun 5th (2) Jun 20th (1). Click for latest (May 13th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~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 esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 20th (1).Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: 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 BLOCKs May 7th. Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). Jun 20th (1).Jun 5th (2) May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) 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: May 7th 2024. 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, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN Jun 20th- 1.5mg. Jun 19th 3mg. May 20th-Jun 18th 3.5mg. Mar 21st-May 19th 3mg, (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: Carnitine Apr 14th-, EGCg Apr 13th-. LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. 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:
- Tooth guinea pig is sometimes depressed, distracts, gets hyperactive, probably hunger and mouth pain, but also often squeaks cheerfully when I feed him. Wife comforting and calming me, not to worry about him not able to eat at all, I suggested pain killer and hope that’ll bring it back to normal.
- Wondering together with my wife if disability is really worth it, need to take a break from the idea.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Red wallflower, yellow wallflower, more evening primrose blossoms.
b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with 
= increase: Woodpigeons Blackbirds Robins Sparrows Blackcap Great Woodpecker Swifts 16x , Magpies Jacks , Birds bathing 8x ), Raven(s) 0, and these all minimized 
, (maybe hatching): Great&BlueTits Dunnocks 0, (Chaffinch ) (Chiffchaff nearby ) Collared dove , (Nuthatches 0).
Latest / earliest robin song: 22:40/ <4:05
(Regular cheer, song/calls/seen - all = decrease: Wren)
- Woodpigeon parent sitting next to the nest, not on it any more
- 2 swifts came out of neighbour house’s natural nest. Neighbour in our house told me when the neighbour house was renovated, they had to “throw birds out” – always guessed. Nice to know.
- Magpies heard and saw 1x, BlueTit, blackbirds bathing,
- 12:23 Blackbird subsong with alarms in it in the hazel, was that a young one or adult and which? Then flew past me, but I didn’t realise.
- 17:32 Beautiful scene!: Bathing in the aqua-sandarium were tiny brown-grey bird, praps willow warbler, still not identified, and then our male blackcap, so this is now my biggest birdbath! Robin came up to me curiously and bathed in a normal bird bath, but had a look at them in the big one, hopped on to the twigs there, and again, when they’d left, but decided it’s not his size. I don’t think the little bird didn’t have any kind of ‘cap’ so doubt it was a female or young blackcap.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank voles . Insects: bees, bugs . Snails/slugs .
Yesterday’s 5 snails were all banded, whether we see the bands or not. And more brown-rimmed than white.
e) Human life: (TT n/a. Skip-Bo Wife Art Music listening Nice talks )
Lovely to see grandkid and mum. Managed to partake in her playing with lively mimicry rather than talking, which she much appreciated.
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
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