2024-01-01 Monday
Summary:
- LDN (2.25mg):
: Energy 30% (I assume), walking 60’ no problem . - 3 focal seizures: 14:45 talking to (stressed/sad) wife, 19:05 after 20 seconds of putting some complex music on (see ‘research’ below about musicogenic seizures), 20:15 talking to (") wife. GABA 4.2g, so praps NYE stress? But did forget the 19:00 GABA till 23:00 and didn’t take any “rescue dose” after the seizures.
- 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 .
- Cheer: 60 snowdrop sprouts! Enormous earthworm nest! Bank vole close! Chat with mate!
(V)LDN: Dec 27th- 2.25mg. (Slowly up from Oct 1st ~0.07mg.) It's likely LDN reducing histamine/tannin of walnuts. Mustn't forget it! Click for details on effects and 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.
Additives: white capsules with TiO2 (HPMC with SiO2).
CVD med effects?: Atorvastatin 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.
1) MAIN ISSUES: talking I kept down, but music 5'' ➔ focal seizure, so I don't know if longer 70%/4 ❌ but guess so, white lips 70-100% ❌, no TT available, moving (gardening, walking) ➔ 80%/2 ✅, SO post exertional malaise ✅, "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ and sleep ✅ ("PPA": 2-3 (✅)), energy profile: medium, with "4h rest", 0h very slow, 4h slow, 8h 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): 7h12, up 4x (20'), all deep. ✅, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:50-7:22 8’+3x4’=20’
2:50 gut ache: from russet apple? Neck from sitting too cold and neglecting back exercises-> twist-stretch plus massager
Sum: h10+7h22-(20)’ = 7h32-20’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Trialling reducing tomato sauce in baked beans whilst comparing DAO doses. * 0x DAO for 100g baked beans was risky, but then 3x for 150g came out good ✅. Feared a narky reaction on one of my forums before bed, but managed to keep distracting myself when the thought came up, next morning my worry was for nothing. Kept calm while wife was emotional about her life in general, till she came and deeply apologized of her own accord - so good that I didn't respond. 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%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks took my appetite.
(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 7th uro exam and methylene blue trial.
(9) Aug 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.
(X) Improvements (Sep 12th): Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night .
(X) Intermediate status: These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(10) Sept: 10a) Further painful bladder exam injured (‘screaming’ 3d), 10b) scarred me (4th-), 10c) caused UTI (2x3d). 10d) CoV-type infection (12th 10 days) [edit Dec 27th: was that a hantavirus infection from our bank vole?], 10e) binge work stress (mid-month for 4 weeks), 10f) abdomen pains, 10g) listening to music painful (24th), 10h) Harley needs feeding up cos of 3 types of bad teeth starting Aug/Sept, 10i) wife wrought-up Sept. 10j) 18th: CVD meds problems, so stopped again for the time being. (27th: New GP helpful.).
(11) Oct: (V)LDN helping a “lot”, 11a) 17th: Complex filling - only 1-2 days recovery. 11b) 23rd/24th: CVD meds dreadful, so 26th re-started with BP specks up to 4mg spread, with only slight side effects.
(12) Nov: 12a) 13th atorvastatin even specks difficult, 28th: 1+1+2mg caused insomnia, 29th 1mg OK again.
(13) Dec 13a) 7th: One distracted moment let Stuey fall from sofa, breaking his front teeth off, so 13b) now 2 guinea pigs to feed up. 13c) 8th: energy dip in the mornings, probably atorvastatin 13d) 9th: Shop coupon 13e) Boss mail. 13f) Post postural Ache/Pain at night off and on partly from “too good” sleep. 13g) 13th/14th: Histamine reactions: Runny nose, headache and burnt tongue 14h later (lasting till Fr9:00 and counting) after 2x DAO before 200g baked beans and yoghurt. But 18-20th: DAO helping with walnuts (even a chip without DAO before?!). 13h) 21st: Harley’s lost 7% in one week. 13i) 26th: 3-5 half walnuts seemed OK, even without DAO, but after 100g baked beans a few hours later tongue burning (right side this time, left side a bit, not tip). 13j) 28th car trip to kids and and only 2x20’ with them with lots of breaks alone outside (1h45 altogether) depleted energy, pain of 5-6, better again 29th, except when peopling, even wife. 31st: Reducing tomato sauce in the baked beans to see if that’s the main problem. NYE stress(?): firework noise & peopling 1h + 20’ may have caused the 3 focal seizures on the 1st.
(Jan 2024): a) 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!
3) DOCS: CARDIO (Dec 11th): Rosuvastatin? ONCO: Appt. with onco#2 Jan 8th. (Check lymph nodes, liver and spleen sizes onco#1 wrote.) Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/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?
4) UNDER CONTROL ✅ (attention necessary (✅)) - Jan 1st 3 focal seizures, maybe NYE stress. Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol and ellagic acid. Walnuts good without DAO, still trialling baked beans (tongue vs. sinus headaches). Drinking only 2L from LDN? Supp costs seem down to 350€ from taking less and getting them cheaper.
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: 1x/m - focal seizures Jan 1st (3). Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1), Nov 20th(?) (1,) Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). 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 BLOCK Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Jan 1st: 3x 14:45 talking to (stressed/sad) wife, 19:05 after 20 seconds of putting some complex music on (see ‘research’ below about musicogenic seizures), 20:15 talking to (") wife. GABA I’ve been taking full 4x0.6+6x0.3=4.2g, so praps NYE stress? But did forget the 19:00 GABA till 23:00 and didn’t take any “rescue dose” after the seizures. Dec ?22nd: 2 slight focal seizures. 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. 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 Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol (cos not convinced of available products) and ellagic acid (not convinced of use). 27th: LDN 2.25mg. Dec 24th: ~28 supps + nattokinase (was 40) costs ~350€/m (was 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. Nov: salivating technique(s) for dry mouth:
Supps Dec 24th: 28 supps (was 40) costs 353€/m (was 435€/m) +20€/m cps. Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol (cos not convinced of available products) and ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h, so new. 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. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Musicogenic seizures on wikipedia makes it sound as if the emotional reaction to certain pieces/types of music are the problem. In my case the music that caused it was “too” complex.
“Specifically, music creates an emotional response that is activated by the limbic areas.[1] This emotional effect of the music then triggers the increase of dopamine in the different parts of the brain, eventually leading to hyperexcitation, which is an abnormal excitation of neurons, and generation of seizures in those areas when there is a dysfunction in this system.[5] This notion is supported by many functional imaging studies like fMRI, PET scan, and clinical studies which suggested that patients of the musicogenic seizure often express emotional feelings before the onset of the seizure.[13]”
Quality of life: 90%
Lessons in self-care: Gotta watch the seizures and the woozy brain, short sleep, so definitely pull everything forward an hour by being disciplined with feeding Harley at 8, 12, 16 and 21 if possible.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
aa) Uncovered possibly another moss sort, also a dark sort - that might be the 12th.
ab) Found many more snowdrop sprouts whilst taking most of the rest of leaves off, I’d say that’s around 60 already. (It’s sposed be around 0°C sometimes in 1 or 2 weeks, but if I think necessary I’ll put leaves over the sprouts again for protection).
ba) I could identify Duey and later BobStar, so again I think that is going to stay our woodpigeon pair this summer too.
bb) Caught Blackie in the feeding box, not peeping a few notes in the boxwood as it appeared and I filmed the other day.
bc) Some small birds swished directly past me when I was in the back of the garden, I think Blue+GreatTits and Robin too - it’s fun visiting them there, more in the nature, than on the concrete near the house.
bd) Magpie around.
ca) Enormous earthworm nest (200) under a mortar tub I’d been collecting water in. Quickly put it back over, that will make our garden earth wonderful and the birds can take their pick once the babies have grown up (
one adult at either end, so cute! 
).
cb) Bank vole came right up to me to get at a fat ball I’d left on the grown near the cellar entrance, so I could film and get a yard close, can now see if it really is a bank vole.
cc) 2 reddish red squirrels chasing each other full speed is such a laugh - shows we have more than 2, cos there’s at least one black one.
d) I think there’s >50 leaf groups that earthworms are pulling under at the moment, more towards the back of the garden.
e) Human life: An old friend cycled by just as I was off, so I could have a short chat which only semi-depleted my energy and was very nice.
f) Environment: It was sposed to be rainy all day, so when it wasn’t I was quick to get out.
g) Body: Energy increasing, but without TT hard to estimate.
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