2024-03-21 Thursday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg
: Energy 30% , partly usable = 15% (
), energy profile “very slow to slow”, TT 1:2 , jackknives , walking / cycling 10’ (). (Forgot the 3mg on 22nd till I wrote this at 11:00, altho I should have taken it with/before meal, as well as: - Creatine monohydrate Mar 19th- 2g (22nd: 11:00)
- Bit more energy Friday morning: lack of sleep or late LDN and creatine?
- BP still fine, even after heavy exercising!
- Self-care: find ways to talk to neighbour less, to get tax paperwork done, more garden, good to exchange annoying forum for new “penpal”.
- Triggers: (Tooth treatment )
- Cheer: Birds: Unknown calls of birds in late evening, single Jackdaw at 20:00. Robin singing till 21:00 and one singing at 3:00, 3 at 4:30. Plants: Amelanchier blossoming, purple-flowered magnolia more and more, 2nd daisy, Alpine barrenwort. 2 squirrels there, & birds bathing at the same time.
(V)LDN: Mar 21st- 3mg, 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. 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 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- 2mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5' ➔ 80%/4 ❌, music 5' ➔ 80%/3-4 (nausea? strain!) ❌, white lips 70-100% ❌, TT 1:0 ➔ 1:2 (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3 (❌) but better in the morning - whether from lack of deep sleep or from taking LDN & creatine later?, jackknives ✅ SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep 7h43, 2.5h deep doze (✅) ("PPA": 2 ✅). Energy profile: very slow, with "4h rest", 5h very slow, 7h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. 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): 7h43, 2.5h deep doze/self-NSDR (✅), everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:00-7:03 4x5’, 2.5h deep doze! Sum: h+h-(x5’=)’ = 8h03-20’ = 7h43, 2.5h deep doze/self-NSDR, but didn’t hear my wife close my door, so I spose more sleep than I thought, as ever. Problem was writing down night details on my phone too diligently, about having taken rhodiola and passionflower at the same time at 4:30 - which is important, but a note would have been enough.
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. 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.
(3) DOCS: Mar 19th online dermatologist: he thought wart - I don't, yet, treating with tea tree oil - on a probably genetic enlargement under toenail. Click for latest (Feb 2nd) details.)
DERM (Mar 19th) wart?
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
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: Mar 21st BP still fine even after heavy exercising (Horse stance 70'' ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1'). Mar 17th BP getting too low, so stopped candesartan. Click for latest (Feb 4th) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’.
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 (✅)): Creatine Mar 19th- 2g. Seizures Mar 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Mar 21st) & next changes:
Latest: 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 esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Mar 20th & 2nd Feb 19th & 14th & 3rd 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. Mar 20th (1). Mar 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: 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 Mar 19th- creatine 2g in the morning. (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: Mar 19th- creatine 2g in the morning. 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:
a) It’s good to let go of a certain forum that’s caused me loads of trouble over the years. Hope I’ll see the lovely people there again.
b) Good to let go of work, stopping in July.
c) I need to find a way to tell my neighbour that she hurts me when she talks more than 4’. Maybe it’s OK to just scarper when I hear her coming tho, too.
d) Still can’t manage to do tax, but clearing everything else out of the way bit by bit. I’d still like to do more garden stuff tho, all the time, archiving photos again, identifying, sharing etc.
e) Exchanging the forum that bugs me too often there for my new “penpal” I spose.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants:
aa) Amelanchier blossoming,
ab) purple-flowered magnolia more and more,
ac) 2nd daisy,
ad) seen light yellow Alpine barrenwort flower for the first time, sweet.
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches , Magpies , Dunnocks Great&BlueTits Jacks ) latest / earliest robin song I heard: 21:00 / 3:00.
Regular cheer, song/calls/seen: Greenfinch, Chaffinch.
ba) Song/Calls: unknown one again in the late evening, maybe 50m high, flying to and fro, but recorded .
bb) Seen in garden: The Raven pair I think it was on the garden house roof next door, seemed too big for carrion crows.
bc) Jackdaw seeking his folks at 20:00.
bd) 2 BlueTits bathing at the same time.
c) Animals: (guinea pig antics . Redbrown squirrel ) Snails Bank vole A new blackish red squirrel is collecting and hiding hazelnuts etc. today, whilst at the back of the garden it’s either the regular redbrown one or the lightred one at the same time.
e) Human life: (TT laughter Wife )
f) Environment: (Outdoors .) Leaving the laptop in the cellar is helping get into the garden quick.
g) Body: (Energy ().)
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