2023-12-14 Thursday
Summary:
- Feeling 85-90%-ish (
) till 20:00, then 60%, Ache 5-6, better at 21:30 (3) but only cos of not moving, otherwise 5 again. - Histamine food reaction to baked beans despite DAO continued with delayed burnt tongue.
- TT 6x (4:2) . Energy 25% , cycling and plucking guinea pig herbs & grass 2x15’ , evening 15%
. - Atorvastatin 5mg: OK first , but the drop at 20:00 was that, I’m pretty sure. More trials.
- BP at night: 23:07 123/76-64, 1:00 97/77-67, 3:42 79/66-67, 5:54 92/64-61 - remembering it’d be even lower if I weren’t up and moving.
- Cheering: Hedgehog!
(V)LDN: Dec 11th- 2mg (14th 0.5mg at 14:35, forgot to add that to the 1.5mg before). Nov 19th-Dec 10th 1x1.5mg, slowly up from Oct 1st ~0.07mg. Click for details on effects and dosage...
(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 , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect wass 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: LDN 1x2mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
CVD med effects?: ATORVASTATIN (10mg+ without coating Dec 2nd-9th, 0mg 10th-13th, 5mg 14th), unwell in morning or not? ✅ - energy dip in morning? (✅) - but in evening ❌, cos took it later. CANDESARTAN: Down to 2mg from Dec 10th, cos 3mg decreases BP more than enough (Dec 10th 73!) (with the 12 BP-supps), unwell at night or not? ✅. Click for details...
BLOOD PRESSURE: Even candesartan alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, more in the daytime cos of the night dip, 4mg/d since Nov 6th, then 5, but checking RR 24th/25th 4mg is more than enough! LIPIDS: Nov 13th atorvastatin 1mg/d, every increase 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-11th 0mg, candesartan 10th-: 2mg.
1) MAIN ISSUES: Talking 5' ➔ 70%/3 ❌, music 5' ➔ 70%/4 ❌, white lips 80% ❌, TT 4:2 (moving 40%, talking 30%, counting 10%) ➔ 80%/3 (✅), moving ➔ 80%/3 (✅), SO post exertional malaise (✅), "post postural ache", "PPA" (✅), stiffness ✅, exhaustibility "75%" (evening 85%) ✅ and sleep 8h25 ✅ ("PPA" at night now back to 2 ✅), energy profile: medium, with "4h rest", 0h very slow, 4h slow, 7h medium, 1h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+. 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): 8h25, up 3x (18'), all deep ✅, slight headache, praps, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:05-7:48 3x6’ Sum: h55+7h48-(18)’ = 8h43-18’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: None. Delayed histamine reaction from yesterday evening's 200g baked beans left side of tongue hurting 14:35, increasing, so decided against repeating baked beans, altho I took the 2x DAO - which didn't improve anything (as expected). Also stronger B3-flush after than normal, possibly also histamine. 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: 1) Further painful bladder exam injured (‘screaming’ 3d), 2) scarred me (4th-), 3) caused UTI (2x3d). 4) CoV-type infection (12th 10d), 5) binge work stress (mid-month for 4 weeks), 6) abdomen pains, 7) listening to music painful (24th), 8) Harley needs feeding up cos of 3 types of bad teeth starting Aug/Sept, 9) wife wrought-up Sept. 10) 18th: CVD meds problems, so stopped again for the time being. (27th: New GP helpful.).
(11) Oct: (V)LDN helping a “lot”, 1) 17th: Complex filling - only 1-2 days recovery. 2) 23rd/24th: CVD meds dreadful, so 26th re-started with BP specks up to 4mg spread, with only slight side effects.
(12) Nov: 1) 13th atorvastatin even specks difficult, 28th: 1+1+2mg caused insomnia, 29th 1mg OK again.
(13) Dec 1) 7th: One distracted moment let Stuey fall from sofa, breaking his front teeth off, so 2) now 2 guinea pigs to feed up. 3) 8th: energy dip in the mornings, probably atorvastatin 4) 9th: Shop coupon 5) Boss mail. 6) Post postural Ache/Pain at night off and on partly from “too good” sleep. 7) 13/14th: Histamine reactions Runny nose, headache and burnt tongue 14h later lasting…? after 2x DAO before 200g baked beans and yoghurt.
3) DOCS: CARDIO: 11th: "BP 73/58 is too low." "Praps try rosuvastatin instead of atorvastatin." ONCO: Appt. with onco#2 Jan 8th, lymph nodes, liver and spleen sizes checked next says onco#1 (took report to GP#2 on Dec 8th). 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 (✅)) - Dec 13th: 2xDAO after 200g baked beans hardly improved 3 histamine reactions, so need 3x? GABA less at night, so day more (but need to watch overdosing):
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 better with salivating technique(s) ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures 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 BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of 2022. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW From Dec 11th: LDN 2mg mornings. Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Aug 6th: 40 supps, 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 Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. From Nov 4th on: nattokinase 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. 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, 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
Quality of life: 90%
Lessons in self-care:
So somehow-hurting in the evening (pretty sure the 5mg atorvastatin) that I needed to do something soothing, first tried some music, but hurt more, so plant identifying.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Wild geese flying in the evening! Robin, Duey, Chirpy GreatTits in garden and at TT, nuthatches at TT too.
c) Hedgehog in front of our garden gate, hope he finds a home in my giant insect/animal hotel to make up for my wife slightly kicking against him in the dark, poor thing (so rolled up)!
e) Human life: Lovely advent card from wife again!
f) Environment: So good outside!
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