2024-06-29 Saturday
Summary:
- LDN Jun 20th- 1.5mg
for Energy ’30%’ , partly usable = 13% (
), energy profile ‚very slow’ to ‚slow‘ , TT 1:1 (), jackknives (), walking / cycling 15’ . - Triggers: Doc appts. May 29th: 9 days , Jun 7th ?d , Jun 10th , Jun 26th - went well , but all too much, not recovered. 1 of 5 bites playing up ().
- Last focal seizure: Jun 20th (+15d).
- Sleep - late and thunderstorm: Screen curfew late , late bed cos of: camera, blog, rain ‚‘. QCS at 10:00 (skipped it yesterday, it turns out). Airing: 7h .
- Air: Trying for fresh air all day out and in too, by keeping down times without.
- Thoughts: Central sensitisation may actually play a part in my fibro, altho secondary: and I may have managed to decrease mine, decreasing each local pain and keeping them down manages to prevent old pains coming up.
- Feelings: -
- Cheer: Appreciating the many little things… 6! young blackbirds all at once! Water is a matter of life and death for my wildlife. I can now radically accept any death better than last year…:-/ Jay.
Pic(k)s of the Day
= expanding happiness
New: oregano blossoms increasing:
Devil’s paintbrush blossoms as long as they last:
Nice suneyes/oxeyes:
Great swift videos again, here some impressions as 2 collages:
Marmalade fly is nothing new, here on pelargonia blossoms tho (= wrongly “geranium”), but dissecting a video I found it “clapping hands”, very likely spreading pollen to where it’s sposed to be…:
…here it looks like a torpedo…:
… and here a good view of the wing pattern. I thought I’d caught the wing movement in flight, but checking that it was just a short stop before landing completely, maybe flight will be better possible with the speed of the proper camera:
LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)
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: (Slowly up from Oct 1st ~0.07mg). 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-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
Air
Fresh air not: 10:13-10:45, 14:52-16:00 feeding time…When it’s hot I need to do any housework early or late where we air anyway. 19:48 in for eating and washing hair. But after 5’ balcony. 20:47 in after trying to finish blog and ordering/buying camera. Then cooking in kitchen with balcony door open, and feeding guinea pigs in my room with window open. Feels much better, just gotta watch out that we don’t catch a cold, the piggies 'n me.
1) MAIN ISSUES: talking 10' ➔ 80%/4 = 14:32 met someone in shop, spoke 3’, but kept energy completely down, someone who used to drain me, but also now grown wiser, shuffled a lot, at check-out same nice guy, so didn’t have to talk, neighbour 1’ and someone came past and called me, but I didn’t follow up much, leaving such things. (❌), music, depending on how energetic 5-15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 12:40 1:1 playing pretty precisely, maybe cos seizure earlier and sleeping better, managed to keep seizure-ishness down whilst playing. (moving 15%, talking 15%, counting 20%) (✅), moving 14:05 Cycling to shop 3’ was fine, but being in difficult ➔ 80%/4 (❌), balance (✅-❌), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 6h30 ❌ (Airing: 7h? ✅. QCS: 10:00? ✅ (but not yesterday, it turns out), 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h 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): 6h30, not all deep ❌, QCS at ?10:00 QCS = very quick very cold shower (22 issues under control).
Sleep 0:35-8:07 x5’, 0 deep doze. Sum: 8h07-h35-(50+5+4+3’=)62’ = 7h32-62’ = 6h30.
0:35- sleep, late cos of camera blog rain.
1:45-2:35 q7, thunder sounding like a plane, tape at 2h28 missed claps
5:16 2nd GABA 1st brown, 2h36 audio of dawn chorus after rain, nice blackbird song
6:37 3rd/2nd 4’, wren & everyone singing, blackbirds no more.
7:35 3’
8:07 up, maybe cos of airing with light/sound
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, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)
DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
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 22nd: Palpitations down, HR back to 65. 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 (✅)): 2 focal seizures: 10:55 slight, could talk, but right hand shaking hard, after inkling Friday evening too, from too little GABA Thursday? 17:57 (live, 30’’) 2nd seizure, cos I first fell for some supposed special offers the camera supplier I’d chosen, had difficulty saying the words right and left, mixing them up both ways about 10x, i.e. exchanging them whole (right for left) and half (light and reft), which is interesting as it shows how my mind with . Right finger moving. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...
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 focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.
Last esophagus BLOCKS: Jun 25th & 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 if slightest pressure, 0224-06-22: better acid / gut.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 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). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
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: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 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. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Central sensitisation may actually play a part in my fibro, altho secondary: and I may have managed to decrease mine, decreasing each local pain and keeping them down manages to prevent old pains coming up. So I should differentiate more when answering posts about it.
Lessons in self-care:
- Attempt fresh air all day, keep down times without.
- 10:15 didn’t cold shower Friday, about time.
- 14:35 Neighbour asked if I’m OK, I said mostly not, but the rest I make myself nice.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Blackbirds, with the 4 juveniles (6 today, so I’m thinking it’s 2x3!), subsong, only short bursts of full song Robins only short bursts, starting 3:30 Sparrows Blackcap Swifts 30x , Magpies Jacks , bathing 20x/d ), Raven/Crow , Great Tits (nesting box) & BlueTits , Collared dove .
Latest / earliest robin song: …22:30/ <3:40…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff occasionally, and nearby , Wren song, family less , Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June, but back today, song thrushes 0)
- 8:43 Jay and magpies. Robin near. Still occasional bursts of blackbirds song.
- 9:57 Brilliant bird scene: Five young blackbirds in my view, 3 on shed, 1 chasing another on the balcony railings, 1 more round the corner.
- Different crow/raven call… raven? Magpies
- mainly woodpigeons in the feeding bowls, and squirrel.
- 11:28 woodpecker’s back
- 12:32 Managed to bury dead young blackbird I found on the pavement near our house with only compassion, no distress (dehydration plus window?). 14:32 Jay, magpie, head…? Really dead.
- 13:07 Jay…
- 14:37 interrupted blackbird bathing, but came back. Water is a matter of life and death.
- 16:16 jack on chimney next door, rare that they come down from the roofes.
- 17:03 chiffchaff, 2 male blackbirds bathing at the same time, no squabbling.
- 19:09 wren
- 19:15 GreatTits plus young blackbird bathing in aqua-sandarium.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats 0. Bank vole(s) (). Insects: bees, flies, spiders, butterflies & bugs . Snails yes, but slugs less, cos of heat .
- 13:08 orange butterfly, too fast for me.
- 19:09 squirrel at water bowl!
- 19:09 a wasp, and a 2nd on beech leaves, seemed a pair, flew around each other, the first I managed to get a pic of.
e) Human life: (TT laughter Skip-Bo Wife Art: my paintings Music listening () Nice talks ())
f) Environment: (outdoors/fresh air .) Increasing by opening windows more when I have to be indoors.
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body . Brain .)
Simplified:
- Sleeping 8h makes quite a bit of difference
- Just going thru normal routine alone (wife away) helps find my own schedule better (but then why did it get so late today…
* ). - Laptop whilst feeding only after I’ve eaten myself, and with open window.
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