2023-10-24 Tuesday - recovery?: Nope, cos: CVD med side effects? Dreadful! Too quick too many. LDN?: isn’t quite being neutralized, can still walk quick for a short time.
What … worked / went wrong … today:
CVD meds went wrong, LDN worked a bit all the same.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels 
- it took me almost 3h Wednesday morning (indoors cos of better wifi) to order 4 supps online cos the webshops I tried to use didn’t work and I took notes so I don’t do it next time - recovery time OK, 3rd meal 18:00-19:00 , but 19:00 , 1st meal 8:00-9:00 .
Self-treatments: Horse stance (), balancing .
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .
Today working mainly on … time management , better self-treatments , energy, esp. via LDN (), getting weight back up from 77kg (Oct 22nd) (78kg 25th with bedclothes on) by pulling 1st meal forward again .
(V)LDN - added fine motor skills & available short term energy
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg
VLDN 
for:
- Energy up from 10% to 18%: for activities () - tough, walking: up from 5’ to 30’ - well 5’ brisk at least, listening: up from 3’ to 15’ () - found some stuff, TT
fine motor skills and available short term energy - not sure what I could have managed with this dull head, stiffness - still good, shorter recovery times - not sure, all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache - bad from CVD meds, local: lower back () - worse, less () - lots of small ones, hangover - nope.
- Muscles: eyes = vision () - nope, bladder: pee frequency & urge () - nope.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake - nope but cos of CVD-meds.
Nothing really since Oct 18th , except 20th: hangover 3h. Bad today cos of the CVD meds.
How to continue: Side effects of 0.25mg gone in 2-3 days, so watching how I go with jumping up to 0.5mg on 20th (and CVD meds from 23rd on). Got to start the CVD meds over low dosing.
RR/BP: CVD side effects? Yes! First nausea, headache and dizziness. Then ache and heaviness, altho nimble enough for stairs and short walk. Some local pains, like 21:30 under right knee.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. No TT mates, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ I think, music 15' ➔ 80%/3 (✅). White lips 80% (❌). Exhaustibility "85%" (✅&❌) and sleep (✅) - 7h46, up 4x (69') ➔ getting up: 65%/3 ❌, similar before sleep: showering caused moaning & groaning 50%/3-4 ❌ but did help sleep ✅, click for details:
EXHAUSTIBILITY today: “85%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 4h slow, 3h30 medium, 30' quick
SLEEP (click for details): 7h46, up 4x (69'), all deep, but taking a while after each break to get back to sleep. ✅/❌, everything else OK ✅, 70-85%/2-3 ✅-❌, ➔ getting up: 65%/3 ❌.
Sleep 22:20- after unable to cold shower, moaning & groaning.
23:56 70% 15’ - shower helped increase stint length!
1:32 8’ 75%
2:55 6 40’ ->85%
5:06 6’ dream earnestly worrying about a double booking knowing I could get things like that confused cos I’m sick, but not knowing that I’m too sick to have even one booking.
-7:15
Sum: 1h40+7h15-(15+8+40+6=)69’ = 8h55-1h09 =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Avoided most, but the thought of presenting my garden in a garden newsletter was troubling. Then early Wednesday morning the supp ordering was a big strain while I did it, OK after tho. Click for list, incl. Sept summary added Oct 2nd...."
(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
(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 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimib 10mg. 24th: Too much: Re-start necessary.
3) DOCS: Last update Oct 24th/25th: I've put a complaint in about the lax onco doc after no report exactly 6 months today, they'll be asking him to send me my results, despite me having written them a release of confidentiality as they'd asked. Oct 23rd: Cardio took many bloods like I asked (e.g. liver, thyroid) and convinced me to re-start the CVD-meds. Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.
Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.
4) UNDER CONTROL ✅ (attention necessary (✅)) - few points to press today, like under right knee:
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 (day and) at night at least not hurting/sticky ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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: 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 the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg. 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.
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. 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,
except doing an overly perfect supp order.
Quality of life: 70%, definitely far down from 85%, feeling pretty miserable or having to distract myself a lot.
Lessons in self-care: Distraction was possible.
Reasons to be cheerful:
a) Plant life:
aa) Opened the meadow in 2 further places to put in daffodils and purple rain.
ab) Still got blossoms in the garden of: black nightshade (100s but tiny like veronica on the (fairly big) plants), oxeyes (suneyes) (40), all the zinnia (25), Apple of Peru (20), rose campions (with the lamb’s ear leaves) (30 but getting unseenly), 10 asters, bellflowers (4-5), big petunia (1 old, 1 praps still coming), a few marigolds (2), 3-4 topinambour sunflowers, 1 white mushroom getting bigger.
b) Bird life:
ba) Jackdaws on the evening round is always an enormous pleasure even if it’s only a minute where they’re all together and close over our garden.
bb) Robin visited me close on my dawn visit of the garden. Singing so often during the day now, praps 10x 3-4’ altogether.
bc) Pigeon twins being fed in our cherry today for the first time, but not long.
c) Animal life:
ca) Bank vole loudly eating a hazelnut…
cb) …or was it Redblack Squirrel who’s fetching them to plant them all over the meadow again, found quite a few pretty low down while digging up grass sods. Well no, it takes him 10 seconds to get a nut open I just saw, the bank vole needs minutes.
d) Plant, bird & animal life: -
e) Human life:
Wife helping and encouraging me to keep the CVD meds lower.
f) Environment: For me nice and warm, and rain not bad.
g) Body: At least pretty nimble.
Simplified:
a) Folded over the grass sods and then back, instead of taking it right out like described and like I started, but that spread too much earth on the other grass.
b) 1 supp I keep forgetting 20’ before 3rd meal I can just take the next evening, cos they’re in the try I then still have with me in the garden/cellar.
Foggies: -
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