2023-10-25 Wednesday - recovery?: yep better: CVD med side effects? Better again after stopping. LDN?: jumping up to 0.5mg from 20th on: still OK.
What … worked / went wrong … today:
Much better again without the CVD-meds… But time management could’ve been a lot better, so many hamster wheels.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels (
) - feeding up Harley 3x50’ today threw me for a loop, 3rd meal 18:00-19:00 , but 19:20 (), 1st meal 8:00-9:00 .
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .
Today working mainly on … time management (), better self-treatments , energy, esp. via LDN , getting weight back up from 77kg (Oct 22nd) by pulling 1st meal forward again , getting CVD-meds under control.
(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 - didn’t use it much except for cooking where 25’ was almost too much, walking: up from 5’ to 30’ - 10’ went brilliantly, listening: up from 3’ to 15’ () - 4’ of selected tracks in regular intervals is OK, phoning with kid 27’ was too long, TT
fine motor skills and available short term energy - I guess it would have been, stiffness - good, shorter recovery times - yes, all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache - better again, local: lower back - better again, less - better again, hangover - none.
- Muscles: eyes = vision () - I think so, bladder: pee frequency & urge () - OK today and tonight.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - no, bad Wednesday night after the CVD meds, but that wasn’t the LDN, and Thursday night cos of the 3 local pains, feeling better, but not waking up better or more ‘awake’ at night.
Nothing really since Oct 18th , except 20th: hangover 3h.
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).
RR/BP: CVD side effects?
No meds, no side effects, bit tough Thursday morning, but re-re-starting.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. 1 TT mate available tomorrow again at last, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ - but 27' phone even with distraction and deliberately not always listening was much too much 80%/5 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, click for details:
EXHAUSTIBILITY today: “82%". 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, 2h slow, 5h30 medium, 30' quick
SLEEP (click for details): 7h46, up 4x (48'), all deep ✅. Nostril/s10%, 3 local pains: Right thumb tip hurting from dryness, so cream, OK by morning. tendons of the 3rd and 4th toe on left foot hurting like a nerve injury, so arnica/Traumeel cream, OK by morning. Hunchback to right of spine, so hanging & stretches and one longer break for the hunchback/shoulder pain, best was probably recovery position to the other side, seems I've been sleeping mainly on one side, instead of alternating (❌), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅, but tired as ever.
Sleep 22:30-
23:58 6’ right thumb tip hurting from dryness, so cream. But 3rd toe on left hurting like a nerve injury.
1:15 8’ thumb, toe and now hunchback to right of spine. arnica/Traumeel cream for toe: it’s the tendons of the 3rd and 4th
2:45 30’ thumb, toe, hanging & stretches for the hunchback/shoulder pain, fl25’
5:30 4’ Wife saying my name was a dream. Long stint! >2h
-7:04
Sum: 1h30+7h04-(6+8+30+4=)48’ = 8h34-48’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Too much guinea pig feeding time enticed me to do too much online I feel, altho looking back I was outside a lot, too. 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.
3) DOCS: Last update Oct 24th/25th: Complaint about the lax onco doc. Stopped CVD meds again for a day, 1mg tomorrow. 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 (✅)) - walking 10' to a shop for a meal for my wife instead of cycling seemed good for my back as well as my whole body, so I'll try doing that more often now. 3(-4) local pains tonight, seem under control again, but gotta watch and try to prevent all 3 closely:
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:
‘Research’ today?
Quality of life: 85%
Lessons in self-care:
Gotta watch out for those dratted hamster wheels. The problem is that feeding Harley is needing me to distract myself, and I’m doing that online, using the better wifi inside the flat. But then continuing after he’s finished. I think I want to concentrate more on him, keep his feeding time down, and then get outdoors fast. Cos wifi is OK in a certain point in the cellar.
Reasons to be cheerful:
a) Plant life:
The white button-type mushroom is growing bigger into a white umbrella-type, other brown umbrella-types are coming up the more it’s raining, what interesting beings.
b) Bird life:
ba) A great woodpecker (that’s “coloured woodpecker” more aptly in German) visited me as well as a robin several times, photos on my other post here: Lymph question - #6 by JayCS. Cos I had to keep still to catch him on film I got cold and had to get a hot water bottle afterwards…
bb) Robin unsuccessfully trying to copy great tits was a good laugh.
bc) BobStar I think it is, with her mutilated neck, is still around, seems OK apart from that, came close, but then I had to move quick cos I could hear the postperson bring my supps.
bd) Robin first thing again, an hour before dawn.
c) Animal life:
ca) Black-red squirrel around another time too.
cb) Wondering whether to remove cobwebs / spiderwebs / spiders, I’ve found out not to remove spiders or their fresh webs, but their old useless untidy dusty “cobwebs” (which actually also means spiderwebs, just people use it more for the old dusty ones), see “simplified”.
d) Plant, bird & animal life:
Puddy cat didn’t get Jerry the bank vole… didn’t get the whole chase on film, but part of it. Wondering whether to intervene or not. With birds I would have… I think now I should have, cos as opposed to birds of prey Tom isn’t eating any of it.
e) Human life:
ea) Wife’s got a lot to do today, but seems happy for it.
eb) Kids on holiday seem OK, but I’m worried they’re overstressing with their kids.
f) Environment:
Great weather today, I was in far too long cos of the ordering and cooking.
g) Body:
ga) It was a great feeling to be able to walk completely normally with nothing hurting, no heaviness, no stiffness! Just that made me beam with pleasure.
gb) The scrambled
Simplified:
a) To eat up my cooked food quicker I should eat it in the mornings too. Whoops, forgot today.
b) So easy to remove the dusty cobwebs with a broom. Before I didn’t know whether to remove them, see “animal life” above.
Foggies: Yesterday my eggs decided they wanted to be poached rather than cooked: One egg slipped out of my hand, made me throw over the pot, so the other 2 fell on to the floor. My clever first reaction was to go to the toilet and whilst there I had a good laugh. Back again I just got the shell halves up, most of the egg white hung on to them, so put them in a pot, and it was sooo delicious, much better than cooked eggs, so I’ll be doing that more often. Ehm, poaching I mean, I’ll try without throwing them on the floor… 
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