2023-10-21 Saturday - recovery?: same. RR/supp changes?: same. LDN?: jumping up to 0.5mg from 20th on - same.
What … worked / went wrong … today:
TT went well, but I do always notice a slight strain whether doing housework or that.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels . Eat 19:00 
, but 19:20
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Friday night , sleep Saturday night .
Today working mainly on … time management , better self-treatments , RR , energy, esp. via LDN .
(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 - but slightly strained, walking: up from 5’ to 30’ - yep, listening: up from 3’ to 15’ () - same, TT
fine motor skills and available short term energy - yep, stiffness - yep, shorter recovery times - yep, all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache - yep, local: lower back - good, less - yep, hangover () - a bit.
- Muscles: eyes = vision () - maybe better, bladder: pee frequency & urge () - maybe better.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake - yep.
Nothing really since Oct 18th , except 20th: hangover 3h, unless losing weight.
How to continue: Side effects of 0.25mg gone in 2-3 days, so jumped up to 0.5mg on 20th.
RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅) actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 ✅ (didn't think about playing longer cos it was raining in the 4th game), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌ (acoustic guitar music and similar, for 15' ✅, then suddenly wham ❌. 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): 7h57, up 5x (38'), all deep. ✅/❌, everything OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:05-
22:54 7’
23:50 5’
1:15 7’
3:00 15’ fl10’
5:25 4’
-6:40
Sum: 1h55+6h40-(7+5+7+15+4=)38’ = 8h35-38’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Only the music listening problem I think. 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.
3) DOCS: Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. 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. feedback from onco appt. Apr 24th is STILL pending.
4) UNDER CONTROL ✅ (attention necessary (✅)) Block from sweet potatoes at 14:50:
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: Block from 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?
What if the urine retention med manages to keep more liquid in my body, so keep it moist, rather than dry it out? Nah, looking at the research and forums: https://www.askapatient.com/viewrating.asp?drug=21518&name=VESICARE, Vesicare (solifenacin succinate) - Bladder Health UK Forums, and dementia not impossible 2022 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8851948/
Quality of life: 85%
Lessons in self-care: -
Reasons to be cheerful: After “e) human life” and “f) environment” I’ve now added “g) my body”.
a) Plant life: A new white mushroom - always cute.
b) Bird life:
ba) One goldfinch here again today, regularly, attracting the other small birds who seem to be wondering why someone would want to eat evening primrose seeds.
bb) A great tit is trying to get sunflower seeds upside down, but don’t think s/he’s managing, not sure.
bc) 1-2 nuthatches are coming to the bird food, garden and my wife says balcony, hardly seen them from near. Now I’m listening to the birds I see. The nuthatches are excited by the youtube recordings, the goldfinches are too usy with the evening primroses.
bd) The sparrow pair is back, hope for longer.
c) Animal life:
Squirrel got the hazelnuts I put out one by one, did something with them (praps marked for carrying), then brought them into the garden for the winter. I’ll be finding more “whirls” in the grass of my little meadow.
d) Plant, bird & animal life:
Got the guinea pigs some mugwort and tansy, they loved it.
e) Human life:
One last game of table tennis with mate #1 before his hols, with lots of laughter.
f) Environment:
Low sun behind the cherry is lighting up the raindrops.
g) Body: -
Simplified: -
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