2023-11-09 Thursday - recovery?: not really. CVD med side effects?: Bad. LDN? (Nov 1st on 2x0.5mg): Almost neutralized from the BP med.
What … worked / went wrong … today:
Walk and table tennis OK, but BP med too much.
Habit encouragement: time management (✅), self-treatments ✅.
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night .
Mainly working on time management (), energy with LDN (), keeping spirits up .
(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:
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.
VLDN 
for:
- Energy up from 10% to 18%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT
fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache - OK-ish, local: lower back - OK, less - nope, cos of BP med, hangover - no.
- Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - .
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
Nothing really since Oct 18th , except 20th: hangover 3h.
CVD med effects?: 9th: weakening from the afternoon on, slight headache starting up in the evening, can't think: Wedn 3mg, Thurs 5mg NOT a good idea at all. Multiple local pains from that, due to taking too much of my blood pressure med in too short a time. (The mechanism seems to be that that increases histamine which decreases serotonin.) It was around 5 sort of "new" local pains, but my typical weak spots - or maybe all spots get weak? Hand, knees, ribs on either side... Each of them I pressure-massaged down as soon as they came up, so they don't / couldn't build up. In this case I could pinpoint it was the med/histamine, cos I was feeling increasingly dulled in body and mind and got a slight sinus headache / migraine, all one kind of my various histamine reactions. So in this case like generally I knew that histamine vs. serotonin was the systemic cause, still worked on each pain singly but may now increase GABA for more serotonin and less histamine a bit this evening until it wears off. GABA does generally help me in many areas, so systemically, but far from cure. Systemically I'm now wondering why the blood pressure med via increasing histamine seems to temporarily completely neutralize the positive effect of the L D N that I've been having since starting it, which is 'homeopathically' inciting endorphine production. Something to do with cortisol, histamine, generally neurotransmitters / hormones I spose... 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.
24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 2:1:1 cos wet & ball bust, fun (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅) - walk to vet 2x10', talking 15' ➔ 80%/3 ❌, music 10' ➔ 80%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h23, up 5x (37'), 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", 0h very slow, 3h slow, 6h medium, 1h quick
SLEEP (click for details): 8h23, up 5x (37'), all deep ✅, but at 23:40 had to go downstairs, I was hardly able to walk / straight (vertigo type), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:30- 23:40 9’ 0:42 8’ " 1:35 5’ 2:42 5’ 4:35 12’
-7:30 Sum: 1h30+7h30-(8+7+5+5+12=)37’ = 9h-37’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Just the med, rest I think OK. 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 - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.
3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. 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 (✅)) - got the new 5 local pains from the BP med down again:
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 - focal seizures Nov 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: Nov 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 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, Nov 1st on 2x0.5mg, 10:00 and 15:00. 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
‘Candy’ (candesartan) increased frequency via histamine.
IPP/Peyronie’s disease (PD) can be triggered by injury, but can it have been that quick after the cystoscopy (which I definitely was injured by)? I’ve found some interesting pages I need to delve into.
Quality of life: 85%
Lessons in self-care:
a) Good to do a little paperwork in the evening, altho talking to my wife on a 2x10’ walk to the vet’s I decided I’d got enough to manage with my new uro diagnosis yesterday, and researching a bit today. But decided just to do a baby step on my insurance stuff, and cleared up a minor problem,
b) also seeing that as a next step I need to clean up my laptop as it’s getting really full, esp. cos of the garden videos.
Reasons to be cheerful:
b) Bird life:
ba) Short but sweet chirpy episode from the great&blueTits and
bb) a chattery, elated one by the jackdaws enjoying the wind.
c) Animal life: Found a red and an orange ladybird sitting under a leaf on the red-yellow chrysanthemum, managed to get a close-up without disturbing them.
d) Plant, bird & animal life: It’s fun seeing the guinea pigs enjoy the leaves (birch, hazel and cherry) even when they’ve turned yellow and brittle - plenty for them to chew on and rip up, Harley definitely needs something more substantial than chewing on the kitchen roll we put under and around him.
e) Human life:
ea) Wife’s found a bit of peace about the decision when to let Harley go by talking to a good friend, now she’s regretting she already thought of it altho he’s still quite happy and not suffering much.
eb) After having done quite a bit early Friday morning (Harley, tidying up), I felt like just lying in my cellar entrance, watching the clouds draw by, seeking indirect or a peek of sun if both cloud layers allow, then a plane arrowed in exactly the same direction, but faster, whilst its exhaust trails are staying behind everything and seeming to move at the same time (like when you’re not sure if it’s your train moving or the one outside the window), so there’s four things of different kinds moving at different speeds. The lower layer of clouds is greyer, the upper whiter.
ec) Now got an almost direct view of the sun at last, much lower than I’d imagined from the tinted clouds around. So hungry for it that I’m taking blinding myself and can hardly see what I’m typing. Altho I’m shielded by clouds, the cherry and the boxwood.
ed) TT 2:1:1 cos wet & ball bust, fun.
f) Environment:
fa) Tho I was dulled in the evening, I could win at cards (like at table tennis I’m often better when I’m dulled, cos I’m less distracted)…
fb) and the major idea occurred to me to use all the rain water I’ve collected and can’t use anymore for the toilet on the staircase that I use when in the garden, cos closer. That’d be “environment” in the ecological sense.
fc) The sun and taking my time to just be outdoors without wondering what I might be able to do is elating. Forgetting everything else,
g) Body: Good when the BP med effect wears off!
Simplified:
a) Rain water for toilet is a sort of simplification, or at least making better use of something, even tho carrying the water in buckets up the 12 steps may be “exercise”.
b) Lying in front of my cellar entrance without distraction I felt the wind sweeping from right to left altho I’m much more sheltered than I would be on the balcony. So I decided to use the square flat plastic thingy (I knew the name in German) I’d been using above me if it rains very hard to the right of me and am now sheltered even more. The problem being outdoors in the cold is more the wind than the cold itself.
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