2023-11-17 Friday - recovery?: Afternoon over an hour with the kids good, morning difficult, praps from CVD med side effects? Praps too much statin (2mg?). Or from LDN? (Nov 17th 2x0.5mg): Hmm, today I took 2x0.5mg, it was yesterday I spread 1+1, which might have caused problems today.
What … worked / went wrong … today:
Morning I was a bit tizzy, “all too much”, but realized it was probably temporary due to meds, and sure enough afternoon went well.
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 85-90%-ish (), energy today (, relatively), sleep Thursday night , sleep .day night .
Mainly working on time management (), energy with LDN ()/, keeping spirits up .
(V)LDN: Nov 17th 2x0.5. 16th: (1+1)x0.5 Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking 20' ✅, fine motor skills ✅, stiffness ✅ (10%), recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌ or listening ❌. 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, 10th (2+1)x0.5. 16th: (1+1)x0.5 17th 2x0.5.
=1) Energy up from 10% to 22%: for activities - 75’ on playground, “high carrying” 5yo several times, walking: up from 5’ to 30’ , listening: difficult (), TT fine motor skills and available short term energy - but worse this morning than usual, stiffness , shorter recovery times - definitely short after grandchildren, all constantly . But : still yellow/white face, black eye rims and white lips.
2) Pain: overall Ache , local: lower back , less , hangover .
3) Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4) Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
5) Nothing really since Oct 18th , except 20th: hangover 3h.
Additives: capsules with TiO2 (HPMC with SiO2).
CVD med effects?: About an hour or so when too much. Nov 13th started atorvastatin 1mg/d. 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 ✅ except at night now without longer breaks (3). Stiffness ✅. TT 0:2 -> 2:2 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), shaving 20' ➔ 70%/4 ❌, talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 8h03, up 5x (20') but I've noticed with less breaks more "PPA" Ache, click for details:
EXHAUSTIBILITY today: “78%". 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): 8h03, up 5x (20'), all deep. ✅, everything else OK ✅, 80%/3 (✅), ➔ getting up: 80%/3 (✅).
Sleep 22:40-7:03, 5x4=20’ =
Sum: 1h20+7h03-(20)’ = 8h23-20’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Only confused in the morning and overly irritated by an unimportant letter from work. 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. Harley losing tooth, appetite and weight was the main trigger from September on. In Sept. the big work project, and wife’s mood (better in Oct).
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, 24th dreadful, 26th re-started with BP specks, increasing to 4mg, with only slight side effects.
Nov: From LDN stable energy 18->22% and stiffness down to 10%. 15th starting to get slightly above 4mg BP without side effects, starting atorvastatin specks seemed to give a bit.
3) DOCS: Nov 16th: Report from onco doc came, claiming it was me that'd stopped coming, and that my lymph nodes, liver and spleen sizes would need to be checked next, but no cancer is detectable to date, put the eosinophilia (at the time) down to fibromyalgia or (MCAS) intolerances. 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. Aug 7th: Very painful uro bladder exam and bloods was followed on 9th by a vertigo attack - connected? 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 (✅)) - small left wrist pain re-curred whilst playing with grandkid, but massaging helped:
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 13th (1), 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 13th 20:30 slight cos of wind noise. 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 From Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Nov 17th: LDN 1mg 10:00. 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. From Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN 2nd? on 0.25mg, 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, 10th up to 2x0.5 and 1x0.5mg till 17th down to 2x0.5 at 10:00 cos running out. 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
Lessons in self-care:
Starting to identify plants again was first a stress hamster wheel, but got better.
Reasons to be cheerful:
a) Plant/fungus life: Found out the name of my 4th rhododendron at last, pink rather than cerise, comes from the US: rhododendron catawbiense. So ferrugineum (3) is the one that’s a homie here, the others are foreign, so that’s the one I need to care for most to get the insects back.
b) Bird life: Blackbird homie…
c) Animal life: Harley yawning after feeding.
e) Human life: Great fun with the kids & grandkids.
fa) Good that the weather played along.
fb) Sun slanted into the garden made me take several pics.
g) Body: Fun to be able to “show my strength” and energy when playing with the grandkids, they love that.