2023-12-03 Sunday - recovery?: New problems. Statin med side effects? Nope, despite increasing to at least 10mg. LDN? (Nov 19th on: 1x1.5mg): Stable energy, but even better sleep is creating a GABA/serotonin problem…
What … worked / went wrong … today:
Another seizure (GABA), but energy same, so TT 1:5.
Habit encouragement: 3rd meal before 19:00? ❌ , self-treatments ✅.
Time (= stress) management: 3rd meal 18:00-19:00 
.
Self-treatments: Horse stance 
, balancing .
How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night .
Mainly working on time management (), energy (LDN) , keeping spirits up , lipids (statin): Increasing unmantled atorvastatin: 10mg+.
(V)LDN: Nov 19th- 1x1.5mg, slowly up from Oct 1st ~0.07mg. (It's improved mainly energy (25%) heaviness, walking 20', fine motor skills (down today cos of seizures/GABA), stiffness (10%), recovery time, Ache, pains ✅, but not my paleness or listening ability/sense ❌. No more side effects ✅.) Click for details on dosage, effects 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), 17th 2x0.5, 19th 1x1.5.
VLDN 
for:
=1) Energy up from 10% to 25%: for activities , walking: up from 5’ to 50’ , listening: difficult (), 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.
2) Pain: overall Ache - except at night cos of shorter sleep breaks, 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: white capsules with TiO2 (HPMC with SiO2).
CVD med effects? (BP pretty much solved with 5-4mg by Nov 24th/25th): ATORVASTATIN: Nov 28th: 1+1+2mg of the innards of a pill caused insomnia from about 4 on, so stopped again, 29th OK again, 30th 1x3mg in the morning OK too, 1st 1x4-5mg (mornings), 2nd+3rd 10mg or more. (Nov 13th-2rd atorvastatin for lipids 1mg/d off and on, then 27th speck(s) of innards) CANDESARTAN: Need to spread pulverized specks over the day, Oct 31st 1mg to Nov 6th 4 mg, otherwise it took all LDN energy for hours. RR shows that 4mg seems more than enough, so down to 3mg.
Candesartan for blood pressure Oct 24th dreadful. 25th not taken. Re-start with 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 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. Reached the 4mg/d since Nov 6th, with no more side effects, then 15th upping slowly to 5mg with no side effects around 20th, but checking RR 24th/25th it surprisingly seems 4mg is enough. Nov 13th started atorvastatin for lipids 1mg/d, but every time I increase and even with that I get severe fatigue/Ache effects from. so 24th: stopping 3 days and then trying the middle of the middle without the worst excipients. 27th good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, 29th earlier and reduced, 30th 1x3mg in the morning OK too, 1st 1x4-5mg in the morning, 2nd+3rd 10mg+ still no problem.
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 1:5 (moving 20%, talking 10%, counting 10%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 25' ➔ 80%/3 (❌), music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "75%" ✅ and sleep 7h57, up 2x (8'), all very deep. ✅ ("PPA" now back to 2 ✅), click for details:
EXHAUSTIBILITY today: “75%". 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 medium, with "6h rest", 0h very slow, 1h slow, 8h medium, 1h quick
SLEEP (click for details): 7h57, up 2x (8'), all very deep. ✅, everything else OK ✅, 80%/2, ➔ getting up: 80%/2 ✅.
Sleep 23:55-8:00 2x4’ Sum: h05+8h00-(8)’ = 8h05-8’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: OK I think, just the seizures. 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): 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: BLADDER EXAM, COV-TYPE, WORK, ABDOMEN, MUSIC PAINFUL, HARLEY, WIFE: 4th bladder exam 3 days of ‘screaming’ while peeing, recurred around 18th, UTI and recurred 2x3d, 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).
(11) Oct: BETTER FROM LDN, WORSE FROM CVD MEDS: 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%. Nov 15th starting to get slightly above 4mg BP without side effects, starting Nov 13th atorvastatin specks dulled, proprioception, fatigue, so stopped again. Nov 28th: taking it too much too late (1+1+2mg) caused insomnia, 29th 1mg OK again. Dec 2nd: music and listening is almost as overstimulating as ever since Sep 24th, sometimes possible for a bit, but finding it strange and too much.
3) DOCS: ONCO: Appt. with onco#2 Jan 8th, lymph nodes, liver and spleen sizes checked next says onco#1. Nov 8th: URO: IPP/Peyronie - trying self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - 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.
4) UNDER CONTROL ✅ (attention necessary (✅)) - another focal seizure 3rd means I'm now definitely increasing GABA in the daytime. DAO worked for 200mg baked beans Nov 29th, should order them 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 better with salivating technique(s) ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Dec 2nd (1) and 3rd (1), Nov 20th(?) (1,) 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: Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night, and 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA now my main suspect… Nov 20th (1) I think it was, after food fell off my spoon into a bowl… 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 2022. 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 19th: LDN 1.5mg mornings. Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. 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. Nov: salivating technique(s) for dry mouth:
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 Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg. 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
Lenz’ talk is only about a case report of treating someone with ADHD/autism and fibro, as he concludes it might sometimes underlie fibro …, not very conclusive and not exactly a central topic…
But afterwards an interesting point by him was that it’s important and helpful to get the sense of feeling overwhelmed down, however much we can get the pain under control or not.
2nd talk is Myofascial Release with Jill Economakos. This is very centred on people with fibro (incl. neuropathy) and is full of practical demonstrations, something we don’t easily get anywhere else. Nothing really new to me, but that’s after many expert manual therapists and self-trials with youtube.
The 3rd is about “navigating”, someone who shares how she uses resources like images to feel good.
The 4th about bad vs. good chiropractic, they concentrate on the “upper cervical technique” as one example of “100” chiropractic techniques that may be relevant. (But in the presentation also explains the 5-4-3-2-1-grounding anchor technique, differently to the ways I’ve known, using all 5 senses.)
Marco Mizrahi talks a lot about various health systems all over the world, but then goes on to practical tips, starting here: Chairs everywhere, e.g. 2 in the kitchen, 1 chair in the shower, a kind of sponge ready-made with soap in it(?!), but 2 small kitchen towels in the shower soaked in soap too, cos more environmentally friendly (the deepen on that), prefers taking all pills at the same time, so he remembers.
Olga Pinkston gives an overview about fibromyalgia.
Chloe Jones on recent immune pilot study findings for fibromyalgia (U of Alabama, led by Jarred Younger, that’s the same one that tried to establish LDN with pilot studies): This is once again encouraging to see a researcher really going deep trying to find what changes in the blood when the immune system is realistically provoked, in the first study type they found fractalkine and leptin changes a lot, whilst cytokines and chemokines etc. were a bit more complicated. In the 2nd part they looked at inflammation in the brain. Excellent description of microglial activation. PET brain imaging showed brain inflammation in 2 studies
“Long vax” rather than post vac - that’s a new understandable expression for it, considering it’s often subsumed under “Long CoV” by the reporter, the study itself calls it PVS. Neuropathy and feeling “overwhelmed” aren’t my problems, but this fits to me: “The median number of symptoms attributed to PVS was 22”, with mainly exercises intolerance and fatigue, as well as LDN used by 20%. 241 adults is a fair number, but not peer reviewed. Interesting as ever is 80% identifying as female. And shockingly sad to me here in Germany is “21 (9%) feared running out of food before they could afford to buy more”.
Quality of life: 90%
Lessons in self-care:
a) Good I’m managing to listen to the Fibromyalgia Community Conference without too much nausea.
b) When I said I think of an MRI like being on a rave, someone said, yeah but then there’s the need to keep still… Whaa, so true, about rave but being still! But thinking about it, I think that’s just another mind game. I can’t dance non-stop for an hour like 10 years ago anyway, at most 5’ light dancing movement. So it’s more like a fond memory, and imagining all the movement going on in the room. Also that reminded me that I usually cycle 20’ to the MRI, partly uphill, so have moved too much before and really need a rest, so feel like sleeping rather than moving, so it’s more a rave in the trance area… - and actually I do try to and do get in a trancey state (NSDR helps that too). That also explains why last time I got claustrophobic towards the end: I was in hospital already, didn’t cycle there. So I’ll watch for some kind of activity before it next time.
Reasons to be cheerful:
e) Human life:
a) Wrote to a colleague what needs to be done now for a certain project, so I’m in the clear.
b) My table tennis mate was saying “but it’s snowed”, and I retorted “but you prepared everything yesterday”, he laughed: “cleverly parleyed”.
g) Body: Interesting and good to feel that my energy is there despite my fine motor skills being ditched by low GABA/serotonin. Good also to now be able to realize that quickly and take countermeasures.
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