2023-12-23 Saturday
Summary:
- Hearing loss with tinnitus and amplified hearing = hyperacusis at the same time for 15h.
- LDN (generally 2mg, but forgot today 0mg, late 0.5mg - so I don’t disturb sleep): (
): Energy 30-20% (), walking/cycling 50’ - not that easy (). Showed I need it all the time, it’s not a drug level that builds up. - RR very variable, SBP 141-117 inside of 2 minutes at 14:00.
- Cheer: Exciting dreams, new woodpigeon, good outdoors, fun to see effects of stopping ginkgo and LDN.
(V)LDN: Dec 11th- 2mg (23rd: 0mg, evening 0.5mg). A few periods, the energy felt like 30%, but more often 20%, so let's say an average of 23 - the core energy higher, but heaviness and a sort of weakness too. Which first posed the question if the new energy is actually not just from LDN, but a synergy with my supps, specifically now ginkgo, possibly also needing the other 4. Then I realized at 20:00 I hadn't taken the LDN at all, I'd prepared the 0.5 capsules, but hadn't put either those or the 1.5 ones in the pill boxes. So I at least took a 0.5mg one, to get back on track, without causing too much insomnia. So the synergy idea is unnecessary as it is. And it's shown what happens when I stop taking it: the energy is gone. And what happens when I re-start: slight GI side effects. (Slowly up from Oct 1st ~0.07mg.) Click for details on effects and dosage...
(It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense 
. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
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, Dec 11th: LDN 1x2mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
CVD med effects?: ATORVASTATIN (16th- 0mg), ✅ - no energy dip - further trials sometime. BP ✅, SBP 131 - 141 - 117. Click for details...
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
1) MAIN ISSUES: Talking 10' ➔ 80%/3 (✅), music 10' ➔ 80%/3 (❌) (managed towards the end of the hearing loss/hurting, kind of 'training'), white lips 80% ❌, TT "fell into the water" as Germans say, moving/walking/cycling ➔ 80%/3 (✅), SO post exertional malaise (✅) - a bit achier today cos of the tinnitus, "post postural ache", "PPA" (✅) - same, stiffness ✅ - not bad, exhaustibility "77%" ✅ and sleep 7h51 ✅ ("PPA": 2-3 (✅)), energy profile: medium, with "4h rest", 0h very slow, 6h slow, 6h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h51, up 5x (54'), all deep. ✅, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:30-8:15 35 4 6 5 4
Sum: h30+8h15-(35+4+6+5+4=)54’ = 8h45-54’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅?: The tinnitus was an interesting experience, didn't bother me much, but "shook" me in a Christmas overfilled shop. Click for list...."
(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 took my appetite.
(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 7th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(X) Improvements (Sep 12th): Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night .
(X) Intermediate status: These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(10) Sept: 1) Further painful bladder exam injured (‘screaming’ 3d), 2) scarred me (4th-), 3) caused UTI (2x3d). 4) CoV-type infection (12th 10d), 5) binge work stress (mid-month for 4 weeks), 6) abdomen pains, 7) listening to music painful (24th), 8) Harley needs feeding up cos of 3 types of bad teeth starting Aug/Sept, 9) wife wrought-up Sept. 10) 18th: CVD meds problems, so stopped again for the time being. (27th: New GP helpful.).
(11) Oct: (V)LDN helping a “lot”, 1) 17th: Complex filling - only 1-2 days recovery. 2) 23rd/24th: CVD meds dreadful, so 26th re-started with BP specks up to 4mg spread, with only slight side effects.
(12) Nov: 1) 13th atorvastatin even specks difficult, 28th: 1+1+2mg caused insomnia, 29th 1mg OK again.
(13) Dec 1) 7th: One distracted moment let Stuey fall from sofa, breaking his front teeth off, so 2) now 2 guinea pigs to feed up. 3) 8th: energy dip in the mornings, probably atorvastatin 4) 9th: Shop coupon 5) Boss mail. 6) Post postural Ache/Pain at night off and on partly from “too good” sleep. 7) 13th/14th: Histamine reactions: Runny nose, headache and burnt tongue 14h later (lasting till Fr9:00 and counting) after 2x DAO before 200g baked beans and yoghurt. But 18-20th: DAO helping with walnuts (even a chip without DAO before?!). 21st: Harley’s lost 7% in one week.
3) DOCS: CARDIO (Dec 11th): Rosuvastatin? ONCO: Appt. with onco#2 Jan 8th. (Check lymph nodes, liver and spleen sizes onco#1 wrote.) Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d Nov 8th: URO: IPP/PD 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?
4) UNDER CONTROL ✅ (attention necessary (✅)) - Dec 23rd: Hearing loss with tinnitus and amplified hearing = hyperacusis at the same time from 21:00 Friday till about 12:00 Saturday, 15h. The hyperacusis part was a sensation of loudness, pain and a bit of annoyance, but absolutely no fear. Water noises, my wife talking and other noises jarred loudly, hurt. But trying to talk with her and a mate on the phone I had to ask back several times and use my left ear, my right one was pretty useless. The hearing loss vs. the hyperacusis may have been different frequencies. For both it was better to hold my ear shut with a finger. It improved soon after taking 2x0.113g ginkgo pills, then doing the youtube exercise I put on yesterday's entry and in the early afternoon another 1x0.3g organic ginkgo I'd bought new. Dec 23rd: Drinking not much more than 2L now, no longer 3-4 = less pee, but how possible? Dec 18th-20th: 2xDAO worked for half a walnut 4x and a chip of one without DAO once, but 13th only 10% for 200g baked beans. Run out of 5 supps and not needing apigenin for sleep.... Dec 22th/23rd: Stopping ginkgo caused hearing loss and tinnitus on the right ear, plus balance problems and shakiness for 15h, like after stopping in hospital in August.
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) () Dec 23rd: Drinking closer to 2L than to the 3-4L of a few months ago would explain why my pee urge and frequency is much less. But why am I managing to drink less altho the amount of supps is similar?.
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Dec 2nd (1) & 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 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. 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 Dec 22nd: Run out of ellagic acid & feverfew since Nov23, ginkgo & rhodiola since Dec23, honokiol since mid-Dec, stopping ginkgo then caused hearing/tinnitus/balance problems for 15h Dec 22nd/23rd, so got new, for once from a local shop in good quality, organic, as well as cheap. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. From Dec 11th: LDN 2mg 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
Statins excipients (see yesterday’s) and re-visiting NAC and augmented NAC cos of questions asked.
Quality of life: 90% (maybe 85%, but actually that tinnitus stuff was too interesting an experience to me.)
Lessons in self-care: Took care to get the tinnitus down quickly, but knew what I was doing, so didn’t have to focus on it too much.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Rose still there, mugwort blossom has sprawled cos of the stormy rainy weather.
b) Two woodpigeons, one was Duey, but the other one wasn’t BobStar, in fact I hadn’t seen ?him before, the white patches were pretty long and spiky. I was surprised if it was a male and not BobStar that they were so close together without being a pair.
e) Human life: Dreamt of traversing cities in which people were saving the world, of intricate keys and a colleague, of running and jumping in enormous leaps, endless energy, hiding so no one could find me (together with another person). From forgetting and re-starting LDN?
f) Environment: Good to get out in the early evening at least, everyone keeps saying the weather’s bad, but can’t see that at all.
g) Body: Good like with the ginkgo to realize I lose the energy if I don’t take the LDN.
Click for development/summaries and see profile...
More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023