2023-09-10 Sunday - recovery: Yep, slowly, UTI improving too. RR/supp changes: Stopping eleuthero and reducing ginkgo seems to be making a lot of difference, my BP doesn’t feel high and isn’t either.
What … worked / went wrong … today: Well, quite a few things worked, but stopping eleuthero seems to be the right idea.
How was I today?: Feeling 80-85%-ish (
), energy today () - compared, sleep Saturday night , sleep Sunday night (), nausea 0% , fog 10% (), 1 bite in the evening, getting worse Monday ()/(
), vertigo 0%, 100% of the time ().
Today working mainly on … recovery, RR vs. increasing/tolerating blood meds (as well as definitely supps, NSDR & more), energy, vertigo.
RR: HIGH BP PERIODS: 25th morning 5h, 31st afternoon 50', 3rd morning 4h, 5th: midday 2h. 6th: 9:30-9:50, 12:00-13:00. 7th: 2h, NSDR helped, slight movement brought it up for a time. 8th: possibly high in morning, unsure how many hours. 9th: Measured less, not de-stressing enough. 10th: de-tensing. 10th: Brilliant after dropping eleuthero.
| 09:35:00 | 143 | 84 | 66 | |
|---|---|---|---|---|
| 10:27:00 | 145 | 71 | 81 | |
| 10:29:00 | 128 | 70 | 80 | |
| 15:30:00 | 121 | 82 | 76 | |
| 16:22:00 | 134 | 88 | 86 | after moving |
| 17:48:00 | 134 | 73 | 77 | arrh |
| 17:48:00 | 129 | 84 | 81 | |
| 20:05:00 | 118 | 75 | 70 | |
| 22:10:00 | 120 | 103 | 71 | |
| 22:12:00 | 127 | 68 | 74 | |
| 22:13:00 | 117 | 73 | 74 | |
| 23:29:00 | 120 | 61 | 74 | |
| 23:48:00 | 123 | 66 | 72 | |
| 23:56:00 | 120 | 85 | 70 | |
| 01:14:00 | 111 | 68 | 75 | |
| 02:38:00 | 86 | 59 | 71 | |
| 04:31:00 | 101 | 69 | 71 | |
| 06:25:00 | 122 | 78 | 77 | gotten up |
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (doing things, quickly severe, muscles) (✅ - cos wasn't doing much?) vs. post postural ache (rest) ✅ is the only possible adjustment now, stiffness OK ✅: no TT, cos mate had a histamine-y night, from tuna, he's definitely joined the club now, and then his dad died, slow gardening/moving ➔ 80%/2 ✅, talking 15' ➔ 70%/4 ❌, listening to my wife 5' without answering back is I think more tense than Ache (cos the cortisol prevents Ache?) ➔ 50%/3 ❌. White lips70% (❌). Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), click for details:
EXHAUSTIBILITY today: “88%". 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 "?12h rest"), 1h very slow, 2h slow, 1h medium/quick
SLEEP (click for details): 7h25, up 4x (45'), not always deep. 80% (✅), everything else OK ✅ ➔ getting up: 80%/2 ✅.
Sleep 22:15-6:25 4 breaks, but one 30’ cos of sudden elbow tendonitis, which I then worked on with pressing, massager & cold bathing, some work thoughts (and itchy scalp and ears).
Sum: 1h45+6h25-(45)’ = 8h10-45’ =
2) Watching TRIGGERS (updated Aug 23rd 2023) at least once a month with additional symptoms and continually bringing energy down from 20% to 10%, Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% ✅, tongue burning: 10% day, 20% night ✅. Excitement (= stress) ✅: Tense cos of my wife's state, she's keeping away from me to save me getting hurt, but any noise gets her off again, so I'm orienting myself in the garden all day, which is nice, un-stressed and also useful for getting into that habit, trying to alternate between digital stuff and garden. Need to do something for work now, otherwise stress will rise too quickly next week. 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%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine 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.
3) DOCS: Last update Sep 7th: VERTIGO: My cardio agrees that I should focus on keeping blood pressure spikes down using supps and relaxation etc., but also meds at the moment, since the RR jumping up from 110 to 160 when I get up is a huge burden for the system and might well have caused the vertigo. Sep 4th: ONCO/URO: Sep 4th all cancer clear, slightly enlarged prostate, med for pee frequency (which I won't be taking). Click for details.
Starting Feb/March with “B symptoms” (GP Mar 29th: night sweats, cough plus appetite & weight loss), mamila swelling, PSA high Apr 20th. Mar 30th: So lung X-ray OK, Apr 6th: mamilla OK. Sweats OK Apr 9th, appetite OK-ish by June, weight OK-ish too, but down again after vertigo. Apr 24th: Weird, 20’ onco appointment, feedback STILL pending, incl. onco blood results (just others on July 20th). So now uro at least: Nothing to be seen, whether PSA & testosterone bloods or in bladder, just prostate a little enlarge, after phytosterols don’t seem to be working, prescribed a med for pee frequency which I doubt I’ll be taking. Feb-bloods: Ω3 needs increasing, much too low.
I’ve finished off 3 dairy yogurts today my wife kept forgetting to eat and I started yesterday, all 2 months above expiry date, if I get any GI or histamine problems it will be from that, one was even with strawberries which are acid trouble as well. I made sure tho to mix that all with other foods and to eat the biggest amount with the 2nd not 3rd meal, so it doesn’t trouble my sleep.
4) UNDER CONTROL: attention necessary ✅/(✅):
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 on SEIZURES: GABA better up (also for pee pain). Aug 1st, July 25th + 7th were only seizure-ish 4-5x, increase in May-June was stress/histamine/less GABA: LAST Aug 9th: 2x. July 17th (2), Jun 23rd (4) & 16th & 6th (2), May 25th (2) &14th/13th, Apr 16th/15th. Last ESOPHAGUS BLOCKS: Aug 31st, Aug 26th, Aug 8th, July 23rd & 16th, May 31st (all 3 cos distracted), before that Apr 4th ✅.
Last focal seizures: 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 seizur-ish 4x. 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: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 1st: NADH 10-20mg 20' again before meals, order Ω3 again (others too), passiflora & magnolia before 1st and 2nd meals instead of in the evenings, eleuthero up to 4x before 1st meal, keep up apigenin and myo-inositol in the evenings, in case. GABA down to max. 6x0,3 eve/night, +3x0,3 before meals. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN?
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, 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
Quality of life: 85%, “Feeling well”: 75-85%, tense cos of wife, tension improving despite that cos of stopping eleuthero.
Lessons in self-care: Not necessary
Reasons to be cheerful:
a) Loudly screeching jays warned me the garden death toll had risen, and I later sat between quite a few small fluffy feathers that confirmed that, more and different ones than from just preening.
b) Being at the foresty end of the garden brings a closer perspective, and so far no bites.
c) Good to see how many insects are on the suneyes (oxeyes).
d) Flower details: The suneyes are back up to 120 again, the bellflowers down to 9, so it’s right to have given up dead-heading them, there’s only another 3-4 buds still to come, but the rose campions are still at 98 and lots more to come, so it may not be the 120 of a few weeks back, but still worth dead-heading. The last 8 red roses I won’t be dead-heading, let’s see if their rose-hips are as beautiful and manifold (240!) as those of the dog rose. The resurrected 1 of the twin pink roses has been in full bloom for quite a time, big and wonderful. The resurrected single yellow one was like expected and like the first only there for 3 days (no, not resurrected on the 3rd day, went back to sleep on the 4th). See how the hips are there too. But most astounding is the 2nd sunflower, with it’s enormous first flower, and now another 6 - no wonder the big head didn’t turn round to the sun, cos it knew what a bunch was coming! I’m also very pleased that the honeysuckle leaves have come again, and I hope I’ll realize any fungus quicker this time without me having to cut them all off. Whilst cutting off 25 rose campion heads I saw about 50 new ones coming up. Only on one there wasn’t anything, and I quickly found the culprits: greenflies - “leaf lice” is the German word, and looking that up on my laptop I saw that was what weakened the honeysuckle, I’d forgotten cos it was a time where I wasn’t sure what rhat plant was. The little flowers of virgin-in-the-bower I thought wouldn’t come again: have!
f) Fun that after not even a year I can immediately identify >90% of all plants, wild or cultivated, in our garden and when I see them outside.
g) Also fun that there’s still some mysteries to come, where I have an inkling, but so far the inklings that the tool had suggested were more often wrong than right.
Simplified: -
Foggies: Dropping things. Can’t see near things too well at the moment. Hard to think of everything. But at least I’m gonna get my head round work soon. Even tho distracted from the losses.
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
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food 2023.
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
- Next up…: Summaries
- Research ToDo: supps webinar on Dec 2nd, fibro webinar transcripts, the MCAS summit, read