2023-08-26 Saturday - recovery?: Nope. RR: OK since Friday 14:00, altho too long screen time kept it up a bit sometimes at night. Is it some of my sleep supps that are decreasing my night bp so much?
What … worked / went wrong … today: ? Feeling ‘much’ better - as long as I don’t do more than 10-15’ minutes, like shops etc.! Then the curtain comes down quickly, visible in the whiteness of my lips.
How was I today?: Feeling 65-75%-ish (
), energy today (), sleep Friday night (
), sleep Saturday night (), nausea 0(-10)% (), fog 10% (), no bites , vertigo 10%, 20% of the time ().
Today working mainly on … recovery, RR vs. increasing/tolerating blood meds, energy, vertigo.
RR: My neighbour believed my blood pressure had now been adjusted. I had to laugh and tell her what my GP said, that the med they'd recommended will only work after 2-4 weeks, any improvements would be placebo, and then she laughed. This shows that they don't think my blood pressure is seriously amiss, otherwise they would have recommended a beta-blocker or calcium channel blocker. I keep wondering what exactly my white lips has to do with my blood pressure. The bp is normal, but my lips are incredibly white nowadays, esp. today after my cold shower. RR has been OK since Friday 14:00, altho too long screen time kept it up a bit sometimes Saturday night. Is it some of my sleep supps that are decreasing my night bp so much?
(>) 9:41 137/77 (56) exhaustion after strain of 15’ of kitchen work
(>) 10:26 147/87 (78) after talking energetically 10’ with neighbour about her bp meds, 139/78 (73), but 10:33 122/70 (69) despite talking again energetically 4’ with her about what needs to be cleaned, which should’ve been more of a strain - seems it’s the length of the talk.
= 11:37 121/84 (69), wasn’t sure if it might not be higher.
= 13:20 126/79 (71) up stairs, moving around a lot before and after that.
= 13:35 117/66 (61)
= 15:03 132/71 (73)
= 16:59 138/76 69 after health bills for insurance and moving
= 19:42 125/76 (61) 19:55 124/72 (64)
22:42 147/83 (67) 148/89 (67) maybe cos I should long be in bed, or have stopped screen time - interesting.
Cold shower? Nope, 143/71 (67),
breath-holding: = yep, 22:59 123/72 (68) OUT: 99/62 IN: 127/63 OUT 112/64 IN-HOLD STARTING INH : 103/77 OUT (START): 116/62. IN 121/71. 23:15 118/93 64 23:17 129/78 64
(=) 0:57 159/68 58 after loo, but then soon 113/70 55 & 107/63 (58), so I think that was negligible, whether mistake or spike.
= 2:40 112/71 63 urge, after 2:46 109/63 57.
3:48 103/63 (68) before pee, 4:18 20 105 64 58
(=) 5:05 127/67 (61) 110/67 (57) 6 5:27 125/69 (59) arrh. OK, that was just negligible irritation, and I need to keep screen time down at night as well as urge time.
(=) 6:25 123/74 (63) after pee/exercise/fetching RR
= 7:49 129/80 (69) after having moved around. Tired! Wired.
(= ) 8:43 144/83 63 after uploading bills with several problems.
= 9:34-37 140/85 (67) after watering 136 88 63 125/87 (61)
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (doing things, quickly severe, muscles) ❌ vs. post postural ache (rest) ✅ is the only possible adjustment now, stiffness OK ✅: no TT, gardening/moving for more than 15' ➔ 80%/4-5 ❌, talking for more than 5'-15', depending ➔ 80%/4-5 ❌. White lips60-80% ❌. Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), click for details:
EXHAUSTIBILITY today: “92%". 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 very slow, with "15h rest"), 1h very slow, 0h slow/medium/quick
SLEEP (click for details): 6h53, up 6x (1h27), >4h (6h?) deep, rest deep doze/NSDR ❌. 70%/2/5% p0 st2 fw35' air4x -A8 drymouth30% sore throat10% tongue20% nostril/s0-5(-20)% nausea0-20% ✅, everything else OK ✅ ➔ getting up: 75%/2 (✅). - All from too much too much screen time, need to start anew today, starting with early sun! - and it is sunny. And too much screen time was cos I'd managed to get some health bill paper work done, and then cos my wife was out. So need to start early with the paper work and get it done with, like planned yesterday!
GABA A2/+A3/ A3:0 A4:0 teeth✅ p0 FCS#1✅? (3rd # is lower back unrest)
Sleep 23:25-
0:57 6’ nostrils10/0 heartburn20% 159/68 58 after loo, 113/70 55 107/63 58 30-20-10 rest 0.
2:40 9’ same, but nostrils 5 heartburn5. 112/71 63 urge. Is it some of my sleep supps that are decreasing my night bp so much? after 2:46 109/63 57.
3:48 42’ (fw35’) same, but heartburn 0, smelly wind 20 103/63 68 before pee, nausea 4:18 20 105 64 58
5:05 23’ deep doze 5:05 127/67 61 110/67 57 6 5:27 125/69 (59) arrh.
5:49 5’ shallow, so NSDR
6:25 2’ p0 deep doze NSDR 123/74 (63) after pee -6 fetching RR
-7:45 7:49 129/80 (69) after having moved around. Tired! Wired.
8:43 144/83 63 after uploading bills
9:34-37 140/85 (67) after watering 136 88 63 125/87 (61)
Sum: h35+7h45-(6+9+42+23+5+2=)87’ =8h20-1h27 =
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) ❌: doing health bills, then revenge procrastinating with forum posting too late and long, even at night, silly, but I can see the reason. 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 (simplified 18th and 23rd): VERTIGO: Aug 9th-14th: No cause of the severe vertigo & wonky gait on the 9th found in stroke/neuro. 20th: Need to take blood pressure and lipids more seriously now, adding meds to all the supps, even if the association with vertigo is unclear. ONCO/URO: Onco Apr 24th was useless up to now. Bladder exam Sep 4th mainly cos of bladder problems (finger exam July 31st, bloods Aug 7th). 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. Feb-bloods: Ω3 needs increasing, much too low.
I’m still not that wind resilient/resistant, for instance I can often not sit on our balcony, I realized when my wife asked me to join her there Sunday morning. First I pulled up my loop scarf over my nose, then got a hot water bottle, and had long started thinking that the wind isn’t good for me, then laughed and told my wife I now knew what the problem was. Body hurting too, but not from sleeping less as it stopped when I went down to outside the cellar entrance which despite having the cellar door open hardly has a draught.
4) UNDER CONTROL: attention necessary ✅/(✅), 26th: esophagus block from drinking my evening supps with buttermilk instead of almond milk and then cold jogurt after ❌:
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 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 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 - 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. 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
Blood pressure…? Nope, bills first.
Quality of life: 90%. “Feeling well”: 75%, bills (afternoon) & revenge forum posting at night annoyingly bad for sleep, but still OK, no need to bash myself.
Lessons in self-care:
a) Today I should get the difficult big things done: health bils & tax, seeing as it’s a good day for this, who knows when else.
Reasons to be cheerful:
a) Lovely morning
b) Got plants and kitchen done early, first meal late 10:10 (so TRE might be up to 14/10)
c) Wife in a more hopeful mood.
d) 16 red roses smiling down at me in the cellar entrance.
e) Blood pressure good since 14:00 Friday.
f) Wearing thinner shoes today makes me feel nimbler, healthier.
Simplified: 1 thing, can’t remember.
Foggies: Searching for words fairly often.
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