2023-09-02 Saturday - recovery?: yep, strangely, due I think to the supp changes! (Other explanation would be warmer weather) RR? Supp changes: bit tired today, but that’ll be from not sleeping enough as well as the supps. Wide awake early Sunday after very restorative sleep (NO screen all night for the first time in decades!), but that cortisol then after an hour increased BP for 4h, so I need to take both passiflora & magnolia bark directly at 6 without ado, at least in that constellation.
What … worked / went wrong … today: The supp change worked! 
I was a bit on the tired side, but relaxed and had quite a bit of moderate energy.
How was I today?: Feeling 75-85%-ish (), energy today () - well, in comparison, sleep Friday night (/
), sleep Saturday night , nausea 0% , fog 12% (), no bites , vertigo 0%, 100% of the time .
Today working mainly on … recovery, RR vs. increasing/tolerating blood meds, energy, vertigo.
RR: Battery flat in the daytime, BP brilliant at night, even the 1st hour of the morning, incl. shaving, but then 4h of high blood pressure while dressing and then moving a lot, table tennis at 8:35, esophagus block and flush from supps/eating at 9:30...
|02:02:00|111|74|55||
|03:37:00|101|71|56||
|04:50:00|102|73|56||
|05:52:00|110|69|53||
|06:32:00|135|74|53|undressed|
|06:34:00|126|72|53|79,9kg|
|06:52:00|126|87|65|while shaving|
|06:56:00|126|83|64arr| „|
|||||dressing, but error, see if I can find out when.|
|07:00:00|155|89|53|dressing|
|07:01:00|147|93|67||
|07:08:00|136|92|70arrh|moving a lot|
|07:10:00|151|94|71arr|moving a lot, left arm still|
|07:12:00|130|95|76arrh|moving around a lot, left arm still|
|07:15:00|141|104|70arrh||
|07:18:00|142|124|76arrh|moving around a lot, left arm still|
|07:19:00|138|86|69arrh|moving around a lot, left arm still|
|07:21:00|132|92|75arrh|moving around a lot, left arm still|
|07:23:00|149|116|80arrh|moving around, carrying tray down stairs|
|07:33:00|156|94|55|typing above, sitting|
|07:34:00|149|94|51|resting, still a bit tense|
|07:36:00|160|85|50|resting, less tense|
|07:37:00|142|87|50||
|07:39:00|144|86|50||
|07:40:00|138|87|48||
|07:41:00|143|92|51|arms relaxed, trying to relax face/jaw|
|07:43:00|149|90|52| „, so now I’ll do some gardening|
|07:56:00|153|95|52|phoning|
|07:59:00|153|94|49|after, resting, still a bit tense everywhere|
|08:00:00|148|94|48| „|
|08:03:00|153|91|50| „|
|08:25:00|159|104|53|garden, pee, relaxed now|
||nope|||table tennis|
|08:52:00|167|101|70|middle of table tennis|
First game of table tennis since Aug 8th, possible due to changes in supps (and praps also not taking meds…)
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 ✅: TT 1:1 (moving 20%, talking 30%, counting 0%) ➔ 80%/3 ✅, gardening/moving ➔ 80%/3 ✅, talking 5' ➔ 80%/4 ❌. 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: “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 slow, with "12h rest"), 2h very slow, 2h slow, 0h medium/quick
SLEEP (click for details): 7h16, up 5x (25'), all deep. Woke up alert and that was OK for an hour, but then high blood pressure from 7-11, so I need to take both passiflora and magnolia bark directly at 6, esp. when feeling awake, cos that indicates high cortisol. ✅, everything else OK ✅ ➔ getting up: 90%/0 ✅✅ (indicating cortisol, which increased BP).
GABA A2/+A3/ teeth✅ FCS#1✅ morning, blue-re lips after yesterday warm with blue lips.
Sleep 22:10-5:51, then laid down another 10’, but was awake, 5x5’ breaks, 90%/1, nostrils towards morning 10-20%, local pains off and on: right knee 10%, left shoulder/clavicle 10%. Letting myself fall more carefully, taking notes on paper not laptop - I’ll reduce that even more and put it on my table instead of the sofa, so I don’t have to go down and up again, loo is more than enough. Maybe put notes next to the the loo, so I save that time, too.
Sum: 1h50+5h51-(5*5=)25’ = 7h41-25’ =
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) ✅: The sleep supps in the daytime keep my excitability in check even tho I'm doing dangerous things like talking. 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.
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 26h, 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 with 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:
‘Research’ today:
Forgot to add in the last blog entry that this German page uses 140/90 as a moderate compromise, with 160/90 on the lenient and 120/80 on the strict side.
Harvard as opposed to that uses those recent studies (which the Germans criticise) and conclude 120/70 is always best, that’s a page about keeping the DBP above 60.
Problems from too low blood pressure clevelandclinic lists here, and this’ll be for lower than I have, yes,l but what if my dizziness came from that after all, even tho my wife gets angry when she hears me say that, cos she believes in the opposite.
BVP: Blood pressure variability I’m not sure whether I should pursue, but I’ll note the links:
Blood pressure and its variability: classic and novel measurement techniques | Nature Reviews Cardiology has the Key points:
Although the dynamic nature of blood pressure (BP) is well-known, hypertension guidelines recommend using the average values of static BP readings (office or out-of-office), specifically aiming to level the fluctuations and peaks in BP readings.
All current BP measurement methods have imperfect reproducibility owing to the continuous fluctuation in BP readings, making it difficult to accurately diagnose hypertension.
Accumulating evidence from clinical trials, large registries and meta-analyses shows that increased BP variability predicts cardiovascular outcome, independently of the average BP values.
To date, BP variability is overlooked, with limited application in clinical practice, probably owing to a variety of complex non-standardized BP variability assessment methods and indices, and uncertain thresholds and clinical usefulness.
Novel cuffless wearable BP technologies can provide very large numbers of readings for days and months without the discomfort of traditional BP monitoring devices, and have the potential to replace current BP methods, once accuracy issues are resolved and their clinical usefulness is proved.
Blood pressure variability: clinical relevance and application from 2018:
Not that helpful.
Blood Pressure Variability and Therapeutic Implications in Hypertension and Cardiovascular Diseases says BVP may become important, but is not researched enough yet: “The current guidelines do not include the use of BPV as a target in hypertension treatment, considering it as an optional index, probably because of its uncommon routine clinical use. This may be due to the absence of established threshold levels to discriminate pathological from physiological BPV, together with the lack of a standardized method of BPV assessment during daily clinical activity. These limitations lead to the need of further trials in order to make the BPV available and easy to use as a routine approach in daily clinical practice.” and recommend lifestyle changes as well as CCBs (calcium channel blockers) as meds if BPV is relevant.
How important is blood pressure variability? 2020 doesn’t find BPV as yet that important: “In fact, none of the indicators presently available for BP variability, including early morning BP rise, substantially affects, and redefines, the cardiovascular risk of the hypertensive patient, over and beyond the mere BP values. Accordingly, in defining the cardiovascular risk, the focus should be on the absolute BP values, which remain the most relevant risk factor, and the one more susceptible to modification with both non-pharmacologic and pharmacologic treatment.”
My pulse is nothing to be concerned about, it’s often on the low side, under 60, as mayoclinic says here.
Blood Pressure Variability and Its Management in Hypertensive Patients is an older one from 2012.
Not sure if I’ve put this Korean average readings study from 2013 anywhere (averaging the 2nd to 4th reading is best, which is an important indication, altho often doesn’t fit to my readings).
Blood Pressure Variability - The Implications of Home Versus Automated Office Measurement, referring to an article by Myers and Kaczorowski in the same journal, Hypertension. “Not withstanding the data that blood pressure variability can be a predictor of cardiovascular events, clinicians and patients want a definitive number to know whether or not hypertension exists, whether antihypertensive therapy should be initiated, and to what target blood pressure should antihypertensive drugs dosage be increased or decreased.”
One suggestion they make at the end is: Three kinds of blood pressure measurement should probably be used complementary, ambulatory 24-hour BP measurement (ABPM), Automated office blood pressure measurement (AoBP) (so no white coat), and home blood pressure. Before they say:
“Unfortunately, the debate about AoBP versus home BP does not end. Considering that ABPM is usually accepted as a more accurate method to diagnose hypertension, the data in this study do not provide comfort because of the relatively low correlation between ABPM and either AoBP or home BP.”
Blood pressure variability with different measurement methods (2019)
“To date, neither consensus nor gold standard has been published on how and with which method variability should be estimated.”
“Age, PWV, diuretics, alpha-blockers, but also measurements obtained by nurses, increase blood pressure variability while calcium antagonists reduce it.”
For reducing physical/mental tension (often impossible and needless to separate) I’m using Ally Boothroyd as I find her voice and techniques very calming and at night her 1 hour video is very helpful to me, so I know her style, I’ve now been using
these 10’ and 15’ videos, the former seems a little rushed, the latter has music in the background which I sometimes like.
Quality of life: 95%, “Feeling well”: 80-90%)
Lessons in self-care:
a) Using the extra energy caaarefully.
b) First night not using my laptop after 20:00, the whole night, wrote down my RR notes on a piece of paper. But actually I now see it wasn’t necessary, cos I could read the breaks off the unit and I made sure to keep them down to 5’, get up and down without swinging myself. Interesting that that saves fatigue type energy, but increases my heart throb. Writing less things down, or nothing, will also decrease break length, minimize distractions, and that will increase effectivity.
c) Is there a viable better RR unit than mine? I don’t mind putting it on, but the noise is annoying and stressful. Writing down what I’m doing in that time will still be nec.
Reasons to be cheerful:
a) Robin subadults very close while I’m putting out new food for the birds.
b) So many only semi-expected blossoms starting today, cos of more sun less rain since yesterday. Giant sunflower has 6 secondary flowers apart from the main one, and 3 have opened today, smaller, but still large compared to other flowers. A rose I’d thought had given up still seems to want to blossom its two buds. And a rhododendron is showing a glimmer of pink, meaning that they will blossom a little in the autumn sun.
c) Completely out of the blue, errh, yellow: A one-blossom yellow rose is out a second time that had already surprised me once this year, esp. cos it’s “hidden” in the middle of a flower bed where I usually have lots on the outside to care for.
d) This and the prospect of a very sunny September, at least the next two weeks have made me deadhead the fairy bellflowers as well as the still ample rose campions. So let’s see, today 120 rose campions (oxeyes/suneys only 90 now and getting smaller), and fairy bellflowers only 35. Counting them has let me find some more of both to deadhead. Counting Sunday morning multi-tasking around 32, again just counting them: 40. Sunday 10:52 135 rose campions, 41 bellflowers.
e) Lots of visitors, incl. jays & as often recently at least one white cabbage butterfly, no more butterflies.
f) After having asked on a forum what a certain night moth is called, I saw it has one of those caterpillars that look like twigs and desired to see one again. Today was the day, it landed on my hand and didn’t want to go down, tickled me for quite a time. Then a few hours later I could show it to my wife, she was amazed.
Simplified: -
Foggies: -
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
, cos like often I thought “while I’m at it, I may aswell”, and all the many "may as well"s took 2-3h, all the time under time and multi-tasking pressure, not daring to take BP or even think about it probably being too high. And in between I cheated myself that it doesn’t feel too high, or rather it doesn’t matter, cos I’m not that tense and that’s what I was gonna watch out for today…
trialling reduction of eleuthero and ginkgo.
more tension control, incl. jumping out of my hamster 
preparing supps after 2nd meal again (too hot outside anyway),
balancing exercises regularly,
wall sits several times a day to decrease BP.
- First, and trimmed the entries again.
realized that my clavicle worsening is from becoming lax with the back exercises. So rather than taxing myself too much with the pain and tiredness I did only half of the ones lying on my back and then lay stretching for 10’, which is a great idea, so I get 2 small rewards: 
Drat it’s on 38° (using lowest laptop light), why? Now I need to shake it down… 
- looked harmless, and was actually, but made my head run. So I had to get rid of what I was thinking of saying, which was OK, but I still needed to shower… but cold was too cold, it turned out.
- I was eating my 3rd meal half an hour before her. Also I did get quite a bit done, and it was important, I just can’t focus on everything at once, so today I went out of balance for work, but nothing else.
with tea tree oil.) So as the review says, people with secondary Raynauld are a lot worse off.
White/blue lip massage / puckering: 
)