JayCS’s Fibro Blog

2022-12-03, Saturday - Energy 20% / Sleep 90% / Feeling 80%-ish / nausea 10%, fog 20%

Successes:
:-1: Forgot back yesterday, so aiming for 3x today… :trophy: 9:20-40
:trophy: Adding & spreading night GABA helped sinuses again.
:zap: Again doesn’t seem worth taking B-supps before getting up, rather then, back, shaving, teeth etc. before eating.
:zap: Worse esophagus may be from less self-discipline this week.
:zap: It’s the slowness & avoiding overdoing it that way that’s helping me keep at activities push thru.
:zap: Check antihistamine effects on bladder…:
Learnt: :student: Yes, antihistamines decrease nocturia (night time voiding)!
:student: and daytime frequency
:student: and pain (burning, pressure…) (well, that’s not necessarily working…)
:student: My loose stools may be from it.
:student: My dryer mouth maybe too.
New Habits: :new: (3rd: 4 more again)
:ambulance: 5’ Worry time (:white_check_mark:) 5’ plan time (:white_check_mark:), 1-2h me time (:white_check_mark:)
:ambulance: Lower back: More exercises (:white_check_mark:) hanging :white_check_mark: massager (:white_check_mark:) HWB (:white_check_mark:), typing lying on front :white_check_mark:
:ambulance: Gastritol &/or fennel tea with psyllium for night stomach? (:white_check_mark:)
:ambulance: Close all powder tubs and put all dose tabs back after capsule “lab”. (:white_check_mark:)
:ambulance: Note empty encapsulated tubs on ToDo ‘hub’, do earlier. (:white_check_mark:)
:ambulance: Minimize oat milk, cos of heartburn :white_check_mark:
:ambulance: Need to quickly order B2 - but which one?! (:white_check_mark:)
:ambulance: Keep lips & hands, esp. knuckles & finger-tips creamed. :white_check_mark:
:ambulance: Chew foods minutely, take supps with big gulps, watch for new ideas. :white_check_mark:
:ambulance: Use my day lamps more now it’s November grey. :white_check_mark:
:ambulance: Try taking my antihistamine at 18:00. (:white_check_mark:)

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10%, stiff 10%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (80%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) → MCAS / histamine:
Today: “5%” altogether = 20% energy for under 45’, then white lips & pale face. But kept under that limit, so didn’t.
Night ‘histaminey’ problems: 8:00-9:00 (added GABA): nostrils 5% nauseous 5% stomach 5% sinuses 5% headache 0% sore throat 5%.
Day condition: Nausea 0%, white lips 30%, pale face 20%, “ill ache” off and on 0%, sliding around indoors (stiffness, fatigue & nausea) 0%, cold intolerance (cold shower yes, but long johns day and night, plus hoodie at night) 30%.
Tendencies:
Nov 17th 15:00 breaking down ‘ill’.
Nov 18th, directly before getting up, energy suddenly down from 20 to 10%.
Nov 20th: energy and well-feeling picked up again, despite often overdoing it a bit.
Nov 23rd: Before I was winning at table tennis all the time, from now clearly losing all the time, except 29th. But ~20% energy is there for up to 45’, then I break down with green-grey face & white lips thru activities incl. socializing."
Dec 2nd: Winning TT, playing easily, 5 games (with break, very cold).
Treatments: Antihistamine and extra GABA, adding more from 29th.

SLEEP (click for details): 8h11, up 4x (25'), all deep ✅ ➔ Feeling 80% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils 0% stuffy 100% of the night.

A3 A4 teeth cold shower p0 Sleep 0:35- Why not 21:00?
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
1:28 5’ 90%/1/15% p0 st1 sip fw1’ deep air cream
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
3.05 5’ 80%/1/15% p0 st1 sip fw1’ deep air cream gel HWB#
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
4:35 5’ 80%/1/15% p0 st1 sip fw1’ deep air → A5! cream gel
(nostrils0% nauseous10% stomach5% sinuses10% headache0% sore throat10%)
8:00 10’ 90%/1/15% p0 st1 sip fw1’ deep air cream gel B1-4
(nostrils0% nauseous10% stomach5% sinuses10% headache0% sore throat10%)
-9:11 B1-4 0‘ in sun, stools firm?
Sum: 9h11-35-(5+5+5+10=)25 = 8h36-25 = 8h11, up 4x (25’)

ACTIVITIES (aim: 40% energy)ACHE: ➔ TT 4:0 ➔ 90%/2 :white_check_mark: resting, garden, zoom meeting, cycling to shop, fixing something, shop ➔ 90%/2 :white_check_mark:
ACTIONSPAINS: except GI: softer Friday :white_check_mark:, esophagus: watched it better Friday :white_check_mark:, jaw x5’’ :white_check_mark:, pee pain: 3xp1-2 :white_check_mark: lower back unrest :white_check_mark:
Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:.
Last focal seizures: Nov 21st: 2x
Last esophagus blocks: 1st again a fairly severe block. 30th severe again twice, first moderate, second severe, both from cold stuff (yogurt and aloe vera, but a few supp pills came out again too, there’s often a dark brown one which is a suspicious lump), 29th fairly severe, but dissolved it quick, later moderate, dissolved it fairly quick. 28th slight, Nov 24th only slight, but definitely due to cold liquids. Nov 22nd (from cold yogurt+supps). Nov 20th.
I’ll now be going to hospital for a day or two for dilation and re-diagnosing. I think hospital will actually be OK at the moment, as I am sleeping well.

Treatments

Docs:
Online course ACT (acceptance and commitment therapy) starting Oct 24th, about 2h per week.
Chinese Acupuncturist - Session #32 on 4th., after 14 days :white_check_mark: “Energy still pretty stable at 20%, despite jab-nausea…”
Session #33 indefinite. As my energy is still fairly high, considering, I don’t want to risk more cortisol bringing a dysbalance at the moment.
Alternative health practitioner: appt. on Dec 6th.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 90' (RR: 130-127/78-75)

white_check_mark: airing 5x2’, cold shower 1x(10’), alternating shower 0x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 2x2’, HWB 2x3’, breath exercises 3x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp 30’, plantar/calf stretch x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’ (1st time counted for yesterday), !!aloe vera 0x1’, twist-stretch 2x1’, yoga/stretching 3x1’, hang 2x1’. hunchback-pillow ’, wart x1. neck 1+ x1’, RR: 4x2’.
Combine: next?
:x: neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.

Supps Nov 27th (45 supps): Supp costs:~421€/m (27th): 2nd: order B2! and eleuthero etc. 27th: 0 eleuthero for a time. 22nd: Try less psyllium at night in almond milk: then pectin? 20th Checked & corrected the pill amounts per tub now that I'm simplifying the system for preparing them.... still differences. Nov 19th: Pill intakes now in tubs. Nov 19th: Vit.C not with copper I found a note, so Cu in the evenings and vit. C the meals before till I get that sorted (4th: +Cu for high dose vit. C again for 8 weeks from Nov 4th). Nov 24th: B2 3x500 (max 1.5g)! 24th: B3/Niacin/nicotinic acid powder1.2, 1.2, 1.0g (evening less). 7th: Check fisetin. 4th: Energy better since restarting quercetin & feverfew. New idea: Creatine? ATP again, encapsulated, for phosphate?? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, mum, NAC 1*.5g, NADH, Rib, Se, Sr, Zn. Nov 27th: 0 eleuthero

REGULAR as of Nov 27th (45 supps: R-ALA .2g, aloe vera juice 50+ml/d, alpha-GPC 1x150mg, apigenin 1x50mg, vit. B2 3x400mg, vit. B3/Nia 2x0.8+0.6g, vit. B5/Panto: 1-3x.5g vit. B12 1x5mg/4m, vit. C up to 3x2x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 2mg, vit. D3 20.000 IE = 500mcg, + vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, Ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 0x2, Feverfew (fev) .4g (+.2g MSM), Fisetin (fis): 0x196mg. GABA (Ga): back to 3x0.3g+2x.6g=2.1g, ginkgo (Gi) 3x168mg, Glutamin (gltm, glu): 0.6g, Glutathione (gltt) 4x250mg, Hononkiol (Hon) (2%)x2x.4g=16mg, huperzia (hup) 1x0.2mg, Luteolin (lut) .2g, Ω3 1x5mg, Magnesium Glycinate (Mg gly) 2x50mg, Malate (Mg Mal) 2x45mg, Threonate (Mg threo) 50g, monk’s fruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, P5P (= vit. B6) 0x27mg, Levagen±PEA 1x0.4g, Psyllium (Ps), passiflora (Pf) 3x.35g, pine bark (pin) 2x.5g, PQQ 1, CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 4x.5g, resveratrol (Rs) (50%) 2x.4g, rhodiola (Ro) 2x.35g, Rutin (ru): 1x522. SAM-e (Sa) .1g, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), L-theanine (The) 2x.2g (+.15g polyphenols), TMG: as much as B3.

What-when-details: Updated Nov 20th.
EARLIER!
/ +0.25 GABA after 4:00
19:40 0 “16:15” preparing pills
19:40 “18:15” A1 PF#1 2 mg mal, mag threo. 1Lut.
5’ empty = praps-worry time.
/20:10 “18:30” myo-inositol (try → every evenings) + teeth
/20:10 “19:30” A2=12+1 B2#1 "2"xvB3 B5#1 2Cr#1, PF#2, Qc#1. Cu .3gGABA CoQ10 (oil) TMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monk’s fruit. Cu with amino acids (to counteract high dose vit. C, but not together with vit. C?: 0(?)
/ Meal 20: ’ +xylitol. Back exercises. Soak seeds. aloe.
/21:00 “20:30” pre-A3 agigenin 1h before bedtime + teeth
0 “20:30” chamomile
/22:00 “21:00” A3 PF#3 0.3gGABA & .6glu & Qc#2 Hon#2 + 1 Rupafin or A2
/0:35 “23:00” A4 300mg GABA + teeth
0 Psyllium.
8:00 B=11/ ’ in sun “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM + Sily +2The Back exercises. Soak seeds.
9:00 Teeth.
10:08-10:35 Meal 20’ in day lamp. aloe.
/10:35-45 10’ in daylight lamp C=23/ with meal: vit.B2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 TMG#2 alpha-GPC 0x2xEleu Hup 2gly PEA Rutin = 23. (vit.D3 1/wk) 20th: ONLY 22 IN THERE, WHAT’S MISSING? A TINY ONE?
/10:35 “after muesli” C5 2xglutathion
xylitol
nux
teeth
/13:55 “11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
14:30 RR 181/93 need to go to the loo, but 130-127/78-75 afterwards…!
/14:30-15:10 “14:00” 0 Meal ’ in sun +aloe
/15:15 “14:15” D=15/ ’ in sun vB2#3 "2"vB3#3 vB5#3 3xvC#2 3Cr#3, .6GABA#5, gink#3 Oli#2, pine#2, TMG#3
/15:20 “after lunch” D3+ 2xglutathion
/15:20 xylitol
/18:10 “16:15” teeth
/“16:15” preparing pills: 5x to encapsulate.
0 “16:15” nux
/ A1 “18:00”
/ D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
/ myo-inositol
/ Eat + 0 aloe + / PQQ+Ω3
/ A2 + / apigenin & / heating down
eve:
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c. 2022-04-10, last: 2022-10-25?)

The day's 16 supp-compartments (10', plus 5' making capsules), Nov 20th

Pf: 1A1+1A2+1A3, vB2: A,C,D. vB3: 0,7gA2,0,8gC3,0,8gD3. vB5: A,C,D. vC:0A2+3C3+3D3 8Cr: 2A2+3C1+3D2, Ell: D0+D4. 4-5xGa: a2,a3,a4,C1,D2, Gi: C2,D0,D3 Glutamin: A3 (0c1) Glutathione: 2x"C5", 2x"D3+" (after meal). Hon:A2.A3. Oliv leaf extr:C1D2. pine:C1D2. Qc: A1.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A1: 2xMgMal, Luteolin. MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol). (A2:Ω/Pq:meal, A3: apigenin) B2: ALA. B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C1: alpha GPC. 0x2xeleuthero. huperzia. C2: 2Gly C3:PEA+Ru, DAO before risky meals? monk’s fruit usually evenings, aloe vera. D3 1x/wk.
(A2:0Se), (0NAC: A3, B1,C1,C3,D2)
TALLIES - correct Nov 25th:
A1=6+1 Pf#1 Qc1#1, Lut, 2MgMal, MgThreo… + myo-inositol + (DAO?)
A2=12+1 vB2#1 "2"xvB3, vB5#1, 2xCr#1, Pf#2, Ga#1, Hon#1, Cu, Q10, TMG#1 + Rup.
+Ω3/PQQ/aloe +monk’s +apigenin
A3=5 Pf#3, Ga, Gltm, Hon, Qc#3
A4=1 Ga
B=11 Qc#3, Ro#1, Rs#2, ALA, 2xSa, 2Th, EGCG, Fev/MSM, Sily + (DAO?) = 11/
C=23 vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 alpha-GPC 0x2xEleu 2xMgGly hup PEA Rut = 23, -2 eleuthero. -1 huperzia. = 20/
C5=2 2Gltt
D0=2 Ell, Gi + (DAO?)
D=15 vB2#3 "2"vB3#3 vB5#3 3xvC#2 3xCr#3 Ga#5 Gi#3 Ol#2 Pin#2 TMG#3
25th: -vB5#3: so only 14/
D3=2 2Gltt
E=4 Ell, Qc#4, Ro#2, Rs#2.
B12 4-monthly, D3 Saturdays.

Development

‘Research’ today:
Watching an RSM supp meeting recording, more interesting than I’d’ve thought.
Antihistamines for IC/BPS
Hydroxyzine affects mast cell degranulation, which is thought to play a part in some IC/BPS patients’ symptoms, especially those who have a history of allergies, migraines and irritable bowel syndrome. Hydroxyzine has been shown to improve these conditions, as well as IC/BPS. Hydroxyzine has been found to decrease:
After one year some patients are able to decrease their dosage by one-half without increasing symptoms. Others report that upon reducing their dosage, symptoms will return within a few days.

Potential Side Effects

Side effects include sedation, dry mouth, and increased depression in patients diagnosed with concurrent depression.
Take this medicine early in the evening initially to avoid excessive morning drowsiness. Most patients report that daytime drowsiness disappears within four to five days after beginning hydroxyzine therapy. Some patients report that with each dosage increase, the drowsiness period is shorter and not as intense.
Hydroxyzine is contraindicated for use in epileptic patients.
Interesting, so I looked up my rupatadine/Rupafin, but that is not contraindicated. What it has as 1 in 1000 side effects which may be relevant to me is: diarrhea, dry mouth, thirst, headache, tiredness, liver and kidney bloods, weakness, sore throat.
To take “independently of meals”, so that means with or without them (looked it up).
Altmeyers says it’s comparable to ceterizine. Mainly for rhinitis allergica and urticaria incl. from coldness. Most common side effects are somnolence (9,5%), headache (6,9%), fatigue (3,2%). Since 2008.

  • Nocturia (night time voiding)
  • Daytime frequency
  • Pain (burning, pressure, painful intercourse)
    Of course as said above it reduces mast cell degranulation, that’s why I’m taking it.

And regarding the mechanism this seems most relevant on self:
“can cause changes in blood flow that dry out the mucus membranes in the body.”
Same was it’s drying my mouth is also drying my bladder - which is OK. Here tho it says dry eyes, dry gut (constipation…? - above it says diarrhea!). Increased urinary retention—meaning that your bladder doesn’t empty all the way when you pee—is another possible side effect of antihistamines that’s related to their actions on acetylcholine. Similar to the way the drugs can affect the gut muscles, they can also affect the bladder muscles, making it difficult to fully empty the bladder. Hmm… And might stop working, so I’d have to switch.
But this may all be 1st generation, not 2nd generation, which have less frequent and less side effects…?
Wouldn’t them stopping working be a reason to try taking it irregularly, every two days?
Drugs says they start working inside of 30’ and reach their max. effect inside of 2h…

ToDo: RSM Webinar on fibro on Oct 10th, on fatigue on Oct 25th, on lipids Nov 15th - still need to get round to that and the MCAS summit before that.
Lessons in self-care #497 Nice’n’slow!
Reasons to be cheerful #529 Fun sleep being ‘normal’ now, esp. now GABA’s improving my well-feeling at night.