Anyone here diagnosed with POTS/MCAS/Dysautonomia?

LucH

@Mossy said:

my loose understanding of things has me thinking a stress-induced dysautomnia caused dis-regulation of things. And part of that dysautomnia being a poor acting vagus nerve.

Yes as a transmission canal. Not the source.
Useful info (part of my doc).
*) Introduction
Dysautonomia in short
Dysautonomia is a disorder of the autonomic nervous system (ANS), where the nerves that control involuntary bodily functions—like breathing, heart rate, blood pressure, digestive issues such as nausea, and temperature—don't function properly. This malfunction leads to a wide range of disruptive symptoms and problems with fatigue and exercise intolerance or difficulty in controlling body temperature.

Why dysautonomia happens when active pathways are ineffective
Dysautonomia occurs when the body's automatic control centers fail to coordinate normal responses, driven primarily by low blood volume, faulty nerve signaling, and uncoordinated vascular feedback loops. When normal compensatory pathways are ineffective, the autonomic nervous system cannot properly balance heart rate, blood pressure, and blood flow. [1, 2, 3]
We aren’t focusing here on the consequences but the origin, not simply an excess of manufactured food (devitalized). Why 50 mg B1 with a complex form isn't functioning to solve the problem.

Origin of the breakdown
The true origin of this breakdown lies in mitochondrial bio-energetic failure within the autonomic control centers, not just a simple lack of dietary nutrients. When the brainstem and hypothalamus lose the capacity to generate ATP, the autonomic nervous system defaults into chaos, manifesting as dysautonomia. [1, 2]
The breakdown below explains why a standard 50 mg B1 complex fails to fix this issue, focusing on the root cellular mechanics rather than downstream consequences.

The Saturation Barrier (Why B1 Fails)
• Absorption Ceiling: Standard oral B1 relies on active transport proteins that cap total absorption at roughly 5%.
• The Block: Common usual doses above 5 mg thiamine HCl saturate these transporters, leaving the rest unabsorbed and excreted. (Rate-limited active transport proteins are SLC19A2 and SLC19A3).
• System Failure: If the necessary cofactors (like magnesium) or processing enzymes are structurally impaired, even that 5% cannot be activated. [1, 2]
Impaired Signaling (The Real Origin)
• Faulty Communication: The core issue is not a simple nutritional deficiency.
• Miscommunication: The brain, nerves, and blood vessels fail to talk to each other correctly.
• Broken Signals: The physical wiring sends distorted messages, meaning the body cannot execute basic survival commands seamlessly. [1, 2]
Dysautonomia (The Control Failure)
• Broken Autopilot: Dysautonomia is a structural malfunction of the body's automatic control center.
• No Feedback Loop: The central nervous system cannot process real-time data from the body.
• System Chaos: Without an adequate feedback loop to adjust heart rate and blood pressure, the system defaults into permanent functional chaos. [1, 2]

Core Breakdown Mechanisms (...)
To be continued if wanted (link).

user1

@hearthfire

Higher manganese intake can solve sciatica. Gelatin can too in some people, amazoniac mentionned manganese, copper, silica, sulfur, ascorbic acid for cartilage, wich discs between vertebrae are allegedly

Is there a comment here you expend on your diet?

Did the acid reflux start before you started taking baking soda? Did your symptoms/some of your symptoms worsen after you started taking baking soda?

When the symptoms started arround the 19th, did you spend lot of time in sunlight, if yes, was in one of the first days of the year you did?

@maplesyrupbro do you drink alot of maple syrup based on your name?how much?

user1

This post is deleted!

Hearthfire

@user1

@user1 said:

Is there a comment here you expend on your diet?

No. I mostly eat homemade meals, a few examples: stuff like stir frys, chicken soup, beef stew, red beans, hamburgers, pasta (spaghetti type stuff). Not a full list, but I probably eat too much pasta and rice for one thing as well as too much tomato sauces and acidic foods. I always thought it was eating a lot of tomato sauces that probably caused my acid reflux, but I'm not sure if that's it.
As for breakfast, I usually skip, and I just drink a coffee with some heavy cream, but if I do have something it'll usually be like eggs and bacon, that type of thing. Lunch, sandwich, usually skip though. A lot of days I will just eat a big meal for dinner. I just tend to feel better on one meal a day.

@user1 said:

Did the acid reflux start before you started taking baking soda? Did your symptoms/some of your symptoms worsen after you started taking baking soda?

The acid reflux has been around for 3 years or so, and I started the baking soda in water as a remedy for that. I wouldn't say the symptoms worsened. The symptoms were usually worse after eating certain foods, like tomato sauces. I would let my food digest for a few hours and then take some baking soda to knock the acid down.

Since I started taking the Pepcid AC as a histamine blocker, I have not had almost any acid reflux. Symptoms started improving after I started Pepcid AC and Zyrtec. I don't know if those are what started the turn around. I'm going to continue taking them though.

@user1 said:

When the symptoms started arround the 19th, did you spend lot of time in sunlight, if yes, was in one of the first days of the year you did?

I started sunning in May and continued into June. I use the DMinder app, so I know exactly the days I had a lot of time in the sun. Never anything crazy, usually 1 hour sessions. Before the symptoms got bad on the 19th, I had a 1 hour sun session on June 14th, the UV index was 6.7.

user1

@Hearthfire do you still get foods/liquids reflux, yet non acidic ? Foods sit in your stomach long?

Hearthfire

@user1

@user1 said:

do you still get foods/liquids reflux, yet non acidic

Nope.

@user1 said:

Foods sit in your stomach long?

I usually feel normal after an hour. If I eat a lot more than usual, like a big dinner for example, then it feels like it sits in the stomach longer. Like 2 hours. Not sure if that's too long, I never really thought about it.

Mossy

@Hearthfire said:

Does it take a while to build up the effect, or is it pretty instant results in your case? I tried about a teaspoon held on my tongue for a few minutes the other day. I didn't really have time to monitor any heart rate changes.

I've never used it as a preventative, which it seems like you may be doing. I've only used it for acute episodes of POTS, so the evidence that it is working is very clear, by reduced or eliminated tachycardia. Beyond that, if you're using the cayenne while not having tachycardia, I would say taking blood pressure and pulse may be the best indicators. I have to say, a teaspoon is quite a bit...haha. But, if it works for you. I could guess the most I've taken is probably a 1/4 tsp at a time.

Mossy

@Hearthfire said:

I have been doing stretches and exercises that target the psoas and the muscles that aggravate sciatica

I see value in moving and exercising, within reason. Glad to hear you're doing better.

Mossy

@LucH Thank you LuCH.

@LucH said:

The true origin of this breakdown lies in mitochondrial bio-energetic failure within the autonomic control centers, not just a simple lack of dietary nutrients. When the brainstem and hypothalamus lose the capacity to generate ATP, the autonomic nervous system defaults into chaos, manifesting as dysautonomia.

This is both interesting and intimidating.

@LucH said:

Core Breakdown Mechanisms (...)
To be continued if wanted (link).

If your time allows, please provide a link.

Hearthfire

@Mossy

@Mossy said:

I've only used it for acute episodes of POTS, so the evidence that it is working is very clear, by reduced or eliminated tachycardia.

When you say acute,, what heart rates are we talking? Mine was consistently 110-115 (or more, at least in the first month) just from standing up. It would jump 30-35 points.

@Mossy said:

I have to say, a teaspoon is quite a bit...haha. But, if it works for you. I could guess the most I've taken is probably a 1/4 tsp at a time.

Yeah I probably overdid it lol. It was spicy.

Mossy

@Hearthfire

@Hearthfire said:

When you say acute,, what heart rates are we talking? Mine was consistently 110-115 (or more, at least in the first month) just from standing up. It would jump 30-35 points.

I would say similar, at least 145 bpm, sometimes considerably higher. When my heart went to that rate, it requires my full attention. It feels like an emergency situation. My point being, it's an acute attack, not something where I can just go on as normal. I would place the cayenne pepper in my mouth and let it sit there until I can feel my rate coming down. Maybe 10 minutes or so. I don't recall exactly. Should it ever happen again, which I hope it never does, I'll time it. I haven't had an episode in a long time.

@Hearthfire said:

Yeah I probably overdid it lol. It was spicy.

Haha!

LucH

@Mossy said:

please provide a link.

Core breakdown mechanisms in mitochondrial bio-energetic failure, with help of AI, for the second part.

Context:
The true origin of this breakdown lies in mitochondrial bio-energetic failure within the autonomic control centers, not just a simple lack of dietary nutrients. When the brainstem and hypothalamus lose the capacity to generate ATP, the autonomic nervous system defaults into chaos, manifesting as dysautonomia.
MΩ asked for a further explanation (link) (on a health & nutrition forum)
https://bioenergetic.forum/post/65796
Here is the link to the subject with a full explanation
https://mirzoune-ciboulette.forumactif.org/t2214-english-cornerhow-to-apply-hd-thiamine-b1#30906
Excerpt 1
Why dysautonomia happens when active pathways are ineffective
Dysautonomia occurs when the body's automatic control centers fail to coordinate normal responses, driven primarily by low blood volume, faulty nerve signaling, and uncoordinated vascular feedback loops. When normal compensatory pathways are ineffective, the autonomic nervous system cannot properly balance heart rate, blood pressure, and blood flow. [1, 2, 3]
We aren’t focusing here on the consequences but the origin, not simply an excess of manufactured food (devitalized). Why 50 mg B1 with a complex form isn't functioning to solve the problem.
Excerpt 2

The Saturation Barrier (Why B1 Fails)
Impaired Signaling (The Real Origin)
 Faulty Communication: The core issue is not a simple nutritional deficiency.
 Miscommunication: The brain, nerves, and blood vessels fail to talk to each other correctly.
 Broken Signals: The physical wiring sends distorted messages, meaning the body cannot execute basic survival commands seamlessly. [1, 2]
Dysautonomia (The Control Failure)
 Broken Autopilot: Dysautonomia is a structural malfunction of the body's automatic control center.
 No Feedback Loop: The central nervous system cannot process real-time data from the body.
 System Chaos: Without an adequate feedback loop to adjust heart rate and blood pressure, the system defaults into permanent functional chaos. [1, 2]
Resulting System Failures
The body gets stuck in a constant "fight-or-flight" state to prevent fainting, which triggers extra fatigue and / or palpitations, stressing the metabolism and the body, inducing wastes, overdriven rhythms, lacks of recup (superficial sleep).

A strategy is required
How to Bypass This Failure. (…)
To be continued on my forum (above given link)
NB: With staples from the 2 videos made by Elliot Overton, explaining the metabolic block in details.
As the video are very long (2 hours), I gave the time code to listen to partial info to find back the targeted details. And from time to time, I add a personal comment, based on feedback (from users).

Request for AI
The 2 videos are based on the work from Elliot Overton (Nutritionist) and Dr. Antonello d’Oro (neurologist). But the link broken between the autonomous functions and the conscious ones is not put enough into the light. How could we put this better in the light? We’re not trying to explain the why from the how. Rather put into the light when there is a beginning of chained enzymatic reactions. And don’t put forward the genetic weakness from some individuals to explain the correlation…
PS: Don’t give the full explanation but rather an image when the body gets overburdened inducing a disconnection in the brain.
Repeated stress (from several sources: devitalized food + lack of cofactors + enzymes saturation) induces energy failing / falling. Fight and flight state + unrecovered periods induce more and more erratic responses and dysfunctions in coordination.

AI answers (Claude):
Here's an image that might work for what you're describing — the moment where the "automatic pilot" and the "conscious co-pilot" stop talking to each other, without invoking genetics or walking through the full biochemistry:
The image: a building on rationed power
Picture a building running on a generator that's smaller than the building actually needs. The building doesn't go dark all at once. There's an automatic triage system that decides, moment to moment, which circuits get power first.
The circuits that get priority are the ones tied to immediate survival: keeping the elevator from stopping mid-shaft, keeping the fire alarm wired, keeping the pumps that stop the basement from flooding running. These are the autonomic reflexes — heart rate, vasoconstriction, the baroreflex, the panic switch.
The circuits that get cut first are the ones that look non-essential in the short term but are actually what let the building run itself intelligently: the internal phone lines between the control room (brainstem/hypothalamus) and the upper floors (cortex, conscious awareness). Those communication lines are expensive to keep running and don't cause an immediate collapse if they go dark — so they're the first thing sacrificed when the generator is under sustained load.
The result isn't that the building "breaks." It's that the control room keeps improvising reflexive, isolated decisions — tightening a valve here, opening one there — without ever checking in with the floors above. The upper floors, meanwhile, feel the building trembling, hear alarms firing for no visible reason, and have no way to ask the control room "what's going on down there?" That's the disconnect: not a wire cut, but a phone line starved of the power it needs to stay live, precisely because it wasn't classified as urgent enough to protect.

Why this fits the "beginning of the chain" framing you asked for
The moment worth spotlighting isn't the failure itself — it's the triage decision. Long before any single reaction "breaks," there's a point where the system, under repeated load (devitalized fuel, missing cofactors, saturated enzymes), starts choosing to protect bare survival circuits over integration circuits. That choice is silent, reversible in principle, and repeats every time demand outpaces supply — which is why the fight-or-flight loop you described doesn't reset overnight. Each unrecovered cycle re-teaches the triage system the same priority order, and the phone line between "automatic" and "conscious" stays starved a little longer each time.
That framing keeps the focus where you wanted it — on the event of the link going dark under load, not on a mechanistic walk-through of which enzyme falters first, and without leaning on any claim about who's predisposed to it.

LucH says:
OK right, rather well-done. I'd have rather said, as a conclusion, that when the disconnection happens between the automatic system pilot and the conscious brain part, the failures aren’t well perceived (no alarm in the stairway) and the reaction comes on an unappropriated way (phone line disrupted or perturbed).

IA says:
That's a sharper ending, actually — it closes the loop instead of just describing the mechanism. Here's the conclusion folded in with your correction:

Revised ending
And this is where the real damage happens — not in the triage itself, but in what it does to perception and response. Because the phone line to the upper floors is starved, the building's occupants don't get a clear alarm when something's actually wrong. There's no bell in the stairway. A problem that would normally trigger a proportionate, well-timed response instead goes unnoticed until it's already severe — or triggers a response that's mistimed, oversized, or aimed at the wrong thing entirely, because the message that finally gets through arrived garbled.
That's the double failure: the automatic system reacts blindly, improvising without input from above — and the conscious system, when it does sense something, can't trust or properly interpret what little signal reaches it. Not silence and separate malfunction, but one disrupted line producing both problems at once.
That keeps your key point front and center: it's not two broken systems working badly in parallel, it's one starved connection causing both the missed warning and the mismatched reaction.

LucH says:
End of the talk. Good job.
Additional comment : Mind IA explanation.
Information needs to be cross-referenced with multiple sources; it isn't always reliable (irony).

Hearthfire

@Mossy said:

I would say similar, at least 145 bpm, sometimes considerably higher. When my heart went to that rate, it requires my full attention. It feels like an emergency situation. My point being, it's an acute attack, not something where I can just go on as normal. I would place the cayenne pepper in my mouth and let it sit there until I can feel my rate coming down. Maybe 10 minutes or so. I don't recall exactly. Should it ever happen again, which I hope it never does, I'll time it. I haven't had an episode in a long time.

Wow. Just from standing?

The most acute episodes I had were in the first 10-15 days. The worst was one morning while I was standing in the bathroom peeing and I was at 130-135. Felt absolutely horrible, like I was dying. I would normally have to do some sprints to get to 130.

I continue to improve in all health metrics though. The whole body "ill"/"dying"/"impending doom" feeling has been gone for about a month, resting and active heart rates continue to come down and I make new PRs every other day. The pain in my side/back/muscles has been mostly gone for a bit now, though I did have a little sore/pain feel in my side today, very faintly.

So, the cayenne trick is becoming less and less necessary. I will keep it in my back pocket if I have a high BPM attack.

For now the only thing I'm continuing is the Zyrtec and Pepcid AC, and I've been hydrating way more than usual, keeping my blood volume up. Those Liquid IV packets are a godsend. One of the best Costco purchases one could make. Great to have on hand for emergency illnesses.

Also continuing to improve my diet, been eating healthier, improved my sleep habits.

Working hard and doing lots of cardio the past week. Stuff I would not have been able to do a little over a month ago.

The thing I'm most thankful for is that the terrible insomnia is gone, I couldn't have taken much more of that. Absolutely horrendous experience that was. Body feeling like I was running from a horror villain all night.

I'm back to my normal self of being able to drift into sleep within minutes.