Anyone here diagnosed with POTS/MCAS/Dysautonomia?

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.

Mossy

@LucH Thank you. I'll explore this information.

@LucH said:

The true origin of this breakdown lies in mitochondrial bio-energetic failure...not just a simple lack of dietary nutrients. When the brainstem and hypothalamus lose the capacity to generate ATP...

This seems like the kind of problem that inspired Peat and his perspectives.

P.S. I like the image of the building AI provided for you. Adds a good visual.

Mossy

@Hearthfire Yes, just from standing. Which from my understanding is the very definition of POTS (postural orthostatic tachycardia syndrome): tachycardia being triggered by moving into an upright position. Orthostatic being "of, relating to, or caused by an upright posture".

When my heart rate shot to135+pbm, I would feel an instantaneous and jarring shift in gears, so to speak, which is when I'd take the cayenne. I never took the cayenne as a preventative. Maybe I should've tried it.

That is great that you're improving. And for sure insomnia is horrible. That is awesome that you're not having trouble with that. I feel getting good sleep is one of the best steps toward better health.

Hearthfire

@Mossy said:

Yes, just from standing. Which from my understanding is the very definition of POTS (postural orthostatic tachycardia syndrome): tachycardia being triggered by moving into an upright position. Orthostatic being "of, relating to, or caused by an upright posture".

I imagine 145 bpm was pretty scary. 130-135 freaked me out. Luckily that only happened once.

@Mossy said:

That is great that you're improving. And for sure insomnia is horrible. That is awesome that you're not having trouble with that. I feel getting good sleep is one of the best steps toward better health.

Yes, I've actually been sleeping a lot more than normal. Dreaming a lot as well. I'm hoping that's a sign that my body is catching up on needed rest and repairing anything that needs to be healed.

jd_au

Thiamine and thyroid bring my POTS under control.

LucH

@jd_au said:

Thiamine and thyroid bring my POTS under control.

Fine, but you forget to mention which cofactors you've taken. Otherwise, it won't last ...

jd_au

@LucH but it has lasted. For years.

jd_au

BTW I asked Ray once about POTS. He said it's usually the result of smoothed out blood vessels in the legs, requiring more blood to pass through and therefore the heart to beat faster. And he said the cause of that is excess estrogen. And he said the usual cause of that is low thyroid.

Keep it simple folks.

LucH

@jd_au said:

Keep it simple folks.

Still fine for you. However, when taking HD B1, there is a protocol to follow. In short, there is interaction between several vitamins and trace elements.
I then asked AI to help clarify the why and the how for other readers.
AI says, as if LucH were speaking to JD:
Glad it has lasted for you, JD! That is fantastic personal success, and it actually makes perfect sense given the specific combination you used.
When you take thyroid hormone alongside thiamine, you are directly addressing the systemic metabolic bottleneck. In the bioenergetic framework Dr. Ray Peat talked about, low thyroid impairs the liver's ability to clear excess estrogen. High estrogen triggers nitric oxide, which over-relaxes (smoothes out) the blood vessels in the lower extremities, causing blood to pool and forcing the heart to beat faster to compensate (POTS). By taking thyroid and thiamine together, you restored cellular energy and vascular tone simultaneously, which is why your results have been so stable.
However, for other readers looking to replicate this, it is crucial to understand why standalone High-Dose Thiamine (HD B1) protocols usually require cofactors. Skipping them can cause issues for the average person due to several factors:

Magnesium is Mandatory: Thiamine cannot be converted into its active, usable form (thiamine pyrophosphate) without magnesium. Mega-dosing B1 alone rapidly depletes magnesium stores. This frequently triggers severe muscle cramps, anxiety, and heart palpitations, which people often mistake for a worsening of their POTS.
The "Paradoxical Reaction": High doses of B1 can kickstart dormant mitochondrial pathways so suddenly that it causes a temporary, severe flare-up of autonomic symptoms. Adequate magnesium, potassium, and baseline nutrition help buffer this transition and prevent a metabolic shock.
B-Complex Imbalance: Flooding the system with massive doses of a single B vitamin can eventually create a functional deficiency in other B vitamins (like B2 and B3) that share the same cellular energy pathways.

In short, JD's success is a great example of the bioenergetic approach working perfectly because the underlying thyroid and estrogen pieces were addressed. But for most people starting a high-dose thiamine protocol on its own, skipping cofactors like magnesium is a frequent cause of metabolic stalls or severe symptom regressions. Keep it simple, but keep the underlying biochemistry in mind!

jd_au

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