Anyone here diagnosed with POTS/MCAS/Dysautonomia?

Hearthfire

Yeah, sounds like the exact same thing. Did you also have the terrible body feeling? It's hard to describe. Not really like being sick, just this terrible feeling, like at the worst of it I couldn't shake the feeling I was dying. That's what it felt like. And maybe I was having the "impending doom" sensation. I couldn't ever feel comfortable, weird muscle burning/pain sensation constantly in certain areas like my upper left back.

@maplesyrupbro said:

I think this may come down to a mold colonization in our guts and mast cell activation issue. My current approach is to try and shift my gut bacteria to a healthier balance with fibers, PHGG, the Thorne fibremend product, sodium butyrate.

Yeah I had the same suspicion, mold causing mast cell activation. I started taking a fiber drink supplement to hopefully shift my gut health for the better, made me more regular and I think probably contributed to turning things around for me. I'll check out those products you mentioned.

@maplesyrupbro said:

If it's bad for you in the morning I would suggest drinking a bunch of BodyArmour or Gatorade upon waking, it helped me calm the adrenaline along with taking a PEA and maybe one drop of cypro

I take a Liquid IV packet in 16 oz of water. It's helped a lot.

@maplesyrupbro said:

I also have had months of gut issues, bloating, gas, etc. I think the root cause is mold. You can try taking binders like charcoal, Mycobind, Cholestyramine(available from Mexican pharmacy online), bentonite clay. Good luck man

Yeah it definitely could be the root cause. I will check these out also. I had heard good things a while back about bentonite clay and how it cleared up all sorts of issues for people. I'll try either that or the charcoal. Maybe both.

Thank you so much for all your input, and I'm really sorry you went through this. I wouldn't wish this on anyone. Worst experience in my life.

Mossy

I've had self-diagnosed POTS for about a 5-7 year period, but have not had an episode in over a year. I searched it out by the specific symptoms, and was both surprised and semi-relieved to see that it is a thing. When I would go from a low to a standing position I would get tachycardia. It freaked me out at first. The short answer, I feel, is that it's a by-product of a stress-burdened body; often associated with hypothyroidism, poor digestion, adrenal fatigue, chronic fatigue, etc. Much of what Peat talks about. @luch , on this forum, mentions the vagus nerve, which I feel is a dysautonomia connection, which is just another part of the over-arching symptoms of a sub-par, chronically stressed body. All that you've mentioned I've experienced. For acute POTS episodes, nothing works better for me than cayenne pepper. I have NOW brand, supplemental cayenne on hand. I haven't had an episode in well over a year, but when I did, I'd open a capsule and place a decent amount on my tongue and hold it there, letting it take effect. I used to do that mixed with taurine and magnesium, as @CrumblingCookie suggests for cardiac excitation, but being that I'm very sensitive to supplements, the taurine and magnesium would have lasting, negative effects. The cayenne had the least of these, and most importantly, it worked the fastest, for acute POTS. If my symptoms were beyond just racing heart, tachycardia, but hyper-vigilance, restlessness, insomnia, and anxiety, I would take taurine. Nothing has worked better than taurine for me for that. But, you'll have to see what works for you. Magnesium used to work at times as well; and sometimes lysine. But my go-to used to be taurine.

These were my solutions for acute attacks. These helped me on the short term, but ultimately my greatest solutions were for the mind and spirit, to reduce the stress and anxiety.

Hearthfire

@Mossy

Thank you so much for the post Mossy. I'm sorry you went through that. Happy for you that you seem to have got it under control now for the most part. It gives me comfort to know that I'm not alone in this, and more importantly that I could get it under control to be able to live life without suffering.

@Mossy said:

The short answer, I feel, is that it's a by-product of a stress-burdened body; often associated with hypothyroidism, poor digestion, adrenal fatigue, chronic fatigue, etc.

That sounds like me for most of my life.

That said, as I mentioned in my last post, I have been improving overall. My base resting heart rates while sitting and standing have dropped, which while still high for me compared to where I was at the beginning of June, it's a vast improvement from June 19th and the 5 days that followed. My heartrates while doing work, working out, and walking have improved as well, and I would attribute my walks every day to helping improve the heart rates.

Still having some off days, but nowhere near as bad as when it started. Still having weird back/hip/glute/lower back/side pain that I'm not sure of the cause of. It's like muscle soreness/tightness.

@Mossy said:

For acute POTS episodes, nothing works better for me than cayenne pepper. I have NOW brand, supplemental cayenne on hand. I haven't had an episode in well over a year, but when I did, I'd open a capsule and place a decent amount on my tongue and hold it there, letting it take effect.

Very interesting. What is it about cayenne specifically that's calming the symptoms in your case? I've heard about cayenne before as a remedy for lots of things. Google search says it helps relax blood vessels, encouraging better blood flow. It also says capsaicin is approved by the FDA for nerve pain. VERY interesting. Don't know about your specific situation, but I suspect a sciatic nerve problem in my right side (from an old injury) might be exacerbating my POTS symptoms if not exactly causing it, and maybe the weird muscle pain

Ok, definitely trying the cayenne.

I was using taurine for sleep when I was having the bad insomnia, and it helped get me through that 2 week period, along with melatonin, magnesium glycinate, and chamomile + lavender tea. I am back to pretty much 100% on the sleep side. I can fall asleep within a few minutes, as was always the norm for me.

maplesyrupbro

@Hearthfire I did get the impending doom feeling but I did not get the body aches. This may be a fluke but I decided to take a course of Nitazoxanide which is an antiparasitc drug, and after that the heart palpitations seemed to calm down a lot. Not sure why but so far it worked. I also mega dosed magnesium for a few days and it calmed me a lot.

Mossy

@Hearthfire You're welcome, Hearthfire. Thank you for your kind thoughts. And I'm glad you're improving overall. Excellent idea to walk every day, which motivates me to do the same.

I think the cayenne pepper simply regulates the heart and proper pumping of blood. On the supplement bottle it reads "VASCULAR HEALTH". I originally got the idea, years ago, from a defunct alternative health website, who recommended it for heart issues.

I'm one of the least scientific on this forum, so I can't offer up any astute, technical reasons for why I was having POTS, but 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. Which may or may not correlate to the sciatica nerve:

"The vagus nerve is the longest cranial nerve and a key part of the parasympathetic nervous system, influencing digestion, heart rate, and other involuntary functions, while sciatica is pain caused by compression or irritation of the sciatic nerve in the lower back and legs. Some research explores vagus nerve stimulation as a complementary therapy for managing sciatica-related pain by interrupting pain signals."

P.S. I used to work long hours at the computer. Maybe that was a factor.

Hearthfire

@Mossy

@Mossy said:

I think the cayenne pepper simply regulates the heart and proper pumping of blood. On the supplement bottle it reads "VASCULAR HEALTH". I originally got the idea, years ago, from a defunct alternative health website, who recommended it for heart issues.

Gotcha. 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 did have a pretty normal day after though, so maybe it helped. I will have to further experiment, and try to do it every day.

@Mossy said:

I'm one of the least scientific on this forum, so I can't offer up any astute, technical reasons for why I was having POTS, but 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. Which may or may not correlate to the sciatica nerve:

The vagus nerve is the longest cranial nerve and a key part of the parasympathetic nervous system, influencing digestion, heart rate, and other involuntary functions, while sciatica is pain caused by compression or irritation of the sciatic nerve in the lower back and legs. Some research explores vagus nerve stimulation as a complementary therapy for managing sciatica-related pain by interrupting pain signals.

Yeah, I'm not very scientific either. I wish I knew more to understand all this. Its very confusing.

The nerve angle is definitely an interesting one, and yeah I don't know if the sciatic nerve is contributing, but I do know that the area with my old injury was super inflamed and painful when this started. As I said in an earlier post, I have been doing stretches and exercises that target the psoas and the muscles that aggravate sciatica (glutes etc), psoas pain is pretty much gone, sciatica symptoms have abated (not totally gone).

Yesterday I had one of my best days yet. I felt almost 100% like my old self. I felt NORMAL. It felt so amazing. Heart rates were very good too. I did sprints while walking and had to push to get my heart rate to 130. Huge progress. Resting heart rate has been going into the 60's while sitting (before it would never go below 80's while sitting).

Today going good so far.

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.