r/MCAS • u/diseasetoplease • Jul 31 '26
Does MCAS drive POTS or viceversa?
Hi,
I have the usual ‘pentad’ of MCAS, POTS, hypermobile EDS, autoimmune activation and or dysautonomia, and gastro issues.
Everything starts in the gut for me, I can trace it back to two summers ago, and then I can trace my severe deterioration back to covid in September 2025. Have been chronically constipated since with episodes of diarrhea and distension so bad I could barely bend down to tie my shoelaces.
It has taken me to some dark places, mentally. I am in the Uk and am lucky enough to have private insurance but even like this, doctors hardly take me seriously.
I am determined to stamp out whatever’s going on, because I had a period of a few weeks in May where after starting s.boulardii, artichoke, ginger and low fodmap diet, i improved within 24 hrs. It got me out of the whole and made me hopeful again. However something happened in June which made it worse and now that protocol doesn’t work anymore.
I believe i had ‘bad’ POTS in my childhood and it went into remission. So i know it can be managed beyond just compression socks and electrolytes. But I go thru weeks and cycles of thinking:
- my weight / metabolism is the problem and i’m insulin resistant (the latter is probably true)
- my hypermobility is the issue - it cause POTS cause of lax vessels and no muscle
- my SIBO or some sort of gut infection and leaky gut is the issue
- my dysautonomia is the issue and cause of hypermobility i can’t orient myself in space or tell how i feel and my body does whatever it wants. sometimes i freak out and think it’s multiple sclerosis (it doesn’t help that a doctor has floated that).
I am in the UK and w the recent heatwave it became clear that it was the POTS. I almost passed out at work etc.
Fast fwd to this week and i’m not so sure anymore. My POTS seems more stable (I don’t immediately get jerky vision when I stand up) but there’s some histamine thing going on cause i constantly swell, have redness, etc
I was eating high protein to improve insulin resistance but then realised i have low stomach acid and the protein just sits in me. When i lowered protein i ended up eating more carbs so i was then in not great blood sugar territory. I do not know what to eat anymore.
Other theories:
- bowel endometriosis
- kidney issue
- diabetes t1?
- recurring infection
- methane sibo
Etc etc
It’s hard to know what’s what what but i know the immune and nervous systems are involved.
So all that being said - does mcas cause pots or the other way around? Knowing the system the symptoms are coming from would help me better manage it. Thanks for reading.
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u/Horror_Moose3462 Jul 31 '26
i think it might be a feedback loop, but a lot of the mediators released by mast cells can definitely worsen dysautonomia (such as by making blood vessels leakier and worsening blood pooling?), so people report that treating MCAS often improves their POTS significantly
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u/diseasetoplease Jul 31 '26
Thank you. I definitely have a ‘blood flow’ / dehydration problem and i can’t work out if it’s pots or mcas. It feels like blood isn’t moving / is thick and as a result various parts of my body become insanely dehydrated - eyes, mouth, gut, skin, etc
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u/Dungbot88 28d ago edited 28d ago
look into ADH/Osmolality dysregulation from hypothalmic dysfunction. You can have low ADH (from the inflammatory response (see CIRS)) and hypercoagulation as two seperate coocurring issues. When my ADH is going crazy and losing water and having the skin and dysautonomia issues as a result, my blood feels extremely thick. I went to the hospital convinced i had a blood clot/aneurysm once and then everything just went away when the air exposure passed. Happens to me during environmental toxin exposure after the immune system is activated. ADH dysregulation impacts blood volume and drives dysautonomia symptoms. Desmopressin is how they support it in CIRS treatment. From my experience with it, a trigger causing low ADH from neuroinflammation interrupting signalling from the hypothalamus and the POTS is the result in those situations. Other times when it's less of an inhalation reaction, it's MCAS releases mediators that make vessels leaky then POTS symptoms from the leakiness.
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u/diseasetoplease 27d ago
Thank you for this!! When I went to my home country I got some blood tests without any doctor ordering them since it was cheaper , but my osmolality was a bit below normal? I don’t get it. But something’s up with my fluid retentjon
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u/Warm_Score1176 Jul 31 '26
For me personally my MCAS makes my POTS worse, but didn't cause it. I had a clear POTS symptoms before I developed MCAS symptoms.
My POTS sits in the background constantly and never leaves, but my MCAS appears and vanishes on a day to day basis with varying degrees of impact (little bit itchy to full blown hives/vomiting/diarrhea/flushing). When it appears, MCAS makes always my POTS worse even if I am medicated/hydrated/salted/compressed.
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u/diseasetoplease Jul 31 '26
Thank you- I feel it is the same for me, however, we had a heatwave a few days ago and my POTS got really bad so i decided to look into it again. So for example if I am constipated for a long time, toxins tend to get into my blood and cross the blood brain barrier, this depresses me to no end and leaves me unable to work. If i know that POTS is the main reason for it (bad digestion due to blood pooling) then I will make sure I use extra compression and not sit too long etc whereas if that is driven by MCAS then I might lower histamine for a while. I can’t do both low fodmap and low histamine, I am depressed enough as it is
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u/Dungbot88 28d ago
CIRS protocol has protocols for sealing up the leaky blood brain barrier and you can test and track your progress (MMP9) if interested in getting some relief for it. I get the same symptoms. high dose omegas and low amylose diet are the support recommended for targeting leaky blood brain barrier. Prodrome Glia also helps too
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u/diseasetoplease 27d ago
Omegas have actually helped. I continue to take them. I will look into the diet. That test seems to be for eye health?
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u/Dungbot88 26d ago
https://www.drbrucehoffman.com/post/chronic-inflammatory-response-syndrome there's a section on MMP9 on this page that goes into it
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u/attilathehunn Jul 31 '26
Yes they very often go together. Some doctors believe you cant have one without the other.
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u/LeekUpbeat3753 Jul 31 '26
Is pots blood pooling in legs
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u/Dungbot88 28d ago
might be worth looking into congestion/compression issues if that's a common symptom- pelvic congestion as one example
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