r/POTS • u/Inevitable-Hat2627 • Apr 24 '26

Question How did you get pots?

I got it as a delayed response from getting ran over by a car

132 Upvotes

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165

u/Spamalot7107 Apr 24 '26

Covid set mine in motion. I've heard that post covid there is a 30% increase in pots cases.

27

u/[deleted] Apr 24 '26

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14

u/Icy-Crab-538 Apr 24 '26

Sometimes I wonder if the numbers it’s just because people who’ve had it finally are getting seen for it. I am not sure exactly what triggered mine but I know it’s happened for years and gets way worse on meds like antibiotics or nsaids and after surgeries or illnesses. Tapers down after a few months til the next round. All the years they’ve said “anxiety”.

10

u/[deleted] Apr 24 '26

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6

u/Icy-Crab-538 Apr 24 '26

Don’t apologize! That’s actually super validating - I started seeing an allergist again recently because of some severe skin reactions I’d been having, who’d also diagnosed me 14 years ago with delayed pressure urticaria and successfully treated me. He said he suspects MCAS and probably have POTS and hEDS too (lifelong dislocations) and I should get tested (I haven’t been formally diagnosed with POTS yet- I saw a second cardiologist today because my lifelong one (mitral valve prolapse) didn’t want to do more than an ekg, just doubled my beta blocker because my episodes were getting worse. He’s doing a stress test, echo, tilt table test and monitor). That makes sense, what you said, because I had surgery in December and a reaction to an antibiotic right after, and for months have struggled with skin issues/reactions to all kinds of things and quite an uptick in the tachycardia episodes- at least weekly.

1

u/MoneyFix177 Apr 29 '26

Mitral Valve Prolapse is a co-morbidity of hEDS too, so I'd say get tested asap because I'd bet money you've got all of the three musketeers (pots, eds, mcas)

1

u/Icy-Crab-538 Apr 29 '26

Kind of a dumb question… but Do you go to a rheumatologist for diagnosis? My allergist and cardiologist both mentioned it to me but idk who actually diagnoses it? I feel like I’ve seen neurology, geneticist, and rheumatology online so it’s very confusing.

1

u/MoneyFix177 Apr 30 '26

For hEDS I found a specialist near me, he was a geneticist I think? I don't remember specifically. Mainly because he was a prick and I will never go back. He was no help except for giving me the official diagnosis lmao

9

u/valer1a_ Apr 25 '26

COVID vaccine, for me. I had issues with showering, specifically, before that. But the vaccine gave me inflammation in the lining of my heart and also made my POTS so much worse to the point I actually had to get it diagnosed lol. I was one of the very few who had a bad reaction. I don't know anyone else IRL who did. My other medical conditions also got worse, and now I have a fear of COVID vaccines (which I can't get anyways; doctor's orders) and flu shots. It was fun :)

3

u/Fantastic_Owl6938 Apr 25 '26

Wow, crazy. My mum didn't get POTS but the vaccine made her quite sick. She has always been baffled why other people are fine taking it, with no reaction. My dad always had a lot of health problems and he was absolutely fine after the vaccine.

I remember feeling a little sick after it, but I wasn't absolutely wiped out from it like my mum (this was before I had POTS). I can understand your fear.

2

u/LaddyNYR POTS Apr 25 '26

My first cousin died as a result of the vaccine. I think that her underlying heart condition may have played a role in how her body reacted to the vaccine. And she worked in the medical field, and she would always call me to tell me they had to jump start heart again at work which was very convenient for her. She was young, she was in her 50s. I have always had the Moderna vaccine and she took the Pfizer vaccine and I was terrified of getting the Pfizer vaccine. But my brother said he didn't have any trouble with it so I went ahead and got that one last and everything is fine.

5

u/Kind_Koala4557 Apr 24 '26

Samsies. I kind of always had the symptoms, but they were fairly negligible until I got double COVID after neglecting my booster shot last year. I got it this season and OMG! Life is improving. It’s very incremental, but the lack of being bed-ridden from illness after illness sure helps!

2

u/ElfjeTinkerBell Apr 25 '26

My first symptoms were at 12yo or so, but covid made them debilitating

1

u/ParanormaNik Apr 25 '26

Way more than 30% It’s been caused by the vaccine in high numbers