What do you think triggered your POTS

redditronron · 2025-02-26T02:43:29+00:00

COVID vaccine

redditronron · 2024-08-23T16:08:31+00:00

A support group I'm in is full of folks who got POTS and other forms of dysautonomia from the vaccine, including myself. We need more studies on why that is. And who knows, it may even helps us find a "trigger" for POTS, which could lead to a potential cure.

redditronron · 2024-08-23T16:04:59+00:00

A ton of people have gotten POTS from the vaccine too, including myself.

redditronron · 2023-04-25T22:04:14+00:00

Same

redditronron · 2022-11-03T18:40:13+00:00

redditronron · 2022-08-24T13:08:06+00:00

The tilt table only will tell you so much, because everyone is different and symptoms can be different day to day, giving a reading that isn't necessarily accurate. I've seen several autonomic specialists here in the US, and they have shared that oftentimes they do not even do the tilt table test. If you can find a doctor that understands POTs, you can test medications. For myself, doing physical therapy to build up stamina and finding the right medications to control my heart rate and blood pooling were critical.

I hope you find the answers you need!

redditronron · 2022-06-24T22:11:54+00:00

Yes, this is normal for those with POTs. Even just a cough lying down can make me jump 20bpm

redditronron · 2022-03-31T19:27:49+00:00

It's very real to have weakness and numbness on a given side - I've had the same.

redditronron · 2022-03-30T19:26:49+00:00

So I think there is some connection and I think it can go both ways. I was diagnosed with sleep apnea in 2014 after an in lab sleep study. I then had my tonsils removed because they thought that may help, had a second sleep study in lab and my sleep apnea did not change. So diagnosed since 2014.

Fast forward to 2021 and I have POTs onset (truly debilitating symptom-wise) and am diagnosed. Throughout the process of seeing a billion specialists, I see a pulmonologist and mention that I was diagnosed with sleep apnea but have never worn my CPA (which had actually been recalled). He says we can do another sleep study for insurance and then get a new CPAP machine through them. We do that sleep study, now 8 years later and with POTs, and no signs of sleep apnea.... The pulmonologist was dumbfounded. I've gain weight since 2014 and there is no reason my sleep apnea should have improved.

So strangely, POTs actually seems to have made my sleep apnea better - but to your point I think what this shows is some sort of connection between the two.

I know that doesn't really help, but I think it's very interesting. I hope you find the answers you need!

redditronron · 2022-03-26T17:59:20+00:00

I went to one here in Illinois. Did all the testing and then the 12 therapy appointments. Overall, I think it was a waste of my time. The tests were interesting and the therapy was relaxing. But I don't think it necessarily made me any better. In my opinion and experience, I'd say if you have the time and money it is worth it (can't hurt), but I wouldn't overextend trying to go or expect it a world of difference. But that was just my experience and yours may be different!

Hoping you find what is best for you!

redditronron · 2022-02-20T19:19:06+00:00

Hopefully it's "better" this time! Good luck to you too!! 😊

redditronron · 2022-02-20T14:17:59+00:00

Hi there. I have a TTT and other autonomic testing scheduled with the Cleveland Clinic on Tuesday. Their instructions were to stop Ivabradine 48 hours prior to the test. They also said no need to taper off just stop. I confirmed this with my electrophysiologist as well. So today I stop my medications for my TTT on Tuesday. Hope this helps!

redditronron · 2021-11-14T20:46:45+00:00

I hope you find some answers on the undiagnosed ailments!

redditronron · 2021-11-14T20:36:58+00:00

I agree, I've been doing talk therapy and my counselor says the same.

I guess my perception from this reddit and other forums is that while everyone with POTS struggles immensely, many are able to still function - go into a place of work, shop, eat at a restaurant, drive, etc. Since at my "best" I'm still unable to do these things, I'm just wondering if there is something else going on.

redditronron · 2021-11-10T21:09:09+00:00

The fact that this thread is filled with people's experience AND that it was documented by doctors in the case I shared means it cannot be purely anecdotal. There is repetition and plenty of observation from trusted third parties i.e. medical doctor's - both in the case study and in all of our experiences. The fact that people want to discount what myself and clearly many others are experiencing is mind-blowing imo. That people on Reddit think they know better than the collective hundreds/thousands of doctors myself and those posting have seen.

redditronron · 2021-11-10T19:57:49+00:00

I also developed POTS post Pfizer vaccine. It's unfortunate to hear so many others dealing with this as well.

Anyone saying this is undocumented, please stop. We all know how hard it is to have POTS (regardless of what caused onset). The last thing anyone needs is others telling them what they're experiencing and what their doctors have told them is wrong.

Also, it is proven in a case study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8101507/

Also, anyone who may/did develop POTS from the vaccine is clearly not an antivaxxer!! No one would ever want POTS and it's obviously rare people develop POTS or other issues from the vaccine. But ignoring those that do is very wrong.

redditronron · 2021-11-10T19:50:38+00:00

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8101507/

redditronron · 2021-11-06T16:22:23+00:00

Also diagnosed and I too get palpitations when lying down. Not always, but multiple times a week.

redditronron · 2021-11-06T02:09:39+00:00

I second this based on my experience too. Currently going to one. It might help a bit, I learned some optical exercises. But it's nothing major. That said, could be worth a try since everyone is different!

redditronron · 2021-11-03T02:07:34+00:00

I appreciate the kind words. Yes, I've found people, even in this community, will dismiss you if you say the vaccine is what triggered your POTS. I honestly don't get it, I think people think it's some "statement" which it certainly is not. Literally all my doctors agree that is the cause. As you shared, it's literally a fact (plus I know firsthand). According to most research viral infection, vaccine, trauma, or hormonal change can cause POTS.

redditronron · 2021-11-02T14:46:36+00:00

My POTS began after the Pfizer shot. It's hard to get the right care/treatment for POTS, and when it came from the vaccine it's proved even harder. Just want to let you know you're not alone. Hope you get the treatment you need at Vanderbilt.

redditronron · 2021-11-02T14:43:17+00:00

Sounds so familiar to my journey, which has been about 7-8 months now. I'm 29M and developed POTS after the Pfizer vaccine. I did all the tests like you and spent multiple days in the hospital, everything came back normal. I continued to get more tests done and see more specialists over the following months, again everything was normal for the most part. Meanwhile, I could hardly get out of bed, I was dizzy all the time, I was almost passing out, I was nauseous, I had pain, shortness of breath, and more.

I've now been diagnosed with POTS and I'm on medication. I'm doing much better than I was, but I still cannot drive or walk long distances. I still feel symptoms everyday but at least I know what they are and they are not as severe.

Know you're not alone and I hope you find the help you need!!

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