POTS patients- vaccine or no vaccine?

Posted by alih @alih, Aug 4, 2021

Hello, I have been advised that those of us with POTS can have autoimmune reactions to the COVID vaccines. Needless to say, after several years striking a tenuous health balance, I'm not anxious to an develop autoimmune condition / reaction. Does anyone with POTS who had either COVID or one of the vaccines care to comment about their experiences? Thank you in advance!

Interested in more discussions like this? Go to the Heart Rhythm Conditions group.

Hello,I’m John,I’m 70 yrs.old,I had implanted an pacemaker 3 yrs.ago,and I feel all the time my heart pumping,all the time I feel my heart working.
I’ve seen 3 cardiologists,I’ve done all the tests,all ok,but none of them could tell me why I feel the heart.
Please help !

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@alih welcome to Mayo Clinic Connect! You are now in the heart Rhythm Condition Group and COVID-19 so both issues can be addressed. There is a lot of research linked to COVID-19 and post POTS here https://www.webmd.com/lung/covid-19-pots#1 and here https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid19-and-pots-is-there-a-link
I haven't seen a lot about POTS and the vaccine itself.

@alih Have you seen articles on that subject?

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@ion

Hello,I’m John,I’m 70 yrs.old,I had implanted an pacemaker 3 yrs.ago,and I feel all the time my heart pumping,all the time I feel my heart working.
I’ve seen 3 cardiologists,I’ve done all the tests,all ok,but none of them could tell me why I feel the heart.
Please help !

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Hi @ion I also wanted to welcome you to Connect. You did post in Heart Rhythm Conditions, however you posted to @alih's post that talks about POTS and COVID-19. I thought you might like to check out a discussion about pacemakers that has been ongoing and perhaps post your circumstance there so we could get some members to respond to your predicament.
https://connect.mayoclinic.org/discussion/pacemaker-recipients/
Please tag me by typing @amandaburnett so I see your post and I can connect you with people who may lend some guidance during your journey here on Connect.

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Hello! Thanks for the reply. No, I have no information, other than anecdotal, namely an acquaintance with POTS who took the vaxx and after the second shot, ended up in hospital with an autoimmune reaction that rendered him intubated. He is out now but feeling ver ill and wishing he had never taken the shot. Looking for any firm data on autoimmune reactions to the shot.

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@alih

Hello! Thanks for the reply. No, I have no information, other than anecdotal, namely an acquaintance with POTS who took the vaxx and after the second shot, ended up in hospital with an autoimmune reaction that rendered him intubated. He is out now but feeling ver ill and wishing he had never taken the shot. Looking for any firm data on autoimmune reactions to the shot.

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Hello Ali,
Whenever people ask a question like this, with no clear answer, I look to the literature that is available.

As you can see above, Amanda sent links to articles about how people can get new or worsening POTS from a Covid infection. It is a common enough post-Covid occurrence that clinics and practices that treat "long Covid" patients have specific treatment protocols for it.

Reading of your acquaintance's unfortunate side effect from the vaccine, I looked to the VAERS data (Vaccine Adverse Event Reporting System https://wonder.cdc.gov/controller/datarequest/D8 ) where you can search for every reported instance of a side effect thought to be the result of the vaccine. Citizens can report if they wish, medical providers are mandated to report these events to VAERS.

Here is what I found:
434,000 events have been reported of the 350,000,000 doses of vaccine.
91 have mentioned POTS as the symptom
54 hospitalizations and 0 deaths were reported
1,000,000 people in the US have POTS

That means:
2 in 10,000 (.0002%) who have a reaction report POTS or 3 doses in one million (.000003%) result in a POTS reaction.
1,000,000 people have POTS in the US, about 3 people per 1000 (.003%) in the US have POTS, using the numbers, it's possible you would have a 1/1000 (.001%) chance of SOME reaction to the vaccine.
1/9 (11%) of people have gotten Covid.
I don't know how many people who actually reported POTS after a Covid infection, but to be part of the post-Covid rehab protocol, it would have to be significantly more than 90 people.

So I believe you can safely conclude that getting the vaccine is a lot safer than risking getting Covid, which tends to be more severe in people with underlying conditions.

I do not have POTS, but I do have underlying health conditions. I knew I had a high chance of inflammatory reaction to the vaccine, but chose to be vaccinated anyway. I got a severe reaction, was treated (in my case they used steroids to control it) and am now fine. I will get boosters as recommended and my other vaccines, even though I know I will probably react again, to protect myself, my little grandchildren, and help stop the spread.

Does this help you to make your decision?

Sue

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@sueinmn

Hello Ali,
Whenever people ask a question like this, with no clear answer, I look to the literature that is available.

As you can see above, Amanda sent links to articles about how people can get new or worsening POTS from a Covid infection. It is a common enough post-Covid occurrence that clinics and practices that treat "long Covid" patients have specific treatment protocols for it.

Reading of your acquaintance's unfortunate side effect from the vaccine, I looked to the VAERS data (Vaccine Adverse Event Reporting System https://wonder.cdc.gov/controller/datarequest/D8 ) where you can search for every reported instance of a side effect thought to be the result of the vaccine. Citizens can report if they wish, medical providers are mandated to report these events to VAERS.

Here is what I found:
434,000 events have been reported of the 350,000,000 doses of vaccine.
91 have mentioned POTS as the symptom
54 hospitalizations and 0 deaths were reported
1,000,000 people in the US have POTS

That means:
2 in 10,000 (.0002%) who have a reaction report POTS or 3 doses in one million (.000003%) result in a POTS reaction.
1,000,000 people have POTS in the US, about 3 people per 1000 (.003%) in the US have POTS, using the numbers, it's possible you would have a 1/1000 (.001%) chance of SOME reaction to the vaccine.
1/9 (11%) of people have gotten Covid.
I don't know how many people who actually reported POTS after a Covid infection, but to be part of the post-Covid rehab protocol, it would have to be significantly more than 90 people.

So I believe you can safely conclude that getting the vaccine is a lot safer than risking getting Covid, which tends to be more severe in people with underlying conditions.

I do not have POTS, but I do have underlying health conditions. I knew I had a high chance of inflammatory reaction to the vaccine, but chose to be vaccinated anyway. I got a severe reaction, was treated (in my case they used steroids to control it) and am now fine. I will get boosters as recommended and my other vaccines, even though I know I will probably react again, to protect myself, my little grandchildren, and help stop the spread.

Does this help you to make your decision?

Sue

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Hi Sue, thanks sop much for this. I probably wasn't clear- my concern is not developing POTS as a reaction ( I already have POTS). I am looking what reactions patients with POTS are having to covid and/or the vaccines. I have checked VAERS but there is no way to refine for reactions reported strictly by those with POTS as an underlying condition.

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@alih

Hi Sue, thanks sop much for this. I probably wasn't clear- my concern is not developing POTS as a reaction ( I already have POTS). I am looking what reactions patients with POTS are having to covid and/or the vaccines. I have checked VAERS but there is no way to refine for reactions reported strictly by those with POTS as an underlying condition.

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I agree that we don't have exact information. However, the VAERS report includes everyone who reported POTS as a vaccine reaction, whether or not they had POTS before.
So at most, 91 people who have had POTS could have had a medically reportable POTS reaction to the vaccine.
Does that make sense?

REPLY

Hi Sue, to be clear, I am not worried about developing POTS as a reaction to either the vaccine or COVID; I already have it. I am worried about NON POTS reactions in POTS patients.

REPLY
@sueinmn

Hello Ali,
Whenever people ask a question like this, with no clear answer, I look to the literature that is available.

As you can see above, Amanda sent links to articles about how people can get new or worsening POTS from a Covid infection. It is a common enough post-Covid occurrence that clinics and practices that treat "long Covid" patients have specific treatment protocols for it.

Reading of your acquaintance's unfortunate side effect from the vaccine, I looked to the VAERS data (Vaccine Adverse Event Reporting System https://wonder.cdc.gov/controller/datarequest/D8 ) where you can search for every reported instance of a side effect thought to be the result of the vaccine. Citizens can report if they wish, medical providers are mandated to report these events to VAERS.

Here is what I found:
434,000 events have been reported of the 350,000,000 doses of vaccine.
91 have mentioned POTS as the symptom
54 hospitalizations and 0 deaths were reported
1,000,000 people in the US have POTS

That means:
2 in 10,000 (.0002%) who have a reaction report POTS or 3 doses in one million (.000003%) result in a POTS reaction.
1,000,000 people have POTS in the US, about 3 people per 1000 (.003%) in the US have POTS, using the numbers, it's possible you would have a 1/1000 (.001%) chance of SOME reaction to the vaccine.
1/9 (11%) of people have gotten Covid.
I don't know how many people who actually reported POTS after a Covid infection, but to be part of the post-Covid rehab protocol, it would have to be significantly more than 90 people.

So I believe you can safely conclude that getting the vaccine is a lot safer than risking getting Covid, which tends to be more severe in people with underlying conditions.

I do not have POTS, but I do have underlying health conditions. I knew I had a high chance of inflammatory reaction to the vaccine, but chose to be vaccinated anyway. I got a severe reaction, was treated (in my case they used steroids to control it) and am now fine. I will get boosters as recommended and my other vaccines, even though I know I will probably react again, to protect myself, my little grandchildren, and help stop the spread.

Does this help you to make your decision?

Sue

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@sueinmn Thank you for your information. Please look at your calculations for percentages under “that means”. 2 out of 10,000 would be 0.02%, 3 in 1 million is 0.0003 % and so on.

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@avmcbellar

@sueinmn Thank you for your information. Please look at your calculations for percentages under “that means”. 2 out of 10,000 would be 0.02%, 3 in 1 million is 0.0003 % and so on.

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yor are correct. Sorry.

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@alih

Hi Sue, to be clear, I am not worried about developing POTS as a reaction to either the vaccine or COVID; I already have it. I am worried about NON POTS reactions in POTS patients.

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Sorry, I misunderstood your concern. I will look further to see if there is a way to tease this out of the VAERS data.
Sue

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@alih

Hi Sue, to be clear, I am not worried about developing POTS as a reaction to either the vaccine or COVID; I already have it. I am worried about NON POTS reactions in POTS patients.

Jump to this post

Hi Ali –
I looked and I looked – and I failed. There is no way to tease that information out of the VAERS data. People could self-report pre-existing conditions when getting the vaccine or making a VAERS report, but it is not required in VAERS. I am not sure where to direct you next, although your cardiologist might have access to current information in their medical journals.
Sue

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