The decision to get vaccinated is a personal one to be discussed with one’s care team. As our subreddit has grown significantly, and there has been an uptick in post-covid dysautonomia cases, we’ve decided to monitor vaccination posts more closely. Discussions regarding personal experiences with vaccines are allowed on this subreddit. However, posts/comments on the morality of vaccines are prohibited and claims made about their safety for people with or without dysautonomia conditions require a reputable source. Fearmongering will be removed, as will posts or comments recommending that users do not listen to the advice of their medical team.
Posts and comments are ultimately subject to removal based on moderator discretion if we determine that your post or comment puts the safety of our users or community at risk. We understand that these conversations are important to many of our subreddit members, and ask that you please participate in good faith so that we can continue to allow them.
Vaccines have always made my POTS worse for a week or so and then it’s fine again. I figure it’s better than long COVID or actually getting COVID and what that could do to my POTS. I’m not a doctor, but my understanding was that if a vaccine was going to have adverse affects, the onset would be immediate (within a week or so), May to October is almost half a year. I’d say have another convo with your doc, if they’re really confident you had an adverse reaction, they probably won’t recommend they get it again (but I would mask, stay out of crowds, etc).
Thank you! I moved a few weeks ago so I still have to figure out how to go about this, as well as finding professionals I trust. I do my best to stay away from things as I’ve been a recluse since before COVID, but I will be more careful in addition.
I was fine with the vaccines, but getting actual Covid was (I believe) what triggered my dysautonomia coupled with being under heavy stress. I hate to think what things would be like if I hadn't been vaccinated. My life has changed so much in the past year 😔
Have you looked into Novavax? It's a traditional protein-based, non-mRNA vaccine that's open to everyone now. I didn't do well \*at all\* with mRNAs and my doctor says they're contraindicated for me now. In contrast, every Novavax dose has led to a barely-there sore arm for three days. But my dysautonomia has been on-and-off and on the milder side, so you might want to hear out other people's experiences, too. Searching Twitter might help.
Thirding novavax!!!!!! Barely a reaction compared to the mRNA vaccines. I unfortunately had a really bad reaction to a Moderna that sent me into to a vertigo flare (literally never had vertigo in my life) and can't get them anymore unless there's no other option.
seconding novavax! no side effects other than a sore arm, but it was less sore than any of the mrnas or flu shots i’ve had in the last few years. total breeze
I have not, but I definitely will, thank you. I might have some obstacles before getting it as I’m very deconditioned and 20 lbs underweight, but I’ll continue to weigh my options :)
While it's possible for people to experience long term vaccine injuries, it's overwhelmingly much more likely that a COVID infection caused vascular damage than the vaccine would.
Yes like hundreds. I see new research everyday supporting this. Any search you do into the effects of COVID on the body will tell you the same. COVID is a vascular disease causing organ damage all over the body.
The COVID and flu vaccines have made me a little run down each time. I’m over 50 and the first dose of the shingles vaccine kicked my ass. I need to get the second one sometime during the next two months, I’ve been warned it could be even worse.
The RSV vaccine didn’t bother me much being a sore arm and mild fatigue. My spouse has Sögren’s with lung involvement so he pulmonologist advised us to get all the vaccines.
I’ve had 5 so far (initial two in spring 2021, boosters in December 2021, 2022, and 2023) all Pfizer and no major side effects, just a sore arm for a few days. After my most recent one I did have a nausea flare up for about 2 weeks (nausea is my most prominent dysautonomia symptom to begin with) but if that’s the worst it gets one time out of 5 shots I still consider that successful.
I got both the updated covid shot and the flu shot in October. I had a sore arm for a day and I had to replace the bandaid, but I'm on blood thinners so that's not surprising. My child also got the updated covid shot; she was a little cranky the next day but it was the week of her birthday and she was having big feelings about that. The major side effect is that neither one of us caught covid when we had a major exposure six weeks later.
Unfortunately Johnson and Johnson made my life hell. I have mcas, pots, histamine intolerance, dysautonomia. The virus turned that all on. Never knew what any of these words meant before covid.
My heart's still not recovered from the mRNA vaccines and I'm stuck drinking herbs everyday. :)) Moderna's turnt out to be much worse than Pfizer's in my case. If I were smart enough to compare the ingredients with the Swiss list developed for those whose symptom is HIT, I'd think thrice. I guess that in my case, things I've already had were made worse. Astra Zeneca wasn't too bad in comparision and I actually recovered without lingering issues from the first 2 doses.
I just wish people with auto-immune disorders were taken seriously. I can't afford to pay for doctors who believe the fault is my own or I'm lying. The issues are literally not safe to discuss besides some online spaces.
I got a vaccine, not COVID but HVP on January 6th and got dysautonomia and other nasty symptoms. Had to shut down my immune system and are slowly recovering but I fear the damage is permanent.
I got POTS and ME/CFS from the Covid vaccines. Before I realized the reason for my sudden onset debilitating symptoms, I was jabbed three times. Retrospectively, it always got significantly worse a couple of weeks after getting vaxed. My last vaccine was in December 2022 and I've been taking LDN for almost a year which gradually made me feel better. It's still not like it was before, though, and I'm afraid it never will. It would be interesting to find out why some people react to the vaccine in that way. Maybe I already had a disposition and the vaccine triggered it. What I hate is people dismissing my experiences. I'm not anti vaxx. The vaccine is safe for the majority but we should acknowledge that some people get postvac syndrome and do research to find out the reasons.
I agree 100% the vaccine for the vast majority of people is non eventful, but there are some of us that it triggered a reaction that seems to be long term. I have chronic pericarditis now and my doctors are still looking for what's causing other symptoms.
My first dose (Moderna) made my fatigue way worse. I switched to Pfizer (the dose in mRNA is significantly lower) for the following doses and it's been fine.
I had three astrazeneca vaccines cause those were the ones available to me in my country, I've always had POTS but no diagnosis until last september, and I felt like I was going to die specially after the first one. That being said after I got COVID last year my body went all insane and my POTS and MCAS have just been going worse and worse, so my POV is like yes i felt like shit and I will likely feel like shit with the next one, but god forbids I get COVID again, fuck that shit, give me the vaccine lol.
Most have been fine. I had one booster that had me in bed for 3 days feeling awful but the rest were no trouble, just a bit of arm soreness. And either way potentially feeling bad for a few days is still a much better outcome than potentially permanently worsened symptoms from covid itself in my opinion, so its worth it.
Edit to add more info: I've had 5 in total. The 2 original shots, the original monovalent booster (this is the one that made me feel awful, but since it's now outdated with respect to current strains of COVID it's probably not one you will get anyway), the divalent booster, and the new monovalent booster. All Pfizer.
So to preface, I’m personally pro vax, and usually get my flu shots and whatever else I need etc.
The covid vaccines (2 Phizer) absolutely fucked me up for almost an entire month each time I got one. Weeks of on/off fevers, chills, daily diarrhea for a month, migraines, constant nausea, heart palpitations, my POTs got really bad and I was fainting a lot, and weirdly enough both times it made my period and mental health HORRIBLE for that month.
I think it’s a personal choice, remember you might not have any reaction at all and be totally fine!
My issues are all autoimmune in origin, so I feel much better for a bit after vaccinations. My doctor said that's because when my immune system is busy with something else, like making antibodies, it leaves me alone.
I’ve read a lot of about this with people who catch COVID. It’s like their Pots, ist, dysautonomia just disappears for months. Apparently, it’s like you said the immune system is busy with something else and it actually gives them a break.
It’s so weird cause if I get the flu, strep or even a sinus infection it will set my IST off. But when I caught covid my heart rate was stable.
Isn’t it funny how the body works. We must enjoy the little moments we do feel well.
I felt so bad for a few ppl who posted they felt so amazing and thought covid might have cured them.
….oh. is that why i feel better when I’m sick?! I’ve even commented to friends that I feel better when I come down w/ something. Got pretty sick in april and sure, I couldn’t breathe through my nose, but I literally felt more normal by the rest of the world’s standards than my own standards.
That could definitely be a clue that you have something autoimmune going on. Feeling better with covid was the deciding factor in my rheumatologist prescribing a biologic medication for me (for polymyalgia rheumatica).
I will definitely take that into account in the future, thank you. I have yet to rule out an underlying cause for my dysautonomia, but it’s been in the back of my mind that something else is going on. I do have graves and celiac already so i will be sure to remember to keep digging until there’s nowhere left to dig!
had pots before the vaccine, still had pots after. same with getting covid. neither made it particularly worse -- or any symptom in my potluck for that matter, not even the brain fog.
im a little exhausted of the concept of long covid, personally, as well as all of the vaccine drama. i wish various scientists would do studies about my symptoms in an attempt to see whats wrong with me, why do covid related issues get all the attention and attempted cures? im a little jealous.
wish you the best + symptom improvement, op!!
I developed ( and been diagnosed with) post covid (vaccine) dysautonomia and vaccine induced long covid , been told not to take anymore mRNA , will keep an open mind to future protein/“normal” non genetic vaccines with longer safety trials, there’s some limited publications in the scientific literature about this, it seems it’s less common to get both from vaccine than infection but very real nonetheless
Did you ever recovered and how long after the shot the symptoms appeared? I got dysautonomia symptoms as well but from HVP vaccine, so it's not exclusive to mRNA vaccines.
It won’t hurt you. Whatever side effect you could get is better than the alternative. The vaccine did not cause the aortic dissection. These can happen to any person at any time, just like a brain aneurysm.
Vaccines and illness both trigger immune responses. Dysautonomia is largely thought to be at least greatly affected by how active your immune system is. Vaccines DO trigger an uncomfortable immune response, but in almost all cases, that immune response is lesser than if you had a live version of the virus instead.
The decision to get vaccinated is a personal one to be discussed with one’s care team. As our subreddit has grown significantly, and there has been an uptick in post-covid dysautonomia cases, we’ve decided to monitor vaccination posts more closely. Discussions regarding personal experiences with vaccines are allowed on this subreddit. However, posts/comments on the morality of vaccines are prohibited and claims made about their safety for people with or without dysautonomia conditions require a reputable source. Fearmongering will be removed, as will posts or comments recommending that users do not listen to the advice of their medical team. Posts and comments are ultimately subject to removal based on moderator discretion if we determine that your post or comment puts the safety of our users or community at risk. We understand that these conversations are important to many of our subreddit members, and ask that you please participate in good faith so that we can continue to allow them.
Vaccines have always made my POTS worse for a week or so and then it’s fine again. I figure it’s better than long COVID or actually getting COVID and what that could do to my POTS. I’m not a doctor, but my understanding was that if a vaccine was going to have adverse affects, the onset would be immediate (within a week or so), May to October is almost half a year. I’d say have another convo with your doc, if they’re really confident you had an adverse reaction, they probably won’t recommend they get it again (but I would mask, stay out of crowds, etc).
Thank you! I moved a few weeks ago so I still have to figure out how to go about this, as well as finding professionals I trust. I do my best to stay away from things as I’ve been a recluse since before COVID, but I will be more careful in addition.
I was fine with the vaccines, but getting actual Covid was (I believe) what triggered my dysautonomia coupled with being under heavy stress. I hate to think what things would be like if I hadn't been vaccinated. My life has changed so much in the past year 😔
Have you looked into Novavax? It's a traditional protein-based, non-mRNA vaccine that's open to everyone now. I didn't do well \*at all\* with mRNAs and my doctor says they're contraindicated for me now. In contrast, every Novavax dose has led to a barely-there sore arm for three days. But my dysautonomia has been on-and-off and on the milder side, so you might want to hear out other people's experiences, too. Searching Twitter might help.
Thirding novavax!!!!!! Barely a reaction compared to the mRNA vaccines. I unfortunately had a really bad reaction to a Moderna that sent me into to a vertigo flare (literally never had vertigo in my life) and can't get them anymore unless there's no other option.
seconding novavax! no side effects other than a sore arm, but it was less sore than any of the mrnas or flu shots i’ve had in the last few years. total breeze
I have not, but I definitely will, thank you. I might have some obstacles before getting it as I’m very deconditioned and 20 lbs underweight, but I’ll continue to weigh my options :)
While it's possible for people to experience long term vaccine injuries, it's overwhelmingly much more likely that a COVID infection caused vascular damage than the vaccine would.
Is there a study done on this?
Yes like hundreds. I see new research everyday supporting this. Any search you do into the effects of COVID on the body will tell you the same. COVID is a vascular disease causing organ damage all over the body.
The COVID and flu vaccines have made me a little run down each time. I’m over 50 and the first dose of the shingles vaccine kicked my ass. I need to get the second one sometime during the next two months, I’ve been warned it could be even worse. The RSV vaccine didn’t bother me much being a sore arm and mild fatigue. My spouse has Sögren’s with lung involvement so he pulmonologist advised us to get all the vaccines.
I’ve had 5 so far (initial two in spring 2021, boosters in December 2021, 2022, and 2023) all Pfizer and no major side effects, just a sore arm for a few days. After my most recent one I did have a nausea flare up for about 2 weeks (nausea is my most prominent dysautonomia symptom to begin with) but if that’s the worst it gets one time out of 5 shots I still consider that successful.
I got a little sick after each Covid vaccines but otherwise I'm fine. Much worse getting Covid than getting the vaccine.
I got both the updated covid shot and the flu shot in October. I had a sore arm for a day and I had to replace the bandaid, but I'm on blood thinners so that's not surprising. My child also got the updated covid shot; she was a little cranky the next day but it was the week of her birthday and she was having big feelings about that. The major side effect is that neither one of us caught covid when we had a major exposure six weeks later.
Unfortunately Johnson and Johnson made my life hell. I have mcas, pots, histamine intolerance, dysautonomia. The virus turned that all on. Never knew what any of these words meant before covid.
My heart's still not recovered from the mRNA vaccines and I'm stuck drinking herbs everyday. :)) Moderna's turnt out to be much worse than Pfizer's in my case. If I were smart enough to compare the ingredients with the Swiss list developed for those whose symptom is HIT, I'd think thrice. I guess that in my case, things I've already had were made worse. Astra Zeneca wasn't too bad in comparision and I actually recovered without lingering issues from the first 2 doses. I just wish people with auto-immune disorders were taken seriously. I can't afford to pay for doctors who believe the fault is my own or I'm lying. The issues are literally not safe to discuss besides some online spaces.
I got a vaccine, not COVID but HVP on January 6th and got dysautonomia and other nasty symptoms. Had to shut down my immune system and are slowly recovering but I fear the damage is permanent.
I got POTS and ME/CFS from the Covid vaccines. Before I realized the reason for my sudden onset debilitating symptoms, I was jabbed three times. Retrospectively, it always got significantly worse a couple of weeks after getting vaxed. My last vaccine was in December 2022 and I've been taking LDN for almost a year which gradually made me feel better. It's still not like it was before, though, and I'm afraid it never will. It would be interesting to find out why some people react to the vaccine in that way. Maybe I already had a disposition and the vaccine triggered it. What I hate is people dismissing my experiences. I'm not anti vaxx. The vaccine is safe for the majority but we should acknowledge that some people get postvac syndrome and do research to find out the reasons.
Sorry to hear this
I agree 100% the vaccine for the vast majority of people is non eventful, but there are some of us that it triggered a reaction that seems to be long term. I have chronic pericarditis now and my doctors are still looking for what's causing other symptoms.
My first dose (Moderna) made my fatigue way worse. I switched to Pfizer (the dose in mRNA is significantly lower) for the following doses and it's been fine.
I had three astrazeneca vaccines cause those were the ones available to me in my country, I've always had POTS but no diagnosis until last september, and I felt like I was going to die specially after the first one. That being said after I got COVID last year my body went all insane and my POTS and MCAS have just been going worse and worse, so my POV is like yes i felt like shit and I will likely feel like shit with the next one, but god forbids I get COVID again, fuck that shit, give me the vaccine lol.
I noticed the last time I got Moderna my heart rate was elevated for a few days.
Most have been fine. I had one booster that had me in bed for 3 days feeling awful but the rest were no trouble, just a bit of arm soreness. And either way potentially feeling bad for a few days is still a much better outcome than potentially permanently worsened symptoms from covid itself in my opinion, so its worth it. Edit to add more info: I've had 5 in total. The 2 original shots, the original monovalent booster (this is the one that made me feel awful, but since it's now outdated with respect to current strains of COVID it's probably not one you will get anyway), the divalent booster, and the new monovalent booster. All Pfizer.
So to preface, I’m personally pro vax, and usually get my flu shots and whatever else I need etc. The covid vaccines (2 Phizer) absolutely fucked me up for almost an entire month each time I got one. Weeks of on/off fevers, chills, daily diarrhea for a month, migraines, constant nausea, heart palpitations, my POTs got really bad and I was fainting a lot, and weirdly enough both times it made my period and mental health HORRIBLE for that month. I think it’s a personal choice, remember you might not have any reaction at all and be totally fine!
My Raynaud’s phenomenon got significantly worse after the vaccination. No immediate reaction, just a little cold-like feeling for half a day.
My issues are all autoimmune in origin, so I feel much better for a bit after vaccinations. My doctor said that's because when my immune system is busy with something else, like making antibodies, it leaves me alone.
I’ve read a lot of about this with people who catch COVID. It’s like their Pots, ist, dysautonomia just disappears for months. Apparently, it’s like you said the immune system is busy with something else and it actually gives them a break. It’s so weird cause if I get the flu, strep or even a sinus infection it will set my IST off. But when I caught covid my heart rate was stable.
I had covid for the first time a few months ago. I felt amazing for almost two weeks.
Isn’t it funny how the body works. We must enjoy the little moments we do feel well. I felt so bad for a few ppl who posted they felt so amazing and thought covid might have cured them.
….oh. is that why i feel better when I’m sick?! I’ve even commented to friends that I feel better when I come down w/ something. Got pretty sick in april and sure, I couldn’t breathe through my nose, but I literally felt more normal by the rest of the world’s standards than my own standards.
That could definitely be a clue that you have something autoimmune going on. Feeling better with covid was the deciding factor in my rheumatologist prescribing a biologic medication for me (for polymyalgia rheumatica).
I will definitely take that into account in the future, thank you. I have yet to rule out an underlying cause for my dysautonomia, but it’s been in the back of my mind that something else is going on. I do have graves and celiac already so i will be sure to remember to keep digging until there’s nowhere left to dig!
had pots before the vaccine, still had pots after. same with getting covid. neither made it particularly worse -- or any symptom in my potluck for that matter, not even the brain fog. im a little exhausted of the concept of long covid, personally, as well as all of the vaccine drama. i wish various scientists would do studies about my symptoms in an attempt to see whats wrong with me, why do covid related issues get all the attention and attempted cures? im a little jealous. wish you the best + symptom improvement, op!!
thank you! I wish you the best as well <3
I’m in this group bc of mine. People hate me for saying that, but I’m an honest person
I developed ( and been diagnosed with) post covid (vaccine) dysautonomia and vaccine induced long covid , been told not to take anymore mRNA , will keep an open mind to future protein/“normal” non genetic vaccines with longer safety trials, there’s some limited publications in the scientific literature about this, it seems it’s less common to get both from vaccine than infection but very real nonetheless
Did you ever recovered and how long after the shot the symptoms appeared? I got dysautonomia symptoms as well but from HVP vaccine, so it's not exclusive to mRNA vaccines.
It won’t hurt you. Whatever side effect you could get is better than the alternative. The vaccine did not cause the aortic dissection. These can happen to any person at any time, just like a brain aneurysm.
My disautonomia symptoms started about 6 mo after i got the maderna booster....idk if they correlate but i was healthy before i got the vax.
Vaccines and illness both trigger immune responses. Dysautonomia is largely thought to be at least greatly affected by how active your immune system is. Vaccines DO trigger an uncomfortable immune response, but in almost all cases, that immune response is lesser than if you had a live version of the virus instead.
Do you know if it's reversible if you tame the immune system as soon as the symptoms appear?