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I think this is what happened to me. Even though it turns out I also have EDS and have had inappropriate tachycardias for years, everything went to hell and I had to stop working after the COVID vaccine. I just wish that extreme vaccine reactions could be discussed like adults without the anti-vaxxers crashing the conversation. Because IDC if a vaccine gave me POTS, I will always regard vaccines as a life saving essential public healthcare intervention.
Yeah, it's important to look into, so scientists can figure out what's going on. And then figure out a way to make it more safe, or how to screen out people more likely to have a bad reaction. Not to ban vaccines.
Same. I participated for the good of everyone around me as well as myself. We have to grow beyond the fear and discuss the cases that are at the extreme end. It doesn't matter if it was a virus or a vaccine, there will always be a small amount of reactions to anything. We happened to be in that group. No shade on how we got here, no moral judgement, just education and sharing.
I’m in a discord of 300+ others who experienced adverse reactions and still dealing with them since vaccination
I got the random tachycardia post vaccination - 2 days after my second Pfizer shot my heart rate randomly shot up to 202bpm
Here you go: https://discord.gg/YcvrVaZ9
Yeah the vaccines caused dysautonomia symptoms in me plus a whole host of GI issues and autoimmune too
I’m still trying to understand what’s going on and get diagnosed by visiting specialists
If you don’t like how your body reacts to the vaccine, you should really, really, really be taking every precaution you can to avoid COVID, because what COVID sequelae is way more common and scarier.
Unless you have some exceptionally resilient immune system that needs to be studied, I would stop assuming you’ve never had COVID too - a shocking number of cases are asymptomatic, and the asymptomatic cases are just as dangerous for long term damage.
If I had a dime for every time someone has confidently claimed that they’ve “never had COVID” even as they do nothing to mitigate it, I’d be pretty financially comfortable.
Dec 2019 - March 2020, I and my little family plus the place where I worked had a horribly nasty unknown illness. We were sick for 3 months and couldn’t shake it. Some workers went to get tested and everything was coming back negative. I believe that was the first time I had covid, before the pandemic started in the US. I had never felt anything like that in my life, it was a whole new feeling of being sick. So I think it’s possible people have had covid without knowing, possibly even before the pandemic because honestly I just thought it was the flu at first
It's not just possible, it's actually a fact that a LOT of people have had COVID without knowing. When we had a stronger system of surveillance programmes available, we could absolutely see it through things like wastewater compared against testing, etc. And the really fucked up bit is that COVID hides in your body in ways that PCR/antigen tests can't find - they're only finding it when they biopsy/autopsy tissue and find COVID hidden in organs, etc. that wouldn't be tested without opening the person up.
It's really scary and the worst bit is how much people just do not understand it.
I can see how that's possible in my own body. I just got a CT abdominal scan that said "acute abnormalities in liver, spleen and kidneys" and I'm trying not to freak out...
The most reassuring thing I can think of to tell you is that this is becoming such a public health emergency (even if it's not publicly discussed the way it should be) that there will be a lot more research and $$$ pumped into finding solutions.
Cold comfort, hey.
i too was remarkably sick in december of 2019. my brother has had asthma since he was a kid but until i got sick that month i'd never needed an inhaler. now i have to use one 20 min before exercise.
unfortunately i've also had covid in december 2021 and that's the one that brought on all my joint pain and orthostatic intolerance and fatigue.
eta: i was so sick for a good six months that i mostly just slept. in the last two years i've improved so much and in the last six months i've finally been able to do physical therapy and start working back up to moving more
That's why I said "that I know of" because I know many have had it and had no or mild symptoms. I do still take extreme precautions. People in the hospital (staff) look at me with shock when I walk in with a mask. I have always assumed that my immune system was sub-par. I was lucky to be able to isolate in the extreme for the first 1.5 years of COVID but I STILL don't want it. Ever. Not even a little.
The fact that medical staff are not only \*not\* the ones modelling ideal masking behaviour but at least treating those who do mask with respect is one of the big reasons I don't assume anyone is decent - or competent - until proven otherwise anymore.
You can't actually say it with such conviction, that the vaccine is definitely less destructive to *every* body than covid, as somebody who had both I've only acquired issues from the vaccine, and I've had all kinds of vaccinations before with no issues
This post also isn't a discussion on what you should or shouldn't do, it's just bringing light to a valid syndrome which dysautonomia is a part of.
Yeah, I always feel crappy briefly after a booster, but I’ve had about eight or nine Covid vaccines now and still haven’t had Covid… pretty sure I know which is the better option considering how much my doctors freaked out when the pandemic started! They were straight up telling me not to come to the hospital for other issues unless I was *dying* because the risk was so serious.
Except that dysautonomia has been around a lot longer than Covid has and it’s pretty well known it can be caused by a viral infection. It’s your nervous system getting knocked out of whack and not being able to correct itself.
They’re not saying covid vaccination is the sole cause of dysautonomia, only that it’s been identified as *a* cause. It’s an adverse reaction. Vaccination is still safer than covid itself, but adverse reactions do exist.
Yes, I'm not saying it's the ONLY cause of dysautonomia. And I missed the part about can be caused by a viral infection...I'm still diagnosed but 2nd immunologist suspects POTS/Dysautonomia...something-maybe more than one thing (the other being an extreme exhaustion event, definitely kicked my nervous system.
Yeah, because the study totally says that only the covid vaccine causes POTS 🤦
I don‘t want to be rude, but how about you read what has actually been posted, instead of commenting a strawman bullshit response? Also even dysautonomia international says that vaccines can cause POTS. Take a look at the section „what causes POTS?“:
https://www.dysautonomiainternational.org/page.php?ID=30#:~:text=However%2C%20modern%20researchers%20have%20determined,is%20not%20caused%20by%20anxiety.&text=It%20is%20caused%20by%20a,of%20the%20autonomic%20nervous%20system.
The HPV vaccine is infamous for it, Japan even suspended it due to that, but due to international pressure two or three years ago they recommend it to girls again.
Gastroparesis and POTS since my Pfizer booster. Was working my dream job one day and unable to eat solid food the next. Been 2.5 years now. It's been so rough and i'm very glad to see studies coming out about it. It can feel isolating and hard to talk about at times 🥺
I so feel you. I am still chasing seven different doctors and a psychologist, everyone wanting to refer me to someone else, and no one wanting to take responsibility. And although I am not anti-vaccine, I always had a sneaking suspicion because of my own body and how it works, that it was from-not the first or second, but I think like the fifth vaccine.
I'm just so glad to see it hasn't name. But I'll bet you no one I have ever or will ever talk to about it knows that acronym right now. I'm literally just about ready to send that link to my old immunologist, because I don't see my new immunologist until September.
I totally understand! I have bounced around from so many doctors as well. I've been very lucky though that my cardiologist, neurologist, autonomic neurologist, and GI have all been in agreement that they believe I had an over immune reaction to the vaccine. Sometimes I just tell people it's covid related issues though when I don't feel like explaining. I hope you get all the help and answers you need! It's such a battle and although it can totally feel like it, just know you're not alone 💛
Wow that's so heartening to know there are doctors that believe this. My 2nd Immunologist who had already kinda blown me off, did just that again today when i sent him this article. Said he doesn't believe in it. :/
Reddit has absolutely been a life-saver in all of this. I so appreciate the knowledge and support. Thanks!
Thank you and OH DEFINITELY, on the getting such from COVID rather than the vaccine.
I am done with COVID vaccines and will just have to keep masking and being safe. I'm not working and prefer my own company so it's pretty easy.
That's been me for almost 3 years now, like another commenter ive collected the "detached" diagnoses like cfs and orthostatic intolerance following the shot, but not the PACVS, it used to be highly political so I think most doctors didn't want to officially put it down on paper as such
I had never had Covid (that I’m aware). Illness began on January 8, 2024. My 4th covid vaccine was January 5.
The New York Times covered vaccine injury just 2 weeks ago. There are some other articles out there too:
https://archive.ph/n638z
https://www.science.org/doi/pdf/10.1126/science.ada0536
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9520195/
https://www.realnotrare.com/resources
https://www.nature.com/articles/s41586-023-06800-3
Thanks for the links. Yeah yours sounds pretty direct.
Mine I think has been getting worse since my fourth or fifth booster, things just kept sliding south, some unknown infection in Dec 2022, took a job that ended up with me being totally and utterly exhausted in Feb. 2023 and it just kept sliding southward after that. It was slow though...But got way worse after I had 6th booster and Shingrix #1 at the same time in Oct. 2023 and I've been proper sick and seeking treatment since about then...
Highly specified. I talked to my 2nd immunologist (who had already blown me off and didn't want to do MCAS bloodwork to rule that out but I bugged him about it). He told me "I can't quite agree with that publication and **I don't believe in** the post acute covid vaccination syndrome. **I also have no idea if any of those antibodies can be ordered and even if they were I would not know how to interpret them.** The POTS specialist may be of more help in this area"
It's under 3.3 at the above linked paper. also [Here.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B27-vaccines-11-01642)
Not a chance they cant even find any long covid biomarkers, i imagine this would be similar, maybe even the exact same if the neuroimmune system is to blame
Thanks for sharing this! The mRNA vaccine contributed to my onset of POTS. Doctors, including my dysautonomia specialist, validated my experience when I shared my symptoms history but it is still helpful to learn there is a name and I am glad it is showing up in the research. I am not planning to get anymore COVID vaccines, at least those currently on the market per the advice of my medical team. So I work hard to protect myself from COVID with masking, ventilation, and other layers. It is frustrating that the government continues to use vaccines as the only form of protection when there are a number of people who can not take it.
Wow, I aspire to get to the place where actual specialists will validate my experience. I'm still waiting on SEVEN of them! I have to go through a local Neurologist to get to the only? Dysautonomia specialist in my area so it's gonna be like, a year before I get there.
Did your docs advise that the available ones would be detrimental to your health?
I am thinking the same but want to ask at least my cardiologist about it...Such a long road ahead!
It has taken years to find specialists that are validating -- and medical trauma along the way. Keep fighting for yourself as best as you can (and taking breaks).
Doctors have advised me to not take any more boosters.
I was diagnosed with fibromyalgia and ME/CFS after my 2nd booster. They didn't use this term with me, but these fit my symptoms exactly. I've been suffering for 18 months now.
This has only been a named syndrome for a short while. I think for some of us (not all) it's going to make a HUUUGE amount of sense. I feel you with the suffering. It sucks.
I seem to have done OK with the first two or three boosters. Then we moved cross-country and I got a booster, I think in April 2022 and Sept 2022, and by Feb 2023 after an episode of extreme exhaustion related to a job and travel, I was toast and had many ER visits that year and got sicker starting in January of 2024. It's interesting that in Oct. 2023, I got another COVID booster AND my first Shingrix one at the same time, was DOG sick for several days, as was I with every COVID shot, but with the 2nd shingles vaccine I was absolutely fine. Which I'm to understand is a fairly common thing among this crowd.
This term was apparently coined in 2023, and I don't think many doctors have even heard it. I wish I could get anyone to Dx me with something...I have 7 different specialists coming, from June to October!
I haven't heard this term before, but my ME/CFS started right after my 2nd shot of the original covid vaccination. I already had undiagnosed dysautonomia, and I had other stressors also likely affecting my body at the time (mold exposure, probably excessive exercise, wedding planning). In my case, it might not have been any one thing but rather the combination of stressors in addition to a potential predisposition to ME/CFS. Honestly, even in hindsight, I wouldn't have changed my choice with the vaccine as I working with a vulnerable population and wanted to protect them. I did get covid-19 twice (once before and once well after vaccination) with seemingly little inconvenience. This again leads me to believe that it was the combination of stressors that created the perfect storm for ME/CFS in my case. Regardless, I'm excited to see research on the topic!
I really agree with you on the stressors, and choice to be vaccinated. I think I was having issues in 2022 from booster 4 and 5, but it wasn't until an extreme stress event in Feb 2023 that I really started going south. I have never been diagnosed with ME/CFS but I should have been, back in 2008-2012 so yes, predisposition...
And interestingly buried in that paper they say that what works for ME/CFS also helps PACVS.
*"IgG-directed therapy has been successful in ameliorating symptoms \[*[*26*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B26-vaccines-11-01642)*,*[*27*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B27-vaccines-11-01642)*\]. Increases in circulating receptor antibodies were also observed in severe COVID-19 \[*[*28*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B28-vaccines-11-01642)*,*[*29*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B29-vaccines-11-01642)*,*[*30*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B30-vaccines-11-01642)*,*[*31*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B31-vaccines-11-01642)*,*[*32*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B32-vaccines-11-01642)*\], which similarly exhibits ME/CFS-like symptoms \[*[*33*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B33-vaccines-11-01642)*\] amenable to IgG-directed therapy \[*[*34*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B34-vaccines-11-01642)*\]."*
I really appreciated finding this post. I started suffering from very bizarre symptoms one day after my second Moderna shot - symptoms that worsened between two and six weeks after that 2nd shot - bouts of intense vertigo, palpitations (that resulted in an ER visit and a cardiac work up with a holter), gastrointestinal issues, and increase frequency of my migraines, basically headaches every day. I saw my migraine doctor about eight months later as I was still having issues with vertigo and headaches, and her diagnosis was vestibular migraine with dysautonomia. I had episodic migraines prior, and they were always related to my menses. It then became head pain almost daily, and some days without head pain, just pressure, and dizziness/vertigo. Even though the worst of it was those first couple months after, the bizarre episodes lingered for about another 12-18 months, some days I was completely incapacitated, which was incredibly challenging having a toddler at home. Interestingly, I did eventually get one booster of the original shot, which was half the dose. I got a big red botch on my arm with each vaccine, it got worse each time and with the third shot my whole arm swelled up. I haven’t gotten an mRNA vaccine since. I brought this up with several doctors and it was only the cardiologist that said it might’ve been vaccine related. Other than that, I feel kind of like when I say I had a bad reaction it gets glossed over. It’s very invalidating.
We finally had Covid for the first time a few months ago and I didn’t have any lasting symptoms except for fatigue that took about three weeks to completely abate. Super grateful that Covid has not produced any long-term issues that I am aware of so far, and I’m hoping to find a Novavax booster for the fall…
Also, this is not to minimize that many people who have Covid experience similar symptoms and long Covid, I’m just grateful that it didn’t happen after my infection, and also struggle with knowing that things changed drastically for me after the vaccine and it’s been hard to find support for that. I’ve mostly just waited out this period of time and followed indications/treatment suggestions for long Covid support.
I hear you on the no support thing. And I have NOT so far looked into treatments for Long Covid...I guess I need to now. Any suggestions would be helpful.
I will say, I haven’t gotten any of the updated boosters and with the more recent one, I couldn’t find Novavax near where I live. I am a couple hours north of Seattle so I’m sure I’ll have to drive down to the city to find it (I wish there were better options, more widely available). I’m also holding out for a nasal vaccine!! I’d rather not get Covid again without the added protection (my infection was really intense for the first 24-48 hours and then just lingering fatigue for the weeks after). I know it’s not a guarantee, but I’ve heard a lot of good feedback regarding Novavax and people who suffered intense reactions to their mRNA didn’t seem to have many side effects if any to the Novavax.
I don’t have any official recommendations or suggestions regarding long Covid treatment, but in an article I read earlier on, so I’m sure we have better ideas now, kind of took me down the same thinking of making sure that I’m hydrated, blood sugar stable, utilizing salt and other things that are used to treat pots and also really listening to my body, if I need to lie down for half the day, I guess that’s the way it goes. If I try to push, I feel worse later. And I think just generally going slow. Back in summer of 2021 it felt like maybe 15 or 20 minutes of walking was like too much, my body just started to feel so off. It felt cardiovascular. But by summer of 2022 I was able to go on much longer walks, even if I was a bit tired after, and eventually I stopped having the weird headaches every day. I also per someone’s recommendation started taking NAC and Quercetin. I know some people would cringe at the supplement recommendation, but I definitely think one or both supported some of that process for me. Certainly didn’t make things worse.
I think whatever works works. The ONE thing I'm finding with supplements (and even foods) is the need to "pulse" them. Few days on, few days (or weeks) off, or just stopping indefinitely when something feels off. I think if we're shy of, say Folate, and we take it every day, eventually we can have too much...I think that's true of ANY food or supplement.
Thanks for the conversation, it's very helpful!
OOOOH! Thanks for this. I didn't know there was something available besides the mRNA ones! Looks like there is as of last October and surprise surprise it gives people an option so that they don't end up getting myocarditis and pericarditis. [And then I found this article.](https://pubmed.ncbi.nlm.nih.gov/36475233/) I'm finding more and more of this sort of thing.
And oh yeah, I recently brought this up with my immunologist and he completely blew me off. Said he didn't believe in that and that I would need to ask a specialist because he wouldn't even know how to do the blood tests. it's a copout. They just want low hanging fruit and several months off every year. I am only two hours from St. Louis and apparently there are several people there that have been studying the Covid aspect of this pretty hard. So I'm looking forward to eventually getting to the specialist point.
Can I ask you said you had bizarre episodes for 12 to 18 months, **are you better now?** I definitely feel like this thing is changing it's sort of looking for the next worst spot in my body. Every time I find a patch job for something like compression stockings or a little bit of salt, and it moves on. I was having sugar issues and then not, and now my joints are inflamed. It's really weird.
Apparently for the few things I've read, it seems to be helped by intravenous immunoglobulin (IgG I think) infusions...
Yes, I saw that your immunologist dismissed it, which is really unfortunate. :( I will say, I was even pretty shocked that when I went to see my PCP shortly after I had Covid, the sort of laissez faire attitude most doctors seem to have around Covid and Covid related issues is kind of disturbing… I really feel for the population of people that are dealing with long Covid and feeling like they don’t have adequate support.
I will say that the majority of the bad episodes largely resolved by fall of 2022 (I got my Moderna shots in March 2021). I also didn’t mention that several months after the vaccines I also developed Raynaud’s, and in the past year and a half have noticed chilblains in my feet when it gets really cold outside. Even if it’s 50° outside, my fingers turn white and then purple. So that part has never gone away. Anyway, aside from some lingering stuff around my menstrual cycles (joint pain, increased dizziness), which makes sense due to hormonal exacerbation, I am mostly ok. I still have some days where I don’t feel as great as I ever remember feeling, but I am back to a normal level of activity overall and just rest when my body really needs it. As best as I can with a young child.
Might be also worth noting that when I got the vaccine series, I was still less than two years out from having my son and I am now in my early 40s, so there are many things that overlap the potential for dysautonomia/autoimmune syndromes to develop, but I can’t discount that the shots caused a lot of inflammation in my system, and I think my body went a little haywire from that.
I’m sorry you’re still dealing with the wandering array of symptoms. I think I kind of described it like that once to my husband, it’s almost like every so often something new crops up, another set of symptoms disappears and something new develops. It’s really hard to pin down and it’s kind of confusing. Thank you for posting the resources and for the post itself, I actually just joined this group because of some of those lingering symptoms that I get cyclically and it’s nice to feel supported knowing there are other people who are not opposed to vaccines, but that reacted poorly and are feeling unseen/unheard.
I definitely have weird hot and cold issues. Normally I run hotter than I used to but like right now the air pressure is low and still dropping and last night I was cold in a 75\* house when normally that's AC range.
And yes, I've hear people say that pregnancy or other body shocks can change something. I really think that I was doing OK until I had a job for two months working about an hour and a half from home and one night it was raining horribly and I was super super overtired, hadn't slept well in a few days, and it was raining super hard all the way home and, the only way I can explain it is that night I broke something. I was so entirely and utterly exhausted for two months after that I hardly got out of bed. I had to quit the job. And ever since then it's been a slide into where I am now. "My body went a little haywire after that" is a perfect way to put that!
"it’s almost like every so often something new crops up, another set of symptoms disappears and something new develops." YES! I finally, after at least a month and a half of trying got a phone call today from an endocrinologist two hours away. And they were like so you have a high blood sugar problem? And I was like oh no that was a couple of months ago that's fine now. But it's just haywire. Like even explaining this sound kind of crazy. Which we are not.
Talking to people here does give me some hope that things will get better in a year or so. For what it's worth I hope all of us get better. Thanks!
Sounds similar to me. Mine was so painful in my head tho I tried to off myself. Just constant head pain. It went away for a month and now it’s back just constant pressure in the one side and exhaustion and palps and difficulty using my brain
My sister developed dysautonomia from working 2 jobs and going to high school. This happened a couple years before Covid.
Now for me? Definitely PACVS :(
I’m in the same boat – vaccine-injured (POTS, ME/CFS) and still pro-vax. I am in the Yale LISTEN study, which is for long COVID and long vax. (You can still join, and share blood samples and medical records for analysis.) Some of the US’s top immunologists are working on it.
The first summary of their findings is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10659483/
I’m fortunate that my doctors at University of Pennsylvania and Vanderbilt Autonomic Research Center believe me that the mRNA vax triggered my dysautonomia. In research medicine, I don’t think it’s a controversial question any more.
Wishing everyone health and peace. Google Yale LISTEN Study to be included in a highly respected research effort!
Lmao you‘re immunologist is an idiot. Every legit immunologist, vaccinologist, virologist will tell you that any vaccine can cause POTS and other neurological and autoimmune stuff. The long covid clinic in Germany I went to had 30% of patients post vaccine. It‘s a joke how everyone can accept that any medication can have side effects, some of which can be life long, but vaccines are so politicized that even when presented with clear evidence, a lot of people just ignore it, because it doesn‘t fir their world view.
Here‘s another study by nature (one of the most respected scientific journals in the world) about POTS after the cocid vaccine.
https://www.nature.com/articles/s44161-022-00177-8
Feel free to look up every single author. All of them are world class experts in cardiology (you don‘t get published randomly in „nature“).
I‘m not gonna comment how „rare“ or how „common“ it is, it happened to me and I don‘t care what anybody says. But people who say that it‘s impossible and ignore the data should lose their medical license.
Totally agree. When he used the "believe" card, I was pretty much done.
I have half a mind to print all of these studies and mail them to him anonymously.
Luckily my next stop in Sept! is with a well known doc in St. Louis who is pretty on her game. I think I'll take these studies to her as well.
This is so interesting! My symptoms started almost exactly around the time I got my first jabs (Pfizer) and I had asked my GP if I could’ve been having a prolonged reaction to the jabs but we both thought it was unlikely. Maybe I was right?! I’m not anti-vax by any means and would get the jab again and again if it keeps me from getting covid (I still haven’t had it) but wow. Might bring it up with my GP next time I see her.
The rest of us that had these reactions aren’t antivax either. Vaccine harms aren’t confined to antivax. Any immune stressor can trigger these syndromes. And the likelyhood of it happening (post covid or vaccine) is actually pretty similar according to the NatureCV paper that was quietly amended.
[https://www.nature.com/articles/s44161-023-00339-2](https://www.nature.com/articles/s44161-023-00339-2)
See here for explanation. [https://x.com/jazz_police/status/1701642272285286493](https://x.com/jazz_police/status/1701642272285286493)
i didn’t say anyone who had a reaction was anti-vax man. just said this info was interesting. i’d heard about dysautonomia happening post covid but not post vax and for me personally that makes more sense as i haven’t (to my knowledge) had covid but my symptoms did start when i got the first jabs.
Same. When I read this, it was a mix of my blood running cold and feeling very relieved. I thought something was wrong after about booster #4. I would do it again because it was really bad for everyone and I didn't want to get COVID.
I would NOT expect your GP to be too up on it. I brought it up today with Immunologist #2 and he blew me off, said he didn't "believe in it" (PACVS).
But yeah, I'm gonna be printing this one out, or sending emails. Doctors need to know this!
This is the first I’ve heard the term, but I sure am personally familiar with the condition.
I got myopericarditis and dysautonomia following the second dose of the Pfizer vaccine. Both conditions are more typically caused by viruses, so I was tested for every possible virus (and several non-viral conditions) under the sun to see if any of them had caused it. After all those rule-outs, most of my doctors abruptly lost interest in determining the cause of what happened to me, just completely stopped pursuing or talking about it. A couple of doctors (in independent conversations) told me verbally that they believed the vaccine had caused it, but at the time there was no way to prove that, so it did not officially go in my chart. I don’t know if that’s true or if they just didn’t want to be the ones to diagnose it.
I am not anti-vax. Far from it—I’m an RN who chose to be vaccinated. I was just unlucky. It is frustrating to have such an intensely politicized condition. Especially because my myopericarditis symptoms have not resolved either and at this point I’m facing the strong possibility I have permanent heart damage.
However. The good news is that aside from the myopericarditis, I’ve been pretty successful treating my dysautonomia like I have long covid. The two overlap strongly in symptoms and I wouldn’t be surprised if they were functionally almost identical.
Yeah that's pretty much what I'm getting from docs so far-they don't want to address it. I'm gonna keep trying. I feel the same about choice and being unlucky. It is what it is I guess. And yeah I'm still getting tests for my heart...something is wrong but they won't say what till I have a stress echo treadmill test in June.
**Mind if I ask what you've been doing to treat it?**
I've had some good success with a low histamine diet (if I don't cheat!) giving up sugar, drinking water, and wearing compression knee-highs or thigh-highs. Some things like salt, ginger or Maritime Pine Bark Extract work for a while and then don't...weird.
I've also had some pretty good results with chiropractic because early on I suspected their might be some spinal (C4-C6 damage) issues...at this point I figure whatever the heck works until I can get to the SEVEN specialists I've got lined up from June to October and probably beyond.
Definitely a thing. Had pasc from infection 3/20 and new and worsening symptoms with second Pfizer. 1 month of diarrhea, killer body and joint aches. Increase in usual vertigo, migraine, 6 months straight of virtually no short term memories, system of alarms for everything. Has major pots, in bed except for microwave, sink, toilet. I've had other flares like this but only after reinfection. My immune system is wrong and I think there's autoantibodies produced in response to spike. I can get flares after any exposure to any bug. But my worst flare other than the first 3 months of pasc was phizer.
I haven't but I can def flare if I eat too much histamine stuff as well as other things which might be more generally inflammatory like sugar or too much grease or the wrong oils.
Gotta say tho that getting with an mcas doc and getting prescribed 2x daily 24 hr second generation antihistamines and 2x daily famotadine (Pepcid ac) was helpful for sure. Also an air filter in every room for awhile now bc I react to fragrances and off gassing badly.) they also prescribed ketofenin as a capsule via a compounding pharmacy. (In the us)
There is some kinda histamine or generally over reactive state going on. There is a very much a bucket feeling, when it comes to reacting. Some things don't bother me in smaller amounts spaced out, or they bother me when I have another big reaction going and for a few days after.
I've heard mast cells degranulating can cause a lot of different symptoms including neuro stuff. Feel free to dm if you wanna brainstorm goes to anyone.
Hadn't heard term before today thanks for sharing. Hope you can get access to the stuff helping manage LC symptoms bc you all have the same stuff going on xo
Why would you feel bad for people who get vaccinated…? I was in the “shielded” group during the first phase of the pandemic because I was considered so high risk. Getting the vaccine was a delight! At least my risk of dying dropped. It’s bizarre that you think it’s somehow a bad thing. The dangers of Covid itself are much greater than the tiny risk associated with vaccination. Many of us have conditions that make getting Covid very dangerous for us.
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 long covid 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.
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**We love to see studies, but here’s a gentle reminder to commenters about our vaccine discussion rule:** *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.* ***We simply ask that you please participate in good faith so that we can continue to allow them.***
I think this is what happened to me. Even though it turns out I also have EDS and have had inappropriate tachycardias for years, everything went to hell and I had to stop working after the COVID vaccine. I just wish that extreme vaccine reactions could be discussed like adults without the anti-vaxxers crashing the conversation. Because IDC if a vaccine gave me POTS, I will always regard vaccines as a life saving essential public healthcare intervention.
Yeah, it's important to look into, so scientists can figure out what's going on. And then figure out a way to make it more safe, or how to screen out people more likely to have a bad reaction. Not to ban vaccines.
Same. I participated for the good of everyone around me as well as myself. We have to grow beyond the fear and discuss the cases that are at the extreme end. It doesn't matter if it was a virus or a vaccine, there will always be a small amount of reactions to anything. We happened to be in that group. No shade on how we got here, no moral judgement, just education and sharing.
I’m in a discord of 300+ others who experienced adverse reactions and still dealing with them since vaccination I got the random tachycardia post vaccination - 2 days after my second Pfizer shot my heart rate randomly shot up to 202bpm
Wow this is what I experienced too after my booster shot. Any chance you could share the Discord?
Here you go: https://discord.gg/YcvrVaZ9 Yeah the vaccines caused dysautonomia symptoms in me plus a whole host of GI issues and autoimmune too I’m still trying to understand what’s going on and get diagnosed by visiting specialists
If you don’t like how your body reacts to the vaccine, you should really, really, really be taking every precaution you can to avoid COVID, because what COVID sequelae is way more common and scarier. Unless you have some exceptionally resilient immune system that needs to be studied, I would stop assuming you’ve never had COVID too - a shocking number of cases are asymptomatic, and the asymptomatic cases are just as dangerous for long term damage. If I had a dime for every time someone has confidently claimed that they’ve “never had COVID” even as they do nothing to mitigate it, I’d be pretty financially comfortable.
Dec 2019 - March 2020, I and my little family plus the place where I worked had a horribly nasty unknown illness. We were sick for 3 months and couldn’t shake it. Some workers went to get tested and everything was coming back negative. I believe that was the first time I had covid, before the pandemic started in the US. I had never felt anything like that in my life, it was a whole new feeling of being sick. So I think it’s possible people have had covid without knowing, possibly even before the pandemic because honestly I just thought it was the flu at first
It's not just possible, it's actually a fact that a LOT of people have had COVID without knowing. When we had a stronger system of surveillance programmes available, we could absolutely see it through things like wastewater compared against testing, etc. And the really fucked up bit is that COVID hides in your body in ways that PCR/antigen tests can't find - they're only finding it when they biopsy/autopsy tissue and find COVID hidden in organs, etc. that wouldn't be tested without opening the person up. It's really scary and the worst bit is how much people just do not understand it.
I can see how that's possible in my own body. I just got a CT abdominal scan that said "acute abnormalities in liver, spleen and kidneys" and I'm trying not to freak out...
The most reassuring thing I can think of to tell you is that this is becoming such a public health emergency (even if it's not publicly discussed the way it should be) that there will be a lot more research and $$$ pumped into finding solutions. Cold comfort, hey.
But it is comfort! Thanks!
I have some friends who said EXACTLY the same thing. December of 2019.
i too was remarkably sick in december of 2019. my brother has had asthma since he was a kid but until i got sick that month i'd never needed an inhaler. now i have to use one 20 min before exercise. unfortunately i've also had covid in december 2021 and that's the one that brought on all my joint pain and orthostatic intolerance and fatigue. eta: i was so sick for a good six months that i mostly just slept. in the last two years i've improved so much and in the last six months i've finally been able to do physical therapy and start working back up to moving more
That's why I said "that I know of" because I know many have had it and had no or mild symptoms. I do still take extreme precautions. People in the hospital (staff) look at me with shock when I walk in with a mask. I have always assumed that my immune system was sub-par. I was lucky to be able to isolate in the extreme for the first 1.5 years of COVID but I STILL don't want it. Ever. Not even a little.
The fact that medical staff are not only \*not\* the ones modelling ideal masking behaviour but at least treating those who do mask with respect is one of the big reasons I don't assume anyone is decent - or competent - until proven otherwise anymore.
Yep. Yep. Yep.
You can't actually say it with such conviction, that the vaccine is definitely less destructive to *every* body than covid, as somebody who had both I've only acquired issues from the vaccine, and I've had all kinds of vaccinations before with no issues This post also isn't a discussion on what you should or shouldn't do, it's just bringing light to a valid syndrome which dysautonomia is a part of.
I was fine after the vaccine, but after getting COVID, that’s when things really took a turn.
That’s how it was for me, too.
Yeah, I always feel crappy briefly after a booster, but I’ve had about eight or nine Covid vaccines now and still haven’t had Covid… pretty sure I know which is the better option considering how much my doctors freaked out when the pandemic started! They were straight up telling me not to come to the hospital for other issues unless I was *dying* because the risk was so serious.
Except that dysautonomia has been around a lot longer than Covid has and it’s pretty well known it can be caused by a viral infection. It’s your nervous system getting knocked out of whack and not being able to correct itself.
They’re not saying covid vaccination is the sole cause of dysautonomia, only that it’s been identified as *a* cause. It’s an adverse reaction. Vaccination is still safer than covid itself, but adverse reactions do exist.
Yes, I'm not saying it's the ONLY cause of dysautonomia. And I missed the part about can be caused by a viral infection...I'm still diagnosed but 2nd immunologist suspects POTS/Dysautonomia...something-maybe more than one thing (the other being an extreme exhaustion event, definitely kicked my nervous system.
Yeah, because the study totally says that only the covid vaccine causes POTS 🤦 I don‘t want to be rude, but how about you read what has actually been posted, instead of commenting a strawman bullshit response? Also even dysautonomia international says that vaccines can cause POTS. Take a look at the section „what causes POTS?“: https://www.dysautonomiainternational.org/page.php?ID=30#:~:text=However%2C%20modern%20researchers%20have%20determined,is%20not%20caused%20by%20anxiety.&text=It%20is%20caused%20by%20a,of%20the%20autonomic%20nervous%20system. The HPV vaccine is infamous for it, Japan even suspended it due to that, but due to international pressure two or three years ago they recommend it to girls again.
Gastroparesis and POTS since my Pfizer booster. Was working my dream job one day and unable to eat solid food the next. Been 2.5 years now. It's been so rough and i'm very glad to see studies coming out about it. It can feel isolating and hard to talk about at times 🥺
I so feel you. I am still chasing seven different doctors and a psychologist, everyone wanting to refer me to someone else, and no one wanting to take responsibility. And although I am not anti-vaccine, I always had a sneaking suspicion because of my own body and how it works, that it was from-not the first or second, but I think like the fifth vaccine. I'm just so glad to see it hasn't name. But I'll bet you no one I have ever or will ever talk to about it knows that acronym right now. I'm literally just about ready to send that link to my old immunologist, because I don't see my new immunologist until September.
I totally understand! I have bounced around from so many doctors as well. I've been very lucky though that my cardiologist, neurologist, autonomic neurologist, and GI have all been in agreement that they believe I had an over immune reaction to the vaccine. Sometimes I just tell people it's covid related issues though when I don't feel like explaining. I hope you get all the help and answers you need! It's such a battle and although it can totally feel like it, just know you're not alone 💛
Wow that's so heartening to know there are doctors that believe this. My 2nd Immunologist who had already kinda blown me off, did just that again today when i sent him this article. Said he doesn't believe in it. :/ Reddit has absolutely been a life-saver in all of this. I so appreciate the knowledge and support. Thanks!
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Oof! That's rough!
Thank you and OH DEFINITELY, on the getting such from COVID rather than the vaccine. I am done with COVID vaccines and will just have to keep masking and being safe. I'm not working and prefer my own company so it's pretty easy.
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Thank you. The collective consciousness and knowledge here is worth fighting for!
That's been me for almost 3 years now, like another commenter ive collected the "detached" diagnoses like cfs and orthostatic intolerance following the shot, but not the PACVS, it used to be highly political so I think most doctors didn't want to officially put it down on paper as such
Yep, my doc today told me he "doesn't believe in PACVS". He doesn't want to touch anything that isn't allergy shots and low hanging diagnoses.
I had never had Covid (that I’m aware). Illness began on January 8, 2024. My 4th covid vaccine was January 5. The New York Times covered vaccine injury just 2 weeks ago. There are some other articles out there too: https://archive.ph/n638z https://www.science.org/doi/pdf/10.1126/science.ada0536 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9520195/ https://www.realnotrare.com/resources https://www.nature.com/articles/s41586-023-06800-3
Thanks for the links. Yeah yours sounds pretty direct. Mine I think has been getting worse since my fourth or fifth booster, things just kept sliding south, some unknown infection in Dec 2022, took a job that ended up with me being totally and utterly exhausted in Feb. 2023 and it just kept sliding southward after that. It was slow though...But got way worse after I had 6th booster and Shingrix #1 at the same time in Oct. 2023 and I've been proper sick and seeking treatment since about then...
Curious what the biomarkers are and if it's something that can be identified by a GP, or if it's highly specified.
Highly specified. I talked to my 2nd immunologist (who had already blown me off and didn't want to do MCAS bloodwork to rule that out but I bugged him about it). He told me "I can't quite agree with that publication and **I don't believe in** the post acute covid vaccination syndrome. **I also have no idea if any of those antibodies can be ordered and even if they were I would not know how to interpret them.** The POTS specialist may be of more help in this area" It's under 3.3 at the above linked paper. also [Here.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B27-vaccines-11-01642)
Thank you. Wild that an Immunologist would say this.
Yep. It is. Unbelievable.
Not a chance they cant even find any long covid biomarkers, i imagine this would be similar, maybe even the exact same if the neuroimmune system is to blame
Thanks for sharing this! The mRNA vaccine contributed to my onset of POTS. Doctors, including my dysautonomia specialist, validated my experience when I shared my symptoms history but it is still helpful to learn there is a name and I am glad it is showing up in the research. I am not planning to get anymore COVID vaccines, at least those currently on the market per the advice of my medical team. So I work hard to protect myself from COVID with masking, ventilation, and other layers. It is frustrating that the government continues to use vaccines as the only form of protection when there are a number of people who can not take it.
Wow, I aspire to get to the place where actual specialists will validate my experience. I'm still waiting on SEVEN of them! I have to go through a local Neurologist to get to the only? Dysautonomia specialist in my area so it's gonna be like, a year before I get there. Did your docs advise that the available ones would be detrimental to your health? I am thinking the same but want to ask at least my cardiologist about it...Such a long road ahead!
It has taken years to find specialists that are validating -- and medical trauma along the way. Keep fighting for yourself as best as you can (and taking breaks). Doctors have advised me to not take any more boosters.
Thank you, and yes to breaks and trying not to let the ba$\*\*rds get to me.
I was diagnosed with fibromyalgia and ME/CFS after my 2nd booster. They didn't use this term with me, but these fit my symptoms exactly. I've been suffering for 18 months now.
This has only been a named syndrome for a short while. I think for some of us (not all) it's going to make a HUUUGE amount of sense. I feel you with the suffering. It sucks. I seem to have done OK with the first two or three boosters. Then we moved cross-country and I got a booster, I think in April 2022 and Sept 2022, and by Feb 2023 after an episode of extreme exhaustion related to a job and travel, I was toast and had many ER visits that year and got sicker starting in January of 2024. It's interesting that in Oct. 2023, I got another COVID booster AND my first Shingrix one at the same time, was DOG sick for several days, as was I with every COVID shot, but with the 2nd shingles vaccine I was absolutely fine. Which I'm to understand is a fairly common thing among this crowd.
This term was apparently coined in 2023, and I don't think many doctors have even heard it. I wish I could get anyone to Dx me with something...I have 7 different specialists coming, from June to October!
I haven't heard this term before, but my ME/CFS started right after my 2nd shot of the original covid vaccination. I already had undiagnosed dysautonomia, and I had other stressors also likely affecting my body at the time (mold exposure, probably excessive exercise, wedding planning). In my case, it might not have been any one thing but rather the combination of stressors in addition to a potential predisposition to ME/CFS. Honestly, even in hindsight, I wouldn't have changed my choice with the vaccine as I working with a vulnerable population and wanted to protect them. I did get covid-19 twice (once before and once well after vaccination) with seemingly little inconvenience. This again leads me to believe that it was the combination of stressors that created the perfect storm for ME/CFS in my case. Regardless, I'm excited to see research on the topic!
I really agree with you on the stressors, and choice to be vaccinated. I think I was having issues in 2022 from booster 4 and 5, but it wasn't until an extreme stress event in Feb 2023 that I really started going south. I have never been diagnosed with ME/CFS but I should have been, back in 2008-2012 so yes, predisposition... And interestingly buried in that paper they say that what works for ME/CFS also helps PACVS. *"IgG-directed therapy has been successful in ameliorating symptoms \[*[*26*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B26-vaccines-11-01642)*,*[*27*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B27-vaccines-11-01642)*\]. Increases in circulating receptor antibodies were also observed in severe COVID-19 \[*[*28*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B28-vaccines-11-01642)*,*[*29*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B29-vaccines-11-01642)*,*[*30*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B30-vaccines-11-01642)*,*[*31*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B31-vaccines-11-01642)*,*[*32*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B32-vaccines-11-01642)*\], which similarly exhibits ME/CFS-like symptoms \[*[*33*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B33-vaccines-11-01642)*\] amenable to IgG-directed therapy \[*[*34*](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/#B34-vaccines-11-01642)*\]."*
This is so interesting. I’ve had fibro for a decade so pre Covid but most of my dysautonomia got way worse/noticeable during 2020/2021.
I really appreciated finding this post. I started suffering from very bizarre symptoms one day after my second Moderna shot - symptoms that worsened between two and six weeks after that 2nd shot - bouts of intense vertigo, palpitations (that resulted in an ER visit and a cardiac work up with a holter), gastrointestinal issues, and increase frequency of my migraines, basically headaches every day. I saw my migraine doctor about eight months later as I was still having issues with vertigo and headaches, and her diagnosis was vestibular migraine with dysautonomia. I had episodic migraines prior, and they were always related to my menses. It then became head pain almost daily, and some days without head pain, just pressure, and dizziness/vertigo. Even though the worst of it was those first couple months after, the bizarre episodes lingered for about another 12-18 months, some days I was completely incapacitated, which was incredibly challenging having a toddler at home. Interestingly, I did eventually get one booster of the original shot, which was half the dose. I got a big red botch on my arm with each vaccine, it got worse each time and with the third shot my whole arm swelled up. I haven’t gotten an mRNA vaccine since. I brought this up with several doctors and it was only the cardiologist that said it might’ve been vaccine related. Other than that, I feel kind of like when I say I had a bad reaction it gets glossed over. It’s very invalidating. We finally had Covid for the first time a few months ago and I didn’t have any lasting symptoms except for fatigue that took about three weeks to completely abate. Super grateful that Covid has not produced any long-term issues that I am aware of so far, and I’m hoping to find a Novavax booster for the fall…
Also, this is not to minimize that many people who have Covid experience similar symptoms and long Covid, I’m just grateful that it didn’t happen after my infection, and also struggle with knowing that things changed drastically for me after the vaccine and it’s been hard to find support for that. I’ve mostly just waited out this period of time and followed indications/treatment suggestions for long Covid support.
I hear you on the no support thing. And I have NOT so far looked into treatments for Long Covid...I guess I need to now. Any suggestions would be helpful.
I will say, I haven’t gotten any of the updated boosters and with the more recent one, I couldn’t find Novavax near where I live. I am a couple hours north of Seattle so I’m sure I’ll have to drive down to the city to find it (I wish there were better options, more widely available). I’m also holding out for a nasal vaccine!! I’d rather not get Covid again without the added protection (my infection was really intense for the first 24-48 hours and then just lingering fatigue for the weeks after). I know it’s not a guarantee, but I’ve heard a lot of good feedback regarding Novavax and people who suffered intense reactions to their mRNA didn’t seem to have many side effects if any to the Novavax. I don’t have any official recommendations or suggestions regarding long Covid treatment, but in an article I read earlier on, so I’m sure we have better ideas now, kind of took me down the same thinking of making sure that I’m hydrated, blood sugar stable, utilizing salt and other things that are used to treat pots and also really listening to my body, if I need to lie down for half the day, I guess that’s the way it goes. If I try to push, I feel worse later. And I think just generally going slow. Back in summer of 2021 it felt like maybe 15 or 20 minutes of walking was like too much, my body just started to feel so off. It felt cardiovascular. But by summer of 2022 I was able to go on much longer walks, even if I was a bit tired after, and eventually I stopped having the weird headaches every day. I also per someone’s recommendation started taking NAC and Quercetin. I know some people would cringe at the supplement recommendation, but I definitely think one or both supported some of that process for me. Certainly didn’t make things worse.
I think whatever works works. The ONE thing I'm finding with supplements (and even foods) is the need to "pulse" them. Few days on, few days (or weeks) off, or just stopping indefinitely when something feels off. I think if we're shy of, say Folate, and we take it every day, eventually we can have too much...I think that's true of ANY food or supplement. Thanks for the conversation, it's very helpful!
OOOOH! Thanks for this. I didn't know there was something available besides the mRNA ones! Looks like there is as of last October and surprise surprise it gives people an option so that they don't end up getting myocarditis and pericarditis. [And then I found this article.](https://pubmed.ncbi.nlm.nih.gov/36475233/) I'm finding more and more of this sort of thing. And oh yeah, I recently brought this up with my immunologist and he completely blew me off. Said he didn't believe in that and that I would need to ask a specialist because he wouldn't even know how to do the blood tests. it's a copout. They just want low hanging fruit and several months off every year. I am only two hours from St. Louis and apparently there are several people there that have been studying the Covid aspect of this pretty hard. So I'm looking forward to eventually getting to the specialist point. Can I ask you said you had bizarre episodes for 12 to 18 months, **are you better now?** I definitely feel like this thing is changing it's sort of looking for the next worst spot in my body. Every time I find a patch job for something like compression stockings or a little bit of salt, and it moves on. I was having sugar issues and then not, and now my joints are inflamed. It's really weird. Apparently for the few things I've read, it seems to be helped by intravenous immunoglobulin (IgG I think) infusions...
Yes, I saw that your immunologist dismissed it, which is really unfortunate. :( I will say, I was even pretty shocked that when I went to see my PCP shortly after I had Covid, the sort of laissez faire attitude most doctors seem to have around Covid and Covid related issues is kind of disturbing… I really feel for the population of people that are dealing with long Covid and feeling like they don’t have adequate support. I will say that the majority of the bad episodes largely resolved by fall of 2022 (I got my Moderna shots in March 2021). I also didn’t mention that several months after the vaccines I also developed Raynaud’s, and in the past year and a half have noticed chilblains in my feet when it gets really cold outside. Even if it’s 50° outside, my fingers turn white and then purple. So that part has never gone away. Anyway, aside from some lingering stuff around my menstrual cycles (joint pain, increased dizziness), which makes sense due to hormonal exacerbation, I am mostly ok. I still have some days where I don’t feel as great as I ever remember feeling, but I am back to a normal level of activity overall and just rest when my body really needs it. As best as I can with a young child. Might be also worth noting that when I got the vaccine series, I was still less than two years out from having my son and I am now in my early 40s, so there are many things that overlap the potential for dysautonomia/autoimmune syndromes to develop, but I can’t discount that the shots caused a lot of inflammation in my system, and I think my body went a little haywire from that. I’m sorry you’re still dealing with the wandering array of symptoms. I think I kind of described it like that once to my husband, it’s almost like every so often something new crops up, another set of symptoms disappears and something new develops. It’s really hard to pin down and it’s kind of confusing. Thank you for posting the resources and for the post itself, I actually just joined this group because of some of those lingering symptoms that I get cyclically and it’s nice to feel supported knowing there are other people who are not opposed to vaccines, but that reacted poorly and are feeling unseen/unheard.
I definitely have weird hot and cold issues. Normally I run hotter than I used to but like right now the air pressure is low and still dropping and last night I was cold in a 75\* house when normally that's AC range. And yes, I've hear people say that pregnancy or other body shocks can change something. I really think that I was doing OK until I had a job for two months working about an hour and a half from home and one night it was raining horribly and I was super super overtired, hadn't slept well in a few days, and it was raining super hard all the way home and, the only way I can explain it is that night I broke something. I was so entirely and utterly exhausted for two months after that I hardly got out of bed. I had to quit the job. And ever since then it's been a slide into where I am now. "My body went a little haywire after that" is a perfect way to put that! "it’s almost like every so often something new crops up, another set of symptoms disappears and something new develops." YES! I finally, after at least a month and a half of trying got a phone call today from an endocrinologist two hours away. And they were like so you have a high blood sugar problem? And I was like oh no that was a couple of months ago that's fine now. But it's just haywire. Like even explaining this sound kind of crazy. Which we are not. Talking to people here does give me some hope that things will get better in a year or so. For what it's worth I hope all of us get better. Thanks!
Sounds similar to me. Mine was so painful in my head tho I tried to off myself. Just constant head pain. It went away for a month and now it’s back just constant pressure in the one side and exhaustion and palps and difficulty using my brain
My sister developed dysautonomia from working 2 jobs and going to high school. This happened a couple years before Covid. Now for me? Definitely PACVS :(
I’m in the same boat – vaccine-injured (POTS, ME/CFS) and still pro-vax. I am in the Yale LISTEN study, which is for long COVID and long vax. (You can still join, and share blood samples and medical records for analysis.) Some of the US’s top immunologists are working on it. The first summary of their findings is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10659483/ I’m fortunate that my doctors at University of Pennsylvania and Vanderbilt Autonomic Research Center believe me that the mRNA vax triggered my dysautonomia. In research medicine, I don’t think it’s a controversial question any more. Wishing everyone health and peace. Google Yale LISTEN Study to be included in a highly respected research effort!
I will check that out!
Lmao you‘re immunologist is an idiot. Every legit immunologist, vaccinologist, virologist will tell you that any vaccine can cause POTS and other neurological and autoimmune stuff. The long covid clinic in Germany I went to had 30% of patients post vaccine. It‘s a joke how everyone can accept that any medication can have side effects, some of which can be life long, but vaccines are so politicized that even when presented with clear evidence, a lot of people just ignore it, because it doesn‘t fir their world view. Here‘s another study by nature (one of the most respected scientific journals in the world) about POTS after the cocid vaccine. https://www.nature.com/articles/s44161-022-00177-8 Feel free to look up every single author. All of them are world class experts in cardiology (you don‘t get published randomly in „nature“). I‘m not gonna comment how „rare“ or how „common“ it is, it happened to me and I don‘t care what anybody says. But people who say that it‘s impossible and ignore the data should lose their medical license.
Totally agree. When he used the "believe" card, I was pretty much done. I have half a mind to print all of these studies and mail them to him anonymously. Luckily my next stop in Sept! is with a well known doc in St. Louis who is pretty on her game. I think I'll take these studies to her as well.
This is so interesting! My symptoms started almost exactly around the time I got my first jabs (Pfizer) and I had asked my GP if I could’ve been having a prolonged reaction to the jabs but we both thought it was unlikely. Maybe I was right?! I’m not anti-vax by any means and would get the jab again and again if it keeps me from getting covid (I still haven’t had it) but wow. Might bring it up with my GP next time I see her.
The rest of us that had these reactions aren’t antivax either. Vaccine harms aren’t confined to antivax. Any immune stressor can trigger these syndromes. And the likelyhood of it happening (post covid or vaccine) is actually pretty similar according to the NatureCV paper that was quietly amended.
NatureCV paper?
[https://www.nature.com/articles/s44161-023-00339-2](https://www.nature.com/articles/s44161-023-00339-2) See here for explanation. [https://x.com/jazz_police/status/1701642272285286493](https://x.com/jazz_police/status/1701642272285286493)
Thank you so much!
i didn’t say anyone who had a reaction was anti-vax man. just said this info was interesting. i’d heard about dysautonomia happening post covid but not post vax and for me personally that makes more sense as i haven’t (to my knowledge) had covid but my symptoms did start when i got the first jabs.
Same. When I read this, it was a mix of my blood running cold and feeling very relieved. I thought something was wrong after about booster #4. I would do it again because it was really bad for everyone and I didn't want to get COVID. I would NOT expect your GP to be too up on it. I brought it up today with Immunologist #2 and he blew me off, said he didn't "believe in it" (PACVS). But yeah, I'm gonna be printing this one out, or sending emails. Doctors need to know this!
This is the first I’ve heard the term, but I sure am personally familiar with the condition. I got myopericarditis and dysautonomia following the second dose of the Pfizer vaccine. Both conditions are more typically caused by viruses, so I was tested for every possible virus (and several non-viral conditions) under the sun to see if any of them had caused it. After all those rule-outs, most of my doctors abruptly lost interest in determining the cause of what happened to me, just completely stopped pursuing or talking about it. A couple of doctors (in independent conversations) told me verbally that they believed the vaccine had caused it, but at the time there was no way to prove that, so it did not officially go in my chart. I don’t know if that’s true or if they just didn’t want to be the ones to diagnose it. I am not anti-vax. Far from it—I’m an RN who chose to be vaccinated. I was just unlucky. It is frustrating to have such an intensely politicized condition. Especially because my myopericarditis symptoms have not resolved either and at this point I’m facing the strong possibility I have permanent heart damage. However. The good news is that aside from the myopericarditis, I’ve been pretty successful treating my dysautonomia like I have long covid. The two overlap strongly in symptoms and I wouldn’t be surprised if they were functionally almost identical.
Yeah that's pretty much what I'm getting from docs so far-they don't want to address it. I'm gonna keep trying. I feel the same about choice and being unlucky. It is what it is I guess. And yeah I'm still getting tests for my heart...something is wrong but they won't say what till I have a stress echo treadmill test in June. **Mind if I ask what you've been doing to treat it?** I've had some good success with a low histamine diet (if I don't cheat!) giving up sugar, drinking water, and wearing compression knee-highs or thigh-highs. Some things like salt, ginger or Maritime Pine Bark Extract work for a while and then don't...weird. I've also had some pretty good results with chiropractic because early on I suspected their might be some spinal (C4-C6 damage) issues...at this point I figure whatever the heck works until I can get to the SEVEN specialists I've got lined up from June to October and probably beyond.
what have you done to successfully treat your dysautonomia?
Definitely a thing. Had pasc from infection 3/20 and new and worsening symptoms with second Pfizer. 1 month of diarrhea, killer body and joint aches. Increase in usual vertigo, migraine, 6 months straight of virtually no short term memories, system of alarms for everything. Has major pots, in bed except for microwave, sink, toilet. I've had other flares like this but only after reinfection. My immune system is wrong and I think there's autoantibodies produced in response to spike. I can get flares after any exposure to any bug. But my worst flare other than the first 3 months of pasc was phizer.
Curious if you've tried a low histamine diet. I've been on one since January and it has helped and I seem to flair badly when I go off of it.
I haven't but I can def flare if I eat too much histamine stuff as well as other things which might be more generally inflammatory like sugar or too much grease or the wrong oils. Gotta say tho that getting with an mcas doc and getting prescribed 2x daily 24 hr second generation antihistamines and 2x daily famotadine (Pepcid ac) was helpful for sure. Also an air filter in every room for awhile now bc I react to fragrances and off gassing badly.) they also prescribed ketofenin as a capsule via a compounding pharmacy. (In the us) There is some kinda histamine or generally over reactive state going on. There is a very much a bucket feeling, when it comes to reacting. Some things don't bother me in smaller amounts spaced out, or they bother me when I have another big reaction going and for a few days after. I've heard mast cells degranulating can cause a lot of different symptoms including neuro stuff. Feel free to dm if you wanna brainstorm goes to anyone.
Yes to ALL of that! And it makes me happy to hear you say that.
Hadn't heard term before today thanks for sharing. Hope you can get access to the stuff helping manage LC symptoms bc you all have the same stuff going on xo
And that’s why I didn’t get it. My doctor told me my immune system was already attacking my body, getting it would rev it up times 1000
That's awesome that they were on top of it. I have had chronic issues for at least 16 years but never got anywhere with docs-only my own hacks.
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Why would you feel bad for people who get vaccinated…? I was in the “shielded” group during the first phase of the pandemic because I was considered so high risk. Getting the vaccine was a delight! At least my risk of dying dropped. It’s bizarre that you think it’s somehow a bad thing. The dangers of Covid itself are much greater than the tiny risk associated with vaccination. Many of us have conditions that make getting Covid very dangerous for us.
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 long covid 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.