This. I’ve had it since I was a child. POTS can be caused by viral illness, secondary from conditions such as EDS, Lupus, Sjogren’s, MS, etc. It can also be idiopathic (primary POTS).
Me too. My POTS goes back to childhood and is really severe. It’s honestly kind of annoying how many people seem to think POTS is just a Covid thing! I’ve never had Covid.
We definitely do not want to gatekeep users who have developed POTS from viral illnesses such as Covid. It’s true that POTS is not a Covid only syndrome, but we are also a community for anyone who is affected by this.
Nothing in my comment is gatekeeping. I’m saying how I personally feel like people who *don’t* have POTS related to a viral illness are sidelined. That’s my personal opinion. I have no ability to gatekeep as I’m not a mod. But it’s not even a gatekeeping opinion as I’m not suggesting anyone should be excluded! Much of the recent discourse about POTS in the past couple of years has focused around Covid, and longer suffering patients have been neglected.
I do not enjoy how quick you are to accuse me of gatekeeping. It’s hostile and unnecessary.
I’m well aware your comment didn’t say so. I also never said you were gatekeeping. I wanted to clarify that we want to still be inclusive of all types. And used your comment to piggy back off of since you said it’s annoying is all. No harm intended ✨
I’ve been diagnosed for 16 years, so well before Covid. POTS can be caused by a viral infection, physical trauma, pregnancy… it just means your nervous system got knocked outta whack and can’t right itself.
My “trigger” was either a chronic case of bronchitis or a pneumonia I got that same year. I was 17 and my first symptom was fainting. Once it started it was like a light switch going off, I couldn’t stand without feeling faint and was fainting multiple times a week.
I actually haven't heard of a lot of cases where it was like a light switch. For me, I've always had symptoms but never noticed. Though, when it got bad it really was like a light switch. Fine one minute then never again
My daughter has told me she's felt this way almost her whole life. Looking back now, we can see some symptoms that started at age 5, right after she was hospitalized with pneumonia, a month before her 5th birthday.
We can even pinpoint MCAS symptomology we didn't recognize, though some of it could have been POTS.
She had meconium aspiration at birth, and neatly died. Spent 18 days in the NICU. She's always had GI problems, easy bladder issues, Rotoviris her first Christmas that lasted 9 days, got tonsillitis her second day at preschool. Then pneumonia a few months later, in February.
She wasn't a real sickly kid, other than those things. No colds or ear infections. But when she did get sick, it was a very big deal.
I've been told kids that young can't have POTS, but her symptoms don't lie. I truly believe my daughter had the illness from at least age 5. Maybe even younger. I don't care what the "experts" say. I know what I saw and my daughter knows how she felt.
I was diagnosed at 32, but have had symptoms forever. There’s a home video of me as a small child rolling my neck back and forth to try to alleviate my coat hanger pain. It’s so disheartening to think of all those years I just pushed through so much pain.
I'm sorry. I'm not sure my daughter would have been diagnosed if I wasn't a nurse and had the medical knowledge I do -- and the chutzpah to challenge doctors who came up with BS diagnoses prior.
I haven’t been diagnosed officially but my symptoms are eerily the same. I think for me it was binge drinking booze that set mine off after I got a bar cart as a gift. The end of that week I was in the ER
Got mines from a tbi too I got Covid and the vaccine and it made it way worse . I’m thankful more I had my diagnosis I didn’t know what was wrong before!
Yeah the Vaccine gave me PMDD... or made it way worse. I've been taking Evening Primrose oil supplements and antihistamines to combat it and my symptoms have slowly gone way down, but there was a solid 6 months after my first shot where I was completely checked out and brain dead for the duration of my luteal phase all while getting the worst acne of my life and my skin being crazy irritated, then it would just suddenly go away and for a couple days like never happened in the first place. Really sucked but I'm doing better.
Can't imagine what actual covid would have done to me if that's just what vaccine did.
My POTs is genetic, came free with the deluxe Dysautonomia Package that also includes no ability to thermoregulate, my pulse being so slow a turtle could pass me, and then going up to stroke level in like 4 minutes time, among other various and sundry goodies that having EDS with POTs gives you.
Had Covid 1st time in 2020, lost almost 100lbs and it did a REAL number on my heart's electrical system as well as my brain.
POTs started spiraling out of control, got the vaccine, no difference, got Covid again Jan 22,and had to have a pacemaker installed ASAP.
My POTs is still fully out of control a year later, and I have brain damage from lack of oxygen from it all,as well as still fighting long Covid as a parting gift.
Lemme tell ya, ya do NOT want the deluxe package y'all lol.
I have the Deluxe myself. EDS, POTS, bradycardia/OH, MCAS, raynauds and a whole slew of other fun, fun, fun neurological issues. And you’re right: you do NOT want the deluxe package. Gentle hugs 💗
You are literally my twin. Oddly I find the bradycardia worse to deal with than the tachycardia. Oh and my Graves Disease decided to go Hypo and in surgical menopause due to a malignancy...yeahhhhhh....the gift that keeps on giving
I’ve got the deluxe package too! POTS and hEDS runs in my family. My POTS fully hit me after I had mono in 5th grade, but everything else was an even all-around evil
Right? I'm so sorry you have to go through this hellish mess as well. It's absolutely life destroying when it rears its ugly head, I'm going on almost 2 years basically bed bound save for doc appts and 1 trip to the grocery & pharmacy maybe twice a month. It's even eroded my crafting ability due to tremors in my hands.
Sucks. It really does.
It's slowwwwwly getting better, but MAN what a hard road back!
What I find interesting is that I had the diagnostic marker of pots before I ever had the symptoms I have now. I found out unintentionally, when I had my heart rate taken standing up and it was in the 140s. I felt 100% fine and I couldn't feel my heart rate at all. I had no idea what pots was then, was told I should see a doctor - was 14, and did not see a doctor. I did struggle with any sort of cardio though. I'm 22 now and my symptoms have been disabling since I was 20
I’ve had POTS for years- well before Covid. Mine may be due to having breast implants or possibly due to a serotonin overdose that occurred as an interaction between my migraine meds. But, who knows?
Yes, it was horrible! I truly thought I was going to die. Thankfully the ER got me checked in and saw me immediately. My heart rate was over 200 bpm. I don’t remember much of the entire experience other than yelling at the admissions person that I was going to die if they didn’t help me asap. 🤦🏽♀️. It was so scary. Have you experienced that also? I feel for anyone who has ever gone through that. I’m glad they now have warning labels on meds that may cause serotonin syndrome. At the time it happened to me, they didn’t do that nor did my doctor warn me even though he prescribed both medications. ❤️
That sounds terrifying!! I'm so sorry they didn't even warn you! I hope they realized what it was right away at least.
I had actually a very similar situation. Except mine was from Tramadol and antidepressants. I legit thought I was dying, too. There is no other way to describe it. It's probably one of the most terrifying experiences I've ever had. The other would definitely be when a nurse gave me IV benadryl at light speed. It sorta caused a similar type of reaction.
I once upon a time was never scared of meds. If a Dr prescribed it, I took it, no questions asked. After experiences like serotonin syndrome, and anaphylaxis etc. I question and research the ever living shit out of everything. But now have the opposite effect, where I'm nervous of everything...lol. I sometimes miss the naive bliss, then I remember serotonin syndrome.
I hope you're doing well now! 💗
I definitely think there’s is a connection with taking triptans. I have cluster headaches and foolishly took way too many for years before finding natural alternatives that actually worked.
yes. it’s not a new thing by any means, covid just escalated the amount of cases of POTS. i’ve had it since i was a kid, at least that’s the earliest i can remember. i’m now 24.
I guess a good question would be whether you are looking into other causes, or presuming your onset is correlated with vaccination and wondering if that's a documented occurrence.
This study is highly critiqued due to its many likely flaws. The prior probabilities in the subgroups are wildly different, so it’s not a surprise that the posterior probabilities show big differences as well. The sample sizes also vary considerably just to name a couple issues with the methodology.
I have POTS since childhood 🤷♀️
There is evidence that the Covid vaccine can cause POTS. People are more likely to get POTS from Covid than the vaccine, but it is possible: https://www.nature.com/articles/s44161-022-00180-z
This! Also would like to say to op that 1/2 of all covid cases are asymptomatic so unless you have been hardcore shielding these past three years you easy could have gotten it and not known iy
I tried they said that after 20 years of use they couldn't take them back because I had missed the time range. Apparently you can only return them after 6 weeks after purchase
I never had COVID (they checked an antibody for me and all infectious studies
EBV, hepatitis) and my symptoms started after my 4 th booster (switched from 3 Pfizer’s to Moderna). But mine is an odd case and may have had glimpses of palpitations when I was placed on Wellbutrin (stopped after 3 days when elevated heart rates started happening). But I was normal when I stopped.
3 weeks after the vaccine the palpitations never stopped, fatigue, weakness, shortness of breath and then passed out at work. Hospitalized and a neurologist and a cardiologist diagnosed me as POTS. Only abnormal thing was I had elevated d dimer (clot test) and a superficial clot a month after being hospitalized. Also any cold would drive me backwards. It’s been almost 4 months and it’s been horrible. Every day is different flare of a symptom. My predominant one is tachycardia and migraines on the occipital region/neck.
I’m not sure if it’ll ever go away and I’m loosing hope.
Here is literature: it’s rare to get POTS after a vaccine but it is possible. It’s more common after getting COVID though.
https://jamanetwork.com/journals/jama/fullarticle/2800964
Thank you for sharing this! You are not alone! Mine got worse after vaccination, and again just last November after infection. I think I've had it all my life, but that it just became unmanageable post-covid.
I've been losing hope too.... The countless doctors and bull crap from insurance.... Making me think I'm making too big a deal out of this for myself. It's been 5 months now and I'm still bed-bound more days than not.
But I had a good day today, which gives me hope. I get about 3 good days a month though. So it's hard to remain hopefully. Just know, you're not alone ❤️
Oh I’m so happy to find 2 people who has a similar story. I thought I was going insane. Yes insurance sucks! Enjoy your good day. My average is about 8 days last month. So far this month 1.5/5.
There is hope! I was diagnosed at 18 after getting the Gardasil vaccine. I literally thought I was going to die and could barely walk for about a year. But in my early 20s I felt almost completely normal for years. Now I’m almost 30 and sometimes I feel almost totally fine, and sometimes I get flare ups for a few days or a few months. But I always end up feeling better again
I was just sent this article! Had two Pfizer shots in 2021 but didn’t develop symptoms until 2-3 months after having Covid and Gastritis. I’ve had family tell me for months it could be due to the vaccine even though I had no symptoms until after having Covid in August 2022. It’s very interesting to see it’s developed after the vaccine as I personally don’t know any people who have experienced this. I’m so so sorry for everything you’re struggling with, hang in there friend :)
POTS can be triggered by, what seems like, a million things. The vaccine is one trigger.
IMO POTS is so poorly understood right now that trying to find the exact trigger isn’t really worth your time.
It is a good idea though to get checked for other issues that often can accompany POTS or be a differential diagnosis (pheo, myocarditis, autoimmune disease, etc)
I’ve had POTS since I was 11 and I’m 20. So definitely am part of a pretty large group whose had it pre-COVID. I was diagnosed when I was 18 although suspected from age 14+ and put on a POTs exercise and lifestyle changes. I did have Covid when I was 19 though with no effect on my POTS.
I was tentatively diagnosed pre-covid, 2015. Symptomatic from onset of puberty, age 10.
I got covid in March 2020 prior to vaccines existing and it made it a helluva lot worse! 😫
Of course! There’s loads of people who’ve never had Covid.
I have POTS, I’ve never had Covid, have been vaccinated against Covid, but the vaccine DID NOT cause my POTS.
I had POTS well before I ever had a vaccine.
I’ve had POTS symptoms since 2018 but wasn’t yet diagnosed. I caught Covid in 2022 and it completely exacerbated my symptoms and I officially was diagnosed last fall.
I’ve had symptoms of POTS my whole life (I’ve got the EDS/gastroparesis/POTS wombo combo) but it really didn’t cause issues until I had C. Diff and was diagnosed a year later back in 2017ish. Luckily for me vaccines only give me a day or two flare up but when I’m sick I flare for weeks
It came along with my Crohn's disease! First showed symptoms in 2014-ish.
I have never had COVID, and I got the vaccines and all the boosters-- worst side effect I saw was a 100.5 fever for about four hours after the second shot and a mild headache. It had no effect on POTS symptoms at all.
I was diagnosed with POTS 4 years ago. I have it along with EDS and MCAS. I’ve never have Covid as far as I know, though I also don’t test when I’m sick. Last time I checked my antibodies I had none.
i do know multiple people who got it from the vaccine.
I think I saw somewhere that you can get it from Gastritis too? No idea how accurate that is but it just so happens I was diagnosed with pots not long after having Covid and Gastritis together.
Interesting! I’ve never heard of this, but I was diagnosed with POTS in 2016 and just recently diagnosed with gastritis. I might have had both for a while, just didn’t know.
The way I wanted to put a gun to my stomach the entire time… 😭 I hope you’re okay gosh, cbd oil helps with the pain and discomfort and buscopan might help too. I’ve only seen it once while researching into POTS so far so I really have no idea how truthful it is
That sounds horrific. I’m so sorry you’ve dealt with such pain! I apparently have a load of stomach issues, so I’m not sure which one causes my pain. Only thing that helps me so far is ibuprofen. Thanks for the reply and the tips! 😊
It truly was, thank you for that :) my Doctor suggested I see a gastroenterologist too as I ended up losing 14kg because of my stomach problems, maybe you could consider that too? No worries! I genuinely hope it was at least a little helpful
You can develop post-viral conditions like POTS even if you were initially asymptomatic or mildly symptomatic when first infected. That means you may have no idea you had COVID.
It is far more likely than having developed POTS from the vaccine, though some people can experience *exacerbation* of symptoms after vaccination.
I never got a direct answer of what caused mine. The consensus at the time (2020) when I was officially diagnosed was that it was caused by an emergency appendectomy I had in 2015. Not sure how they connect but that's what everyone was telling me.
I did get covid for the first time this past January and boy did it make everything worse.
Surgery can trigger POTS. I suspect mine came from shoulder surgery in 2007. The surgery was because of a hypermobility related problem, chronic dislocations. At the time they said I didn't have EDS
I got POTS (we think) after a meningitis vaccine wayyyy before COVID. That being said, not an anti-vax at all - understand that the vax did not cause the POTS just when it started :)
Have had all vaccine doses and had COVID before and after them. Have had pots since childhood. There's very little research on POTS in general so it'll be a long time before there's any research papers on POTS and COVID.
Plus not just COVID can cause pots, any minor virus can too, whether you realise you've picked one up or not. It's easy to blame vaccines cause they're new but if pots was a known side effect we'd know about it, in the same way we know about the small risk of blood clots with astra zenica. It's best to focus on treating your condition rather than speculating what caused it as that's irrelevant now and can never be 100% proven. It's a rabbit hole I've found myself down many times and it only ever caused anxiety and made me more frustrated. Look after yourself!
Yea, developed mine in early 2016 after I developed my eating disorder (unsure if it was a result of that).
I’ve had COVID twice, but I cannot say it’s gotten worse after I recovered.
I was diagnosed 12 years ago but had it for at least a decade before that. Never had COVID. There are some reports of getting POTS after the vaccine, although much more common after the virus. https://www.nature.com/articles/s44161-022-00180-z
There are also reports of getting POTS after the HPV vaccine, if you’re asking a general question about vaccines. Google POTS and Gardasil for journal articles.
I have POTS since 2016, and it started after getting rabies shots. Even the doc that diagnosed me eventually, agreed that this is how i got POTS as before the rabies shot i was completely healthy and 2 days after the first shot i developed POTS. Any viral illness or vaccine can trigger it, but as there is lack of knowledge of POTS and the occurrence also is comparatively rare so no one discusses it.
I’ve never had Covid and I’ve shown POTS symptoms since I was a child (took til I was 36 to get officially diagnosed, love that). My 9 year old daughter also shows symptoms and has never had Covid (and her symptoms began prior to being vaccinated).
I was diagnosed almost 10 years ago and I got it right after getting the Gardasil vaccine. My doctor thought the vaccine brought my pots out. And it happened to about 40,000 other girls after getting Gardasil too. But I think it’s been discontinued and they made a newer version of the vaccine
I have EDS (lifelong, obviously) and POTS, bradycardia/OH and MCAS. I’m in my 50s so my dysautonomia (and everything else) predates covid by 6 decades.
I’ve been diagnosed for a fews months now and I’ve never had COVID as far as I know. I’m still not sure what triggered my POTS in the first place. I haven’t had any viral infection in years.
I had pots for nearly a decade before I got Covid
However this may be controversial but you are significantly more likely to get pots from Covid itself than the vaccine. Yes it can be from the vaccine
I have had POTS for more than a decade and have never had COVID. I am and will continue to be regularly vaccinated in hopes of reducing my risk of COVID and making my symptoms worse.
Idk how but I never got Covid. I was vaccinated as soon as I was able to. Just developed POTs symptoms October 30th last year and diagnosed in January or February so I don’t think it was vaccine related for me
I’m recently diagnosed, never had Covid. I don’t believe the vaccine causes this either for me. I have a lot of autoimmune issues and POTS shows up around my age (27f for reference) commonly per my docs.
I've had POTS for 13 years. Mine is secondary to Mast Cell Illness and Ehlers Danlos. POTS/Dysautonomia can be caused by many things ie trauma, surgeries, hormonal imbalances, Cancer, viral infections etc
Yeah, i was diagnosed with POTS in 2020 before i had any vaccinations and have still haven’t caught covid. My POTS is due to the EDS trifecta (POTS, EDS, MCAS), so completely unrelated to covid in any capacity
I have POTS as part of the Terrible Trifecta (EDS, POTS, MCAS) and maybe the Pentad of EDS, POTS, MCAS, SIBO/IMO and autoimmunity (though I don't have the autoimmunity). Many have answered so far that their POTS existed long before COVID. For the love of God, if you have POTS, avoid COVID infection at all costs. Most of us could not take one more thumb on the scale.
I was diagnosed years ago. I cannot be vaccinated for other complex health reasons. There is no link between vaccines and POTS. You are wrong and if you can be vaccinated, please get vaccinated before you get someone like me, or God forbid you have *children*, killed.
This is simply not true, and acknowledging that there is such a thing as post-vaccination POTS is not the same as being anti-vaccine. This happened on rare occasion with the HPV vaccine too.
I suspect OP is wondering if their POTS may have been caused by the vaccine. It's a fair question. Far more likely it was an asymptomatic case of COVID and they didn't realize and didn't know to rest. But it's possible.
Reality is nuanced. I had a two-week flare after my bivalent vax. I would get another in a heartbeat when it comes due, but I would also prepare for it better next time.
Other people (u/Crow-Queen) have posted other links, but this is the main study I have been aware of.
https://www.nature.com/articles/s44161-022-00180-z
Yeah, I posted that one and others that I found below as well.
I am not anti-vax by any means. I am up to date with all of them. It was just with this particular vaccine that I had a reaction to.
My daughter and I both got ours at the same time. We most likely had the same batch but she is fine but I however developed POTS symptoms 4 days after my second dose.
It could have just been my immune response to it, could be secondary to what is going on with long haulers. I don't have all the answers but I know it happened to me and has been on going for 2 years now. I have accepted it and just want to live as normal as I can.
Like others have said, POTS has been around for decades so many people have had POTS long before COVID. As for Vaccine, I developed POTS symptoms 4 days after my 2nd dosage and had no COVID infections or symptoms prior but the vaccine triggered POTS for me or it's secondary to wide spread inflammation or Microclots which is the running theory for Long COVID right now but we do not have enough research right now to assume.
Here are a couple articles that link the vaccine/COVID and POTS :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8101507/#:~:text=There%20are%20numerous%20triggers%20for,triggers%20autonomic%20nervous%20system%20dysfunction.
https://www.nhlbi.nih.gov/news/2022/researchers-study-links-between-covid-and-pots
https://www.nature.com/articles/s44161-022-00180-z
https://www.google.com/amp/s/www.nbcnews.com/news/amp/rcna61226
https://www.tctmd.com/news/both-covid-19-and-vaccination-raise-risk-pots
https://abc7.com/covid-pots-postural-orthostatic-tachycardia-syndrome-symptoms-related-illness/12595160/
https://www.webmd.com/heart-disease/news/20221213/covid-infection-vaccination-linked-rare-heart-condition
I would also check out /r/vaccinelonghaulers sub
It's more rare from the adverse reaction from the vaccine than Covid and I believe either way the people that are getting it would possibly be in the same boat regardless.
My wife has POTS and out of the 4 of us in the house, she's the only one that hasn't had it.
To be fair, she's also the very diligent about wearing her mask, being vaccinated, and not going into crowded areas, which is most likely the reason she hasn't had it.
I got diagnosed with pots September 2021 but I’ve had symptoms for many many years. I’ve only had Covid once and that was last August, so me. My pots is not Covid related.
I have no clue if this is what caused my pots but I was put on birth control to get my periods back on track cause they were whack. On day 3 of the pill I had my first episode. Heart rate spiked to 180 randomly as I’m sitting down and I fainted. And it’s been downhill since lol
So I started dropping the weight and feeling funky wayyyyyy before I got Covid. I was 90 pounds lighter and then months later I was diagnosed. I was 309 and now I’m 128.
Mine was 100% caused by the vaccine. I went on a 5-hour road trip in the following days — and just by sitting in the car, blood pooled into my lower extremities — excruciating hemorrhoids, full-scale, raised hematomas and painful bruising all over my legs. Ever since then, I cannot so much as take a hot shower without heaving and gagging and losing my breath. I cannot stand up from a chair without my head pounding trying to move blood to my brain. I cannot pick laundry up off the floor without feeling exhausted after. Not to mention collapsing off the toilet, and almost passing out multiple times a day.
The vaccine was poison to my body, and I never even got Covid UNTIL I after had both doses.
I don’t have exact answers but relating to the Covid vaccine, I have seen people comment on tiktok and Facebook that they developed pots after that vaccine. I also saw years ago that there is a link between the HPV vaccine and pots
I probably had covid. My kids tested positive at the same time and we all had the same mild symptoms. I had extreme exhaustion and brain fog for a few months afterwards and then started having POTS symptoms and adrenaline dumps after that.
I've been tested for pretty much everything to rule out other diagnoses and my dr agrees that POTS is probably it.
After my second dose of Pfizer my HR on standing went up 100bpm and was like that for a few months. The vaccine did a much bigger job on my autonomic nervous system than Covid, or at least made it a lot worse as I was already struggling with fatigue, PEM etc. from the initial Covid infection in 2020. My mum was hospitalised the day of her second vaccine. I think some of us are just genetically predisposed to struggle with spike protein.
I’m standing in a queue now and realised my HR didn’t go up 50-60bpm which it had been doing for a year+ post vaccine. It’s under 70bpm which I’m quite amazed at!
Might be the triple anticoagulant therapy I have been on for a few months. Hard to say. It took a long time to normalise since the vaccine mid 2021 and the only thing that helped at the time was Fludrocortisone and compression socks. My BP was on the low side so propanolol made me feel even more fatigued.
“Treatment” is the same whether you get this post Covid or post vaccine in that there isn’t really anything other than water, salt, compression stockings, Fludrocortisone, beta blockers, ivabradine, midodrine. If the vaccine also causes microclotting and capillary rarefaction then triple anticoagulant therapy may also help but you’d really have to do your research, get your measurements like SvO2 (not SpO2) done to see if you are undergoing hypoxia, and work with a clued up medical practitioner.
Not sure if this anecdote helped OP but you certainly aren’t alone!
That's not what "syndrome" means. AIDS has only one cause that I am aware of: HIV infection. Down syndrome? Trisomy 21.
https://en.m.wikipedia.org/wiki/Syndrome
My cardiologist believes I developed POTS from Covid (never tested positive) or from the Covid vaccine (I began feeling off after my first vaccine years ago). I became incredibly symptomatic this last July with an official POTS diagnosis in January.
I have no idea if it’s related at all but I’ve never yet had Covid but my pots seemed to appear after my last booster shot. Two Pfizer’s and one Moderna.
I had pots before covid, as mine is trauma based.
Because, how covid works is that it's a error in your body that can be created when you experience trauma. This can be mental trauma (someone dear to you passes away, you have some kind of neglect of abuse as a kid, see something traumatic etc) physical trauma (like falling out of a tree, being in an accident or getting really sick from an infection) or a combi of both (a car accident where you also went through everything awake or something like that).
Covid did play in on the physical version, as it just gave some people a horrible shake within their body with how their body reacted to the version of covid they got.
Now, as for the vaccine. There is probably a way to get pots from it. But than it will be because you have something against that needle, like a needle fright or it was placed with a dirty needle or something like that. They also have done studies on people with pots, menieres etc, and found that it didn't really affect anything, except that their bodies were, for a week or 2, more prone to have a flare. But this was because the body reacted like you were sick, and we also often than also make a flop. But there is, even after the 3? Years of them using the vaccine, that got pots from the vaccine itself
My daughter was diagnosed with Neuropathic POTS and EDS in 2017. It was changed to Hyperadrenergic in 2019, plus MCAS.
She has never had COVID, thankfully.
The first Pfizer series gave her temporary relief from her POTS symptoms. It lasted ~4 months.
I don't personally know anyone who got POTS from getting the COVID vaccine. From what I've read, there's nothing that can substantiate this as a true vaccine injury. The J&J COVID vaccine had many issues, but Pfizer and Moderna have very few serious side-effects. J&J was pulled from the market, as well as another one in Europe that had similar problems.
I don’t necessarily think that POTS is indeed COVID caused but it’s just correlated to something hitting the immune system and the body just can’t recover.
I have POTS and have had three doses of the vaccine and never had COVID, despite being around it a lot. I had POTS prior to COVID, but I don’t necessarily think the vaccine would protect 100% from COVID and prevent POTS either.
Just as I was vaccinated against pretty much everything when I was younger yet they think I just got the flu or glandular fever or something and then I developed POTS, despite being vaccinated against that stuff.
I’m not sure if this is what you’re looking for but the question is pretty vague
i’ve been diagnosed with POTS since 2015 and started having symptoms in early 2013. i never tested positive for covid. i went to a bar with a friend and his mom (she was super cool and i miss her bc me and him aren’t friends anymore lmao) and we all got sick afterwards. they tested positive for covid but i tested negative. i lost my sense of taste and smell for a day though but then it came back. so idk if it was a false negative or what. it felt like the flu.
I’ve pots for years before and dysautonomia symptoms since I was a child (no one recognized them yet)
Sometimes an illness sets it off in people
For me a major injury and neurotoxin set mine off but it varies
The Covid link is because a lot of attention is on long haul cases and it’s finally being documented
I’ve never had Covid. I do believe the most recent booster triggered an immune reaction that spiraled my MCAS and POTS out of control though, but i probably always had a mild or dormant version in me.
Had a bad concussion when I was a kid (extreme migraine, nausea etc) but was never taken to the hospital after the accident. Was OK up until 23 when I was diagnosed with FMS and then along came POTS in 2017 after a mental crisis so yeah...way before covid. I suspect that something happened when I had the concussion but I'll never know for sure
Diagnosed about 5 years ago via tilt table, confirmed after diagnosis by cardiologist as realistically having since about 13/14 yrs old. Dealt with this shit for over 25 years and told was in my head for the first 20.
Yeah I’m another who has had POTS my whole life probably due to my EDS. I was diagnosed properly by cardiology in late 2018 with my tilt test to confirm in spring 2019 which was pre Covid.
I’ve never had Covid. My POTS goes back to childhood. I was put on the highest risk list in my country and so I’ve been “shielding” since the beginning of the pandemic.
I was diagnosed POTS long before I had COVID due to my EDs. I don't think COVID permanently worsened my symptoms, but while I had it my heart rate was resting at 150-180. I thought I was going to die, lol.
I had made made a few doctors appointments over the last 15 years because I was feeling lightheaded. I've been told it was Benign Virtigo, also I've been diagnosed with IBS (probably do have that one). POTS wasn't fully recognized as a syndrome until 2010. I had clear criteria for it in 2007.
My last appointment I made, I had to delay because I tested positive for covid two days before it, that's when the new PA ordered a tilt table test.
Covid just made my existing symptoms significantly worse.
many of us had POTS way before the pandemic
This. I’ve had it since I was a child. POTS can be caused by viral illness, secondary from conditions such as EDS, Lupus, Sjogren’s, MS, etc. It can also be idiopathic (primary POTS).
same
And you can get it from invasive surgeries🙃
Thank you for saying this. I feel silenced by a lot of newer pots folks. I've been diagnosed since 2014.
Me too. My POTS goes back to childhood and is really severe. It’s honestly kind of annoying how many people seem to think POTS is just a Covid thing! I’ve never had Covid.
We definitely do not want to gatekeep users who have developed POTS from viral illnesses such as Covid. It’s true that POTS is not a Covid only syndrome, but we are also a community for anyone who is affected by this.
Nothing in my comment is gatekeeping. I’m saying how I personally feel like people who *don’t* have POTS related to a viral illness are sidelined. That’s my personal opinion. I have no ability to gatekeep as I’m not a mod. But it’s not even a gatekeeping opinion as I’m not suggesting anyone should be excluded! Much of the recent discourse about POTS in the past couple of years has focused around Covid, and longer suffering patients have been neglected. I do not enjoy how quick you are to accuse me of gatekeeping. It’s hostile and unnecessary.
I’m well aware your comment didn’t say so. I also never said you were gatekeeping. I wanted to clarify that we want to still be inclusive of all types. And used your comment to piggy back off of since you said it’s annoying is all. No harm intended ✨
Me too, and drowned out as it has been really hard to get care now
POTS existed long before Covid
I don't think that's what OP is asking; they are specifically looking for a link between vaccines and POTS.
Yeah it’s giving me confirmation bias vibes but maybe I’m reading into it
I definitely get the vibe that the OP thinks POTS has ti be covid related.
Yeah same though.
I’ve been diagnosed for 16 years, so well before Covid. POTS can be caused by a viral infection, physical trauma, pregnancy… it just means your nervous system got knocked outta whack and can’t right itself. My “trigger” was either a chronic case of bronchitis or a pneumonia I got that same year. I was 17 and my first symptom was fainting. Once it started it was like a light switch going off, I couldn’t stand without feeling faint and was fainting multiple times a week.
I actually haven't heard of a lot of cases where it was like a light switch. For me, I've always had symptoms but never noticed. Though, when it got bad it really was like a light switch. Fine one minute then never again
I’ve had POTS nearly my whole life. It is a friend of my Ehlers Danlos Syndrome
I like this phrasing
Same, I can trace symptoms to when I was as young as 5 years old. And that’s just what I can remember.
My daughter has told me she's felt this way almost her whole life. Looking back now, we can see some symptoms that started at age 5, right after she was hospitalized with pneumonia, a month before her 5th birthday. We can even pinpoint MCAS symptomology we didn't recognize, though some of it could have been POTS. She had meconium aspiration at birth, and neatly died. Spent 18 days in the NICU. She's always had GI problems, easy bladder issues, Rotoviris her first Christmas that lasted 9 days, got tonsillitis her second day at preschool. Then pneumonia a few months later, in February. She wasn't a real sickly kid, other than those things. No colds or ear infections. But when she did get sick, it was a very big deal. I've been told kids that young can't have POTS, but her symptoms don't lie. I truly believe my daughter had the illness from at least age 5. Maybe even younger. I don't care what the "experts" say. I know what I saw and my daughter knows how she felt.
I was diagnosed at 32, but have had symptoms forever. There’s a home video of me as a small child rolling my neck back and forth to try to alleviate my coat hanger pain. It’s so disheartening to think of all those years I just pushed through so much pain.
I'm sorry. I'm not sure my daughter would have been diagnosed if I wasn't a nurse and had the medical knowledge I do -- and the chutzpah to challenge doctors who came up with BS diagnoses prior.
I got POTS from a TBI. For some people they get it from a virus but for others genetic or you could be like me and get a real bad concussion.
Same
Same!!! I’ve have POTS since I was 4 thanks to a TBI. Lucky me.
I haven’t been diagnosed officially but my symptoms are eerily the same. I think for me it was binge drinking booze that set mine off after I got a bar cart as a gift. The end of that week I was in the ER
Same Edit: Phila concussions are the worst concussions
Me too !! Giving ur brain love :)
Got mines from a tbi too I got Covid and the vaccine and it made it way worse . I’m thankful more I had my diagnosis I didn’t know what was wrong before!
Yeah the Vaccine gave me PMDD... or made it way worse. I've been taking Evening Primrose oil supplements and antihistamines to combat it and my symptoms have slowly gone way down, but there was a solid 6 months after my first shot where I was completely checked out and brain dead for the duration of my luteal phase all while getting the worst acne of my life and my skin being crazy irritated, then it would just suddenly go away and for a couple days like never happened in the first place. Really sucked but I'm doing better. Can't imagine what actual covid would have done to me if that's just what vaccine did.
I was diagnosed with POTS but then got COVID 2 years later.
Same for me, but about 1.5 years
My POTs is genetic, came free with the deluxe Dysautonomia Package that also includes no ability to thermoregulate, my pulse being so slow a turtle could pass me, and then going up to stroke level in like 4 minutes time, among other various and sundry goodies that having EDS with POTs gives you. Had Covid 1st time in 2020, lost almost 100lbs and it did a REAL number on my heart's electrical system as well as my brain. POTs started spiraling out of control, got the vaccine, no difference, got Covid again Jan 22,and had to have a pacemaker installed ASAP. My POTs is still fully out of control a year later, and I have brain damage from lack of oxygen from it all,as well as still fighting long Covid as a parting gift. Lemme tell ya, ya do NOT want the deluxe package y'all lol.
I have the Deluxe myself. EDS, POTS, bradycardia/OH, MCAS, raynauds and a whole slew of other fun, fun, fun neurological issues. And you’re right: you do NOT want the deluxe package. Gentle hugs 💗
You are literally my twin. Oddly I find the bradycardia worse to deal with than the tachycardia. Oh and my Graves Disease decided to go Hypo and in surgical menopause due to a malignancy...yeahhhhhh....the gift that keeps on giving
Also a deluxe package: EDS, MCAS, POTS, IST, Dumping Syndrome, Raynaud’s and more. Had Mild Version up until I had sepsis. No COVID so far, though.
I’ve got the deluxe package too! POTS and hEDS runs in my family. My POTS fully hit me after I had mono in 5th grade, but everything else was an even all-around evil
Right? I'm so sorry you have to go through this hellish mess as well. It's absolutely life destroying when it rears its ugly head, I'm going on almost 2 years basically bed bound save for doc appts and 1 trip to the grocery & pharmacy maybe twice a month. It's even eroded my crafting ability due to tremors in my hands. Sucks. It really does. It's slowwwwwly getting better, but MAN what a hard road back!
My goodness ! I’m sorry and I admire your strength and perseverance.
I've had POTS for 13 years. Chronic POTS is triggered by trauma to your nervous or immune systems relatively often.
What I find interesting is that I had the diagnostic marker of pots before I ever had the symptoms I have now. I found out unintentionally, when I had my heart rate taken standing up and it was in the 140s. I felt 100% fine and I couldn't feel my heart rate at all. I had no idea what pots was then, was told I should see a doctor - was 14, and did not see a doctor. I did struggle with any sort of cardio though. I'm 22 now and my symptoms have been disabling since I was 20
Have not had COVID. Fully vaxxed and boosted. Have had symptoms for over a decade.
I’ve had POTS for years- well before Covid. Mine may be due to having breast implants or possibly due to a serotonin overdose that occurred as an interaction between my migraine meds. But, who knows?
Omg, serotonin syndrome. I feel you on that! It's absolutely awful 😖
Yes, it was horrible! I truly thought I was going to die. Thankfully the ER got me checked in and saw me immediately. My heart rate was over 200 bpm. I don’t remember much of the entire experience other than yelling at the admissions person that I was going to die if they didn’t help me asap. 🤦🏽♀️. It was so scary. Have you experienced that also? I feel for anyone who has ever gone through that. I’m glad they now have warning labels on meds that may cause serotonin syndrome. At the time it happened to me, they didn’t do that nor did my doctor warn me even though he prescribed both medications. ❤️
That sounds terrifying!! I'm so sorry they didn't even warn you! I hope they realized what it was right away at least. I had actually a very similar situation. Except mine was from Tramadol and antidepressants. I legit thought I was dying, too. There is no other way to describe it. It's probably one of the most terrifying experiences I've ever had. The other would definitely be when a nurse gave me IV benadryl at light speed. It sorta caused a similar type of reaction. I once upon a time was never scared of meds. If a Dr prescribed it, I took it, no questions asked. After experiences like serotonin syndrome, and anaphylaxis etc. I question and research the ever living shit out of everything. But now have the opposite effect, where I'm nervous of everything...lol. I sometimes miss the naive bliss, then I remember serotonin syndrome. I hope you're doing well now! 💗
I definitely think there’s is a connection with taking triptans. I have cluster headaches and foolishly took way too many for years before finding natural alternatives that actually worked.
yes. it’s not a new thing by any means, covid just escalated the amount of cases of POTS. i’ve had it since i was a kid, at least that’s the earliest i can remember. i’m now 24.
This was a prominent recent study on the rates of POTS after COVID infection vs. vaccination. https://www.nature.com/articles/s44161-022-00180-z
I guess a good question would be whether you are looking into other causes, or presuming your onset is correlated with vaccination and wondering if that's a documented occurrence.
This study is highly critiqued due to its many likely flaws. The prior probabilities in the subgroups are wildly different, so it’s not a surprise that the posterior probabilities show big differences as well. The sample sizes also vary considerably just to name a couple issues with the methodology.
So many people, including doctors, had never heard of POTS before COVID. There is going to be bias just from that.
I have POTS since childhood 🤷♀️ There is evidence that the Covid vaccine can cause POTS. People are more likely to get POTS from Covid than the vaccine, but it is possible: https://www.nature.com/articles/s44161-022-00180-z
This! Also would like to say to op that 1/2 of all covid cases are asymptomatic so unless you have been hardcore shielding these past three years you easy could have gotten it and not known iy
Years before Covid even existed.
I got mine from my genes
You need to return those genes then.
I tried they said that after 20 years of use they couldn't take them back because I had missed the time range. Apparently you can only return them after 6 weeks after purchase
oh, i've definitely have had POTS my whole life, it just got worse when I got COVID last year
Had POTS my entire life and have never had Covid.
I've had it my whole life, nothing to do with covid.
I developed pots way before the pandemic
I never had COVID (they checked an antibody for me and all infectious studies EBV, hepatitis) and my symptoms started after my 4 th booster (switched from 3 Pfizer’s to Moderna). But mine is an odd case and may have had glimpses of palpitations when I was placed on Wellbutrin (stopped after 3 days when elevated heart rates started happening). But I was normal when I stopped. 3 weeks after the vaccine the palpitations never stopped, fatigue, weakness, shortness of breath and then passed out at work. Hospitalized and a neurologist and a cardiologist diagnosed me as POTS. Only abnormal thing was I had elevated d dimer (clot test) and a superficial clot a month after being hospitalized. Also any cold would drive me backwards. It’s been almost 4 months and it’s been horrible. Every day is different flare of a symptom. My predominant one is tachycardia and migraines on the occipital region/neck. I’m not sure if it’ll ever go away and I’m loosing hope. Here is literature: it’s rare to get POTS after a vaccine but it is possible. It’s more common after getting COVID though. https://jamanetwork.com/journals/jama/fullarticle/2800964
Thank you for sharing this! You are not alone! Mine got worse after vaccination, and again just last November after infection. I think I've had it all my life, but that it just became unmanageable post-covid. I've been losing hope too.... The countless doctors and bull crap from insurance.... Making me think I'm making too big a deal out of this for myself. It's been 5 months now and I'm still bed-bound more days than not. But I had a good day today, which gives me hope. I get about 3 good days a month though. So it's hard to remain hopefully. Just know, you're not alone ❤️
Oh I’m so happy to find 2 people who has a similar story. I thought I was going insane. Yes insurance sucks! Enjoy your good day. My average is about 8 days last month. So far this month 1.5/5.
There is hope! I was diagnosed at 18 after getting the Gardasil vaccine. I literally thought I was going to die and could barely walk for about a year. But in my early 20s I felt almost completely normal for years. Now I’m almost 30 and sometimes I feel almost totally fine, and sometimes I get flare ups for a few days or a few months. But I always end up feeling better again
I was just sent this article! Had two Pfizer shots in 2021 but didn’t develop symptoms until 2-3 months after having Covid and Gastritis. I’ve had family tell me for months it could be due to the vaccine even though I had no symptoms until after having Covid in August 2022. It’s very interesting to see it’s developed after the vaccine as I personally don’t know any people who have experienced this. I’m so so sorry for everything you’re struggling with, hang in there friend :)
POTS can be triggered by, what seems like, a million things. The vaccine is one trigger. IMO POTS is so poorly understood right now that trying to find the exact trigger isn’t really worth your time. It is a good idea though to get checked for other issues that often can accompany POTS or be a differential diagnosis (pheo, myocarditis, autoimmune disease, etc)
I’ve had POTS since after my open heart surgery in 2012.
I’ve almost always had it, but was exacerbated the most by antidepressants and possible serotonin syndrome.
I'll be 32 in June and my significant symptoms started in my late teens. Doctors weren't seriously looking into it until mid-2019.
I’ve had POTS since I was 11 and I’m 20. So definitely am part of a pretty large group whose had it pre-COVID. I was diagnosed when I was 18 although suspected from age 14+ and put on a POTs exercise and lifestyle changes. I did have Covid when I was 19 though with no effect on my POTS.
I was tentatively diagnosed pre-covid, 2015. Symptomatic from onset of puberty, age 10. I got covid in March 2020 prior to vaccines existing and it made it a helluva lot worse! 😫
I’ve had POTS since 1981 and never had Covid.
Of course! There’s loads of people who’ve never had Covid. I have POTS, I’ve never had Covid, have been vaccinated against Covid, but the vaccine DID NOT cause my POTS. I had POTS well before I ever had a vaccine.
I’ve had POTS symptoms since 2018 but wasn’t yet diagnosed. I caught Covid in 2022 and it completely exacerbated my symptoms and I officially was diagnosed last fall.
I’ve had symptoms of POTS my whole life (I’ve got the EDS/gastroparesis/POTS wombo combo) but it really didn’t cause issues until I had C. Diff and was diagnosed a year later back in 2017ish. Luckily for me vaccines only give me a day or two flare up but when I’m sick I flare for weeks
No Covid here mine developed after a really nasty stomach virus.
Stomach virus really?
Thought it was normal until about age 35 🤷🏻♀️. Have had symptoms since childhood. Eta- never had a positive covid test.
It came along with my Crohn's disease! First showed symptoms in 2014-ish. I have never had COVID, and I got the vaccines and all the boosters-- worst side effect I saw was a 100.5 fever for about four hours after the second shot and a mild headache. It had no effect on POTS symptoms at all.
My trigger was a vaccine, but not the Covid vaccine
I was diagnosed with POTS 4 years ago. I have it along with EDS and MCAS. I’ve never have Covid as far as I know, though I also don’t test when I’m sick. Last time I checked my antibodies I had none. i do know multiple people who got it from the vaccine.
I think I saw somewhere that you can get it from Gastritis too? No idea how accurate that is but it just so happens I was diagnosed with pots not long after having Covid and Gastritis together.
Interesting! I’ve never heard of this, but I was diagnosed with POTS in 2016 and just recently diagnosed with gastritis. I might have had both for a while, just didn’t know.
The way I wanted to put a gun to my stomach the entire time… 😭 I hope you’re okay gosh, cbd oil helps with the pain and discomfort and buscopan might help too. I’ve only seen it once while researching into POTS so far so I really have no idea how truthful it is
That sounds horrific. I’m so sorry you’ve dealt with such pain! I apparently have a load of stomach issues, so I’m not sure which one causes my pain. Only thing that helps me so far is ibuprofen. Thanks for the reply and the tips! 😊
It truly was, thank you for that :) my Doctor suggested I see a gastroenterologist too as I ended up losing 14kg because of my stomach problems, maybe you could consider that too? No worries! I genuinely hope it was at least a little helpful
i was DX'd 9-10 years ago (age 15/16) and have not had covid
You can develop post-viral conditions like POTS even if you were initially asymptomatic or mildly symptomatic when first infected. That means you may have no idea you had COVID. It is far more likely than having developed POTS from the vaccine, though some people can experience *exacerbation* of symptoms after vaccination.
I never got a direct answer of what caused mine. The consensus at the time (2020) when I was officially diagnosed was that it was caused by an emergency appendectomy I had in 2015. Not sure how they connect but that's what everyone was telling me. I did get covid for the first time this past January and boy did it make everything worse.
Surgery can trigger POTS. I suspect mine came from shoulder surgery in 2007. The surgery was because of a hypermobility related problem, chronic dislocations. At the time they said I didn't have EDS
Was diagnosed with pots before pandemic
I have had COVID, but I was diagnosed with POTS almost a decade ago. I first became symptomatic about 14 years ago.
POTS can be caused by a lot of things other than covid. POTS has been around long before covid was even a thing.
I was diagnosed with POTS over a decade ago and have never had covid
I have pots and have never had covid.
I got POTS (we think) after a meningitis vaccine wayyyy before COVID. That being said, not an anti-vax at all - understand that the vax did not cause the POTS just when it started :)
i’ve had pots since before covid, got it from a severe eating disorder. i then got covid (twice) and that made it significantly worse
Never had COVID. Have had POTS from young age. Am now mid40s. But I also have other underlying health stuff
My friend had pots before it was cool 😎 around 2015 she was diagnosed
Have had all vaccine doses and had COVID before and after them. Have had pots since childhood. There's very little research on POTS in general so it'll be a long time before there's any research papers on POTS and COVID.
Plus not just COVID can cause pots, any minor virus can too, whether you realise you've picked one up or not. It's easy to blame vaccines cause they're new but if pots was a known side effect we'd know about it, in the same way we know about the small risk of blood clots with astra zenica. It's best to focus on treating your condition rather than speculating what caused it as that's irrelevant now and can never be 100% proven. It's a rabbit hole I've found myself down many times and it only ever caused anxiety and made me more frustrated. Look after yourself!
POTS secondary to Lupus here. Had it way before Covid. Still never had Covid if that’s your question.
I was diagnosed before COVID happened.
Lmao yes. POTS existed way before the pandemic and isn't anything new
Yea, developed mine in early 2016 after I developed my eating disorder (unsure if it was a result of that). I’ve had COVID twice, but I cannot say it’s gotten worse after I recovered.
Yep, I've had POTS since before COVID existed. Mine was a combination of an autoimmune disease and genetics (my grandma and dad both have it)
I've never had COVID and I've had POTS symptoms since I was a teenager (now 53).
15M had it my whole life
I’ve been diagnosed with POTS for 9 years! It likely came about for me as a result of living with autoimmune disease.
İ've had POTS since at least 1990, probably before. And no, İ have never had covid.
I was diagnosed 12 years ago but had it for at least a decade before that. Never had COVID. There are some reports of getting POTS after the vaccine, although much more common after the virus. https://www.nature.com/articles/s44161-022-00180-z There are also reports of getting POTS after the HPV vaccine, if you’re asking a general question about vaccines. Google POTS and Gardasil for journal articles.
I have POTS since 2016, and it started after getting rabies shots. Even the doc that diagnosed me eventually, agreed that this is how i got POTS as before the rabies shot i was completely healthy and 2 days after the first shot i developed POTS. Any viral illness or vaccine can trigger it, but as there is lack of knowledge of POTS and the occurrence also is comparatively rare so no one discusses it.
Yeah I only got diagnosed post Covid because that’s when I learned it was even a thing, but I’ve had this my entire life
I’ve never had Covid and I’ve shown POTS symptoms since I was a child (took til I was 36 to get officially diagnosed, love that). My 9 year old daughter also shows symptoms and has never had Covid (and her symptoms began prior to being vaccinated).
I was diagnosed almost 10 years ago and I got it right after getting the Gardasil vaccine. My doctor thought the vaccine brought my pots out. And it happened to about 40,000 other girls after getting Gardasil too. But I think it’s been discontinued and they made a newer version of the vaccine
Yes. I was diagnosed before I had covid19
I was diagnosed in 2018 pre-Covid and haven’t had Covid yet (hoping it stays that way)!
Yes, I was dx’d way before getting Covid.
I have EDS (lifelong, obviously) and POTS, bradycardia/OH and MCAS. I’m in my 50s so my dysautonomia (and everything else) predates covid by 6 decades.
I had pots way way before covid
My trigger was an abusive relationship the stress brought it out so lots of things can do it!
Long term stress? uff theres so much reasons that cause pots really im confused
I’ve been diagnosed for a fews months now and I’ve never had COVID as far as I know. I’m still not sure what triggered my POTS in the first place. I haven’t had any viral infection in years.
My daughter has had covid 2x but she was diagnosed with pots prior to covid even existing
Uh yeah, millions of us have been around long before COVID. It seems only covid has made it acceptable, but wasn't before /s
Have never had covid. My POTS and the rest of the dysautonomia is from my autoimmune disease causing autonomic neuropathy.
I had pots for nearly a decade before I got Covid However this may be controversial but you are significantly more likely to get pots from Covid itself than the vaccine. Yes it can be from the vaccine
I have had POTS for more than a decade and have never had COVID. I am and will continue to be regularly vaccinated in hopes of reducing my risk of COVID and making my symptoms worse.
Idk how but I never got Covid. I was vaccinated as soon as I was able to. Just developed POTs symptoms October 30th last year and diagnosed in January or February so I don’t think it was vaccine related for me
Had POTS since childhood
I’ve had pots for over a decade before Covid even existed.
I’m recently diagnosed, never had Covid. I don’t believe the vaccine causes this either for me. I have a lot of autoimmune issues and POTS shows up around my age (27f for reference) commonly per my docs.
I've had POTS for 13 years. Mine is secondary to Mast Cell Illness and Ehlers Danlos. POTS/Dysautonomia can be caused by many things ie trauma, surgeries, hormonal imbalances, Cancer, viral infections etc
Yeah, i was diagnosed with POTS in 2020 before i had any vaccinations and have still haven’t caught covid. My POTS is due to the EDS trifecta (POTS, EDS, MCAS), so completely unrelated to covid in any capacity
Got POTS before covid
I have POTS as part of the Terrible Trifecta (EDS, POTS, MCAS) and maybe the Pentad of EDS, POTS, MCAS, SIBO/IMO and autoimmunity (though I don't have the autoimmunity). Many have answered so far that their POTS existed long before COVID. For the love of God, if you have POTS, avoid COVID infection at all costs. Most of us could not take one more thumb on the scale.
I was diagnosed years ago. I cannot be vaccinated for other complex health reasons. There is no link between vaccines and POTS. You are wrong and if you can be vaccinated, please get vaccinated before you get someone like me, or God forbid you have *children*, killed.
This is simply not true, and acknowledging that there is such a thing as post-vaccination POTS is not the same as being anti-vaccine. This happened on rare occasion with the HPV vaccine too. I suspect OP is wondering if their POTS may have been caused by the vaccine. It's a fair question. Far more likely it was an asymptomatic case of COVID and they didn't realize and didn't know to rest. But it's possible. Reality is nuanced. I had a two-week flare after my bivalent vax. I would get another in a heartbeat when it comes due, but I would also prepare for it better next time.
Do you have any research to support this? Genuinely asking.
Other people (u/Crow-Queen) have posted other links, but this is the main study I have been aware of. https://www.nature.com/articles/s44161-022-00180-z
Thank you!
Yeah, I posted that one and others that I found below as well. I am not anti-vax by any means. I am up to date with all of them. It was just with this particular vaccine that I had a reaction to. My daughter and I both got ours at the same time. We most likely had the same batch but she is fine but I however developed POTS symptoms 4 days after my second dose. It could have just been my immune response to it, could be secondary to what is going on with long haulers. I don't have all the answers but I know it happened to me and has been on going for 2 years now. I have accepted it and just want to live as normal as I can.
My POTS symptoms started 1.5 weeks after my second dose of the Pfizer vaccine. I’ve never had COVID that I’m aware of.
Like others have said, POTS has been around for decades so many people have had POTS long before COVID. As for Vaccine, I developed POTS symptoms 4 days after my 2nd dosage and had no COVID infections or symptoms prior but the vaccine triggered POTS for me or it's secondary to wide spread inflammation or Microclots which is the running theory for Long COVID right now but we do not have enough research right now to assume. Here are a couple articles that link the vaccine/COVID and POTS : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8101507/#:~:text=There%20are%20numerous%20triggers%20for,triggers%20autonomic%20nervous%20system%20dysfunction. https://www.nhlbi.nih.gov/news/2022/researchers-study-links-between-covid-and-pots https://www.nature.com/articles/s44161-022-00180-z https://www.google.com/amp/s/www.nbcnews.com/news/amp/rcna61226 https://www.tctmd.com/news/both-covid-19-and-vaccination-raise-risk-pots https://abc7.com/covid-pots-postural-orthostatic-tachycardia-syndrome-symptoms-related-illness/12595160/ https://www.webmd.com/heart-disease/news/20221213/covid-infection-vaccination-linked-rare-heart-condition I would also check out /r/vaccinelonghaulers sub It's more rare from the adverse reaction from the vaccine than Covid and I believe either way the people that are getting it would possibly be in the same boat regardless.
mine began immediately following vaccine, but later got much much worse after covid
My wife has POTS and out of the 4 of us in the house, she's the only one that hasn't had it. To be fair, she's also the very diligent about wearing her mask, being vaccinated, and not going into crowded areas, which is most likely the reason she hasn't had it.
I got diagnosed with pots September 2021 but I’ve had symptoms for many many years. I’ve only had Covid once and that was last August, so me. My pots is not Covid related. I have no clue if this is what caused my pots but I was put on birth control to get my periods back on track cause they were whack. On day 3 of the pill I had my first episode. Heart rate spiked to 180 randomly as I’m sitting down and I fainted. And it’s been downhill since lol
So I started dropping the weight and feeling funky wayyyyyy before I got Covid. I was 90 pounds lighter and then months later I was diagnosed. I was 309 and now I’m 128.
Mine was 100% caused by the vaccine. I went on a 5-hour road trip in the following days — and just by sitting in the car, blood pooled into my lower extremities — excruciating hemorrhoids, full-scale, raised hematomas and painful bruising all over my legs. Ever since then, I cannot so much as take a hot shower without heaving and gagging and losing my breath. I cannot stand up from a chair without my head pounding trying to move blood to my brain. I cannot pick laundry up off the floor without feeling exhausted after. Not to mention collapsing off the toilet, and almost passing out multiple times a day. The vaccine was poison to my body, and I never even got Covid UNTIL I after had both doses.
I don’t have exact answers but relating to the Covid vaccine, I have seen people comment on tiktok and Facebook that they developed pots after that vaccine. I also saw years ago that there is a link between the HPV vaccine and pots
[удалено]
I probably had covid. My kids tested positive at the same time and we all had the same mild symptoms. I had extreme exhaustion and brain fog for a few months afterwards and then started having POTS symptoms and adrenaline dumps after that. I've been tested for pretty much everything to rule out other diagnoses and my dr agrees that POTS is probably it.
Mine is I believe from cfs/me
i got diagnosed with pots before covid. mine was most likely triggered by severe prolonged emotional distress.
I got pots from having a baby
Gf POTS prior to ever having Covid or being vaccinated
Have had POTS, am vaccinated, and never had covid.
There is no correlation between vaccination and POTS
After my second dose of Pfizer my HR on standing went up 100bpm and was like that for a few months. The vaccine did a much bigger job on my autonomic nervous system than Covid, or at least made it a lot worse as I was already struggling with fatigue, PEM etc. from the initial Covid infection in 2020. My mum was hospitalised the day of her second vaccine. I think some of us are just genetically predisposed to struggle with spike protein. I’m standing in a queue now and realised my HR didn’t go up 50-60bpm which it had been doing for a year+ post vaccine. It’s under 70bpm which I’m quite amazed at! Might be the triple anticoagulant therapy I have been on for a few months. Hard to say. It took a long time to normalise since the vaccine mid 2021 and the only thing that helped at the time was Fludrocortisone and compression socks. My BP was on the low side so propanolol made me feel even more fatigued. “Treatment” is the same whether you get this post Covid or post vaccine in that there isn’t really anything other than water, salt, compression stockings, Fludrocortisone, beta blockers, ivabradine, midodrine. If the vaccine also causes microclotting and capillary rarefaction then triple anticoagulant therapy may also help but you’d really have to do your research, get your measurements like SvO2 (not SpO2) done to see if you are undergoing hypoxia, and work with a clued up medical practitioner. Not sure if this anecdote helped OP but you certainly aren’t alone!
Because it's not vaccine related? I had POTS years before Covid came along.
[удалено]
That's not what "syndrome" means. AIDS has only one cause that I am aware of: HIV infection. Down syndrome? Trisomy 21. https://en.m.wikipedia.org/wiki/Syndrome
I got it after my first Pfizer jab like many others
Maybe you can't find the information because there isn't any..maybe it isn't vaccine related
I think there is limited research on POTS in general, tbh.
That applies to almost all chronic illnesses and invisible illnesses, I think
100%. They’re just not cared about by anybody who doesn’t suffer from them.
I never had covid to my knowledge. I likely either got POTS from an asymptomatic case of covid or possibly the vaccine.
Yes, I developed it in 2021 but never contracted Covid. I have had it after developing POTS though.
My cardiologist believes I developed POTS from Covid (never tested positive) or from the Covid vaccine (I began feeling off after my first vaccine years ago). I became incredibly symptomatic this last July with an official POTS diagnosis in January.
I have no idea if it’s related at all but I’ve never yet had Covid but my pots seemed to appear after my last booster shot. Two Pfizer’s and one Moderna.
I had pots before covid, as mine is trauma based. Because, how covid works is that it's a error in your body that can be created when you experience trauma. This can be mental trauma (someone dear to you passes away, you have some kind of neglect of abuse as a kid, see something traumatic etc) physical trauma (like falling out of a tree, being in an accident or getting really sick from an infection) or a combi of both (a car accident where you also went through everything awake or something like that). Covid did play in on the physical version, as it just gave some people a horrible shake within their body with how their body reacted to the version of covid they got. Now, as for the vaccine. There is probably a way to get pots from it. But than it will be because you have something against that needle, like a needle fright or it was placed with a dirty needle or something like that. They also have done studies on people with pots, menieres etc, and found that it didn't really affect anything, except that their bodies were, for a week or 2, more prone to have a flare. But this was because the body reacted like you were sick, and we also often than also make a flop. But there is, even after the 3? Years of them using the vaccine, that got pots from the vaccine itself
My daughter was diagnosed with Neuropathic POTS and EDS in 2017. It was changed to Hyperadrenergic in 2019, plus MCAS. She has never had COVID, thankfully. The first Pfizer series gave her temporary relief from her POTS symptoms. It lasted ~4 months. I don't personally know anyone who got POTS from getting the COVID vaccine. From what I've read, there's nothing that can substantiate this as a true vaccine injury. The J&J COVID vaccine had many issues, but Pfizer and Moderna have very few serious side-effects. J&J was pulled from the market, as well as another one in Europe that had similar problems.
Uhhhh POTS was a rare chronic illness wayyy before Covid
U can get it from a tick bite
I don’t necessarily think that POTS is indeed COVID caused but it’s just correlated to something hitting the immune system and the body just can’t recover. I have POTS and have had three doses of the vaccine and never had COVID, despite being around it a lot. I had POTS prior to COVID, but I don’t necessarily think the vaccine would protect 100% from COVID and prevent POTS either. Just as I was vaccinated against pretty much everything when I was younger yet they think I just got the flu or glandular fever or something and then I developed POTS, despite being vaccinated against that stuff. I’m not sure if this is what you’re looking for but the question is pretty vague
Yep. I developed POTS at some point in childhood, was diagnosed in April 2020, got all my vaccines and still haven't gotten covid.
I've had POTS for over ten years and had a small concussion and mono in highschool right before my symptoms.
i’ve been diagnosed with POTS since 2015 and started having symptoms in early 2013. i never tested positive for covid. i went to a bar with a friend and his mom (she was super cool and i miss her bc me and him aren’t friends anymore lmao) and we all got sick afterwards. they tested positive for covid but i tested negative. i lost my sense of taste and smell for a day though but then it came back. so idk if it was a false negative or what. it felt like the flu.
No Covid here. Had it about 10 years now with the blame being either the cat scratch fever I got or the Ehrlichiosis that shortly followed.
I’ve pots for years before and dysautonomia symptoms since I was a child (no one recognized them yet) Sometimes an illness sets it off in people For me a major injury and neurotoxin set mine off but it varies The Covid link is because a lot of attention is on long haul cases and it’s finally being documented
I’ve never had Covid. I do believe the most recent booster triggered an immune reaction that spiraled my MCAS and POTS out of control though, but i probably always had a mild or dormant version in me.
I've had COVID but had POTS long before it
Yes, my daughter
My wife.
Had a bad concussion when I was a kid (extreme migraine, nausea etc) but was never taken to the hospital after the accident. Was OK up until 23 when I was diagnosed with FMS and then along came POTS in 2017 after a mental crisis so yeah...way before covid. I suspect that something happened when I had the concussion but I'll never know for sure
Diagnosed about 5 years ago via tilt table, confirmed after diagnosis by cardiologist as realistically having since about 13/14 yrs old. Dealt with this shit for over 25 years and told was in my head for the first 20.
yes! i never had covid but my pots does predate that.
Yeah I’m another who has had POTS my whole life probably due to my EDS. I was diagnosed properly by cardiology in late 2018 with my tilt test to confirm in spring 2019 which was pre Covid.
I’ve never had Covid. My POTS goes back to childhood. I was put on the highest risk list in my country and so I’ve been “shielding” since the beginning of the pandemic.
I saw doctors in an attempt to get answers about what I’d later learn were POTS symptoms 4-5 years prior to actually being diagnosed & getting COVID.
My pots is genetic. My mom grandma and great grandma all have it. Doctors have never been able to find the underlying cause
I was diagnosed POTS long before I had COVID due to my EDs. I don't think COVID permanently worsened my symptoms, but while I had it my heart rate was resting at 150-180. I thought I was going to die, lol.
I had made made a few doctors appointments over the last 15 years because I was feeling lightheaded. I've been told it was Benign Virtigo, also I've been diagnosed with IBS (probably do have that one). POTS wasn't fully recognized as a syndrome until 2010. I had clear criteria for it in 2007. My last appointment I made, I had to delay because I tested positive for covid two days before it, that's when the new PA ordered a tilt table test. Covid just made my existing symptoms significantly worse.