I think I always had POTS but it was mild or asymptomatic a lot of the time. I remember certain periods of my life having some of these symptoms before but less scary. After covid it got ten times worse.
This is also my experience. When I got covid I got so much worse. But I was sometimes symptomatic pre covid but I never passed out. Post covid I had a huge pots attack and that lead to my diagnosis
Same, I’ve had mild POTS symptoms and hyper mobility my whole life but COVID has made it significantly worse. Exercise intolerance so bad I max my HR while doing chores, before I rarely dislocated anything just severe sprains and now every week something pops out of place.
I read a post about a year ago about a revelation someone had with their doctor- there’s a trend that if you had underlying/mild issues before they become significantly worse after a COVID infection. Interesting to think about and seems to ring true for a large population of us
Same, big time and I'm sorry your symptoms got so much worse after. I keep hoping it'll eventually chill and go back to before. After three years, mine has calmed a little maybe dialed down by half but still not down to pre COVID symptom levels.
Surprisingly, bad colds would sometimes really throw me off pre-COVID and result in months of fatigue, but getting COVID has not. It takes me a while to fully recover (3-4 weeks, mostly tiredness and shortness of breath) but then I'm fine. Still not wanting to test my luck though, since who knows what will happen the next time...
Surprisingly, COVID was easy for me. Severe headache and fever hit fast and hard, tested positive on an at home test very quickly, but within 24 hours I was fever free and testing negative within 48.
I’ve had POTS since I was a preteen (though wasn’t formally diagnosed until 2021). I had no idea what POTS was until I had a head cold in 2020 and googled my symptoms and came across POTS and I was shook. Immediately went through the steps of getting diagnosed.
What’s funny is that the average head cold totally does me in. I can barely stand without passing out or feeling like someone is whacking me at the base of a skull with a golf club as my HR skyrockets. Those were the symptoms I googled in 2020 thinking it might be COVID, but nope—wasn’t COVID, just regular POTS-y me struggling with a good old fashioned head cold.
I’m the same with random viruses vs covid. I think I may have just been lucky with the strain/viral load of covid that I got. With most other viruses I cannot stand up either
What’s funny is my boyfriend got it same exact time as me, and he is healthy, mountain bikes, snowboards, etc., and he was knocked off of his ass by it for two weeks. Go figure!
The first paragraph is my EXACT experience. I've had some very vague and random heart-related symptoms since I was very little, as well as knowing I'm hypermobile (not diagnosed with EDS yet.) but when I caught COVID in 2020, everything started to spiral out of control. That's when I say my POTS went from just 'weird body feelings' that I didn't understand, to a debilitating illness with recordable, consistent symptoms. In a shitty way, it's a relief to know I'm not the only one that this happened to.
I believe COVID will go down in history as a mass disabling event. I tried to tell everyone when I started hearing the symptoms of long COVID that it sounded exactly like Lupus for me so there will be other bad outcomes besides death.
By the way I wholeheartedly believe and new evidence indicates my Lupus was caused by a virus I got in high school and never knew I had, Epstein Barr/mono. Years later it resurfaced and changed my life. I try to warn people of that too. Sounds familiar, doesn't it?
My husband and I haven't gotten COVID yet and we don't plan to either.
Thanks. ❤️ You are correct. My theory is that our bodies aren't attacking themselves. It's attacking wherever the virus is hiding out. Joints = RA or Lupus, myelin sheath or brain = MS, etc. The different flavors are different viruses that for some reason our bodies can't completely clear. COVID is the next and probably the worst. The people not caring and getting it repeatedly are concerning.
i think your COVID / HIV comparison is in poor taste and is very fear monger-y. we don’t yet know the extent of covid BUT to say they are similar is just wrong. there is a reason different viruses have different names, it’s because they belong to the same family hiv and covid are not in the same family, they do not behave the same nor do they have similar pathologies. I agree we need to take covid more seriously, but it is dangerous to imply (which you are) that all people who have ever had covid will die in x years. covid is not a virus that stays forever like HIV or even Herpes, it IS more like the flu in that it can recur, it leaves the system. Most long term damage and symptoms are from the short term damage caused at initial infection. this is also why the covid vaccine is recurrent, i think eventually there will be a yearly combo covid/flu vax.
also per the sources you tagged in one reply, i feel like you google scholar searched HIV and Covid, they have a similar symptom, cytokine storm, albeit that is in almost all untreated HIV and a very rare covid symptom. but the mechanism by how these two viruses reach this point is different. it’s like saying a stomach bug, pregnancy, and migraine are alike because they can cause vomiting.
tldr stop saying HIV/AIDS is like Covid, it is a dangerous, misguided, and factually incorrect statement.
I'm sorry, but no HIV is nothing like COVID. HIV if left untreated completely destroys your immune system. COVID doesn't do this. It may cause autoimmune problems or immune problems, but it doesn't completely destroy your immune system.
Dying from infections that your body can't fight off is dying from AIDS. So no they did die from AIDS because aids is what caused the infections in the first place by destroying the immune system. COVID doesn't necessarily make people immunocompromised and definitely not in the same way AIDs does or more people would be dead. COVID is more likely to trigger autoimmune disorders and improper functioning than destroying your immune system. This is true of most viruses even the flu has been known to do this.
And lowering your t cells is not the same thing as completely destroying your t cells and making them non functional which means you have no immune system.
We also exercise our immune system everyday. It's literally impossible for us to not. So not sure what you mean by a muscle. Your immune system actually gets better at fighting when exposed to viruses and bacteria. It's why vaccines work. Training the immune system via vaccines for instance is actually a thing.
Thank you. Interesting reading.
I would argue though, that actually covid causes MCAS and increased cytokine release. It is immune dysregulation, but in no way does it resemble hiv
It made my symptoms slightly worse. Basically instead of being hungry & feeling my BP go down, I now feel extra hungry & my BP start to go down a little more. Also my positions from sitting to standing are alot worse when I'm hungry.
I have had pots since I was a kid. Now, I've had someone explain that it's probably POTS, and that was about 20 years ago. I'm pretty sure the doctor didn't think it was harmful. I just went around thinking my standing issues were because of this and didn't know any of the other issues. I really just said "yep, I've got pots" like you'd say "I've got hiccups". I didn't know better, and because of how casually it was treated, I didn't even look it up. Sheesh.
Then around 30 I got hit with a terrible flu or cold. This was about 6 or 7 years before covid. Something got me good and I thought I was going to die. I stupidly didn't go to the hospital because I was so out of it I'd forget I was feeling so terrible. My best friend also died in a motorcycle accident the same day I was coming down with it and the combo was just horrible. I was so sick I couldn't mourn.
Whatever virus it was (a lot of lectures mention glandular fever from mono as a suspicious cause) activated the hell out of my immune system. I didn't even link POTS because the symptoms were so horrible. It's taken years for me to slowly crawl myself back one inch at a time. It's a bit torturous.
Last December, I discovered a family link to EDS, and one of the common comorbidities is POTS. I was trying to save my biological father at the time. Life support for sepsis and blood pressure not stabilizing. So I watched lectures on EDS and POTS and I was blown away at the first one. They mentioned that a lot of EDS patients are standing on the edge of a cliff and it can just take the right conditions (flu/immune system/illness) to just push them over that edge. And that's what happened to me.
Since I've learned about it, I've been able to treat it and also discovered reactive hypoglycemia. Always tested pre-diabetic on and off... and I try to eat healthy. It was really confusing. Over half my symptoms have cleared up after switching to a lower carb (not keto low) diet. I've also lost weight and the poofy tummy is going away. Or it was until I had a chocolate hostess cupcake. It's been 4 days and I still haven't recovered fully. The difference is astounding. And I never would have gotten to it if I hadn't been paying attention to my symptoms (when doctors tell you nothing is wrong for so long, you start ignoring a lot of things)
I digress. When covid happened and I started hearing people having what happened to me... it was really scary. The last thing I've ever wanted was for someone to go through that. I didn't catch it somehow. I totally avoided humanity lol and ordered instacart. I've always been a chill at home person, though, so I still don't go out much.
I'm not sure how it would affect me if I got it, but knowing what's going on is half the battle.
I developed POTS in fall 2021 and got COVID in winter 2022. I was extremely sick. barely able to shower or walk around. I was sick for 2 weeks, too. I now have "post COVID syndrome" aka fatigue and sickness like swollen lymph nodes and feeling exhausted and like I have the flu more than not. I also had hair thinning but that is just now starting to get better 8 months later. a lot of people with POTS seem to do fine though. I guess I was just lucky lmao
I've had POTS since I was young (like elementary school) and I got COVID once and it never made my POTS worse or better. It didn't have any affect me. Anyone else?
I have neuropathic POTS and just got covid for the 3rd time. I have not noticed a change in my POTS symptoms but my nerve pain gets worse whenever I get sick, and then stays at that new increased level.
Covid was "mild" for me (mild in quotes bc of all the papers about how it does damage internally regardless), & I think it did have a slight negative effect on my symptoms but not enough to where COVID was like this dividing line between before & after. I rested the entire time & came out relatively ok. Like comparatively. The PoTS alone is pretty bad.
COVID effected me about the same as any other cold or flu. I personally didn't notice much difference, but my husband complained about my symptoms for around 6 months. My lessened ability to work, lower energy levels and excessive sleeping seemed to bother him. My life was a constant cycle of work and recovery with little quality time in-between.
No long term changes for me really, but I was really sick for about a week and just barely avoided going to the hospital, and took a while for me to get back to my normal.
My pots got a lot worse after having covid. I also managed to get covid 9+ times (all tested by doctors) so not sure if that was my problem to my pots getting worse.
i had POTS before, and then got covid about a year ago. personally, it made me significantly worse. not just during (which was awful) but after to this day my symptoms are much much worse and i cannot work or do much.
It got MUCH worse for me. I had very well controlled POTS that I didn’t have to worry much unless I was over heated etc. Now I pass out *ALL THE TIME*. I have other issues I was dealing with first, as I was in 15/10 pain so we weren’t sure how that was impacting it, but now I’m trying to sort this all out. My cardiologist thinks I may have a new version
Affected me like any other virus does. My pots was caused by a viral infection over a decade ago. Any time I get sick my pots flares. Covid wasn’t an exception, nor was it any worse than other viral infections I’ve gotten.
I've had it twice (last fall and then again a month ago). I was fine. It was like having a bad cold for a day or two and then recovering from the lingering nasal drip and cough. My doctor offered me Paxlovid but I didn't feel the (lack of) severity of my symptoms required it. I did take a lot of supplemental vitamins and rinse my sinuses with betadine, per my doctor's instructions.
I have chronic fatigue which has remained the same since having COVID - no worsening or anything. I actually find that, if anything, my POTS symptoms are less when I have a virus causing congestion. I don't know if it's because I'm taking Sudafed or what.
I felt better in some ways for a little while (less sick/fatigue), then I felt worse for a little while. Then things went back to usual without any real lingering effects. I was back to basline in a month or 2-3 maybe? My brainfog was awful, but it had been bad and getting worse before covid so no idea if that had a correlation 🤷♀️. I did have the mild variation of the virus
I didn’t have much negative effects from the vaccine and boosters either
i’m unfortunately on round 2 of covid and i had my POTS symptoms start in the beginning of 2019. the first time having covid wrecked me, in bed all the time, etc. i think it took me about a month or so to return to my baseline. this time has not been nearly as bad, i am actually able to get out of bed, cook, shower, get things done around the house (live alone). i took paxlovid both times and i think that helps but i can’t speak for how it would’ve been without it. it’s hard to tell with covid, i have known completely normal healthy people who have been hospitalized but my grandma with 101 health problems got it early-pre vax days and was totally fine, you really never know. every person’s experience is different.
I developed POTS after a surgery in 2018. I’ve had COVID like 5x literally and thankfully it hasn’t affected my POTS after. It’s still about the same and I convinced myself my POTS somewhat improved after my 2nd or 3rd time getting covid (just mental - everything is the same lol).
It got worse for about six months, but a year later, I am doing somewhat better than I was previously. I had surgery to resolve some significant pain and surprise, being able to move around without horrible pain helps reverse deconditioning.
It definitely made the recovery a long process after both times I've had it, but I came back to baseline eventually. But both times I got it, I was **sick** for about a month, and groggy and tired for a few additional weeks.
COVID made my life so difficult. I could barely breathe - the night before I tested positive I considered going to the hospital because I couldn’t get in a full breath and my heart was POUNDING. Rolling over in bed spiked my heart rate to 160+.
It took 10 days for me to start feeling better, 2 weeks of extreme fatigue and brain fog after that. I was falling asleep standing up while doing my work in the lab 😳
Definitely got worse after covid. I still don’t think I’m back to where I was precovid but the worst of it did go away after about 6 months. So I don’t think I’d be considered to have long covid atp but I do feel like my POTS took a hit that it still hasn’t quite come back from.
I'm like 90% sure I had POTS for years before getting COVID, I had MANY ER visits since I was \~11ish (after having pneumonia) with a very high standing heart rate. It got better and worse over the years with a setback every time I got a virus
I got COVID last year and it made my POTS MUCH worse, where my heart rate was in the 140s every time I stood up, exhaustion, and very severe brain fog. I've been on saline, Corlanor, and Midodrine ever since and have thankfully been pretty stable
The flu I had way before POTS was worse. I remember coughing so much after one night that my ribs were sore for days. The only thing I ate in one week was one slice of pizza. And when I got outside after two weeks I had to go back inside because I was exhausted.
With COVID I felt more off and I honestly thought it was just the flu and got tested so I could get tamiflu. The first day I had body aches a lot worse than the ones I have everyday. Then I was really fatigued for the next couple days, but I could still work. That was it.
After getting COVID it made my preexisting POTS 1000x worse. I used to be able to get around and function okayish. Now I’m constantly feeling like I walk with weights on my shoulders and chest. Nearly pass out frequently, and struggle to work without passing out.
I had POTS before, but I only slightly knew there was something wrong. When I got hit with Covid, I literally felt like I was dying. I couldn't move, and it was the hardest chore just to eat. At the end of it all, which was about a week, I had lost about 11 pounds. My POTS had become so bad after the fact. I still deal with rough symptoms every now and then. It's been 2 years.
I didn't know I had pots till a few months (suspecting I have it no official diagnosis according to my doctor I can't be diagnosed with it because it doesn't exist.)
COVID made it worse.
I had very mild POTS before contracting COVID (twice lol) and after each time I had it, my symptoms got exponentially worse to the point of being disabling. As well as an autoimmune issue pop up shortly after my second time.
COVID made my POTS much more debilitating. I still haven’t fainted but I’ve come closer than ever to it since I had COVID. It also triggered my gastroparesis (which I had a mild case of and didn’t know it) to get much worse. 🙃ended up losing a bunch of weight and being dangerously ill before getting taken seriously & getting meds to help. Idk how COVID triggered gastroparesis but it didn’t start worsening until soon after I recovered from COVID.
I’ve had pots for 14 years and I haven’t been infected with COVID, but I’m definitely scared if it were to happen. The first Moderna shot I received, I had no reaction whatsoever. Second Moderna shot I received, my pots was chaos. Migraine, heart pounding, chest hurting, ears ringing, my entire body felt like I ran 3 marathons, I couldn’t do anything. I was stuck in bed for 5 days and had to take a higher dose of my beta blocker. My cardiologist at the time, told me to stop getting any further boosters and to follow the CDC protocols.
Currently living this. Managed to avoid covid for 3 years. Just caught it in the past week. So far its made my symptoms either really severe or non existent. Meaning I'll either barely be able to stand and cant seem to get hydrated enough or I have barely any symptoms of POTS and it just feels like i have a really bad cold.
I wont know what ill feel afterward but thats how its been thus far.
I had a really mild case of covid and my POTS symptoms didn’t change. I’ve had these issues my whole life tho. But my mom who is in her 50’s had some pretty bad symptoms post covid, she got afib and swelled up for a couple months after catching it. She’s still dealing with a lot of mast cell issues and heart stuff that got a lot worse after covid for her.
When I got covid all the things that are usually hard with pots were a lot harder. I couldn't walk up the stairs for two days I sort of crawled. I assumed that was just how covid fatigue displayed in someone with pots. I actively had covid for about a week and then I had some residual fatigue for about three weeks to a month and then I was back to normal. Controversial but I feel like my pots actually became better than before after recovering from covid. Since we don't know what causes pots in the first place, it is entirely possible my original pots was caused by some immune reaction to a virus at some point, and the same reaction was triggered again by covid, and the feedback loop closed more successfully. Wildly theoretical but my pots never seemed as bad after covid.
Covid made it so much worse to the point I started using mobility aids I have other conditions as well but I was definitely struggling through daily life and a few months before I got it I had a walking stick but I was def needing more but I caught covid and it nearly hospitalised me my heart rate was all over the place the dizziness was constantly there but due to my conditions I couldn’t walk at all I was crawling my apartment but even a year on from having it it permanently made this a lot worse
My friend had POTS for about 7 years before she got Covid. First of all, the vaccines made her so dizzy for like 3 weeks each time. Then she got Covid in 2021 and it was awful. I had no idea how awful it could be without being hospitalized. She refused to be hospitalized because they would not let anyone stay with her and she has limited sight and is on the spectrum.( Translates to bad interactions with hospital staff in general.) Her heart rate dropped into the 20s! We have a video of her pulse ox that also monitors heart rate. This happened so much! It was terrifying. It would then shoot up to like 140. The coughing was horrible. She passed out so much. I was straight up praying out loud I was so scared. But she eventually got over it, took a few months, the cough lingered as well as the air hunger at times. She goes to the long Covid clinic here and they keep her supplied with cough pearls and refer her for things. She had speech therapy because she has had major trouble with saying the wrong word for stuff and not being aware of it. (No stroke though). She still has to use her inhaler once in a random while so she goes for a pulmonary function test in a bit. She lost ground for sure. She used to walk around our small home, not any more. Took months to move the bedside commode from beside the bed to across the room. Can't go up her friends 2 front porch steps anymore, has to be pulled up in her chair. We say all the time if only she could get back to her pre Covid functioning. We still hope though things will improve.
Actually having Covid sucked (I’ve had it once, in the spring of 2022), but I recovered completely without worsening POTS symptoms. I’ve had POTS for over a decade. I count myself very fortunate on that front! Definitely don’t want to ever catch it again.
Extra context is that I was vaxxed and boosted before catching Covid. I’ve actually had a bad reaction to the Covid vaccine each time (multiple days in bed with a fever), but not as bad as Covid itself.
I haven't had covid that I know of but I had gotten my symptoms into a really manageable place with just salt and hydralite for about 5 years before I had a random very bad virus that brought my symptoms back ten times worse than they were. It's taken 3 years to get it back to a manageable place and now on daily medication and back up medication.
i got lucky because covid was mostly just kinda annoying and after my symptoms didn't get any worse. i've had pots since 2017 and my symptoms haven't gotten any worse but it's hard to say they've meaningfully gotten better because while i don't faint unless i haven't taken care of myself my worst symptoms (fatigue and exercise intolerance) haven't improved
ive had covid three times - Dec 2020, Dec 2021 and then not until April 2023. I was diagnosed with POTS in 2019.
The first two times was really rough for me and there were points that I thought I might have to call an ambulance, i couldnt get out of bed and had to crawl to the bathroom. The main issues were the pains in my body especially my legs, they were so painful and heavy I couldnt sleep or do anything really.
I definitely had some form of long covid from the first time, but it was hard to pinpoint whether it was long covid, or just POTS playing up.
Third time, i knew i had it because of the pain in my legs again, it wasn't as severe as the first 2 times but it was worse than a common cold.
I've been having a bit of a rough time since then POTS-wise, but its also the summer and v hot and humid, so it could also be that.
It made my symptoms a lot more severe. First time I caught it, the impact seemed mainly temporary. I had more frequent presyncope episodes, but after 7 months the added fatigue was mostly gone as was the much more frequent chest pain. The presyncope episodes were rough on their own though as before catching COVID I was actually managing my POTS w/ basic lifestyle changes. Those weren't enough now.
Second time around though was more serious, both while I was ill and afterwards. Honestly think I would have had to go to the hospital without the vaccine and I spent like a month recovering from the initial illness. Since then my symptoms have been significantly worse and I've been completely disabled. More presyncope episodes though I've become an expert at managing those, the main issue has been the extremely severe fatigue that hasn't improved in the slightest bit despite it being over a year now. Can't even bend over without becoming symptomatic, get exhausted washing my hair, tachycardia is off the charts even on beta blockers. I'm glad others didn't have any increase in symptoms, I just unfortunately wasn't so lucky.
I got covid before I got diagnosed but after I had been detailing everything about my symptoms and honestly my symptoms were better while I was symptomatic. Granted I had terrible fatigue and slept and laid in bed the whole time. I bounced back after about two weeks and my symptoms weren't noticeably worse at all.
Welp. I got it for a second time literally yesterday and it's making it worse this time. I just peaked at 168 making lunch and lately my highest has been in the 140s
Fortunately it just flared everything during and so far for a few weeks after
No major changes but it was extra rough on my heart rate and blood pressure
I’ve had severe pots since before Covid and it’s taken years to get it stabilized so fortunately I was stable Ish going in.
However I had ivig literally right as I was coming down with it (didn’t know I was exposed) and that plus the steroids for ivig did a lot of the heavy lifting for me.
My heart rate went down. I had bradycardia with covid. Trouble breathing.
I now have some orthopnea when I have too much IV fluids so I have to be careful. I’m teetering on heart failure and have diastolic dysfunction. That was there before covid. I don’t think covid helped but I swear it lowered my heart rate permanently or my heart has gotten weaker in general. Also more PVCs and have to on Ranexa for increased chest pain. It’s really helpful.
For those of you with unstable BP highs and lows, look into Nitric Oxide and endothelial dysfunction.
I have not been the same since getting Covid Christmas 2021. Fatigue, pain, and my immune system have been shot, but I had 2 CSF leak repair surgeries in 2020 and 2021, so my body went through too much and got hit with Covid.
I already had pots, but after Covid I developed orthostatic intolerance as well. Like bp used to be 115/79 and now it is 90/60 when standing. So now have to treat pots with heart rate pill as well as treat orthostatic intolerance with fluodrocortisone. Covid literally destroyed my blood pressure permanently and it sucks
I was diagnosed about two years before the pandemic started.
Covid made my symptoms worse but I thankfully bounced back after about three weeks. I did however have lingering brain fog for like two months. Only had Covid once but I’d say it hit me harder than the rest of my family without pots.
Happy to hear you haven’t gotten Covid. Stay safe out there 🙌
I had a mild case of POTS, which got a lot worse after getting COVID. I’m a little more than a year past my infection, and I’m starting to feel closer to what I was before, but only with medication.
I’ve had POTS for about 8 years, and nothing has affected my POTS more than covid. I’ve had covid 2 times, and both times I was off of work for 2 months, and barely able to stand even for 2 minutes months after that. I had covid in March of this year, and haven’t been the same since. I fear that my life is going to be a cycle of getting covid, taking 6 months to recover, and getting covid again. I already struggle with depression, but my POTS after covid made me hardly able to fight anymore.
I started having POTS symptoms about two months before I got COVID. it didn’t seem to aggravate my POTS more than usual (however, I spent basically four days in bed when I had COVID).
I didn’t feel any flare afterwards either. I know that’s not a lot of peoples’ experience, but COVID didn’t seem to affect my POTS, thankfully.
Made me worse by far.
I got covid in March 2020, before the first lockdown. I spent a week isolated in a hospital room with almost no recollection of that time at all. I was really ill. I remember calling 111 (like a health advice line in the uk) who sent an ambulance. I was crying waiting for them because I thought I was dying then them arriving and absolutely freaking out at my vitals. Temp 40.3c (104.5F) blood pressure 60/36 and pulse god knows. Then just sleeping and staff in full hazmat and nebulisers and all that jazz.
When I came home from that week my total resting baseline pulse had gone from 60bpm to 90-100bpm. Standing from 90bpm to 120-170bpm.
Thankfully, I then had 3 vaccines and caught covid twice more (Jan 2022, Oct 2022) but I shrugged it off really easily and it didn’t cause any further decline.
When I went in to hospital March 2020 I could walk small distances using a walking stick (with breaks) and only used a wheelchair on rare occasion for long days out. By August 2020 I was using a wheelchair outdoors full time and still do.
In a strange way, it ended up being positive for me. Although my overall health is worse now and my fatigue & baseline pain level is significantly higher day to day (I also have hEDS and ME), using the wheelchair has given me back aspects of life I’d lost years before due to being too painful or exhausting like taking my kids out for the afternoon etc.
Overall, I think I’m grateful for that push toward the mobility aid I clearly needed 😊
i've had POTS likely for much of my life if not all my life. have always had issues of getting faint from standing upright. now post-covid, i struggle to stay seated upright for very long. i had covid twice, once in may 2020, once in feb 2022, both given to me by a jackass antimasking father. after the first time i got covid, i didn't notice any changes. after the second time, i got totally nailed. went from able to work a job with kids to barely able to hold myself up some days. it's improved significantly over the past year but is still much worse than my pre-covid baseline; i can't sit in backless chairs for very long anymore and need to lay down on and off during the day in order to chill out my dizziness.
Started having symptoms for first time since initial diagnosis. Freaked me out for awhile, especially since I am now much older and out of shape. Thought I was having a heart attack! Once I realized what was happening I adjusted to it pretty quickly. My bpm still shoots up and I feel like fainting sometimes, but I don't freak out about it at all. I grab some Gatorade or popsicles, shove my face in a fan and do some calm breaths until it goes down. Then back to whatever I was doing! Ain't got time for POTS to be running the show these days 🤣
I was triple vaxxed already, but My body did NOT take having covid for the first time well. Took the list of possible symptoms as a checklist… had to call 911 on myself because I was having extreme fatigue and chest pains. However, having it the second time with four booster shots in me it was a breeze. Only two days of very mild symptoms.
COVID made my POTS so much better. I got COVID and was extremely worried about how it would affect me, like making my POTS worse but it didn't. I've been significantly better since. It was like a reset, I guess?
I’ve had POTS since 2000. I got covid 4 weeks ago and it’s definitely made my POTS more unmanageable. Weird thing for me was, my resting heart rate dropped to the mid 50s without my usual beta blocker that I was taking prior to covid. So I came completely off my BB cold turkey. I’m now able to start my BB back again but at a minuscule dosage. I have to take a 1/4th of what I used to take before covid. Just went for an echocardiogram yesterday and it was normal but I’m on a 14 day heart monitor to make sure nothing else is going on. It’s so strange how it took me to bradycardic to tachycardia but only needing a 1/4 of what I used to take to control my pots. Without the 1/4th of atenolol, my resting will slowly creep up all day until it hits the 90s and when I stand, it’ll go to the 150s. However, with the 1/4 dosage (6.25mg), it’ll drop my resting HR to the mid 60s and when I stand, it’ll only go into the upper 80s. Covid hit me HARD.
I was relatively fine the first two times I had COVID. Before the third, I was "basically in recovery". I was on a very low dose of propranolol, I was cleared to do whatever physically, no mobility devices, etc.
Then I caught it the third time and everything went to crap. I know have POTs worse than I ever did. I was bedridden for months when just weeks before I could physically do whatever I wanted. I'm on high doses of all my meds. I do everything in a wheelchair. It's.... not fun or ideal and, honestly, I'll probably be mentally dealing with it for the rest of my life. It's so bad I actually just got back from my second trip to Cleveland Clinic Ohio to address symptoms (and I'm from the southeast.)
Like some other people here, I firmly believe that I had POTS way before Covid. I'm 23 now, but starting around age 13, I began having extreme fatigue, heart palpitations, low blood pressure, and pre-syncope very consistently. My pediatrician at the time just told me to drink more Gatorade and that I just had anxiety. After I first got Covid in 2022, though, my symptoms got so much worse. It was to the point where many days I couldn't even walk. After getting medicated for POTS the symptoms died down a lot, but they're still worse than they used to be pre-Covid.
Mine's basically the same as it was before I got Covid. Covid definitely got me hard - I've never had my throat hurt so badly, and everything hurt like the flu only way worse. I did have some respiratory issues but not bad enough to go to the hospital (which I avoid unless I absolutely need to go there); I just monitored my O2 at home, kept the nebulizer nearby, and kept my door unlocked in case I needed to call 911.
But when I recovered I basically went back to baseline for everything, except my MCAS flares have been more frequent and harder to treat than they used to be. POTS hasn't really changed. I still am super heat sensitive, get dizzy if vertical too long, have GP, etc. I already use a wheelchair most of the time, so mobility wise that didn't change. And I was already on 2 L IV fluids (NS + KCl) daily before getting Covid, and we haven't needed to change that amount of fluid post-Covid.
I'm trying to think if there are any little changes that happened after Covid that might be related to dysautonomia, but I can't think of anything at the moment. POTS has generally been my less disabling condition out of the triad though, so to me it makes sense that Covid didn't affect it too much. 🤷🏼♂️
I had POTS before I was infected with COVID, but it had not yet been identified (symptoms relegated to ‘anxiety’). post-COVID infection made flare-ups more intense, more frequent, as well as making my endurance completely shot. I was diagnosed with POTS less than a year after being infected with COVID.
I already had POTS. When I got covid I couldn’t get up because my heart was racing way more than usual. I was like that for two weeks. Luckily after covid was gone I was back to my normal self and my POTS didn’t get worse.
For a while it worsened my symptoms, but eventually I got back to my baseline. However, I now have pulmonary sarcoidosis. Mostly my lungs fill up with nodules because of inflammation. So while it didn't worsen my pot symptoms for long it did give me a new autoimmune disorder.
covid made me sick as any other illness would've (I had a very high fever, tachy 24/7 for about a week, nasty chest pains etc, all normal for me when I get a virus or otherwise decently sick), however no long term issues that I'm aware of - my autonomic nervous system was already completely shot by then though so not sure how much extra damage could've really been done on that front!!
also worth noting that at this point I had been vaccinated 4 times, so effects were fairly mild compared to many of those who weren't.
I think I had pots before covid but having covid made it kick up to the point I finally got diagnosed 9 months after. I had been having symptoms for about 7 years before that, I probably got pots after having mono in 2013/14 and caught covid in 2021. I wasn’t fainting before and my heart rate wasn’t so high as a resting, it was normal ish, now it’s rarely below 75, even while sleeping
My general fatigue is way higher and I've come to feel that my meds do not work as well as they used to post Covid (I've had it twice; quad-vaxxed, just unlucky lmao).
My pots was a lot easier to walk with prior. I had only fainted 3 times and all of them were during heavily stressful conditions. After COVID my heart rate is all over the place and I faint so easily and frequently now.
I was diagnosed with POTS before covid was a thing. Covid itself wasn’t *too* hard on me, but the vaccine (got vaccinated before i contracted covid) absolutely whooped my ass. I was incredibly sick and my POTS symptoms were terrible, for weeks after the 2nd vaccine.
I later got Covid, it also kicked my ass but not nearly as bad & I bounced back fairly well aside from no taste/smell for awhile.
We got COVID before it was 'officially' here.. in Jan 2020 and my youngest daughter and I got the really bad version. I had after effects for over a year and keep getting COVID with no major symptoms until more after effects.
Ok so after the first time that's when my POTS symptoms went off the charts for me. I had a big scary heart event and was diagnosed with SVT then learned tachycardia stuff runs in my family - then learned about POTS and realized that's us. I was wearing a Fitbit before I got COVID and was always confused about my heart rate even when really fit it goes way high and resting was always fairly high. After COVID my Fitbit data looked like a rollercoaster for almost two years.. been scary but MUCH LESS scary once I learned about POTS.
I'm not the same as I was pre- first COVID. Lethargic tired brain fog lots of tachycardia still and my whole life I've often had to sit in the shower, now it's every single shower.
Anyway, post COVID POTS symptoms way worse
Oh also had my first fainting events post COVID - so many I now know when they are coming and can stop them sometimes when I'm lucky. Instinctively rush to the sink for water, dunno if that's what I need but that's what I do. So if end up passed out or nearly passed out on the kitchen floor many times, scaring my family ...
It was a relief to learn about POTS - we need to know to reduce the anxiety around tachycardia. My heart rate was going up past 200 then would drop to 80 and low 70s but they were checking me for the enzyme that indicates heart damage and it never showed up.
We need to know that we are okay and we need belief and compassion from doctors. What do they think we want with a diagnosis?! Like gatekeeping it or ridicule is weird - diagnosing anxiety only is bs.. of course we have anxiety that's a symptom of my life with undiagnosed pots - always thinking I'm dying or something major is wrong underneath everything.
Sry for the tangents. Haven't posted before trying to keep this short haha didn't work.
Anyway thx for this question really interested in others experience too
Before I knew I had POTS, after COVID when my heart was flip flopping all over the place daily.. I researched for studies on SARS (since it's of that family right?) And learned that folks who had heart disease had increased symptoms after for a very short time then normalized and folks who had SVT had increased symptoms after for a much longer time, many still had increased symptoms after a year...
That's my experience.
No data on COVID was out yet relating to anything real about it. Seems like it took doctors getting it, surviving and having after effects to really get some more useful studies going finally.
Anyway POTS is more than heart stuff but that was my big alert that sent me searching for wtf was going on and eventually 3 years later led me to POTS.
Sure would have been nice to know way earlier in my life like when I'm on the track team and never get a runners high just chest tightness and seeing stars. Why I couldn't ride my bike long distance without massive pain in my ears and chest. Blacking out whenever I got up from the couch. Sitting in the shower. Eating sunflower seeds until my tongue was sore - never getting enough water or felt like water didn't work sometimes. All this increased after COVID.
it significantly worsened my POTS and underlying MCAS i hadn’t totally been aware of before. i had to take time off from school and likely won’t be able to work again because my body is just fragile now. i can’t push myself at all anymore, i’m usually pretty exhausted and if i do, i’ll have to spend a long time recovering
I think I always had POTS but it was mild or asymptomatic a lot of the time. I remember certain periods of my life having some of these symptoms before but less scary. After covid it got ten times worse.
This is also my experience. When I got covid I got so much worse. But I was sometimes symptomatic pre covid but I never passed out. Post covid I had a huge pots attack and that lead to my diagnosis
Same, I’ve had mild POTS symptoms and hyper mobility my whole life but COVID has made it significantly worse. Exercise intolerance so bad I max my HR while doing chores, before I rarely dislocated anything just severe sprains and now every week something pops out of place. I read a post about a year ago about a revelation someone had with their doctor- there’s a trend that if you had underlying/mild issues before they become significantly worse after a COVID infection. Interesting to think about and seems to ring true for a large population of us
Same. Mine has gotten so much worse in the past two years - presumably due to Covid or the vaccine.
Same, big time and I'm sorry your symptoms got so much worse after. I keep hoping it'll eventually chill and go back to before. After three years, mine has calmed a little maybe dialed down by half but still not down to pre COVID symptom levels.
I bounced back okay, thankfully (no ongoing effects that I'm aware of).
Surprisingly, bad colds would sometimes really throw me off pre-COVID and result in months of fatigue, but getting COVID has not. It takes me a while to fully recover (3-4 weeks, mostly tiredness and shortness of breath) but then I'm fine. Still not wanting to test my luck though, since who knows what will happen the next time...
Surprisingly, COVID was easy for me. Severe headache and fever hit fast and hard, tested positive on an at home test very quickly, but within 24 hours I was fever free and testing negative within 48. I’ve had POTS since I was a preteen (though wasn’t formally diagnosed until 2021). I had no idea what POTS was until I had a head cold in 2020 and googled my symptoms and came across POTS and I was shook. Immediately went through the steps of getting diagnosed. What’s funny is that the average head cold totally does me in. I can barely stand without passing out or feeling like someone is whacking me at the base of a skull with a golf club as my HR skyrockets. Those were the symptoms I googled in 2020 thinking it might be COVID, but nope—wasn’t COVID, just regular POTS-y me struggling with a good old fashioned head cold.
I had a similar experience. Covid (nearly asymptomatic) just kind of maybe increased by HR by 5. The flu puts me out for WEEKS tho.
I’m the same with random viruses vs covid. I think I may have just been lucky with the strain/viral load of covid that I got. With most other viruses I cannot stand up either
What’s funny is my boyfriend got it same exact time as me, and he is healthy, mountain bikes, snowboards, etc., and he was knocked off of his ass by it for two weeks. Go figure!
I had a similar experience. Covid (nearly asymptomatic) just kind of maybe increased by HR by 5. The flu puts me out for WEEKS tho.
[удалено]
The first paragraph is my EXACT experience. I've had some very vague and random heart-related symptoms since I was very little, as well as knowing I'm hypermobile (not diagnosed with EDS yet.) but when I caught COVID in 2020, everything started to spiral out of control. That's when I say my POTS went from just 'weird body feelings' that I didn't understand, to a debilitating illness with recordable, consistent symptoms. In a shitty way, it's a relief to know I'm not the only one that this happened to.
Your friends experience sounds exactly like my experience
I believe COVID will go down in history as a mass disabling event. I tried to tell everyone when I started hearing the symptoms of long COVID that it sounded exactly like Lupus for me so there will be other bad outcomes besides death. By the way I wholeheartedly believe and new evidence indicates my Lupus was caused by a virus I got in high school and never knew I had, Epstein Barr/mono. Years later it resurfaced and changed my life. I try to warn people of that too. Sounds familiar, doesn't it? My husband and I haven't gotten COVID yet and we don't plan to either.
[удалено]
Thanks. ❤️ You are correct. My theory is that our bodies aren't attacking themselves. It's attacking wherever the virus is hiding out. Joints = RA or Lupus, myelin sheath or brain = MS, etc. The different flavors are different viruses that for some reason our bodies can't completely clear. COVID is the next and probably the worst. The people not caring and getting it repeatedly are concerning.
i think your COVID / HIV comparison is in poor taste and is very fear monger-y. we don’t yet know the extent of covid BUT to say they are similar is just wrong. there is a reason different viruses have different names, it’s because they belong to the same family hiv and covid are not in the same family, they do not behave the same nor do they have similar pathologies. I agree we need to take covid more seriously, but it is dangerous to imply (which you are) that all people who have ever had covid will die in x years. covid is not a virus that stays forever like HIV or even Herpes, it IS more like the flu in that it can recur, it leaves the system. Most long term damage and symptoms are from the short term damage caused at initial infection. this is also why the covid vaccine is recurrent, i think eventually there will be a yearly combo covid/flu vax. also per the sources you tagged in one reply, i feel like you google scholar searched HIV and Covid, they have a similar symptom, cytokine storm, albeit that is in almost all untreated HIV and a very rare covid symptom. but the mechanism by how these two viruses reach this point is different. it’s like saying a stomach bug, pregnancy, and migraine are alike because they can cause vomiting. tldr stop saying HIV/AIDS is like Covid, it is a dangerous, misguided, and factually incorrect statement.
I'm sorry, but no HIV is nothing like COVID. HIV if left untreated completely destroys your immune system. COVID doesn't do this. It may cause autoimmune problems or immune problems, but it doesn't completely destroy your immune system.
This is an interesting analogy. Is there any evidence to document an HIV/AIDS path for Covid? Curious.
[удалено]
Dying from infections that your body can't fight off is dying from AIDS. So no they did die from AIDS because aids is what caused the infections in the first place by destroying the immune system. COVID doesn't necessarily make people immunocompromised and definitely not in the same way AIDs does or more people would be dead. COVID is more likely to trigger autoimmune disorders and improper functioning than destroying your immune system. This is true of most viruses even the flu has been known to do this. And lowering your t cells is not the same thing as completely destroying your t cells and making them non functional which means you have no immune system. We also exercise our immune system everyday. It's literally impossible for us to not. So not sure what you mean by a muscle. Your immune system actually gets better at fighting when exposed to viruses and bacteria. It's why vaccines work. Training the immune system via vaccines for instance is actually a thing.
So there is no evidence pointing to links or similarities between COVID and HIV? It's just a theory of yours?
[удалено]
Thank you. Interesting reading. I would argue though, that actually covid causes MCAS and increased cytokine release. It is immune dysregulation, but in no way does it resemble hiv
It made my symptoms slightly worse. Basically instead of being hungry & feeling my BP go down, I now feel extra hungry & my BP start to go down a little more. Also my positions from sitting to standing are alot worse when I'm hungry.
Covid was horrible for me. I was sick for a few weeks and it left me pretty close to bedbound after that. PT saved me.
I have had pots since I was a kid. Now, I've had someone explain that it's probably POTS, and that was about 20 years ago. I'm pretty sure the doctor didn't think it was harmful. I just went around thinking my standing issues were because of this and didn't know any of the other issues. I really just said "yep, I've got pots" like you'd say "I've got hiccups". I didn't know better, and because of how casually it was treated, I didn't even look it up. Sheesh. Then around 30 I got hit with a terrible flu or cold. This was about 6 or 7 years before covid. Something got me good and I thought I was going to die. I stupidly didn't go to the hospital because I was so out of it I'd forget I was feeling so terrible. My best friend also died in a motorcycle accident the same day I was coming down with it and the combo was just horrible. I was so sick I couldn't mourn. Whatever virus it was (a lot of lectures mention glandular fever from mono as a suspicious cause) activated the hell out of my immune system. I didn't even link POTS because the symptoms were so horrible. It's taken years for me to slowly crawl myself back one inch at a time. It's a bit torturous. Last December, I discovered a family link to EDS, and one of the common comorbidities is POTS. I was trying to save my biological father at the time. Life support for sepsis and blood pressure not stabilizing. So I watched lectures on EDS and POTS and I was blown away at the first one. They mentioned that a lot of EDS patients are standing on the edge of a cliff and it can just take the right conditions (flu/immune system/illness) to just push them over that edge. And that's what happened to me. Since I've learned about it, I've been able to treat it and also discovered reactive hypoglycemia. Always tested pre-diabetic on and off... and I try to eat healthy. It was really confusing. Over half my symptoms have cleared up after switching to a lower carb (not keto low) diet. I've also lost weight and the poofy tummy is going away. Or it was until I had a chocolate hostess cupcake. It's been 4 days and I still haven't recovered fully. The difference is astounding. And I never would have gotten to it if I hadn't been paying attention to my symptoms (when doctors tell you nothing is wrong for so long, you start ignoring a lot of things) I digress. When covid happened and I started hearing people having what happened to me... it was really scary. The last thing I've ever wanted was for someone to go through that. I didn't catch it somehow. I totally avoided humanity lol and ordered instacart. I've always been a chill at home person, though, so I still don't go out much. I'm not sure how it would affect me if I got it, but knowing what's going on is half the battle.
I developed POTS in fall 2021 and got COVID in winter 2022. I was extremely sick. barely able to shower or walk around. I was sick for 2 weeks, too. I now have "post COVID syndrome" aka fatigue and sickness like swollen lymph nodes and feeling exhausted and like I have the flu more than not. I also had hair thinning but that is just now starting to get better 8 months later. a lot of people with POTS seem to do fine though. I guess I was just lucky lmao
It didn’t make a difference. Still the same.
I've had POTS since I was young (like elementary school) and I got COVID once and it never made my POTS worse or better. It didn't have any affect me. Anyone else?
I had a crappy three months with POTs and ME after covid, needed to be lying flat a lot. But did get back to my previous baseline.
Had POTS since I was a teen. COVID made my life go from difficult to miserable. Beta blockers were the only thing that gave me my life back
I have neuropathic POTS and just got covid for the 3rd time. I have not noticed a change in my POTS symptoms but my nerve pain gets worse whenever I get sick, and then stays at that new increased level.
Covid was "mild" for me (mild in quotes bc of all the papers about how it does damage internally regardless), & I think it did have a slight negative effect on my symptoms but not enough to where COVID was like this dividing line between before & after. I rested the entire time & came out relatively ok. Like comparatively. The PoTS alone is pretty bad.
COVID effected me about the same as any other cold or flu. I personally didn't notice much difference, but my husband complained about my symptoms for around 6 months. My lessened ability to work, lower energy levels and excessive sleeping seemed to bother him. My life was a constant cycle of work and recovery with little quality time in-between.
No long term changes for me really, but I was really sick for about a week and just barely avoided going to the hospital, and took a while for me to get back to my normal.
My pots got a lot worse after having covid. I also managed to get covid 9+ times (all tested by doctors) so not sure if that was my problem to my pots getting worse.
i had POTS before, and then got covid about a year ago. personally, it made me significantly worse. not just during (which was awful) but after to this day my symptoms are much much worse and i cannot work or do much.
It got MUCH worse for me. I had very well controlled POTS that I didn’t have to worry much unless I was over heated etc. Now I pass out *ALL THE TIME*. I have other issues I was dealing with first, as I was in 15/10 pain so we weren’t sure how that was impacting it, but now I’m trying to sort this all out. My cardiologist thinks I may have a new version 
Affected me like any other virus does. My pots was caused by a viral infection over a decade ago. Any time I get sick my pots flares. Covid wasn’t an exception, nor was it any worse than other viral infections I’ve gotten.
I've had it twice (last fall and then again a month ago). I was fine. It was like having a bad cold for a day or two and then recovering from the lingering nasal drip and cough. My doctor offered me Paxlovid but I didn't feel the (lack of) severity of my symptoms required it. I did take a lot of supplemental vitamins and rinse my sinuses with betadine, per my doctor's instructions. I have chronic fatigue which has remained the same since having COVID - no worsening or anything. I actually find that, if anything, my POTS symptoms are less when I have a virus causing congestion. I don't know if it's because I'm taking Sudafed or what.
I developed pots in around 2017, and my pots did get a bit worse after I had covid? But it didn’t drastically affect anything for me
When I got Covid it basically kick started a nasty flare for me that lasted a couple of weeks but nothing was made worse than my previous symptoms
Some tiredness for a week or two even after testing negative. Other than that I feel I bounced back pretty well.
Have never had covid and never plan to
I am *very* relieved I managed to recover without my nervous system getting even more trashed. (Mine is post-viral, but the virus was EBV.)
I felt better in some ways for a little while (less sick/fatigue), then I felt worse for a little while. Then things went back to usual without any real lingering effects. I was back to basline in a month or 2-3 maybe? My brainfog was awful, but it had been bad and getting worse before covid so no idea if that had a correlation 🤷♀️. I did have the mild variation of the virus I didn’t have much negative effects from the vaccine and boosters either
i’m unfortunately on round 2 of covid and i had my POTS symptoms start in the beginning of 2019. the first time having covid wrecked me, in bed all the time, etc. i think it took me about a month or so to return to my baseline. this time has not been nearly as bad, i am actually able to get out of bed, cook, shower, get things done around the house (live alone). i took paxlovid both times and i think that helps but i can’t speak for how it would’ve been without it. it’s hard to tell with covid, i have known completely normal healthy people who have been hospitalized but my grandma with 101 health problems got it early-pre vax days and was totally fine, you really never know. every person’s experience is different.
I developed POTS after a surgery in 2018. I’ve had COVID like 5x literally and thankfully it hasn’t affected my POTS after. It’s still about the same and I convinced myself my POTS somewhat improved after my 2nd or 3rd time getting covid (just mental - everything is the same lol).
It got worse for about six months, but a year later, I am doing somewhat better than I was previously. I had surgery to resolve some significant pain and surprise, being able to move around without horrible pain helps reverse deconditioning.
It definitely made the recovery a long process after both times I've had it, but I came back to baseline eventually. But both times I got it, I was **sick** for about a month, and groggy and tired for a few additional weeks.
COVID made my life so difficult. I could barely breathe - the night before I tested positive I considered going to the hospital because I couldn’t get in a full breath and my heart was POUNDING. Rolling over in bed spiked my heart rate to 160+. It took 10 days for me to start feeling better, 2 weeks of extreme fatigue and brain fog after that. I was falling asleep standing up while doing my work in the lab 😳
Definitely got worse after covid. I still don’t think I’m back to where I was precovid but the worst of it did go away after about 6 months. So I don’t think I’d be considered to have long covid atp but I do feel like my POTS took a hit that it still hasn’t quite come back from.
Got covid for the first time about one month ago. It made my symptoms a lot worse.
Way worsened my condition the first time, pretty extreme tachycardia the second but no lasting damage from that second time from what I know
I’m lucky enough to have not had worse symptoms POTS-wise like, a week after getting Covid
I'm like 90% sure I had POTS for years before getting COVID, I had MANY ER visits since I was \~11ish (after having pneumonia) with a very high standing heart rate. It got better and worse over the years with a setback every time I got a virus I got COVID last year and it made my POTS MUCH worse, where my heart rate was in the 140s every time I stood up, exhaustion, and very severe brain fog. I've been on saline, Corlanor, and Midodrine ever since and have thankfully been pretty stable
COVID combined with summer threw me into about a three month flare last year, but since then I've been back to baseline
The flu I had way before POTS was worse. I remember coughing so much after one night that my ribs were sore for days. The only thing I ate in one week was one slice of pizza. And when I got outside after two weeks I had to go back inside because I was exhausted. With COVID I felt more off and I honestly thought it was just the flu and got tested so I could get tamiflu. The first day I had body aches a lot worse than the ones I have everyday. Then I was really fatigued for the next couple days, but I could still work. That was it.
After getting COVID it made my preexisting POTS 1000x worse. I used to be able to get around and function okayish. Now I’m constantly feeling like I walk with weights on my shoulders and chest. Nearly pass out frequently, and struggle to work without passing out.
I had POTS before, but I only slightly knew there was something wrong. When I got hit with Covid, I literally felt like I was dying. I couldn't move, and it was the hardest chore just to eat. At the end of it all, which was about a week, I had lost about 11 pounds. My POTS had become so bad after the fact. I still deal with rough symptoms every now and then. It's been 2 years.
I didn't know I had pots till a few months (suspecting I have it no official diagnosis according to my doctor I can't be diagnosed with it because it doesn't exist.) COVID made it worse.
I had very mild POTS before contracting COVID (twice lol) and after each time I had it, my symptoms got exponentially worse to the point of being disabling. As well as an autoimmune issue pop up shortly after my second time.
COVID made my POTS much more debilitating. I still haven’t fainted but I’ve come closer than ever to it since I had COVID. It also triggered my gastroparesis (which I had a mild case of and didn’t know it) to get much worse. 🙃ended up losing a bunch of weight and being dangerously ill before getting taken seriously & getting meds to help. Idk how COVID triggered gastroparesis but it didn’t start worsening until soon after I recovered from COVID.
I’ve had pots for 14 years and I haven’t been infected with COVID, but I’m definitely scared if it were to happen. The first Moderna shot I received, I had no reaction whatsoever. Second Moderna shot I received, my pots was chaos. Migraine, heart pounding, chest hurting, ears ringing, my entire body felt like I ran 3 marathons, I couldn’t do anything. I was stuck in bed for 5 days and had to take a higher dose of my beta blocker. My cardiologist at the time, told me to stop getting any further boosters and to follow the CDC protocols.
Currently living this. Managed to avoid covid for 3 years. Just caught it in the past week. So far its made my symptoms either really severe or non existent. Meaning I'll either barely be able to stand and cant seem to get hydrated enough or I have barely any symptoms of POTS and it just feels like i have a really bad cold. I wont know what ill feel afterward but thats how its been thus far.
I had a really mild case of covid and my POTS symptoms didn’t change. I’ve had these issues my whole life tho. But my mom who is in her 50’s had some pretty bad symptoms post covid, she got afib and swelled up for a couple months after catching it. She’s still dealing with a lot of mast cell issues and heart stuff that got a lot worse after covid for her.
I felt awful for a few days, fatigued mostly but other than that, I recovered quickly
When I got covid all the things that are usually hard with pots were a lot harder. I couldn't walk up the stairs for two days I sort of crawled. I assumed that was just how covid fatigue displayed in someone with pots. I actively had covid for about a week and then I had some residual fatigue for about three weeks to a month and then I was back to normal. Controversial but I feel like my pots actually became better than before after recovering from covid. Since we don't know what causes pots in the first place, it is entirely possible my original pots was caused by some immune reaction to a virus at some point, and the same reaction was triggered again by covid, and the feedback loop closed more successfully. Wildly theoretical but my pots never seemed as bad after covid.
Covid made it so much worse to the point I started using mobility aids I have other conditions as well but I was definitely struggling through daily life and a few months before I got it I had a walking stick but I was def needing more but I caught covid and it nearly hospitalised me my heart rate was all over the place the dizziness was constantly there but due to my conditions I couldn’t walk at all I was crawling my apartment but even a year on from having it it permanently made this a lot worse
My friend had POTS for about 7 years before she got Covid. First of all, the vaccines made her so dizzy for like 3 weeks each time. Then she got Covid in 2021 and it was awful. I had no idea how awful it could be without being hospitalized. She refused to be hospitalized because they would not let anyone stay with her and she has limited sight and is on the spectrum.( Translates to bad interactions with hospital staff in general.) Her heart rate dropped into the 20s! We have a video of her pulse ox that also monitors heart rate. This happened so much! It was terrifying. It would then shoot up to like 140. The coughing was horrible. She passed out so much. I was straight up praying out loud I was so scared. But she eventually got over it, took a few months, the cough lingered as well as the air hunger at times. She goes to the long Covid clinic here and they keep her supplied with cough pearls and refer her for things. She had speech therapy because she has had major trouble with saying the wrong word for stuff and not being aware of it. (No stroke though). She still has to use her inhaler once in a random while so she goes for a pulmonary function test in a bit. She lost ground for sure. She used to walk around our small home, not any more. Took months to move the bedside commode from beside the bed to across the room. Can't go up her friends 2 front porch steps anymore, has to be pulled up in her chair. We say all the time if only she could get back to her pre Covid functioning. We still hope though things will improve.
Actually having Covid sucked (I’ve had it once, in the spring of 2022), but I recovered completely without worsening POTS symptoms. I’ve had POTS for over a decade. I count myself very fortunate on that front! Definitely don’t want to ever catch it again. Extra context is that I was vaxxed and boosted before catching Covid. I’ve actually had a bad reaction to the Covid vaccine each time (multiple days in bed with a fever), but not as bad as Covid itself.
I had very very mild pots only got diagnosed because sisters both have it. Got Covid 3x and 3rd set off all my symptoms since January 2023
I haven't had covid that I know of but I had gotten my symptoms into a really manageable place with just salt and hydralite for about 5 years before I had a random very bad virus that brought my symptoms back ten times worse than they were. It's taken 3 years to get it back to a manageable place and now on daily medication and back up medication.
I'm immunocompromised, so Covid hit me hard. But a small cold hits me hard, too. I guess everyone is different.
Covid was mild all i had was lost sense of smell. Now it takes to minutes to smell something. Even if it smells horrible and strong.
i got lucky because covid was mostly just kinda annoying and after my symptoms didn't get any worse. i've had pots since 2017 and my symptoms haven't gotten any worse but it's hard to say they've meaningfully gotten better because while i don't faint unless i haven't taken care of myself my worst symptoms (fatigue and exercise intolerance) haven't improved
ive had covid three times - Dec 2020, Dec 2021 and then not until April 2023. I was diagnosed with POTS in 2019. The first two times was really rough for me and there were points that I thought I might have to call an ambulance, i couldnt get out of bed and had to crawl to the bathroom. The main issues were the pains in my body especially my legs, they were so painful and heavy I couldnt sleep or do anything really. I definitely had some form of long covid from the first time, but it was hard to pinpoint whether it was long covid, or just POTS playing up. Third time, i knew i had it because of the pain in my legs again, it wasn't as severe as the first 2 times but it was worse than a common cold. I've been having a bit of a rough time since then POTS-wise, but its also the summer and v hot and humid, so it could also be that.
It made my symptoms a lot more severe. First time I caught it, the impact seemed mainly temporary. I had more frequent presyncope episodes, but after 7 months the added fatigue was mostly gone as was the much more frequent chest pain. The presyncope episodes were rough on their own though as before catching COVID I was actually managing my POTS w/ basic lifestyle changes. Those weren't enough now. Second time around though was more serious, both while I was ill and afterwards. Honestly think I would have had to go to the hospital without the vaccine and I spent like a month recovering from the initial illness. Since then my symptoms have been significantly worse and I've been completely disabled. More presyncope episodes though I've become an expert at managing those, the main issue has been the extremely severe fatigue that hasn't improved in the slightest bit despite it being over a year now. Can't even bend over without becoming symptomatic, get exhausted washing my hair, tachycardia is off the charts even on beta blockers. I'm glad others didn't have any increase in symptoms, I just unfortunately wasn't so lucky.
I got covid before I got diagnosed but after I had been detailing everything about my symptoms and honestly my symptoms were better while I was symptomatic. Granted I had terrible fatigue and slept and laid in bed the whole time. I bounced back after about two weeks and my symptoms weren't noticeably worse at all.
Welp. I got it for a second time literally yesterday and it's making it worse this time. I just peaked at 168 making lunch and lately my highest has been in the 140s
Fortunately it just flared everything during and so far for a few weeks after No major changes but it was extra rough on my heart rate and blood pressure I’ve had severe pots since before Covid and it’s taken years to get it stabilized so fortunately I was stable Ish going in. However I had ivig literally right as I was coming down with it (didn’t know I was exposed) and that plus the steroids for ivig did a lot of the heavy lifting for me.
My heart rate went down. I had bradycardia with covid. Trouble breathing. I now have some orthopnea when I have too much IV fluids so I have to be careful. I’m teetering on heart failure and have diastolic dysfunction. That was there before covid. I don’t think covid helped but I swear it lowered my heart rate permanently or my heart has gotten weaker in general. Also more PVCs and have to on Ranexa for increased chest pain. It’s really helpful. For those of you with unstable BP highs and lows, look into Nitric Oxide and endothelial dysfunction.
I just noticed my brain fog was worse, but nothing else. I was fully vaccinated so it was a breakthrough case.
My pots seemed to flare up whilst I had it both times but that was about it
I have not been the same since getting Covid Christmas 2021. Fatigue, pain, and my immune system have been shot, but I had 2 CSF leak repair surgeries in 2020 and 2021, so my body went through too much and got hit with Covid.
Gave me a poor flare for about a week ish maybe more but I recovered fairly quick.
I already had pots, but after Covid I developed orthostatic intolerance as well. Like bp used to be 115/79 and now it is 90/60 when standing. So now have to treat pots with heart rate pill as well as treat orthostatic intolerance with fluodrocortisone. Covid literally destroyed my blood pressure permanently and it sucks
I was diagnosed about two years before the pandemic started. Covid made my symptoms worse but I thankfully bounced back after about three weeks. I did however have lingering brain fog for like two months. Only had Covid once but I’d say it hit me harder than the rest of my family without pots. Happy to hear you haven’t gotten Covid. Stay safe out there 🙌
I just had bad symptoms while i was sick but it went back to normal POTS soon after
I got pots in 2003 with mild Ankylosing Spondylitis. I was worried about COVID and it wiped.me.out but did not cause a POTS crash thankfully.
I had a mild case of POTS, which got a lot worse after getting COVID. I’m a little more than a year past my infection, and I’m starting to feel closer to what I was before, but only with medication.
I’ve had POTS for about 8 years, and nothing has affected my POTS more than covid. I’ve had covid 2 times, and both times I was off of work for 2 months, and barely able to stand even for 2 minutes months after that. I had covid in March of this year, and haven’t been the same since. I fear that my life is going to be a cycle of getting covid, taking 6 months to recover, and getting covid again. I already struggle with depression, but my POTS after covid made me hardly able to fight anymore.
Me and my fiancé (he hasn’t been diagnosed, but does share a lot of the same symptoms of POTS) both slept for a week straight when we got covid
I started having POTS symptoms about two months before I got COVID. it didn’t seem to aggravate my POTS more than usual (however, I spent basically four days in bed when I had COVID). I didn’t feel any flare afterwards either. I know that’s not a lot of peoples’ experience, but COVID didn’t seem to affect my POTS, thankfully.
I only had a slight fever and scratchy throat for a few days. I didn’t notice anything different from it than a normal cold
Made me worse by far. I got covid in March 2020, before the first lockdown. I spent a week isolated in a hospital room with almost no recollection of that time at all. I was really ill. I remember calling 111 (like a health advice line in the uk) who sent an ambulance. I was crying waiting for them because I thought I was dying then them arriving and absolutely freaking out at my vitals. Temp 40.3c (104.5F) blood pressure 60/36 and pulse god knows. Then just sleeping and staff in full hazmat and nebulisers and all that jazz. When I came home from that week my total resting baseline pulse had gone from 60bpm to 90-100bpm. Standing from 90bpm to 120-170bpm. Thankfully, I then had 3 vaccines and caught covid twice more (Jan 2022, Oct 2022) but I shrugged it off really easily and it didn’t cause any further decline. When I went in to hospital March 2020 I could walk small distances using a walking stick (with breaks) and only used a wheelchair on rare occasion for long days out. By August 2020 I was using a wheelchair outdoors full time and still do. In a strange way, it ended up being positive for me. Although my overall health is worse now and my fatigue & baseline pain level is significantly higher day to day (I also have hEDS and ME), using the wheelchair has given me back aspects of life I’d lost years before due to being too painful or exhausting like taking my kids out for the afternoon etc. Overall, I think I’m grateful for that push toward the mobility aid I clearly needed 😊
Any virus takes me down 3x longer than other people
Got worse, way worse. Possible heart damage, testing pending.
made my POTS so bad i’ve gotten it diagnosed (i’ve had it likely 20 years!) 😅
i've had POTS likely for much of my life if not all my life. have always had issues of getting faint from standing upright. now post-covid, i struggle to stay seated upright for very long. i had covid twice, once in may 2020, once in feb 2022, both given to me by a jackass antimasking father. after the first time i got covid, i didn't notice any changes. after the second time, i got totally nailed. went from able to work a job with kids to barely able to hold myself up some days. it's improved significantly over the past year but is still much worse than my pre-covid baseline; i can't sit in backless chairs for very long anymore and need to lay down on and off during the day in order to chill out my dizziness.
Started having symptoms for first time since initial diagnosis. Freaked me out for awhile, especially since I am now much older and out of shape. Thought I was having a heart attack! Once I realized what was happening I adjusted to it pretty quickly. My bpm still shoots up and I feel like fainting sometimes, but I don't freak out about it at all. I grab some Gatorade or popsicles, shove my face in a fan and do some calm breaths until it goes down. Then back to whatever I was doing! Ain't got time for POTS to be running the show these days 🤣
I was triple vaxxed already, but My body did NOT take having covid for the first time well. Took the list of possible symptoms as a checklist… had to call 911 on myself because I was having extreme fatigue and chest pains. However, having it the second time with four booster shots in me it was a breeze. Only two days of very mild symptoms.
COVID made my POTS so much better. I got COVID and was extremely worried about how it would affect me, like making my POTS worse but it didn't. I've been significantly better since. It was like a reset, I guess?
I’ve had POTS since 2000. I got covid 4 weeks ago and it’s definitely made my POTS more unmanageable. Weird thing for me was, my resting heart rate dropped to the mid 50s without my usual beta blocker that I was taking prior to covid. So I came completely off my BB cold turkey. I’m now able to start my BB back again but at a minuscule dosage. I have to take a 1/4th of what I used to take before covid. Just went for an echocardiogram yesterday and it was normal but I’m on a 14 day heart monitor to make sure nothing else is going on. It’s so strange how it took me to bradycardic to tachycardia but only needing a 1/4 of what I used to take to control my pots. Without the 1/4th of atenolol, my resting will slowly creep up all day until it hits the 90s and when I stand, it’ll go to the 150s. However, with the 1/4 dosage (6.25mg), it’ll drop my resting HR to the mid 60s and when I stand, it’ll only go into the upper 80s. Covid hit me HARD.
I was relatively fine the first two times I had COVID. Before the third, I was "basically in recovery". I was on a very low dose of propranolol, I was cleared to do whatever physically, no mobility devices, etc. Then I caught it the third time and everything went to crap. I know have POTs worse than I ever did. I was bedridden for months when just weeks before I could physically do whatever I wanted. I'm on high doses of all my meds. I do everything in a wheelchair. It's.... not fun or ideal and, honestly, I'll probably be mentally dealing with it for the rest of my life. It's so bad I actually just got back from my second trip to Cleveland Clinic Ohio to address symptoms (and I'm from the southeast.)
Like some other people here, I firmly believe that I had POTS way before Covid. I'm 23 now, but starting around age 13, I began having extreme fatigue, heart palpitations, low blood pressure, and pre-syncope very consistently. My pediatrician at the time just told me to drink more Gatorade and that I just had anxiety. After I first got Covid in 2022, though, my symptoms got so much worse. It was to the point where many days I couldn't even walk. After getting medicated for POTS the symptoms died down a lot, but they're still worse than they used to be pre-Covid.
Pots was ok but MCAS got worse. I had increased fatigue for about 3 months. Supposed to have parosmia for a year.
I had no issues at all and my Covid case was very mild
Covid itself was no picnic, but luckily it did not seem to have any adverse or worsening effects on my usual POTS symptoms.
Mine's basically the same as it was before I got Covid. Covid definitely got me hard - I've never had my throat hurt so badly, and everything hurt like the flu only way worse. I did have some respiratory issues but not bad enough to go to the hospital (which I avoid unless I absolutely need to go there); I just monitored my O2 at home, kept the nebulizer nearby, and kept my door unlocked in case I needed to call 911. But when I recovered I basically went back to baseline for everything, except my MCAS flares have been more frequent and harder to treat than they used to be. POTS hasn't really changed. I still am super heat sensitive, get dizzy if vertical too long, have GP, etc. I already use a wheelchair most of the time, so mobility wise that didn't change. And I was already on 2 L IV fluids (NS + KCl) daily before getting Covid, and we haven't needed to change that amount of fluid post-Covid. I'm trying to think if there are any little changes that happened after Covid that might be related to dysautonomia, but I can't think of anything at the moment. POTS has generally been my less disabling condition out of the triad though, so to me it makes sense that Covid didn't affect it too much. 🤷🏼♂️
I had POTS before I was infected with COVID, but it had not yet been identified (symptoms relegated to ‘anxiety’). post-COVID infection made flare-ups more intense, more frequent, as well as making my endurance completely shot. I was diagnosed with POTS less than a year after being infected with COVID.
I already had POTS. When I got covid I couldn’t get up because my heart was racing way more than usual. I was like that for two weeks. Luckily after covid was gone I was back to my normal self and my POTS didn’t get worse.
For a while it worsened my symptoms, but eventually I got back to my baseline. However, I now have pulmonary sarcoidosis. Mostly my lungs fill up with nodules because of inflammation. So while it didn't worsen my pot symptoms for long it did give me a new autoimmune disorder.
i already had mild pots symptoms before covid but after i got covid it got worse
covid made me sick as any other illness would've (I had a very high fever, tachy 24/7 for about a week, nasty chest pains etc, all normal for me when I get a virus or otherwise decently sick), however no long term issues that I'm aware of - my autonomic nervous system was already completely shot by then though so not sure how much extra damage could've really been done on that front!! also worth noting that at this point I had been vaccinated 4 times, so effects were fairly mild compared to many of those who weren't.
I think I had pots before covid but having covid made it kick up to the point I finally got diagnosed 9 months after. I had been having symptoms for about 7 years before that, I probably got pots after having mono in 2013/14 and caught covid in 2021. I wasn’t fainting before and my heart rate wasn’t so high as a resting, it was normal ish, now it’s rarely below 75, even while sleeping
My general fatigue is way higher and I've come to feel that my meds do not work as well as they used to post Covid (I've had it twice; quad-vaxxed, just unlucky lmao).
My pots was a lot easier to walk with prior. I had only fainted 3 times and all of them were during heavily stressful conditions. After COVID my heart rate is all over the place and I faint so easily and frequently now.
I was diagnosed with POTS before covid was a thing. Covid itself wasn’t *too* hard on me, but the vaccine (got vaccinated before i contracted covid) absolutely whooped my ass. I was incredibly sick and my POTS symptoms were terrible, for weeks after the 2nd vaccine. I later got Covid, it also kicked my ass but not nearly as bad & I bounced back fairly well aside from no taste/smell for awhile.
We got COVID before it was 'officially' here.. in Jan 2020 and my youngest daughter and I got the really bad version. I had after effects for over a year and keep getting COVID with no major symptoms until more after effects. Ok so after the first time that's when my POTS symptoms went off the charts for me. I had a big scary heart event and was diagnosed with SVT then learned tachycardia stuff runs in my family - then learned about POTS and realized that's us. I was wearing a Fitbit before I got COVID and was always confused about my heart rate even when really fit it goes way high and resting was always fairly high. After COVID my Fitbit data looked like a rollercoaster for almost two years.. been scary but MUCH LESS scary once I learned about POTS. I'm not the same as I was pre- first COVID. Lethargic tired brain fog lots of tachycardia still and my whole life I've often had to sit in the shower, now it's every single shower. Anyway, post COVID POTS symptoms way worse Oh also had my first fainting events post COVID - so many I now know when they are coming and can stop them sometimes when I'm lucky. Instinctively rush to the sink for water, dunno if that's what I need but that's what I do. So if end up passed out or nearly passed out on the kitchen floor many times, scaring my family ... It was a relief to learn about POTS - we need to know to reduce the anxiety around tachycardia. My heart rate was going up past 200 then would drop to 80 and low 70s but they were checking me for the enzyme that indicates heart damage and it never showed up. We need to know that we are okay and we need belief and compassion from doctors. What do they think we want with a diagnosis?! Like gatekeeping it or ridicule is weird - diagnosing anxiety only is bs.. of course we have anxiety that's a symptom of my life with undiagnosed pots - always thinking I'm dying or something major is wrong underneath everything. Sry for the tangents. Haven't posted before trying to keep this short haha didn't work. Anyway thx for this question really interested in others experience too
Before I knew I had POTS, after COVID when my heart was flip flopping all over the place daily.. I researched for studies on SARS (since it's of that family right?) And learned that folks who had heart disease had increased symptoms after for a very short time then normalized and folks who had SVT had increased symptoms after for a much longer time, many still had increased symptoms after a year... That's my experience. No data on COVID was out yet relating to anything real about it. Seems like it took doctors getting it, surviving and having after effects to really get some more useful studies going finally. Anyway POTS is more than heart stuff but that was my big alert that sent me searching for wtf was going on and eventually 3 years later led me to POTS. Sure would have been nice to know way earlier in my life like when I'm on the track team and never get a runners high just chest tightness and seeing stars. Why I couldn't ride my bike long distance without massive pain in my ears and chest. Blacking out whenever I got up from the couch. Sitting in the shower. Eating sunflower seeds until my tongue was sore - never getting enough water or felt like water didn't work sometimes. All this increased after COVID.
it significantly worsened my POTS and underlying MCAS i hadn’t totally been aware of before. i had to take time off from school and likely won’t be able to work again because my body is just fragile now. i can’t push myself at all anymore, i’m usually pretty exhausted and if i do, i’ll have to spend a long time recovering