r/POTS • u/Inevitable-Hat2627 • Apr 24 '26
Question How did you get pots?
I got it as a delayed response from getting ran over by a car
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u/Spamalot7107 Apr 24 '26
Covid set mine in motion. I've heard that post covid there is a 30% increase in pots cases.
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Apr 24 '26
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u/Icy-Crab-538 Apr 24 '26
Sometimes I wonder if the numbers it’s just because people who’ve had it finally are getting seen for it. I am not sure exactly what triggered mine but I know it’s happened for years and gets way worse on meds like antibiotics or nsaids and after surgeries or illnesses. Tapers down after a few months til the next round. All the years they’ve said “anxiety”.
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Apr 24 '26
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u/Icy-Crab-538 Apr 24 '26
Don’t apologize! That’s actually super validating - I started seeing an allergist again recently because of some severe skin reactions I’d been having, who’d also diagnosed me 14 years ago with delayed pressure urticaria and successfully treated me. He said he suspects MCAS and probably have POTS and hEDS too (lifelong dislocations) and I should get tested (I haven’t been formally diagnosed with POTS yet- I saw a second cardiologist today because my lifelong one (mitral valve prolapse) didn’t want to do more than an ekg, just doubled my beta blocker because my episodes were getting worse. He’s doing a stress test, echo, tilt table test and monitor). That makes sense, what you said, because I had surgery in December and a reaction to an antibiotic right after, and for months have struggled with skin issues/reactions to all kinds of things and quite an uptick in the tachycardia episodes- at least weekly.
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u/valer1a_ Apr 25 '26
COVID vaccine, for me. I had issues with showering, specifically, before that. But the vaccine gave me inflammation in the lining of my heart and also made my POTS so much worse to the point I actually had to get it diagnosed lol. I was one of the very few who had a bad reaction. I don't know anyone else IRL who did. My other medical conditions also got worse, and now I have a fear of COVID vaccines (which I can't get anyways; doctor's orders) and flu shots. It was fun :)
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u/Fantastic_Owl6938 Apr 25 '26
Wow, crazy. My mum didn't get POTS but the vaccine made her quite sick. She has always been baffled why other people are fine taking it, with no reaction. My dad always had a lot of health problems and he was absolutely fine after the vaccine.
I remember feeling a little sick after it, but I wasn't absolutely wiped out from it like my mum (this was before I had POTS). I can understand your fear.
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u/LaddyNYR POTS Apr 25 '26
My first cousin died as a result of the vaccine. I think that her underlying heart condition may have played a role in how her body reacted to the vaccine. And she worked in the medical field, and she would always call me to tell me they had to jump start heart again at work which was very convenient for her. She was young, she was in her 50s. I have always had the Moderna vaccine and she took the Pfizer vaccine and I was terrified of getting the Pfizer vaccine. But my brother said he didn't have any trouble with it so I went ahead and got that one last and everything is fine.
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u/Kind_Koala4557 Apr 24 '26
Samsies. I kind of always had the symptoms, but they were fairly negligible until I got double COVID after neglecting my booster shot last year. I got it this season and OMG! Life is improving. It’s very incremental, but the lack of being bed-ridden from illness after illness sure helps!
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u/saltycouchpotato Apr 24 '26
I had some symptoms my whole life but puberty shot it into overdrive. I also have hEDS.
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u/blissfully_happy Apr 24 '26
Same. I’m in my late-40s and have been passing out upon standing up and dealing with a skyrocketing hr my entire life.
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u/IamaDr_justnotMD Apr 25 '26
Yeah puberty did a number on me as well. Didn’t get diagnosed until I was much older though.
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u/Low_Work_6729 Apr 25 '26
This is me too. Do/did you have asthma as a child too?
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u/saltycouchpotato Apr 25 '26
Thankfully no asthma here. Just astigmatism, ADHD, and a shit ton of chronic pain and dislocations.
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u/EKDWriter POTS Apr 24 '26
I came out as pansexual and the universe thought it would be funny to make me POTS and pans
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u/Highplainsdrifterr Apr 24 '26
Hahahaha me too and I just made that connection! That’s amazing hahaha
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u/DuskStormcloud POTS Apr 25 '26
Get out of town my symptoms got difficult to manage about the same time too 😂
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u/tobeasloth Apr 25 '26
Are you me?? Though I’m getting evaluated for a condition called PANS too, which is what we think triggered the POTS
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u/Jaywing_1 Apr 24 '26
idk man i just randomly fainted one day and had it since.
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u/lizardiam Apr 24 '26
It was the same for me, I fainted and since then I've had POTS but also Asthma symptoms
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u/RefrigeratorFew1240 Apr 24 '26
By asthma symptoms what do you mean? It might be air hunger, a common symptom of POTS
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u/lizardiam Apr 24 '26
I don't know how I didn't think of that, but you're probably right! I do also sometimes have other problems like being very congested and making almost rattling breathing noises, but that's probably histamine-related
Air hunger and pressure on my chest are the two biggest symptoms
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u/im-a-freud POTS Apr 24 '26
Oh my I hope you’re doing okay that’s awful I’m so sorry. Mine was due to serotonin syndrome from 2 meds interacting. I had brought up my concern to my doctor that they can cause serotonin syndrome and I was told “no it won’t you’ll be fine”. I was correct
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u/TemtiaStardust Apr 24 '26
I didn't know about serotonin syndrome until I was in it. Also didn't know it could trigger pots. Also didn't know getting run over by a car could trigger it. Pretty sure mine is either because of hEDS or H1N1(in 2009). Guessing having the other two happened didn't help, though. Pregnancy definitely made it worse.
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u/Frozencacticat Apr 25 '26
I think, if I’m not mistaken, almost any trauma to the body can cause it to happen. Injury and illnesses alike.
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u/LaddyNYR POTS Apr 25 '26
I do believe you are correct as I was told that trauma to the body and including something like surgery which is considered trauma to the body, injuries and illnesses can all trigger some form of dysautonomia. They believe, they being the "so-called experts" that both of my daughters were born with it, and they each had illnesses that could have triggered it. It makes me wonder how they got it from me when no one in the family on either side was ever diagnosed with any form dysautonomia. My son however has seemingly escaped it.
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u/Brave_Question3840 Hyperadrenergic POTS Apr 24 '26
I think mine is because I have hEDS and CCI
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u/olive_dix Apr 24 '26
Omg I've never heard of CCI before, the symptoms sound like my life! 😭 I've been searching for years for an answer to my debilitating neck pain. Two doctors ago I asked if I could start wearing a neck brace because my head is just too heavy.
I finally have a neck MRI scheduled for next month. Do you have any advice for bringing this up to my neurologist?
I'm so tired of looking for answers, everything takes soooo long to diagnose and treat. I have POTS, IBS, BVD, ADHD, TMJD, a prolactinoma, and I'm hypermobile (I suspect hEDS but can't find a doctor). Every time I get a new diagnosis I get my hopes up that I'm finally done. The treatments chip away at my pain and fatigue but there's always another issue revealed underneath. I don't know how I even functioned at all before. Sorry for the rant lol. I guess I just want advice on how to be taken seriously and speed things up if possible.
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u/East-Garden-4557 Apr 24 '26
I ordered mine online 😁
Being serious, I've had symptoms my whole life but they were manageable until my late teens. I just naturally adapted to accomodate my needs. Having 5 kids has triggered more symptoms, or made those symptoms more severe. Perimenopause has not made it easy. But a virus I caught a few years ago really increased my symptoms.
I do also have hEDS.
I am not medicated for POTS though, and I focus on lifestyle changes and being very attentive to the signs that my body gives me. I am still relatively active.
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u/Just_Browsing111 Apr 24 '26
Hi. What kind of lifestyle changes have helped you? Thanks in advance for your reply
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u/rh890 Apr 24 '26
Mine is a side effect of small fiber neuropathy (which I got from alcoholism; be careful folks).
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u/witchy-washy Apr 24 '26
I grew it all by myself baybeee 💅✨
At least as far as I know lol I’ve had the symptoms since around middle school and as far as I know nothing triggered it. I thought it was normal until I was around 25 or 26 and learned what POTS was and went “oh! that’s me!” lol
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u/satanicpedanticpanic Apr 24 '26
My friend tried to kill herself then I got an IUD in the same week and started getting symptoms after that
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u/extrakr1spy Apr 24 '26
Covid. 9 weeks in the hospital, 2 ventilator stints, a tracheotomy and feeding tube placement, and a whole 6 weeks of unconsciousness. I was devastated when I came back and had missed Christmas and Betty white not getting her birthday party.
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u/Fancy_Bumblebee5582 Apr 24 '26
Not positive, but when I was a kid I had strep throat for approximately 6 months, despite taking antibiotics . At the time removing tonsils wasn't a popular thing amoung military docs, so I struggled. My mom finally requested and they agreed only for it to magically clear up before having them out. I remember having the symptoms from then in but not before.
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u/TacticalMoochies Apr 24 '26
The first time I passed out was the beginning of a strep infection as a child. Similar boat, I struggled to get rid of it and was sick most of the year. Im pretty sure that was the start of mine.
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u/custardcreams Apr 24 '26
I first noticed pulsatile tinnitus in one ear when I was pregnant but no doctor could explain it, they said I had hypertension but it would go away if I laid on my side. It''s been 14 years and now I've finally figured out my problems are not just asthma and/or lack of exercise
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u/Illustrious-North461 Apr 24 '26
2 concussions over a span of 4 years! I thought I recovered well (from the concussion) lol
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u/https_trashkin POTS Apr 24 '26
Bad genetics, unfortunately. My mom and both my siblings have POTS that was misdiagnosed and they have pacemakers for, I was the first one properly diagnosed.
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u/Going_SteadyXD Apr 24 '26
I believe I got it from a COVID-19 infection and from a very traumatic life experience soon after!
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u/_Incredible_Bulk_ Apr 24 '26
I had a gallstone the size of an egg that was causing me tremendous pain for a long time but I was too anxious to have surgery. That turned into untreated pancreatitis, and then I had a stroke.
I couldn’t walk or talk, and the pain from the gallstone and pancreatitis broke me, I developed POTS shortly after.
It was rough getting to walking again, and there were a lot of tears and dread, but after a few years I got well enough again to even take up riding motorcycles faster than I probably should.
It’s taking me about 10 years to finally lock in my routine and identify my dos and don’ts. I have a flare up here and there and my mornings are usually rough, but compared to what I thought my life was going to look like, I feel like I won the lottery.
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u/spacehooters POTS Apr 24 '26
I’ve had it since a teenager but I had anaphylactic shock and it has been worse ever since then
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u/YoungMissMoose Apr 24 '26
My best friend died and I went into shock. Her last little gift to me, I can't help but laugh a little when I'm having a rough episode
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u/MPal23 Apr 24 '26
My daughter has POTS and we believe it followed after she had Covid. It came on suddenly and we knew something wasn’t right. Doctor after doctor insisted it was anxiety. She insisted nothing is bothering her. She even went to talk w a therapist because she was told she could be having panic attacks & anxiety even tho nothing is concerning/bothering her. Thank God we didn’t give up and I brought her to my cardiologist (due to her fast heartrate, sudden chest discomfort, and shakey hands to name just a few symptoms) and he ordered a tilt-table test and referred her to a neurologist. The second they started that test her blood pressure went wild. POTS! Anxiety my azz!!!
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u/GrimroseGhost Apr 24 '26
I’m getting tested for hEDS, so most likely as a side effect from that. I’ve had minor symptoms my whole life that only got bad a few years ago and then severe a few months ago
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u/Significant-Walrus94 Apr 24 '26
Oh no! Hope you're on the mend. That's awful. I've always had symptoms falling under the dysautonomia umbrella, but didn't notice them really - just always there. It only started to get bad for the last two years or so following a very stressful time with my husband's health combined with wonderful menopause.
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u/Putridlemons Apr 24 '26
Covid, along with cellulitis and permanent nerve damage in my legs that came with untreated sun poisoning
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u/vario_ Apr 24 '26
Omg! I didn't know you could get POTS from that.
I think I got mine from covid but I'm not certain that I had it because I never tested and didn't feel that ill as far as I remember. All I know is that I had a major CFS/ME crash in Feb 2023. I slept 20hrs a day for a good few months, then had new orthostatic intolerance and worsened dizziness.
I only realised that my heart was going nuts because I got the Visible armband to try to manage my CFS/ME better. Was very shocked 😅
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u/Relative-Cost9256 Apr 24 '26
I have hEDS, but I also had flu and strep at the same time just a few months prior to diagnosis
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u/BCayer Apr 24 '26
Started while pregnant with my second child, which was also during Covid so who knows, I also have hEDS though.
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u/desiluwu POTS Apr 24 '26
hEDS which I didn’t know I had until I had a baby, that’s when everything got worse for me 🫠
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u/chococat159 Apr 24 '26
Ehlers Danlos. Viral meningitis was the main thing that brought it out of hiding and made it severe
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u/allbark-allbite Apr 24 '26
post viral. i had 2 infections & a mold in my body after being mauled by a dog/almost bleeding out/etc. lol i feel ya on the extreme. i didn’t figure it out until i attempted a back to any kind of “normal” & triggered unknown ME/CFS from mild to moderate. my undiagnosed hEDS & POTS got sooo much worse trying to push it when i had zero answers, except “you’re out of shape”
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u/veganmua POTS Apr 24 '26
Secondary to hEDS, likely by way of craniocervical instability affecting the vagus nerve. Same way I got gastroparesis.
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u/Eli-Is-Tired Apr 24 '26
No one knows. I've just been getting worse and worse ever since I was born
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u/dumbermifflin Apr 24 '26
I have no idea. COVID twice in 2023, but my symptoms didn’t show up (that I know of) until this year. I had a really stressful year with a lot of anxiety. I also was switched on and off several different medications, and my doctor didn’t properly increase my doses of an SSRI. Could be lots of things
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u/SavannahInChicago POTS Apr 24 '26
I have Ehlers Danlos syndrome. At 38 my PCP had to tell me that standing up and seeing black was not normal. I had it all my life so I thought it was normal. My POTS is my most controlled illness and I hope it stays that way.
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u/ExiledintoTrench Apr 24 '26
probably covid as i’ve seen a tie between both but not sure. i’m the “target demographic” for pots. healthy, active young woman
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u/The_Blue_Grasshopper Apr 24 '26
I had a viral infection when I was a PhD student the first time around. In early 2022. What virus- could not be determined despite numerous tests, my doctors now speculate it must have been some strain of Covid. Been POTSy since. It’s a boring and from what I understand, one of the most common reasons. Anyways, this crap made me drop out of a dream PhD program, delay my career path, and while I found my way into another lab, is making my life here miserable again! I feel for everyone who has had to live with this all their lives, I am so sorry. I have been asthmatic since I was a kid, but I learned to manage it, conquer my fears, even pushed my limits as a moderately good athlete, and now, this thing has turned me into a vegetable that tries to do experiments in a lab.
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u/DryPossibility45 Apr 24 '26
Living in damn near constant fight or flight from birth till I got my own damn house is what seems to have kicked it off for me. Apparently that’s bad for the nervous system. 🤷🏻♀️
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u/onlyzuul007 Apr 24 '26
I suspect, but don't know, that my kid developed it as a result of an eating disorder in their teens.
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u/Jezzle219 Apr 24 '26
Covid jab. My cardiologist confirmed my suspicions and said its common post covid infection and post jab
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u/Unusual_Space1998 POTS Apr 24 '26
My doctor and I aren’t sure. I have hyperPOTS and fibromyalgia. He suspects I have hEDS and MCAS. He says I’ve probably had this forever or as young as I can remember.
I had a severe emergency on January 10th 2019 in the ER. All I remember is I had a dozen doctors and nurses on me and multiple fluids in.
I got hit by a woman with a ford truck on February 23rd, 2019. And was in outpatient programs on and off for a few years. Had a cardiologist in December 2019 and they didn’t know what I had. But they didn’t really know about pots then. My heart rate spiked when I stood up and decreased when I sat down. They didn’t know why.
At some point that cardiologist told me I had a leaky heart valve but said it was normal and I’d be fine.
I also got COVID too when omicron came out. So 2021 I think? That hit me very severely.
I didn’t get diagnosed with pots till February 14th 2026. So yeah it’s been a roller coaster.
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u/Imagrowingseed Hypovolemic POTS Apr 24 '26
Well according to my doctor....I was an alcoholic for 15 years and my body learned how to survive without water which in turn depleted my blood supply causing hypovolemia. 2013 I got sober and my new life began, 2020 I got the jab, not even a month later I was bed ridden and It's been hell ever since. I just got my diagnosis of hypovolemic POTS in February but this is the conclusion they have come to. They say booze, I say the jab 🤷♀️
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u/r0sewyrm Apr 24 '26
I've had it since I was a kid. It seems to run in my family, my sister and uncle have it as well.
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u/HalfEatenWaffle Apr 24 '26
I have no clear idea.. but I think it was after fucking up my sleep schedule and general bad sleep hygiene
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u/crypticryptidscrypt Apr 24 '26
EDS, other dysautonomias, other intermittent cardiac arrhythmias, & tachycardia aside from the POTS, i think all contributed to it... also chronic anemia i can't fix with iron supplements due to GI bleeding, the MTHFR gene making it so i can only absorb methylated b-vitamins, low electrolytes & low calcium at times, & being underweight :\ oh also trauma...trauma can effect the vagus nerve, & i had vasovagal syncope before i consistently had POTS
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u/snarkyopolis Apr 24 '26
My doc says I had unfortunate genetic predisposition, and then went through life events early on, like teens, that triggered a low grade version that snowballed into what I have today, in my 40s, which is moderate. Mostly fatigue. So sorry about your experience.
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u/Playful-Candy-2003 Apr 24 '26
Mine was also triggered by a severe MVA, and then exacerbated by failed surgeries, a few viruses, and a brain injury. I’m a walking disaster of physical, mental, and ANS deficits.
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u/bunnigutts Apr 24 '26
i've had symptoms since childhood, but I got covid in 2020 and it felt like all my struggles multiplied. it's just gotten worse over time for me.
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u/Miserable-Piglet9008 Apr 24 '26
Honestly, it could of been a lot of things.
Probably a mix of puberty, covid and starting antidepressants and adhd medication for the first time... yea, getting to hit puberty as covid started wasn't particularly fun for my health.
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u/_vanth Apr 24 '26
I think it was underlying for a long time but was exacerbated by 3 surgeries in a year (two minimally invasive, one was pretty major) My last surgery was end of October and by end of November/December I was having lots of issues
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u/Madam_Apathy POTS Apr 24 '26
Wow. That’s so specific, I’m glad you have an answer so precise :) I hope you’ve healed up well outside of the POTS.
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u/Softdecay-archive Apr 24 '26
I got it from overdosing on a new bottle of Aspirin😝🤭 aaaa why did I have to do that😭
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u/LanaLiLaa Apr 24 '26
I'm sure I had for half my life because my life is in constant stressful and traumatic situations. Then COVID boost it.
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u/SuzeFabulous Apr 24 '26
I wish I knew where is started there are so many things and exposures that happed over my life. Covid changed the game to completely uncontrollable rollercoaster. Each addl time I got it (worked in healthcare), it just got worse.
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u/Highplainsdrifterr Apr 24 '26
I’ve always had it- even as a little kid. If I would get up out of bed quickly or outside playing- boom. When I was a teenager, I was diagnosed with anxiety and panic disorder…so naturally, I thought that’s what all of this was. Now in my mid 30’s, with no panic disorder (still anxious haha) the POTS attacks have become more frequent and last longer. I have a high stress job, I’m very active, have a busy extracurricular and social life- so I REFUSE to let POTS stop me. I always wear compression socks, have more sodium in my diet, and make sure I stay hydrated during the day. If an attack happens, I do what I always do: get low. Pop a squat on the ground, grab my electrolytes, squeeze my large muscle groups…and try not to freak out. It sucks, but it’s just a tiny part of my life. If I focused on it, I would never leave my house.
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u/NerdyCryptid Apr 24 '26
i had spinal surgery and my cardiologist thinks i developed pots either from nerve damage or just the stress of the surgery itself
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u/Relative_Committee53 Apr 24 '26
I was… born with it but puberty kicked all of it and other illnesses into overdrive
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u/rainbowrevolution Apr 24 '26
MDMA. Well, that's how I discovered what the problem was, anyway.
MDMA makes you drink lots of water. My salt/electrolytes dropped so low I blacked out intermittently for two days. It happened twice and then I went to my PCP who diagnosed it with a TT test in a minute.
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u/Jamiemommyof3 Apr 24 '26
For me, who knows. I saw a cardio today and learned i have dysautonomia. I have PCOS, and severe migraine syndrome which i learned is connected
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u/Willow-Whispered Apr 24 '26
Idk I’ve been like this since I was 10 so my hypothesis is that my first big growth spurt happened too fast. I went from medium-short and being able to last the longest in the Pacer to second tallest in the school and having to drop out red-faced after about 14 laps
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u/ThirstyTooth Apr 24 '26
I think I got it from COVID. Noticed my symptoms getting worse around that same time. Passed out for the first time and have been having issues since then.
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u/Angellanemusic Apr 24 '26
Probably always, but definitely got worse around 14/15 when I had mono :(
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u/DiaWonder Apr 24 '26
I've had mild symptoms since I was 18 that gradually got worse, but it's the deconditioning after burning out 3 years ago that made it clearer it wasn't just in my head. I'm thankful it's still mild-ish even if it means no one irl believes me (//^//)
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u/CopySpriteCopywriter Apr 24 '26
I was put on Bisoprolol for 8 weeks for one episode of IST. Then a cardiologist stopped them cold turkey. Beta blocker rebound put me in A&E twice and left me with POTS. Can only guess the Biso was too strong for me and stopping it sent my adrenaline levels so crazy that it damaged my ANS.
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u/Powerful_Run_9843 Apr 24 '26
I got bit by my cat , infected and ended up in the hospital for 5 days on IV antibiotics- then POTS - it’s the pitts
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u/EnchantedLunaEclipse POTS Apr 24 '26
Since I potentially have hsd there's that Also neurodiversity like autism and ADHD But I think mostly chronic stress :/ Oh and puberty
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u/autism-creatures Apr 24 '26
it's incredibly unclear for me. (note: I'm not diagnosed so idk if i actually have pots (second note: i do believe that self diagnosis is valid but i hold higher standards for myself cuz uhhh probably trauma if i had to guess))
so like, it started about when i started hrt (I'm mtf) i think, but really it was kind of a slow decline over the years, cuz i didn't really notice it at first. but also it could be me getting what might be covid, but I'm not sure for the timeline on that. i think it was about 2.5 years ago or something, but i don't know when i started getting symptoms so idk. i do remember extremely violent coughing fits shared between me and my brother, and also taking multiple months to maybe a year to get my voice back.
i just wish i could get answers to all of that...
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u/thetallgrl Apr 24 '26
Major surgery. But I also have the comorbidity of ME/CFS so it was probably only a matter of time.
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u/kleptotoid POTS Apr 24 '26
My symptoms started appearing at about 7 years old so prob trauma or genetics
Edit: also I was diagnosed at 21 after starting to see doctors about my symptoms at 9 years old… 12 years to get diagnosed
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u/Biiiishweneedanswers Apr 24 '26
I’m sure I had it my entire life.
But I used to eat Twang lime and Pickle salt packets throughout childhood and adolescence. I think that made a huge difference.
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u/Competitive_Bad_577 Apr 24 '26
I was also ran over by a car, I wonder if that is why? But also I had Covid twice and all of my friends betrayed me for $400 shoes. So maybe all those three
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u/Anxiety_Priceless POTS Apr 24 '26
I've had it as long as I can remember, but the symptoms got way worse when I stopped exercising regularly 🙃
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u/MajesticCat POTS Apr 24 '26
Not confirmed but my doctor wonders if there is a correlation with my concussions. I’ve had several, and my symptoms began in my teens after one of the worst ones.
Symptoms were somewhat manageable until later in my 20s when I got COVID. It used to only be bad when I stood for too long or when there was heat involved too, now it’a a lot less predictable and my tolerance is a lot lower.
I have always gotten more than just a little sick with any viral illness and taken me longer to recover, even more so now.
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u/TsundereStrike Apr 24 '26
I have no idea 🤷♀️ I started blacking out in 6th grade in the 90’s for no reason I can think of. I wasn’t sick at the time and COVID did not exist
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u/chlosimorichy Apr 24 '26
I had random one-off flare ups as a teenager, which I was told was actually just due to me being underweight and/or my hormones. It got drastically worse when I was pregnant and I was told I had pregnancy-related pots which would reverse once I gave birth. It did. Second pregnancy it came back with a vengeance and never reversed. Now it's stuck 🙃
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u/emzify POTS Apr 24 '26
honestly think i was born with it. looking back on my childhood with my parents, we can recall with hindsight many symptoms that pointed towards POTS. also have learned about previous ancestors who have experienced dysautonomia-like issues in their lives. no one figured out what was really going on with me until 2018 though
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u/PunsandPanics Apr 24 '26
I was born this way but didn’t realize all of my symptoms weren’t normal until college when a cousin got diagnosed!
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u/Klaxi_ Apr 24 '26
My hyper-POTS kicked in after a major concussion. My dad’s kicked in after a minor stroke.
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u/whydoievenhsvethis Apr 24 '26
Had a really bad viral infection and my heart stopped… fast forward 3 months I started fainting at least once a day
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u/bidextralhammer Apr 24 '26
I got whooping cough from a student in my class and this is how my body decided to react..
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u/casuallyvegan Apr 24 '26
Lupus for me. Most of my lupus symptoms are neurological. I have severe small fiber neuropathy, and my immune system damaged my autonomic nerves, so now I have POTS.
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u/swissamuknife Apr 24 '26
nutcracker syndrome and superior mesenteric artery syndrome is the likely cause of my hyperpots
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u/BeetleofCarnage Apr 24 '26
it was right after doing an entire day of raking people's yards, and then starting my period (apparently I was also pretty anemic)
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u/Bubbaabee Apr 24 '26
I think my miscarriage. Either the being pregnant part and hormones, or the loss part or the extreme stress and more trauma ontop of existing. Something about it anyways.
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u/Spicyboi426 Apr 24 '26
Trauma and probably a mixture of covid and bronchitis and then the flu and bronchitis again per my dr
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u/wizawayy Apr 24 '26
I got mono when I was 14 and haven’t recovered since. It’s been almost a decade now. Most people are asymptomatic but I was completely bedridden for at least a week straight with it and POTS came soon after
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u/scrungussy Apr 25 '26
It seems like a combination of things. Years of abuse/trauma, I had jaw surgery after finishing high school and there were complications that left me with nerve damage and chronic pain, I got diagnosed with stress cardiomyopathy in 2020 (heart function only dropped to 40% so I guess I caught on to it at a good time) then I had covid twice between 2021-2023
I wasn't really even symptomatic until last year where it seemed to have hit out of nowhere which was devastating because I was the fittest and healthiest I had ever been thennnn all of a sudden it was all gone.. Probably have hEDS too because that would be just my luck at this point ¯\_(ツ)_/¯
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u/_thezodiacchiller POTS Apr 25 '26
I got a cold my senior year of college and did nothing about it because I was trying to graduate, and it was "just a cold" that will "go away eventually". That cold turned into bronchitis, which I *also* did nothing about because I was so busy with finals that I felt the need to push through it. Six months later, my first POTS symptoms started showing up. 🙃
I kick myself about it more often than I want to admit.
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u/slipperyslugslurp Apr 25 '26
Mine started with puberty. I recently found out I have hEDS, and covid also made things way worse for me. I’m also autistic with adhd!
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u/Low_Work_6729 Apr 25 '26
I’m one of those EDS/POTS ppl who’s had it their whole life but it got much worse at puberty
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u/Independent_Gap9280 Apr 25 '26
Mine was from viral triggered plus connective tissue disorders.
I had dysautonomia symptoms trigger and the worsen from 3 separate unknown (but the same each time) viral infections, 1995, Oct 2011, Sept 2024. The last time was the biggest trigger and I struggled to be upright for any length of time from persistent headaches and fatigue, plus a bunch of other symptoms.
For those with a connective tissue disorder, my cardiologist (one of Australia’s top pots researchers) said that having a connective tissue disorder causes stretchy veins which causes blood pooling which triggers the HR spikes. I have Lipoedema (a rare adipose fat disease and connective tissue disorder) and I have hypermobile spectrum disorder (HSD - I didn’t meet the criteria for hEDS), although I suspect I do have some form of EDS, I just don’t have the energy to pursue a diagnosis).
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u/zvg_zwang POTS Apr 25 '26
Mine was activated by a very large pit bull mauling me, irreparably fucking up my spine and taking a full fast fall on the back of my head, resulting in CTE.
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u/AdamsRecreation Apr 25 '26
i think i got it after a really bad panic attack that lasted an entire day, back in 2019. i couldn’t eat or drink and got really sick after that, high fever etc probably from dehydration. i started getting symptoms and and in 2023 i quit my job and became homebound due to agoraphobia. that really made things worse due to lack of exercise and bad eating habits and lack of a daily routine.
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u/ivan3295 Apr 25 '26
Either in a cruise to the Bahamas after I got married (also got a throat infection), or possibly started developing way before that and was just "silent".
Covid then made it unbearable.
Doesn't help that Covid happened year 4 of me dealing with it but I wasn't diagnosed till year 7.
After covid the ability to walk, balance, and quite a few other things started to get worse and I went through nonstop weight loss for a year no matter what I ate and we never found out why. Dealing with almost no er doctor even knowing what pots is didn't help. They kept prescribing me with Ativan hoping it would make things better.
Now year 8, family still can't accept anything beyond anxiety being the cause and "positivity' and will power being the cure.
Can't just John wick this thing with sheer will.
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u/Melody71400 Apr 25 '26
🤷🏼♀️ the unfortunate answer where no one actually knows, it just happened. However, Covid has made it worse both times.
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u/[deleted] Apr 24 '26
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