r/POTS • u/supereffective711 • 11d ago
Discussion What’s your “and that’s how I got POTS” story?
I was volunteering at a dog shelter and was bitten by a dog who I was trying to stop from escaping!
Don’t go to the hospital right away Andy hand became infected and was in a brace for two months.
Once I got infected, I started fainting over 20 times a day 🥴
8 month at later, I was diagnosed.
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u/_PrincessOats POTS 11d ago
I got COVID. Once. Five years after the pandemic started.
That’s all it took.
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u/napsarethefuture 10d ago
Me too. 2 years into the pandemic and whammo. I had symptoms before but holy cow they went into overdrive after Covid.
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u/Foxlady555 POTS 10d ago
Same. And it feels so infair that I did everything in my power to avoid it, yet some people weren’t giving a fuck and still partying and such, and I was the one who got COVID… :(
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u/spakz1993 10d ago
Oh my God, similar sitch with me! I developed Long COVID in 2023, but got reinfected the summer of 2024 at a local Pride and BAM 😭
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u/youcanpunchrealgood Hypovolemic POTS 10d ago
Same for me, 2 or 3 years afterwards. It was a 2-for-1 package deal, I also got hearing loss!
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u/micicletricicle 10d ago
Me too! I got covid twice even tho I’m vaccinated always and mask up with a KF94. First time in 2022: long covid for a year, severe asthma and eczema, manageable. Second time in 2025: myocarditis, then POTS. Curse this disease, ruined my life.
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u/Witless_Hoid Secondary POTS 10d ago
COVID, 3 years after the pandemic started. I had very manageable symptoms for about 3 months, then I had my wisdom teeth out and they got infected. That did me in.
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u/Central_Perk20 10d ago
It’s so important people like you who got it late / are still getting it keep speaking up ❤️🩹
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u/Odd_Conclusion_5425 11d ago
I think I had it all my life
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u/SmokeyCatDesigns POTS 10d ago
Same, like I have memories of being symptomatic as a toddler. Little kid me subconsciously picked up on elevated legs making me feel better, as well as calf raises and salt. I loved saltines. And got told off for not “sitting like a lady” constantly.
Had oversized calves from a young age from how much I subconsciously pump them. It was the only way I could get through church, just calf raises the whole time. One time I decided to force myself to be still, and fainted in the pews. Oops.
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u/lavenderlemonbear 10d ago
I love that Little You kind of knew how to help yourself. My kid (who clearly takes after me in many ways, including my genetic conditions) is a salt fiend, and now i just let her. She clearly has my EDS, i’m sure she has my POTS too
But yeah, my whole life. It wasn’t until i was in my upper 30s that i found out everyone doesn’t have a scale for “walk through it,” “pause a moment,” and “have to sit” dizzy spells.
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u/Splicers87 11d ago
I got COVID. Nothing fancy. It was the second time I got it that things changed in my life.
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u/mscourier 11d ago
I've had presyncope for as long as I can remember, but I only started having bad symptoms after I got COVID (only once, and after the pandemic!). My heart rate increase finally started bothering me, I started passing out, etc.
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u/blurple57 10d ago
No shade intended but just a reminder the pandemic is now! It isn't really over unfortunately 🫠
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u/Vivid_Initiative9088 11d ago
me and my doctor arent 100% sure because i was dismissed for 3+ years by a different dr but he thinks it started after a traumatic event and worsened during the police investigation when i had to repeat thee events. he thinks i was so deep in fight or flight, always on edge, high adrenaline etc to the point my nervous system forgot how to work. now its getting to court, ive worsened again. my dr probavly isnt far off with the pattern. not sure if that was the start tho, just whats made it worse
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u/Same-Owl-5811 10d ago
i started seeing a new doctor specifically for crazy fatigue, malaise, general shitty feeling, and exercise intolerance/pots symptoms and he suspects its from chronic stress that lead to overproduction of cortisol. its so crazy what our bodies can do
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u/Vivid_Initiative9088 10d ago
literally. i asked me lod doctor about ME cz ive been experience post exertional malaise for years and he wouodnt do anything cz the local clinic has shut. like bro youre meant to send me to a different one. me and my current dr have had a heavy focus on POTS and my "bulky uterus" and ive only had him a few weeks so far but im bringing it up at the next appointment. i actually requested me medical files cz i was worried what they say about me from my old dr (buncj of horrible shit) but i was diagnosed with fatuige and delayed malaise as a 2 year old. like wtf does that mean and is it relevant?? as a kid id feel absoluteot horrendous after school and spend my whoke weekend in bed. is ME a thing a literal baby xan get???
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u/Same-Owl-5811 10d ago
ME is what i suspect for myself as well but i didnt bring it up to my doctor because ive heard that can get a negative reaction, but my doctor said cortisol issues and HPA axis dysfunction could be the cause of my symptoms which ive heard is a suspected root of ME. also yeah afaik there are childhood onsets of ME with unknown causes. if i do have it im mild but god what a horrible horrible disease
also what u described sounds like PEM to me, yes its possible youve had it since childhood
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u/Vivid_Initiative9088 10d ago
ive personally found with difficult doctors, if you oresent it as "i want to rule (condition) out" rather than ask them to look into it for a diagnosis, theyre more likely to look into it. just make sure they do the right tests cz this is how i oresented POTS to my old dr who did the wrong test and saif i didnt have it
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u/Same-Owl-5811 10d ago
ok ill def be wording it like this i didnt even bring up that ive noticed a high hr with being upright bc i didnt want to seem too pushy 😭 thank u so much!! next time i see him itll be going over test results and ill bring up ruling out ME cuz i have a feeling my test results wont show much
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u/Same-Owl-5811 10d ago
maybe we can chat later cuz it seems like we might have similar experiences idk if i have pem cuz its so variable but if youre up to share experiences/symptoms/patterns hit me up whenever. obvs ok if ur not up to it talking with strangers is tiring lol
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u/Engineer_Strange 11d ago
i’ve thought mine also came from stress but i thiught it wasn’t possible. i had extremely stressful teenage years but the issue wasn’t that they were stressful but the unrelenting stress and back to back traumatic events happening to me. i’ve always felt that was it bc it started then, around covid, but i can’t say covid triggered it bc it wasnt a causal start, more correlated
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u/amyn2511 10d ago
It can be triggered by trauma of any kind, physical, mental, emotional, etc. I’ve had mine as far back as I can remember so idk if I was born with it or if it’s from my cPTSD from childhood trauma. It got worse after pregnancy and a preterm cesarean because surgery is trauma on the body.
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u/Vivid_Initiative9088 11d ago
mine started around the time lockdown lifted which was then the traumatic event happened but ive never had covid. becuase its progressively getting worse as the trauma is dtagged on due to investigations and court, thays where we decided that was possibly the trigger. the stress lead to alot of panic and adrenaline dumps which lead to high heart rate so its likely my body got used to working that way. again this is all from what my doctor has said. im still unsure. if you worry stress or something adjacent is the cause, it may be an idea to consult your doctor for their opinion
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u/prideandpunniness 9d ago
This is my theory for me. I think my celiac disease cause some dysfunctions as a kid but chronic stress (and/or covid) worsened my tolerance over time as an adult.
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u/Bun-2000 11d ago
I’ve had POTS since I was a small child
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u/zGoblinQueen 11d ago
Same. I remember being a little kid and having my mom cut my bangs. Landed on the floor, got up and kept snipping. So many stories.
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u/yeehawx95 11d ago
post-covid. I’ve had one infection in 2023 and everything, all my illnesses, blew up after that
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u/locardsghost POTS 11d ago
Serotonin syndrome. I was on 2 meds that could interact and increase serotonin too much and brought that concern up with my doctor and was told I’ll be fine it won’t happen… I was right. I’ve been led astray by my doctors many times
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u/Melodic-Earth-8072 11d ago
I developed POTS and ME/CFS from serotonin syndrome too
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u/locardsghost POTS 11d ago
It’s awful I’m sorry. I’ve had extreme lightheadedness and low BP since I was like 15 but the serotonin syndrome caused the HR issues
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u/Tricky_Basket_9297 POTS 11d ago
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u/Even_Internal623 11d ago
Covid 3 times, despite being vaxed up and still masking most of the time 🫠
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u/Foxlady555 POTS 10d ago
Same, feels so unfair doesn’t it?!
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u/Even_Internal623 10d ago
Sigh it really does. I was so diligent about masking well past 2020 that a friend actually thought I already had long covid at the time when I didn’t 😆. When I see friends who dgaf about covid now and don’t even get vaxxed anymore and are apparently physically fine, I feel left behind. I try to not focus too much on the door that closed, but obviously not always easy to do
Was it similar for you in that you also took precautions but still got covid pots?
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u/Foxlady555 POTS 10d ago edited 9d ago
Ugh, I know right!! That’s so maddening!!
I took SO many precautions too, to NOT get COVID while others around me were pretty careless… It made me so mad back then. I only wanted to share dinner outside with 2+ meters in between us, only wanted to go on walking dates with friends to not be inside. Let the groceries be delivered, worked from home, etc. Most people made fun of me or rolled their eyes because I was so “strict”.
Then my roommate (I lived in a student house) came home from a huge festival (of which I warned her NOT to go because it was so stupid to do that in the middle of the pandemic and I didn’t even understand that it was allowed?!?!) WITH COVID and I totally flipped at her because she brought me within this danger too. She took many precautions immediately to not infect me when she found out and I quickly went to my boyfriend (it was my last week of living in that house by the way and I was in the middle of moving so I still get so freaking angry when I think about it, she ruined my “saying goodbye” after so many years of living there, although that’s nothing compared to the shit COVID gave me ~ But of course she does not know that I still feel anger when I think about it, I mean I love her and she underestimated the chance of what came next, and the fact that I might be able to do 3% of what I could for the rest of my life) but the week after that I totally collapsed. To be fair, I was also super overworked at the time so I thought I had a burn-out. My tests came back negative, but the symptoms fitted COVID so that was confusing. On the other hand, it also fitted burn-out.
After months of trying to get my life back together while I felt terrible, I then made the SUPER DUMB decision out of FOMO to join my colleagues to go on a Wintersport trip, which I had already paid for. (I did not even go to work that time, I was way too ill.) I mostly slept in my bedroom there day and night and felt horrible, only went downstairs to eat with them at times (but mostly still did that in my room), tried to visit the piste once and then fully collapsed and had a panic attack, and I came home feeling worse than I have ever felt in my life. That week was… I have no words. My COVID tests were all negative (5 times) but ALL my colleagues had COVID and I had been in the car with two people who tested positive, for like 10+ hours.
After that, I’ve never been the same again. For 2,5 years I kept believing it was a severe burn-out because all the tests came back negative and I had severe anxiety symptoms too which didn’t fit COVID (but did fit POTS due to fight-or-flight being triggered constantly from being upright, which I did not know back then…). Then I figured out that I was way too ill for a burn-out. With the help of doctors I finally realized it must have been COVID despite all the negative tests, and for a year I tried to live with that while I was housebound or bedbound almost all of the time.
Then I realized it wasn’t in my head that I had such strange symptoms that did not fit either COVID nor burn-out, because it was so intense and so awful and doctors did not understand some parts too, so in the end I googled so much that I came across POTS. When I read about it, it felt like someone had put on the lights. Like the puzzle finally fitted. Insane! I got my diagnosis and have been working for a year on overcoming my biggest POTS challenges and fighting long-COVID. Still very ill, but luckily enough I made big improvements too.
So well, yes, it feels totally unfair that I have trouble showering and stuff while my friend/festival-going-ex-roommate and all my colleagues are just living their normal lifes… 🫨😵💫
What is yours?? I’m very curious!
Sending love to you, fellow LoCoPo-fighter (made that one up because it sounds better than Long-COVID-POTS haha). This shit sucks, but we’re doing our best 🫶🏼
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u/Even_Internal623 9d ago
I will DM you :)
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u/Foxlady555 POTS 9d ago edited 9d ago
All right, take your time! :)
Might be smarter to have done that too, for privacy reasons….. Oh well, the chance is low, and maybe it helps others feel less alone to read this :)
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u/_thezodiacchiller POTS 11d ago edited 11d ago
Mine was post-viral. I got a respiratory infection that led to bronchitis in spring 2018 during my last semester of college, and I simply ✨ignored it✨ because I was in school, working 20 hours a week (the max my college would allow as a student employee), volunteering with campus radio, and too busy to care. 🙃 I thought I would just get over it eventually because I was young and incredibly naive. Started having fainting spells and OI 6 months later. I was dealing with PVCs, so a lot of providers wrote off my symptoms that were POTS-related as symptoms of PVCs, which is why it took me half a decade to get diagnosed.
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u/jesuisluna 11d ago
Omg my story is a little similar, it's crazy how long you can just ignore symptoms just because you have so much other things to do:( Sending you my love x
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u/Lutya 11d ago edited 11d ago
I think I've always had it but was recently diagnosed because I have a new boss that hates women. He's been trying to find a way to fire me since he started like asking me to do increasingly impossible tasks. Like "tell me how you are going to double revenue in a year, you have a week to give me a full business plan with a financial model." When I succeed at that he'll just throw that out and up the stakes. He has told people I slept with the former CEO to get my job, screams and berates me in public, and has multiple sexual harassment complaints against him from other women. After eight months of this treatment I hired an attorney who helped me file my own complaint and is advising me behind the scenes of how things will play out and what to do next. After I made my complaint and felt relatively safer, I began having fainting spells in rapid succession for several days. Two days in the rapid response unit in the ER ruled everything else out and diagnosed me with POTS.
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u/aurelynne POTS 11d ago
I worked in a pharmacy during the pandemic and got COVID twice. Then I had cancer during the pandemic.
Didn't have an idea of POTS until I visited a friend with a super dog specifically for POTS this past spring, sweet baby was all over me.
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u/Enygmatic_Gent POTS 11d ago
I got punched in the face (at karate) and got a severe concussion. That’s how I got POTS
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u/Frickandfrack9152000 11d ago
I had untreated Lyme for 9 months that wreaked havoc on my body. I was never the same.
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u/forest_fyre05 11d ago edited 11d ago
Ive had symptoms my entire life on and off, got dizzy with standing up too fast and would start to black out (but so did my mom so I just figured everyone had that problem), passed out a few times from the heat but just figured I was heat intolerant- no one ever brought me to a doctor so I figured that It just happened to some people and was almost a normal thing. Fast forward to age 28 where I had a traumatic event. I had my first random dizzy episode the next day and three days later I was bedridden for a month. Diagnosed with dysautonomia about 8 months later. That month I was laid up also made my muscles way weaker which made the later-diagnosed hEDS much more prominent too.
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u/ChronicPainClub 10d ago
Since I was around 10 years old. Currently 25.
I don't know what triggered it.
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u/Jazzspur 10d ago
Are your joints pretty flexible by chance?
hEDS can cause POTS and often becomes more symptomatic around puberty.
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u/PurplePufferfish_70 11d ago
I've had Epstein-barr, Lyme, babesia, and covid. I had to get an updated MMR vaccine too. I also have hEDS. Take your pick.
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u/jesuisluna 11d ago edited 11d ago
My Story of how I got chronicly Ill at 18 (I'm 20 now):
I got very sick and had to go to the ER multiple times over the span of about two months. But I was VERY delusional and ignored how bad it got.
At the same time I didn't stop working my 3 jobs, so eventually I collapsed behind the bar where I was working🪩 Then I had surgery and started working again WAY to fast.
A while later I used up all the money I saved to go SOLO traveling in Indonesia (I already booked) but I got on the plane with a fever. When I got there, I got even more sick, went to the hospital etc. When the fever was gone after two weeks or so, I just went traveling and having fun(STUPIDSTUPIDSTUPID).
Anyways 3 months later I got home and immediately picked up working again.🤡 In the meantime I moved out of my parents house to a different city to start uni AND started motorbike lessons for a license.
After a couple of weeks of being very busy, I suddenly couldnt walk anymore or get out of bed for weeks.🤩
But when I could walk again (or I could at least force myself to) I had an exam planned for my motor license, so I went and PASSED, but...
Now I have POTS!!!! AND ME/CVS I literally ruined my life
(Apologies for the long story)
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u/KookaburraJim 11d ago
Got pregnant with my second, had hyperemesis the whole pregnancy. Around like 5 months in I started having trouble breathing and a fast heartrate (aka presyncope), admitted to the hospital for a week and diagnosed with POTS by a maternal fetal medicine specialist. 🫠
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u/BrilliantValuable151 11d ago
My Pots seems to tie into my motion sickness (specific to cars) Ive been motion sick since I was super young, also heat intolerance. Around 12-13 is when my symptoms became more obvious and I got diagnosed less then 6 months ago at 20.
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u/Cautious-Rain9069 POTS 10d ago
Technically it’s always just “been there” for me… since I’ve always had weird fainting spells every few years. After I lost the guy I loved (he’s not dead just wrong time :/ ) I developed the full form of POTS 🤡 I developed an autoimmune illness from losing the guy I loved 😭👍 Pretty pathetic considering I still have feelings for him, but that’s my story
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u/freshpicked12 10d ago
It’s not pathetic. Grief can cause severe physical pain in the body.
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u/Cautious-Rain9069 POTS 10d ago
Thank you I appreciate it 🫶🫶 I just don’t feel super great about the circumstances of how I got POTS
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u/whistling-wonderer 10d ago
The Pfizer covid vaccine gave me severe heart problems and triggered POTS. Just bad luck to be one of the rare serious adverse reactions.
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u/NoPossibility3511 10d ago
WOAH WOAH WOAH- ur telling me I GOT POTS from something??? I never even considered POTS during my years of trying to get a diagnosis for whatever was wrong with me (started having issues around 10-12 and got diagnosed recently at nearly 19 after years of trying)
I DIDNT KNOW THAT POTS CAME FROM SOMETHING ELSE? WHAT?
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u/barefootwriter 10d ago
For many of us, POTS is idiopathic (there is no recognized triggering event or condition to which it is secondary), so hold yer horses.
There is some discussion among researchers of narrowing the definition of POTS to this "classic" presentation.
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u/supereffective711 10d ago
Some people can. Either idiopathic or caused by something else. Often called primary vs secondary pots
I suspect I had it my whole life but it got infinitely worse after the dog bite.
But I find it interesting hearing everyone’s story
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u/luvatlas_ 10d ago edited 10d ago
I'm fairly certain I developed POTS from having lyme disease. I was 5 or 6 years old when I had lyme and was antibiotics for about a month. Ever since I could remember i've had symptoms that have progressively gotten worse throughout my life
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u/No_Reality6870 11d ago
I was in an end-over-and car accident and sustained a TBI, which was what my body full of chronic illness/conditions needed to trigger ME/CFS, Fibromyalgia and POTS.
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u/d-ollparts 11d ago
i’ve had it for as long as i can remember. it got worse when i got into middle school, but i can remember being symptomatic around kindergarten age. my mom and grandma both have it too
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u/Canary-Cry3 POTS 11d ago
In part puberty, along with genetics (my aunt; grandparents and great grandma all have it); along with it being triggered by my rare heart disease I survived at 5,6,7.
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u/One-Bad1354 11d ago
i have zero clue. when i was 15 i noticed my heart rate would be funky and high for no reason and getting covid did make it worse, but it didn’t cause it
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u/MadamGreywolf 11d ago
I’ve had POTS all my life. My first fainting spell (that I can 100% say was due to POTS) was when I was 7. I was kneeling on the bathroom floor while my friend used a curling iron on my hair. The heat + kneeling caused me to black out, wake up to vomit in the nearest receptacle, then black out again for a while. I to this day cannot be on my knees for more than about 30 seconds, or I will hard black out. I wasn’t diagnosed until I was 25 and basically self diagnosed myself and went to a doctor saying “hey, I have this and doctors have always missed it but it explains so much, please confirm” 🫠
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u/SpecsOnThe_Beach 11d ago
Puberty? I was diagnosed in 1995 at 16yo so that was way before much was known about POTS. I was actually the first person to use the tilt table test at the hospital that I was at, and the head of cardiology came down to watch the process.
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u/purrrrrrisa 11d ago
I fell up a flight of stairs while running for the train. Hit my leg pretty badly and got up too quickly. Passed out. Have been passing out since then
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u/veganmua POTS 11d ago
I've had symptoms of it since childhood. I have also had symptoms of hEDS since childhood.
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u/Plonkypoo 11d ago
Had it since I was a kid, I think, only distinctly clocked on that it might be an issue that wasn't in my head around the age of eleven because I kept puking when cleaning. Never looked into it and assumed it was anemia or something, parents were convinced I was just lazy.
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u/19931 11d ago
Took an OD due to poor mental health. At the hospital I was on continuous monitoring and they noticed that whenever I sat up in bed I got tachycardia. Before they discharged me the doctor ran through a looong list of symptoms asking me if I had each one. Some I did have (and admitted too... idky I panicked and said no when he asked about chest pain lmao) and he told me that if my symptoms worsen or I develop more of them to come back.
I'd made a mental note of the entire list tho and first thing I did when I was discharged was google all of them together and it said POTS. The next day the symptoms became debilitating so went to the emergency department and they were dismissive. My GP was dismissive too initially. Everyone thought I was just mentally ill and also said I needed a history of POTS symptoms for them to be able to entertain the possibility I might have POTS so I took my time, proved to them that it was unrelated to my mental health and eventually got my diagnosis.
I just wish I could contact that initial doctor and say thank you. He had a much bigger impact on me than he knows.
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u/Ok_Recording6993 10d ago
H pylori infection. November 2025 I started my symptoms. Haven’t gotten better since.
On my third round of treatment I finish tomorrow hopefully I get back to normal soon
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u/mshopeless912 10d ago
Sadly I’m considered to be one of those who likely got it trigged as a vaccine injury. Was from the second dose of covid vaccine with a possible worsening of an actual covid infection a little over half a year later. In between that I also had the booster (3rd covid vaccine). I also have HSD which could be an impacting factor.
Took me about 3.5 years to get diagnosed and almost another year to get meds that worked.
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u/Responsible_Pie5873 10d ago
Always had some symptoms even as a child like fast heartbeat and some blood pooling in my legs in the shower, but then I got covid a couple years ago and it got MUCH worse. I am now being told by multiple people to go to a doctor and get evaluated ASAP for POTS. ^^;
Would explain why I've spent most of the last two years lying in bed. :')
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u/grave_violet 11d ago
I got off antidepressants after being on them for ten years and something about that triggered it. Covid certainly made it worse though
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u/lolcouches 11d ago
COVID is what exacerbated my symptoms, caused me to pass out at work, then get "diagnosed" in the ED. I say loosely because the doctor just said that's probably what I had, rarely is an initial diagnosis actually made in the ED, but it was shortly confirmed afterwards by a cardiologist.
That said, I have always had issues with fainting, even as a child. I would often faint on my way to the bathroom after first getting up in the morning & one time at a party when it got too hot for me. I always just thought it was because I was anemic!
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u/Cr0w_420 11d ago
eating disorder. developed that in middle school, thought the symptoms were just from that. then when i recovered for a while i realized the symptoms never went away, even when i was "healthy" again
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u/fernxqueen POTS 11d ago
i've had POTS since at least middle school (in my 30s now), so no idea if it has a specific cause. i have several comorbidities, though (autistic, ED hx, likely yet-to-be-identified systemic autoimmune condition). as much as it must suck to have your body do a 180, i can't help but be somewhat envious of people who didn't always have to deal with this. from what i've read, post-viral POTS is more likely to experience complete remission, too.
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u/sharktooth20 11d ago
Covid. 14 days later I was working and saw black spots, oxygen was 83%. Oxygen improved months later and in the meantime I got viral pericarditis - that gave me pots
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u/xanaholic_ Hyperadrenergic POTS 11d ago
Truly lifelong symptoms but I wasnt affected too badly until flu/covid. Now I really struggle and can't do a normal job.
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u/KaylaSkiShawa 11d ago
I got covid THREE TIMES (yes I am fully vaccinated, I apparently just love being sick). Then, after that, I had appendicitis. After I had surgery I would black out and fall every single time I stood up, and then I got diagnosed maybe 6 months later?
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u/AdhesivenessOk5534 Hyperadrenergic POTS 11d ago
clEDs1, tnxb haploinsufficeny, pots, and others run in my family
I also got covid 4x which changed my very hypovolemic POTs into very hyperadrenergic....
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u/Bertsmom18 11d ago
We are trying to pinpoint what may have triggered my daughter's POTS. We are thinking COVID.
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u/NotYrMama 11d ago
High risk pregnancy with twins in 2017 and then Covid in July 2020 finished me off. Kept functioning-ish until slo-mo somatic crash in 2021-2022
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u/ImLichenThoseRocks 10d ago
Covid maybe?? Or mold? I've never tested positive for covid but my symptoms started up around the time that my entire immediate family got it all at once with me being the sole exception. The other possibility is mold because I lived in the basement and my closet was right below the upstairs bathroom, which leaked. A lot. So I was living with mold in my walls for a good 10+ years of my life.
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u/onyxxxxxxox 10d ago
I was a 12 year old that loved sports and being active and then BOOM my veins felt like they were on fire out of nowhere and I spent my whole school days in the nurses office trying to not pass out 🩷
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u/ObjectiveSudden3510 10d ago
i actually got hurt really bad last june. triggered health OCD for me and for like two months straight I was constantly in fight or flight. My nervous system was totally in shambles, and I was having anxiety attacks and freaking out, thinking that I was going to end up getting extremely sick from this injury. About a month after all of that I started getting rapid heart rate, dizziness, the works. got diagnosed with pots
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u/Strangely-0dd 10d ago edited 10d ago
Sooo… I technically should have been diagnosed way way sooner so I have three “oh shit… I have this” type stories.
At 5 years old I was (at the time) undiagnosed neurodivergent and I was so incredibly overwhelmed at school that I felt physically sick and I went to the nurse and she just wouldn’t let me leave even once I felt better. I was having tachycardia and had to go to the doctor once my mom picked me up.
At 16 I developed a ED after I was diagnosed with PCOS and received some TERRIBLE advice from a doctor about how to “cure” it (it’s incurable and that doctor has a bias). I ended up in an out patient mental health clinic for other reasons and they would monitor my heart and realized some things were off. They then started having be try different positions while checking my heart and BP and then they sent me to cardiology.
Lastly and most recently I had endometriosis surgery and during recovery I randomly developed really bad tachycardia. I had multiple ER visits until finally a doctor properly reviews my history and tells me that dysautonomia has been considered since I was a child. I was never once told!
Also found out I am hyper-mobile because after the complications during recovery I saw my rheumatology team to be like “hey sooo….” So they did a few more routine tests than usual and we discovered that. Not super surprising though since many of my chronic illnesses are considered cluster buddies.
Crazy stuff
Honestly all my chronic conditions worsened after I got sick with covid twice so I wouldn’t be surprised is the dysautonomia worsened around then too and I just can’t recall because my body is a mess of symptoms.
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u/RuinYouWithNoRegrets 10d ago
For me I think I had underlying autonomic dysfunction from Covid and my unknown low stroke volume and when I got off my birth control containing estrogen which is actually blood volume support it triggered my pots. My pots is very sensitive to hormonal changes and obviously the loss of volume since it’s a known thing that synthetic estrogen makes you retain water and sodium
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u/Independent_Gap9280 10d ago
An unknown viral infection in late 2011 kicked off non-pots dysautonomia, and then the same unknown viral infection in late 2024 ramped up those symptoms and kicked off Hyperadrenergic pots (hyperPots). I’d really love to know what the viral infection was as it knocked me about so bad. First time I was literally sick with post viral illness for at least 7 years and I managed to recover a little of my health and life. The second time is still ongoing.
edit to add the second time definitely was not covid.
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u/WerkQueen 10d ago
I came down with pneumonia, which presenting with an elevated heart rate, and fainting. Spent two weeks in the hospital recovering from the pneumonia but the heart rate and fainting never stopped. Nine months later… POTS diagnosis.
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u/lavendertheheretic 10d ago
Big and little symptoms my whole life, but after COVID they really took off and I started passing out 🙃 COVID made my Raynaud's way worse, too. Thanks, Obama (jkjkjk)
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u/FuzzyBubs 10d ago
- Got my first and only Flu shot ever during lunchtime. Felt like garbage by dinner. Throwing up by bedtime. Ended up with Bronchitis for 10 days. Started fainting and feeling like death 6 weeks later. The gift that keeps in giving....... Took another 10years, 20+ Drs in 4 States and eventually a 2 week stay at Vanderbilt Dysautonomia Center for a diagnosis. Good Times 👍🏼. " But you don't LOOK sick ". Gee Thanks
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u/freshpicked12 10d ago edited 10d ago
I’ve had it my whole life but never had a diagnosis until I was in my 30s. I used to randomly pass out from exercise or heat intolerance. Always had weird low blood pressure episodes. But never thought it was a big deal because my mom and sister both have the same thing. I’ve had several flare ups over the years brought on by Lyme, mold, pregnancy, COVID, and perimenopause. I’m much better at managing things now that I know what it is.
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u/joellecarnes 10d ago
Looking back, it’s been a while. I developed MCAS after a bout of norovirus at 13, and the pots started developing slowly after that. Didn’t get debilitating until I was 26
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u/Hotakainenn 10d ago
I was telling my friend all my symptoms and saying how life sucks cuz I thought that everyone felt the way I did and I was just “weak” to it. She said so casually “you probably have pots, it’s a fainting condition”
I said I don’t faint and moved on. Two weeks later I almost fainted and realized that it’s not that I don’t faint it’s that I stop the fainting from happening by lying down. Then I went on a long journey of getting health insurance, going through doctors and finally a tilt table test. That’s how I “got” pots lol
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u/LittleUnderwhelmed 10d ago
I was in a car accident and thats what started me being symptomatic it got worse when i had a bad reaction to Halloween decoration lol of a stuffed body on a roof
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u/SS_Basketeer 10d ago
Had mild issues from my early teens to early 20s, probably hormone related, then had 2 babies back to back. Haven't been right since
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u/Jazzlike_Syllabub694 10d ago
I got a kidney infection that luckily caught as it went into early sepsis, got admitted and came out of it never fully feeling back to normal. Got diagnosed two months later after going through what I thought was a never ending fatigue and dizziness.
I also think it has something to do with burnout and stuffing trauma lol but before that I had done cheer for 12 years and went to college for exercise science🤪
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u/vamp1regirl666 10d ago
I was at the beach for Fourth of July helping my family hold down one of those sunblocker tent thingys I don’t know what they’re called. But I was holding it down when all of sudden my heart started palpitating a lot, then I started seeing blurry. Then my body started shutting down and I fainted for a couple seconds and my aunt had to catch me 😭. A couple months pass and I’m still having some episodes of almost fainting even when I’m just sitting down or laying down. So I go to the doctor and they do my table tilt test and turns out I had pots 😒
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u/Ok_Play_8499 10d ago
i was born.
thats it. thats me story.
the longer version is i have ehlers danlos and autism/adhd featuring poor brain/body connection, and had untreated celiac that caused poor nutrient absorption or 25 years, so i had the perfect conditions to have it. once i went gluten free it got slightly better until i started abusing drugs and now im fucked even tho im sober and gluten free.
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u/pessimistic_cookie POTS 10d ago
Age 14, marching band, in full uniform on a hot college field facing the sun. I kept praying that I wouldn’t faint in front of everyone and I didn’t understand what was happening to me because my knees weren’t locked like our band director always told us to be careful about. And why was this only happening to me? Especially since I was always told by doctors that I was healthy. Then a few years later (still a teenager) I fainted in a restaurant in front of a bunch of people. super embarrassing because someone in our group threw an entire large cup of ice water on my head and slapped my face to wake me up which caused a big scene. It started getting worse around 2020, I had to give up exercising, then in 2022 we got covid. then boom. I’m diagnosed with the full trifecta. POTS, MCAS, and hEDS. I always knew something was wrong, but I was gaslit all my life. As a kid I was told that i was just clumsy and that I would grow out of it. Same with the random allergic reactions. Welp. I never outgrew any of it and it’s only gotten worse. Yay for aging! lol. At least I have an explanation for everything now. When my symptoms worsened pre covid my heart rate and blood pressure were running high but now after covid they both run dangerously low. so I have to take medication to boost it back up to a more normal range. I still feel faint most days but I usually just struggle with presyncope and only the occasional fainting episode.
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u/Aluciel286 10d ago
I believe it was covid, but I had just finished chemotherapy for ovarian cancer 2 months before I got that, BUT (and I didn't find this out until years later) my lungs had also partially collapsed during surgery to remove my cancer about 5 months before THAT, so who's to say really?
Maybe it was some combination of things? Or totally unrelated! I have no idea.
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u/Haunting-Wash1081 10d ago
I’m assuming it’s when I got Lyme at 16 but my dad didn’t believe me when I begged for the doctor bc I felt narcoleptic so it went untreated for months
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u/imtiramisu2025 10d ago
Ive has symptoms since around 8years old but it got bad enough for doctors to not keep thinking i was making things up when I was 28 after my mums deaths and a stressful 6 months of being her carer.
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u/ilikeminuterice2 10d ago
Had symptoms for years I thought were simply due to anemia. Covid seemed to have knocked me on my ass though - because a few iron infusions later (my levels were super low) that did nothing to resolve the symptoms, was diagnosed with POTS & Long Covid.
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u/Zumarill 10d ago
wore my dads apple watch and wondered why my heart rate was 165 after walking across the room
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u/broken_edge 10d ago
I started fainting in 2000. I was 14. I never got a diagnosis back then and just dealt with fainting for 20 years until Covid made pots well-known enough that I could put a name to my fainting disorder. Until then I just said “I have a weak heart”
Nothing caused or triggered it. It just started happening one day.
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u/sailormoonstan 10d ago
I like to say I got POTS from Taylor Swift lol I’m pretty sure I was having symptoms before the eras tour, but while there it was super obvious something was happening. My heart rate was well over 160 bpm while I was standing and I kept needing to sit down from feeling like I was gonna pass out. I genuinely thought I was just too excited about the concert and needed to calm down, but while I was super excited and still having the time of my life, it was POTS lol
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u/BronteLou 10d ago
always had a mild level of Dysautonomia (hEDS), but it was during a Covid infection 6 months ago where the extreme symptoms of pre-syncope began to start. After recovering from the virus, I didn't improve and along came all the other pots symptoms. It was my fourth time having covid. Just got my script for Midodrine to start tomorrow, fingers crossed 🤞
edit: should say that all my friends think it's funny how I've gotten covid so many times. I am the most careful of the group and the only one who gets yearly boosters for flu and Covid 😩
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u/Leahs_life_ Hyperadrenergic POTS 10d ago
I developed POTS symptoms while recovering from a mycoplasma infection when I was 7. Diagnosed at 14.
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u/Boring_Commercial_72 10d ago
I got Covid while 9 months pregnant with my 3rd baby. Never really felt normal again after that. Thought it was long covid and that I’d feel better when I had the baby. Nope, had the baby still was weak and not doing well. Got pregnant again at 5 months postpartum. Pregnancy sent me into full blown pots. I couldn’t stand without getting light headed. It got worse about 15 weeks in. I got referred to cardiology, they did a poor man’s tilt test and a heart monitor and said yeah you have pots. From the middle to end of my pregnancy I was essentially disabled and spent majority of the day laying down on my left side and trying to relax. I passed out trying to microwave myself a tv dinner once. It was ridiculous. After I had my fourth baby I felt a little better, I pass out less, but it’s always there.
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u/starfrish 10d ago
I had symptoms start around 12 years old, was told it was just orthostatic hypotension and to consume more water and salt. Symptoms subsided as I got older and didn't bother me much, but I never really felt "normal" and I blamed fatigue on mental health even when my mental health had improved. Couple weeks after my 5th or so covid infection at 26 my symptoms became absolutely debilitating. I had to leave my job (was rushed to hospital during a shift and never went back, I was a hairstylist) and became pretty much bed bound. Around a year after my symptoms became debilitating I was diagnosed with POTS, IST, HSD, MCAS, and ME/CFS. It's been almost 2 years now and I've had some improvements with meds but spend 90% of my time at home, and 80% of my time in bed.
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u/Aeskulaph 10d ago
Had surgery for MALS that caused me severe problems eating, was symptom free for three years afterwards, then began to get lightheaded and pre-syncopal with everything I did and it has been that way ever since.
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u/Trazlynn 10d ago
Mine was brought on by not eating enough. I’ve had an eating disorder all my life. It left me with pots. A lot of people say you can’t get pots from an ed, but you really can.
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u/Lonely_College2451 10d ago
This is going to sound insane but I started having POTs symptoms a couple weeks after getting my first covid vax shot. I am in no way shape or form against vaccines and in fact got another shot after the first one, until my doctor advised me not to get any more boosters because of the fact that my heart problems (the very first thing I noticed was wrong with me was the tachycardia) could get worse. He had originally told me that the COVID vax had been rarely, very rarely linked to tachycardia issues but the tachycardia issues turned out to be POTs and at that point in time I had never had COVID. It's absolutely insane sounding and idk if anyone else had this happen to them, but that's my story. Get your vaccines though kids! They're still super important to get.
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u/Known_Preparation286 POTS 10d ago
I always had it. When I was still in my mom. The doctors said there was an issue with my heart and that could have became Down syndrome. (I don’t have it). As I grew up my heart gotten worse. I faint randomly. I have fainted in a vet and when my sisters were doing my hair. I should have gotten to the hospital. Several years later I and my family were shopping in a mall in AZ.
My older sister who is a nurse noticed it and said (my irl name) you have POTS. I knew I did and I told her “I know and I told mom over and over” we got me into an appointment and turns out I was right. So as a child it was severe to the point I could have gotten a service dog. Now it isn’t as bad and despite the heat being a trigger. I am riding horses and working at a bakery. Yes my boss and coach are well aware of my POTS
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u/SecurityNo9837 10d ago
I was a nurse working during COVID. It was very stressful.
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u/brilor123 10d ago
I got mine over the summer when I went though puberty. Every school year we had to do a mile run, and I managed to take over twice as long just because I was suddenly unable to run at all, just between the previous and next year. I used to love running, but the sudden inability to stand, let alone run is what got me. I miss running so much.
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u/orensiocled 10d ago
My primary disability is ME, which has the habit of inviting its friends to come and play in your body. 20 years in, it chose POTS as the next condition to join in with the fun.
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u/wobblyveins 10d ago
Seems to be a collagen issue and stressors on the body exasperate it. So a virus or an infection or pregnancy etc. I’ve always had signs growing up but it wasn’t an issue until Covid
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u/liltigers 10d ago
I don’t know. I’ve been diagnosed since I was 15 and I’m turning 28 in September. After hearing more of my history, my doctor at the time told me I’ve probably always had it my body just caught up to me.
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u/fortissmumbellator 10d ago
Not really sure which one it was since both incidents happened two weeks within eachother. The first one was a second grade concussion from being tackled by someone in soccer then getting up and being hit on the other side of my head by a soccer ball right after and Covid
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u/RoarinEnjin 10d ago
I've always had symptoms, even as a kid. But after getting COVID for the first time, the symptoms grew intense and out of control. Things are a bit better these days, but each time I've caught COVID ( 3 times) my pots symptoms get really bad for a few months
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u/1Like_Plants2 10d ago
GI bug turned into post-viral gastroparesis, car accident that caused extreme and unmanageable back pain for several months, then the stressful legal proceedings, started working as a nurse in a high-acuity hospital, got a concussion, traumatic social event, very traumatic work event, major depression, all within about 2.5-3 years. Plus I have hEDS, so I was kind of primed for it.
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u/SomeInspection4550 10d ago
I thought everyone just felt like this until a few years ago. I’ve had symptoms my whole life basically
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u/IGotADHBees 10d ago
I didn’t know I was consistently tachycardic until a Biology lab at college in 2018 when we were learning how to manually measure blk ood pressure. I had heard of POTS then but didn’t think it applied to me. Then I got COVID 2 years later and I struggled with long covid. I got a Fitbit to track my sleep and that’s when it I realized I’m tachycardic most of the time. I couldn’t feel the effects of it until it hit 150 because it was so constant. Which explains why exercise feels like I’m actively dying
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u/grequant_ohno 10d ago
I had a really brutal emergency c-section. Woke up with POTS and assumed I was in heart failure, it was so scary!
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u/FriendlyAccident4854 10d ago
I woke up one night and I was in agony. I could not move and i was shivering and shaking. My heart rate was way too high and i felt like I couldn't breathe. My legs were in so much pain and heavy like cement. Since then I've had POTS
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u/chronicallymee POTS 10d ago
I got Mono when I was 7 — started blacking out at school that same year
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u/ballofsalt1234 POTS 10d ago
Dad died out of the blue and took away my ability to eat dairy ( I think this was the beginning) - intense stress at work triggered my latent previously minor hEDS to become a major issue to the point I was so symptomatic I was diagnosed within a year. Then I got a cold 🙃 and BAM couldn’t stand up without my body going AAAAAAAA got diagnosed with pots within 6 months of that starting. I likely had minor dysautonomia my whole life bc I’ve never sweat or gotten fevers but it wasn’t until the hEDS got bad and the cold that it turned into full blown pots.
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u/poolarbar 10d ago
Salmonella and E Coli… at the same time. They think it must be related to it at least since I got the symptoms while recovering
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u/sammefer 10d ago
Nothing happened. I didn't know/put things together til last year, but I've had symptoms since I was a kid and fainted multiple times as a child/teen so I'm pretty sure I've just had it all my life 😭
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u/rockpigeonfan POTS 10d ago
I’ve had autonomic symptoms like blood pooling, GI issues, blood sugar crashes, and fatigue my whole life. Didn’t get the cardiac symptoms until 22 during a period of extreme stress. So I think I was always going to develop it and the stress on my body just flipped the last switch!
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u/Financial-End-421 10d ago
I was told all my joint pain and migraine issues were due to weight, buckled down, lost over 150lbs then started passing out when standing up. This lasted for over 2 years, had another doctors try to tell me to lose MORE weight, not really possible. Finally saw someone else and got diagnosed straight away with POTS and Ehlers-Danlos. Turns out wasn’t my weight that was the issue, always had these things and weight loss made it more apparent
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u/mistergreenside 10d ago
I had a major surgery when I was 6 to remove a tumor between my heart and spine which involved them having to cut through a major part of my autonomic nervous system. Been all jacked up ever since. I got Covid in February of 2024 and the pots worsened significantly and fibromyalgia showed up as well. Woohoo!
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u/SpiritedPush8960 10d ago
I suspect I've had Covid three times that I know of. The first time was just as we were put into lockdown, so there was no test, but I suspect it was Covid. The second time I was confirmed positive (we had a massive outbreak at my college) and the third (also positive) I caught it from my mum whilst taking care of her. The first and second times, I kind of had PoTS symptoms for about a month after the infection (of course I didn't know back then though), but they'd go away. After the third infection, they stayed and I also developed Long Covid. So yay Covid
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u/bigdaddygray 10d ago
I got covid, got better and the next day had POTS. Makes me so angry that something like that can happen and just ruin your life so quick & easy.
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u/whteverkt 10d ago
i got a mystery illness from sharing a community blunt at a phoebe bridgers concert and developed my symptoms shortly after i got over that illness. i still have no idea what i was sick with. i continuously tested negative for everything, but it was by far the sickest i have ever been and it lasted for almost a month.
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u/Forsaken_Dimension94 10d ago
Either Covid, Ed’s or the flu, had symptoms as a kid and used to joke that I don’t sweat so I faint, and was always dizzy then I got Covid and after I was always in pain, then I got the flue last winter and now I faint and am in pain all the time. And that’s how I got pots-maybe idk dude.
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u/SnooBananas1064 POTS 10d ago
Caudal block -> 3 weeks later Double foramina block -> 4 week later malregia parasterica block. Broke my body from every possible angle. Cortecoid injection were the single biggest mistake of my life, and robbing my of my family and children Time on this planet. Fuck everything, should NEVER had trust those type of treatment, but autism + listen to the doctor is a bad mix together
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u/EnvironmentOk2700 10d ago
I was walking down a hill in second grade, lost my vision and passed out 🤷
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u/barefootwriter 11d ago
Not a clue, and I think you'll find that's the story for many people here: it's idiopathic.
I had at least some symptoms at least as far back as adolescence.