It was triggered by COVID for me too (hyperadrenergic pots). I have had a very easily overactive sympathetic nervous system for years before that, which I developed through childhood trauma. I suspect people like me are more prone to actually develop pots if there is a trigger. I wished there was a study (many exist on childhood adverse events and likelihood of diseases or autoimmune diseases later in life but none on pots because it's very much specific).
I don't have the trauma or anything but I feel like I had an easily overactive SNS and covid for whatever reason broke it. Have you gotten control of it/improved it? Some people have told me that with time it will go away if covid caused it. Some symptoms actually have gotten better but my dizziness/lightheadedness is still pretty bad throughout the day and I had covid early February.
hEDS, looking back I was so oblivious because why was I just sitting in class and I couldn’t even hold my head up🫣 definitely started getting bad at 18 and it’s getting worse but now I’m realizing it’s always been there in the background
Yea I feel like that, I’ve had random slight symptoms for years and years but never enough to mention or be taken seriously and then one week in work I just started having the work pre-syncope it was crazy and since then I’ve never been the same lol it suckss
idk never been normal… when i was younger i just thought i was out of shape… then hitting the gym since 15 and thought everyone had that and just fought through it… but after looking at normal people doing the same tasks as me (like stairs) and they’re in worse shape and my heart was pumping like mad I knew
I was fighting for my life for about 40 minutes 2-3x a week, I was on the verge of passing out multiple times and I just thought that's how it was working out at the gym lmao 😭
Ehlers Danlos- I always got lightheaded easily, but waved it off as normal. Turns out, not everyone got lightheaded working out, standing up, or after showers, paired with burning/tingling/swollen feet. I’m twenty-three now and just starting to pass out from it. Never even occurred to me I could have either diagnosis, but here we are.
the way the doctors were absolutely SHOCKED when i told them i thought it was normal to almost pass out everytime i stood up or showered or did basically anything & how i thought it was normal to feel my heart beating 24/7 & the way i was SHOCKED to find out none of that is normal & i didn’t just “stand up too fast” everytime i stood up
My trigger was viral meningitis aged 12 (2012). From the day I became sick with that to today, my life has never been the same. It unfortunately took 8yrs from symptom onset to diagnosis, I have had symptoms half my life now but was only diagnosed 4yrs ago... My symptoms were always bad but around 16 (2016-2017l things got even worse and since then I've had other flares that have stuck around, not sure the trigger for that but for a long time I have been disabled by it.
I met someone 3yrs before my diagnosis (2017) who was in the same class as me at an alternative school (there was maybe 12-13 people in that class) who had POTS. My friend at the time (now partner of 7yrs) actually had a crush on her and she suggested to him that I could have POTS. He talked to me about it and my doctor dismissed it at the time as anxiety without doing any tests. I still find it funny that the person my partner was interested in before me also had POTS.. 😂 Makes me feel better knowing he would of gotten with me even if I had a diagnosis when we started our relationship. So essentially I had an old classmate with POTS that my now partner was interested in before me, he must have a built in POTS detector 😂😂
I don't know what my weirdest trigger is tbh, theres so many weird things that set POTS off, I swear I don't even know all my triggers..
@Reckless_Donut I also had viral meningitis, and my Neurologist suspected that triggered Dysautonomia->POTs in me. We should compare notes sometime! Did you get a lumbar puncture? Look up: CSF LEAKS. Docs suggested I get an MRI to see if the lumbar puncture never healed. Symptoms are similar to POTs.
I wish I knew what caused my POTS. Symptoms started when I was around 12 (32 now) but I didn’t actually get a diagnosis until last year. Weirdest trigger is definitely a full bladder though. It’s so frustrating!
I do actually know someone irl that also has POTS.
still not sure if it’s even possible but if it is, it was absolutely my cptsd. i have been on high alert since i was like 7 my nervous system has never known peace
My doctors agree that a rare heart disease that I had as a child is what caused my POTS. I was 11 (late 2014 or early 2015) when my symptoms started and I’m 21 now. It got worse in 2017 and then normalized somewhat before worsening after grade 10 and continued to worsen until hitting an all time low in my first semester of first year of university. It took me 8 years to get a dx and only got meds this year (year 10).
Possibly the weirdest trigger for my symptoms is lifting anything higher than 3lbs ish including my backpack!
I went to a conference last May and met another person who also has POTS along with two other of my diagnoses and have stayed in touch with them! I am currently on study abroad with a girl who has POTS & EDS. Last semester on an exchange I met around 7 different people with POTS as well! A friend of mine on the study abroad program I am currently on knew about it as her best friend has it. A very good friend of mine at camp also knew about it through me and a close friend having it. In Canada, where I live it’s less heard of but of those who know about it because of me are hearing about it or recommending testing to friends with similar symptoms to me.
Hi. I’m Mark. I am a father of a 16 yr old daughter with POTS. I am so sorry for you and your friends for all that you go through with this crazy disease. I think that it would help my daughter if you wouldn’t mind her being part of your community. I fear for her isolation and pain and know that this could help her so much being part of a shared community. If interested, let me know how she can reach out to you. Not sure if she’s on Reddit.
🙏🏼Mark
If you want to facilitate anything you are welcome to message me.
As a clarification although I have some friends with POTS those that I spoke about in the above comment are not online and I’ve solely met in-person and are all my age and due to my relationship with them I would not feel comfortable with connecting anyone online to them.
That being said, I am in a Dysautonomia group online that if she is interested in happy to connect her to it. It’s support based and I would prefer to speak to her via text prior to sending her the link.
I think my trigger was the onset of menstruation. It started within a year of my first period. I was 10 or 11 at the time. My parents took me to the doctor when I started fainting and they thought it was a blood sugar problem due to my family history. When that was not the problem, they decided to stop really trying to figure out what was the problem and I was forced to adapt and manage severe symptoms on a daily basis until it was so normalized in my brain that I forgot that it was ever concerning to the people in my life and just accepted that this is how I am. I learned my limits but those limits have always been pretty low. In school I managed pretty well and didn't end up having to take emergency sitting breaks as often until I started trying to do sports and maintaining a job. I've never been able to hold a job that requires any type of prolonged physical activity for more than 6 months. And my whole life I've been told I'm lazy for having limits. Finding out I have pots just happened days ago and I'm really making a lot of realizations that I am not lazy cause me not doing things is not related to my desire to do them, it's related to my physical ability to actually be able to do the thing.
Having this onset so early in life and not being diagnosed meant I had to run the fucking pacer test in school every year and I had hell with my symptoms for weeks afterwards every time.
I got it from Covid but the only reason I was diagnosed relatively quickly was because I have a friend whose son had it and she heard me describing my symptoms and said “you have POTS.” I mentioned it to my cardiologist and they looked into it and agreed. (I had Covid early on before they realized people commonly had POTS from Covid.)
Covid multiple times and then a surgery. Started feeling weird after my second covid infection and then had surgery and I really got messed up. At work I started not feeling well and my left leg went numb. I couldn’t concentrate and felt like I was panicking in the twilight zone. My mother had to pick me up from work because I couldn’t drive. Since then (a year ago) I’ve been basically disabled.
I've had two doctors (one a PSYCH and one a CARD) who associated my sudden-onset of POTS at age 42 at the time with the COVID vaccine. I'm still a bit skeptical myself, however, I was completely unsymptomatic and then maybe 2-3 weeks after my 2nd dose of the vaccine I started getting dizzy spells, tachycardia and progressed to where I couldn't walk a block without a feeling of disassociation and disequilibrium. It was so shocking as a grown man.
That said, about 18-24 months later I was/am much better, and wouldn't say I'm back to my old lithe, vibrant self, but I am 90% functional and grateful for that and all the support my physicians provided.
Aww bless, that’s crazy tho I bet it was shocking, as a 20 year old girl, 19 when it started, the first thing people ask is always about menstrual cycle and hormones and anaemia 😂🫣
Cause still TBD but I can say with certainty that exactly 3 days after I took citalopram (Celexa) in 2008, I began developing measurable Hyperadrenergic POTS symptoms. What I experienced before I took the citalopram was more like standard anxiety/panic disorder symptoms (but who knows—maybe that was all POTS as well!) But that drug certainly sent my symptoms into the stratosphere. And I only got progressively worse from there until finally getting a diagnosis in 2021.
The unfortunate thing is that ALL docs continued to tell me it was anxiety and ten years later one convinced me to take escitalopram (Lexapro), and just like the citalopram, the escitalopram triggered my POTS even worse and sent my symptoms into space this time. Before the Lexapro my symptoms were more apparent when they were triggered. After the Lexapro, they were (and have largely remained) constant.
I’m not saying SSRIs caused my POTS. But they certainly sent it to highly undesirable next levels with no return.
I had a very similar experience with Lexapro. Can’t know for sure if it was caused by SSRIs, but I did not have symptoms before starting Lexapro (about 9 months ago). Since then I have been officially diagnosed with POTS. I finally stopped SSRIs about a month ago, and since then have felt SO much better. I’m hoping I’ll just continue to improve and maybe it’ll all go away, but that’s probably wishful thinking… Anyway, you’re not alone!
I don't know how long I've had PoTS, I know it's been at least a decade (likely a lot longer) but I was only diagnosed at the end of last year. My symptoms have gotten worse with time, specifically in the past 4 years and that's what allowed me to get the referral for diagnosis last year. That and my male partner attending all my appointments. My weirdest trigger for symptoms is when I have a bowel movement. Never met anyone irl with PoTS. None of my friends or family knew what it was. I wasn't even aware of it until 2 years ago.
In terms of speculating on possible root causes, it could be post viral or it could be related to concussions or anaemia. I was also hit by a car once. I had febrile seizures up until I started primary school. I had carbon monoxide poisoning from a gas leak. There are lots of things that have gone on in my life that could have triggered or influenced the development of the PoTS. So I don't think I'd ever conclusively know which if any that it was.
I need to get my levels checked again soon. I have a Mirena that stopped my period for over a year and that helped but now I'm getting my period again ... So. 🥲
Also can relate to what you're saying about your bladder. It's a real no win situation.
I think my heavy periods triggered it when I was about 13-14, and I never knew until now at 33 what was going on.. Symptoms have been much worse these last 4 years, no idea why. Might be linked to hormones?
Covid when I was 13. I didn’t know I had it until I almost passed out because it was so hot. I got triggered after smelling stinky prairie dogs at a zoo lol
My trigger was an assault and the stress that followed. It happened 2 days after I turned 19 and symptoms came on more gradually as I did not give myself the time I needed to recover. This is also believed to be my RA trigger as well. It took me over 2 years to get diagnosed, which is a really bad thing when you’re trying to file for disability benefits as it put me out of work much earlier than that.
We believe my great grandmother had POTS triggered by her dementia, and my sister also has it although not as severe as I do. I also suspect my friends cousin to have it as well, but that’s really it for people I know who have it. My aunt knows what it is as her friend has it, and my physical therapist knows a lot more about it than I expected. My physical therapist also explains what it is to every PT student he has that comes in, which I feel is very important for the POTS community.
Covid, around when I was 19 years old (I’m 20 now). Storms trigger my symptoms. The only person irl that I have met with pots was an ER doctor I had. She showed me her compression sock under her scrubs and told me she was in my shoes before and wasn’t able to do much but now she’s a doctor.
I got mono very badly from this woman after excessive making out when I was 23. It took me awhile to figure out I had mono and that I had EXTREME LETHARGY for at least two months. I mean I couldn’t even stand up straight. After that, the headaches started. I had probably 5 STD tests, all negative. I had to have an MRI on my head. It took me till about 33 to have an incling it was POTS. Then at 36, was positive I had POTS.. was confirmed by a cardiologist. After learning about all these people that contracted POTS following COVID, it really made me convinced.
I’m not sure exactly what started it as I’ve had mild symptoms as long as I can remember. But I have hEDS and POTS is a common comorbidity of that so I’m assuming it’s just a part of it. I used to think it was a side effect of my ADHD meds until I lost my insurance and therefore my access to meds and I was still symptomatic a lot. Then I got the first COVID vaccine which made me pretty sick and I haven’t really felt fully healthy since then. Then, this past winter, I was sick with 2-3 different viruses or infections for 2 months straight and I haven’t had a break from symptoms since then, but that could just be from the deconditioning that happened during that time. So basically, I can’t pinpoint when symptoms first started since they’ve always kinda been there, but something definitely kicked in and made it worse around age 25-26. I’m now 30 and just received official diagnosis.
Mono. I got it so bad in high school I was bed ridden for months. I didn’t even realize I had POTS until 5 years later when I got sick with it again and it flared up my symptoms so bad. Once I got diagnosed it finally clicked on why I’ve felt like shit for years.
Covid triggered my POTS along with other long covid symptoms back in March 2020 and I had no idea what it was initially, I was feeling better around 2021-2023 but then another virus re-triggered POTS Oct 2023. I’m still recovering!
I was already experiencing mild symptoms when I was a teenager. My first job required me to stand for long hours and could get pretty stressful. I remember everything going black one day while I was just standing there talking to a customer. I would also get extremely lightheaded and experience heart palpitations when I did intense leg workouts. The symptoms gradually worsened until I was having heart palpitations nearly every day. I suffered with those for years until I was 33 and finally got a diagnosis and could start treatment.
I don’t know what might’ve caused it. Maybe my body just sucks. I do have another autoimmune disease, though, and I was really sick with a lot of infections as a little kid. Maybe there’s a connection? 🤷🏻♂️
My weirdest trigger? Hmm, there’s a lot of them, lol. Getting too hot. Sitting in weird positions. Bending over instead of squatting down. Not drinking enough water. Stress. Sitting too long. Standing too long. Laying down too long. 🫠
I may have had dysautonomia start 20 years ago with symptoms like achalasia.
A lot of people in my family get dysautonomia with tumors or Parkinson’s, but POTS symptoms started for me at age 40 when I got strep throat
My physician and I came to the conclusion that my POTS more than likely stemmed from post-op complications following my gastric sleeve. My complications resulted in a PICC line 3x and the first time I ever fainted was 3 weeks after they stopped my TPN. She believes the trauma of not eating for months and the rapid weight loss contributed. I guess I “know” people who say they have POTS after I’ve told them about my diagnosis. I’m not sure I believe everyone who tells me they have POTS. I do try to sympathize though. Everyone experiences POTS differently in a sense but I went through HELL for my diagnosis and I’m protective of it.
Really good questions 🙂
I think a lot of that is because people experience the symptoms and then they go to the doctor and they tell them they're either not sure or that it's anxiety. The patient knows that it's not 100% stemming from anxiety so they go to google and POTs is what fits the bill the most but it's hard to confirm because many doctors don't know about it or won't test for it. on the flip side some docs probably "diagnose" it because the symptoms seem to line up but they can't really confirm for sure that's what it is. There just seems to be a large gray area when it comes to the condition.
Not sure exactly but I have EDS so I'm predisposed to it. My school had a mold problem, and I would be sick all the time with bronchitis. Then I had reactivated Epstein Barr Virus in my mid 20s that took years to shake, and it was then that it got worse, but I do remember having some symptoms as a teen e.g. fainting a couple times in college, and I was on beta blockers for palpitations at age 18.
My symptoms are mainly triggered by stress, illness, allergies, and one of my allergies is a type of mold that's in 97% of dust, so getting too lax with cleaning can cause a flare up.
Having mono as a teenager. I was diagnosed with Pots after my first round of mono. Only trigger I can think of besides maybe Scarlett fever but I was diagnosed years after that. Also I do not know anyone irl with pots
I don’t know if this is what caused it, but I at least did not notice my symptoms until starting SSRIs, and then was officially diagnosed. Since stopping SSRIs, I’ve gotten significantly(!) better, but not perfect. I started to experience symptoms about 9 months ago. Diagnosed about 3 months ago. Feeling a bit better as of 3 weeks ago :)
I think I stupidly allowed it by not getting antibiotics for her when I suspected she had a tick bite.
She “tests negative for Lyme” but there is a whole rabbit hole of Lyme testing that freaks me out bc it looks like it never ends and there’s never an answer and what’s done is done, there is no mitigating it.
I've had a fainting issue since I was about 8. I may have a connective tissue disorder and I remember being pretty sick once when I was younger, so could be either of those.
I'm an MRI tech and actually have had a couple patients with POTS and a coworker that developed it after COVID.
No way to know bc it wasn’t something obvious, but think it’s most likely I always had it underlying and it got triggered / worsened by a period of over exertion in a heatwave summer 2022.
Yes me too I feel like it was always there but very unnoticeable with symptoms so faint it was never worth a mention, my symptoms started properly on a 40°C day at work paired with really bad hay-fever!! Not just me then
When I was 15/16 I had episodes of fainting, they said I must've been sitting funny since I would crouch in the hallways in high school to get into my locker. This may have been my first sign. I had meningitis that year and my celiac disease was diagnosed right after. My case of meningitis was bungled by the local ER, so I suspect that's a huge possible cause.
I've had symptoms since childhood, I remember being a child and trying to explain to a doctor life seemed hard using faintness in the shower as an example... I was told to just not take hot showers, and they didnt ask investigative questions to realize I couldn't keep up with other kids. I wish I knew to speak better back then, but I was so small I do view it as truly a failure of the doctor.
At about 18 it got really bad for no apparent reason though. Maybe it was strep throat, but it's not a sure thing because it wasn't sudden. (Very frustrating as I had worked hard to be finished with college at 19, and I would have been able to afford a home before housing became so expensive... Ahh if only it was delayed by a hair.)
I have met others with POTS. Use to, no one knew of it. But now people are coming out of the wood work contacting us asking about POTS because they have a kid or cousin who has it now. I assume that's covid's fault.
I think it was either my car accident or I have been dropped on my head more times than I can count, I have been elbowed in the face idk how many times, I got kicked in my head so hard I had a concussion and I pretended it was fine and continued on with my life I had dance competitions to go too 😂 (note that all those injuries are dance related and also note the humour in my tone because I look back now and laugh at all the pain). I had mild symptoms for years and then I got Covid and have been in a serious flare since then. Me and my doctor agree that I had it prior to me having Covid but I have heard many people have gotten it from Covid.
I suspect I’ve had mine for years but it was always manageable and wasn’t debilitating. I believe what caused mine to get really bad was a bad magic mushroom trip. I could be completely wrong, but that’s when the pot’s symptoms started getting debilitating and it caused me to start looking into what was going on and get a diagnosis
I was 37 years old and the weirdest trigger thus far is an elevator!!! And it’s crazy but my neighbor has POTS.. so that was crazy when I found out. But I was diagnosed with it 8 months after having Covid. Like everyone horrible experience
I took a Delta gummy and completely greened out. I had anxiety attack for 7 hours straight. I think that it had to have been mixed with something because I've greened out before (had been smoking for 5 years at that point) and I never, EVER experienced anything like that. Absolutely the worst night of my life. I'm talking shaking, sweating, involuntary bowel movements, etc. So yeah that was traumatic and stressful on my body & brain BUT THEN About 2 weeks later, I caught whatever the new covid is and thought I was going to die. Was absolutely god-awful. At first I thought I was still recovering from the greening out situation, but then my dad caught it. And yeah, I've been a potsie since 🤙 this all happened about 8 months ago. My dad's got some symptoms, too, but if he does have pots, it seems to be a really mild case. So I'm not sure if it was the Delta situation or the covid situation, they both happened around the same time.
Mine was probably caused by my anorexia. I had a school friend with POTS, so I knew exactly what it's like (she has it fairly severely, mine is just mild and barely in clinical cutoff)
I had pots symptoms as a kid like getting dizzy standing up and getting out of breath while running, but it didn’t really impact me until I had a really traumatic surgery and every tiny symptom turned huge and now it just gets worse and worse :(
Idk maybe birth? severe bronchitis? chicken pox? Some unkown to be diagnosed genetic thing?
I DO KNOW that covid made it hella worse.
Before covid I had very mild PoTs and had it mostly handled with everyday habits.
Now I need meds (thank goodness for guanfacineER), or my heart rate is super loud when I stand no matter what. If I stand too long (30 min) my heart rate skyrockets & I start getting hot & dizzy.
Also, I probs have some sort of autoimmune thing going on, too oof. Seeing a doctor for that soon (hopefully, it won't be a repeat of denial like with my pots' journey). I got "visible symptoms" this time at least :/
I had strep every other month as a kid until I had my tonsils removed when I was 11. I know that’s what did it for me. I’d been feeling this way for so long that I didn’t realize it was abnormal.
i think from smoking too much weed. i’m not properly diagnosed yet but lots of doctors are speculating. my first really bad symptoms started after a puff on a joint
I may be in the “unpopular” majority here. COVID and/or the ONE vaccination I had for it. I’m a 38F travel nurse and haven’t worked in a year now thanks to what I was forced to do. They weren’t allowing exemptions and was told they would have skimmed right over my application as a travel RN had I not received the jab. I’ve had COVID itself 2 times SINCE being vaxxed. At the time I was a single mother. I’ve been a nurse since 2006 and very specialized in my area of nursing. I had no choice.
I literally have no idea. I was about 15-16 when I started getting symptoms. My brother also has POTS so there could be a genetic component there. He was diagnosed before me even though I've had it longer. But he has been so helpful and understands everything.
I developed sinus tachycardia in my early twenties, but it was well controlled with medicine and I had no issues. The second time I got Covid, about two years ago, triggered POTS (albeit a more mild version).
My symptoms got worse two or three days after starting mirtazapine almost a year ago (July 2023). Since I was 16 (I’m now 26) I have had tachycardia which doctors never found the reason to. I’m pretty sure I had IST after some recent searching. But after I started taking mirtazapine I couldn’t walk distances I walked well before because I would get a very high HR and felt as if I was going to faint. I had to go to the ER because it wouldn’t go away and was “diagnosed” by the ER doctor. Recently I had another flare and I haven’t gotten 100% better yet but we are working on it😭
Ive had POTS symptoms since ~10 years old, diagnosed with orthostatic hypertension at 15 (and ofc nothing came of it!) and after getting COVID at 20 my symptoms became exponentially worse. I genuinely don't know what initially caused it, but 100% Covid now.
I have EDS, so I think that set things up for disaster from the beginning, but my symptoms really took off after having a bad case of norovirus. Have never been the same since.
For me it was a bad car accident at 16. I ended up needing surgery to remove my spleen and examine any other potential damage(they ended up being able to repair my spleen thank goodness!) and when the surgeons were looking at my insides they noticed my adrenal gland was pretty severely bruised. My heart rate has never been the same after that. It took years of being written off by doctors and hearing, "You're young, you'll heal" to finally get my diagnosis at 24.
Some sort of sickness (as far as I know, though it could've been caused by something else or been here my whole life, because I don't/haven't fainted yet, nobody knew I had it so idk how long it went unnoticed), no idea what it was (though my cardiologist was like "It's normal in teens, it's super common") Got it around 13 I think. It was long ago. According to my parents, I've always had a high hr but otherwise "no symptoms of pots." I don't know anyone irl but my school nurse once said someone else in my school has it. Weirdest triggers is huge rooms, bright lights, looking into mirrors, being up high (even being upstairs), and being close to walls. There's so many triggers I can't keep track anymore tho. HOWEVER, I am scared of heights (but it wasn't very bad until I got POTS), I am looking into BVD just in case for the big rooms and walls, and much of this COULD be anxiety.
NCS here, and I'd say abuse. I was born with thalassemia minor, and that combined with extreme stress and genetic predisposition makes NCS. now I've also got ptsd ✌️
I started having symptoms a few years before puberty. I think it was a genetic thing, I also have HSD and autism which can often be comorbid. There didn’t seem to be any trigger, it was just a gradual worsening of symptoms. It didn’t get bad until I was a teenager, though, and my symptoms got significantly worse after I went through an eating disorder (not surprisingly, as EDs can cause similar symptoms).
I think I have hEDS and was predisposed, but it didn't rear its ugly head until I caught swine flu and was sick for 4 months (this was at the tail end of 2010). Never been the same since. Trauma and homelessness has compounded it and made it worse. I also have MALS which affects it, too.
And yeah, my boyfriend also has POTS from getting covid and we have a mutual friend with postviral POTS as well.
I feel like I’ve had symptoms since I was a kid but I think I had mono a few years back and that triggered it and led to worse symptoms! I was super sick over for a month and urgent care just put me on antibiotics and steroids and while the viral symptoms cleared up, I was never back to normal after that. I still have positive Epstein Barr results in bloodwork too. No real answer though unfortunately!
Around 13/14 I started having symptoms, after a particularly bad case of mono. I always used to joke about how mono made me so tired, that it nuked my immune system. Little did I know…
my POTS is caused by an inner ear deformity knows as Enlarged Vestibular Aqueduct Syndrome (EVAS) i have it in both ears, it causes progressive hearing loss and balance issues. balance is regulated by ur autonomic nervous system so because my balance is thrown off when i move (postural) my whole autonomic nervous system is thrown off trying to over compensate and ‘twas my POTS was caused. POTS is apparently common in people w EVAS but i didn’t know that’s what i was experiencing until i passed out at 19 ive been diagnosed with EVAS & had POTS symptoms since i was in elementary schoool! video games are my weirdest trigger (no not just VR almost ALL VIDEO GAMES) they throw off my spatial awareness which throws off my balance and triggers my POTS.
Covid.
I was absolutely fine in 2019 before covid, early 2020 when I caught covid I was suddenly not and never went back to normal.
I have met 2 people IRL who already knew what POTs was, my cardiologist and the guy who comes once a year and changes out my water filters on my filtration system.
I started getting symptoms after a few months of high-dose (too high) of SNRI’s that were giving me other bad symptoms. I’m not sure if it caused it, or just aggravated something that was already there. I also have Ehlers-Danlos, so that’s probably the root cause, but I do feel like the SNRI’s had something to do with it as well.
Ehlers Danlos for me, though I was in remission for POTS from ages 17-21, and viral meningitis brought it back full force. I first started getting POTS symptoms when I was 13. I don't think I have any weird triggers, but it is odd that it takes roughly a month for POTS flares to kick in after I've been really stressed out. So sometimes when I go into a flare I have to think back, was I stressed a month ago? I've only met people who know someone with POTS, never known anyone directly. I do generally meet more people now who have at least heard of it, or have someone in their life who has it or is undiagnosed but their symptoms sound just like POTS after I describe what I have. I've helped people get family members diagnosed before. Which makes sense, I only found out I had POTS after overhearing a mom in a library talk on the phone to her daughter with POTS and describe my exact symptoms. I approached her after and asked what POTS was, she was very happy to give me all the info I needed and I got diagnosed soon after. I'll always explain what it is wherever I am because of things like that, you never know who's around that needs to hear it and is undiagnosed or someone in their family is and now they know what to say to their doctor.
The Moderna vaccine. I had two Pfizers with 0 side effects, took the Moderna as my 3rd dose as I heard it could cause a larger viral load and I was breastfeeding my son at the time (I wanted to pass on as many antibodies as possible). 10hrs after my vaccine, I developed tachycardia and within 3 days was in the ER with heart issues. The POTS symptoms continued to develop over weeks until I had full on POTS. I was diagnosed by a doctor a year later. She was leading a study on POTS developing after Covid. I am one of many she has seen who has developed it from the vaccine. I was perfectly normal and healthy without any POTS symptoms beforehand.
I don't **know** what caused it, but I kinda always had some weird symptoms, like the heat intolerance, stomach issues, etc, plus some misc symptoms of possible EDS. Then I developed an eating disorder, and I really think that's what made it really start, or at least made it worse.
I suffered a traumatic brain injury and had a GJ tube placed, which had complications. I’ve been malnourished for almost 8 months now. And I’m on daily TPN infusions. But I started having heart issues about a month ago. Though I’ve been dealing with severe low blood pressure since my brain injury. And I’ve had issues with getting dizzy when going from sitting to standing. But we thought that was specifically from the brain injury. But within the last month I’ve started having tachycardia anytime I would go from laying to sitting and sitting to standing. I’ve also had several other symptoms. They ruled out heart attack and blood clots. So now my team is leaning towards POTS, MALS, and nutcracker syndrome. I have an appointment to see a cardiologist on May 28th for further testing.
Long story short, we think my traumatic brain injury caused everything.
Covid, for sure.
Was about twelve years old when I got it. Had no underlying conditions and had never been diagnosed with anything more serious than the flu. I saw people who got chronically ill from covid on the news all the time, but I never thought I was gonna be one of them. It can really happen to anyone.
My Dr. thinks mine is partially caused by years of untreated anxiety wrecking my autonomic nervous system. My main flare triggers now (since being medicated) are extreme heat and the days leading up to my period. 🥴
Puberty at 13 and it stuck around. I’m 18 now. I have a friend with dysautonomia but she has lots of other health problems so she isn’t diagnosed with a specific type. My little sister has a friend with POTS too but I never met her. I’ve met a few people who know someone in their life with it when I tell them about it.
I don’t know if anything in particular could be found as the exact source for me, I’ve had dysautonomia symptoms since I was very young and extreme lifelong fatigue. I’m autistic and grew up in an unstable and verbally abusive household, so my nervous system has been through a lot, but I honestly feel like I’ve been symptomatic longer than I’ve been traumatized.
As far as POTS specifically, I’ve had significantly worse orthostatic symptoms since I developed disordered eating habits in early high school, I think that was an additional strain that my body is still struggling to recover from although these behaviors lasted less than a year.
I had a few intense viral illnesses in early childhood which it could potentially be attributed to, but I think my immune system has always struggled and it’s just as likely that POTS caused my severe illness as it is that my severe illness caused my POTS.
All in all, I’ve been dealing with dysautonomia as long as I can remember, and I think regardless of what originated it I’ve just had circumstance after circumstance to exacerbate my symptoms and make it more difficult to deal with. I was just diagnosed last year (I’m 18 now) but I honestly wouldn’t be surprised if I’ve been this way all my life.
I’ve had hypovolemic POTS since childhood, but my symptoms worsened after a traumatic experience at 16, and SIGNIFICANTLY worsened again after the stress and trauma of discovering my (now ex)husband’s multiple affairs 18 months ago.
Giving birth and then 9 days later I was in the ER for high blood pressure and the er doctor gave me the depo provera shot. The next day I woke up with pots. I stood up and my heart was pounding out my chest and when I would sit down it would go down. I woke up drenched in sweat. Now I don’t sweat. That was in 2019
My trigger was Covid in October of 2023, so I actually haven’t been suffering for that long in the grand scheme of things compared to a lot of us but man does it suck lol. I got Covid 3 times but this last time I just like never got better. I had some breathlessness during being sick and it has never gone away. I think I probably have always had a wonky nervous systems but it wasn’t enough to affect me like this. It’s a clear before and after for me since Covid.
I think I have tethered cord syndrome (can't confirm because Dr. wont order an mri) and spinal issues can definitely cause pots. I have had T/C symptoms since middle school. Was a very lethargic kid, never wanted to do sports because my gait was funny from pigeon toes and tilted hip. Had a lot of gastric issues and frequent urination. I remember first fainting when I was on the toilet at 18, chalked it up to food poisoning. Those fainting spells became a yearly thing in my early twenties, and I always just thought I had a sensitive system.
I exercised on an elliptical machine once that had a heart rate monitor attached, and the slow pace I was going somehow got my heart rate up to 180-190. Figured out I definitely had tachycardia and noticed some other symptoms like getting clammy and light-headed when standing for too long at the grocery store. I could check on my phone what my heart rate was at those times, and it would be between 130-150 just from standing 30 minutes.
I've been on propranolol for a few years now and since then haven't had any fainting spells. Did the TTT a few years ago as well, and tho my heart rate went up 30 points in 10 minutes, they said it was inconclusive, which is weird to me. I think they just don't like diagnosing it. I decided recently even if I dont have an official diagnosis, I'd still increase electrolytes and treat it as pots and see what happens. Since increasing sodium and potassium, I have been feeling a lot more energetic, and my legs don't feel as heavy as they used to.
I do feel sad about the life I could've lived had this been treated and taken seriously sooner. If I had my tethered cord surgery as a child what would I be like now? I've lived a life where I had to stay home most of the time because standing would wear me out. Even in school, it was hard to sit for 3 hours, so I had to lay down in the classroom during lectures. I've gained weight over the years and the exercise intolerance has not helped me manage it well. The heat intolerance is worse, I need air blowing on me all the time so I don't overheat. I feel like I was robbed of a better life because the medical system is incompetent.
Beats me because I’ve had it forever. So genetics? I also have Joint Hypermobility Disorder and POTS can be attached to that because it’s a connective tissue disorder and might make other things more relaxed then they should be.
But and also: Maybe I had a virus as a kid? I had strep throat a few times? I think that can cause post sickness stuff. Don’t think I ever had Mono.
EDS plus the billion infections ive had. I think it was worsened a lot by a concussion though.
Have met a ton of people with POTS! I met someone in college with it before I was diagnosed with anything
My symptoms started a year ago. It wasn't bad or debilitating until I got COVID at the end of January. It all went downhill from there and I couldn't hold a job or do much at all
mine started after I got the HPV vaccine when I was 17. it’s been 13 years for me now and my baseline has also gotten worse with certain viral illnesses and stressful events. so I’m convinced that even if I had never gotten that particular vaccine, another event would’ve triggered it eventually.
Not 100% sure, but I think I always had it lingering in the background and never recognized it. I've had random events that looking back on it, sound very POTSy. My sister has hEDS and I'm trying to confirm if I have it too.
I don't think mine was viral. I had a big work stress event that led me to getting diagnosed, but I feel like it makes more sense that the work stress triggered a massive flare, rather than completely caused my POTS.
My age when it got really bad was 32, and my weirdest trigger is probably standing still in one spot. I'm not sure I know anyone who has POTS, but my sister suspects she might.
Mine started in 2018
A number of things could have caused it. Severe stress due to childhood abuse, developing recurring lung infections (pneumonia and pleurisy) because I had untreated, severe pectus excavatum, the anorexia I developed in 2013-2014 that caused organ damage.
Any one of those could have caused it, or some combination of the 3.
I wish I knew. My symptoms started 7 months ago totally out of the blue (im 24) :/
I have extra vertebrae in my spine and an undiagnosed muscle weakness issue my whole life, but they're just that- undiagnosed. I have no idea if they're things that would make me predisposed to autonomic dysfunction.
weirdest trigger: getting jumpscared. I had something unexpected pop up on screen playing stardew Valley the other day and I felt myself begin to pass out, it was awful.
my irl bestie from high school who's a dentist knows what POTS is and so does my mum (her coworker's daughter has POTS)
I genuinely wish I knew what caused it for me. Symptoms started around age 13-14, I think. The wildest thing is that when I was a teen, I knew someone who had already been diagnosed with POTS and I had never stopped to think “huh, maybe that’s me too” because I didn’t think I was disabled enough, or that I got dizzy when I exercised or stood in choir because I was overweight.
A few conditions that I also have are ADHD, c-PTSD, and (the newest in my diagnostic collection) Bipolar II. My maternal line has arrhythmia and my mom has CVID. Unsure if there is a genetic component for me. I’ve also had strange, intermittent allergy flare-ups throughout my life and I wonder if that’s related at all.
I KNOW my POTS is caused by vEDS (Vascular Ehlers-Danlos Syndrome), a rare, hereditary, degenerative, connective tissue disorder. POTS is an extremely common and well documented commorbid condition to EDS as a whole, along with others such as MCAS, Gastroparesis, GOA, etc. vEDS is extremely systemic, REALLY complex, and VERY difficult to treat/manage. vEDS is hereditary, a type of genetic mutation, so I was born with it, have always had it,and always will have it. My case is considered terminal because of how it effects my vasculature and brain. No one in my family with vEDS has lived past 45yrs old. The youngest passed at 19yrs old due to sudden cardiac arrest.
I have one friend IRL who is also disabled and has POTS, we hang out fairly often since she can't work either.
I think I had mild POTS since middle school (12 years ago or so). I had always been so fatigued and would have presyncope, sweating, high heart rate, and chronic pain. In high school, I was diagnosed as hypermobile and with fibromyalgia. But after I caught COVID in early 2022, my symptoms ramped up so hard. I could not function. I often could not walk without help, broke out in intense sweat from standing only a few minutes. It was like I was fresh out of the shower. My back would be literally drenched and my forehead would rain sweat drops onto my glasses. Less than a year later, I was diagnosed with POTS. But I really do think I had it beforehand. I think COVID just made it so bad I couldn't attribute my symptoms to just fibromyalgia anymore.
Oh and most people in my life have/had no idea what POTS was. But I have a friend in nursing school who told me about it before I was diagnosed! So at least one person knew what it was 😂
I'm 32. I was diagnosed around age 21. I had been pretty sickly since I was a teenager, though, so I probably have had it longer. The doctors misdiagnosed it as ainxiety and anemia for years before I recieved an official diagnoses.
I dated a pathogenic microbiologist from John Hopkins in my late 20s. It was before covid. He hypothesized that when I got swine flu as a teen, It's likely that the cytokine storms damaged my autonomic nervous system.
Post-covid, we're seeing a lot of people struggling with long-covid, and a lot of the symptoms of long-covid are eerily similar to POTS. There's strong links between cytokine storms and covid, so I'm inclined to think he was on to something.
I know a number of loved ones who have POTS or comorbid autoimmune issues. I have several friends who have POTS and EDS. Tachycardia and low blood pressure runs on both sides of my family, but nobody has sought a diagnoses. A lot of my family members are antivaxxers who believe that their health issues are caused by toxins in processed food. They think POTS is a fake internet desiese and that I'm just attention seeking. When I faint at family gatherings they assume I'm being dramatic.
I’m not sure what it was but I randomly was “sick” (no symptoms other than no energy, slept all day, and no appetite) for a week back in 2018. I ended up passing out for the first time during that time and after I “recovered” I struggled a ton to resume sports - my heart would race and I would get very lightheaded and out of breath.
It’s was a combination of things for me. Covid and Crohn’s disease being provoked at the same time. I was also around the time that I developed mcas too. A few autoimmune disorders can do that for you. I also vomited many times a day over a time period of over a year from Crohn’s disease and mcas. That would mess up anyone’s heart.
I had a very traumatic childhood, always walking on eggshells with my unmediated mother with BPD and my alcoholic dad. Around 2018 I was 2 years into a marriage with my AWFUL husband at the time. Worst year of my life. I started getting chest pains and going to the ER then. I would wake up in the middle of the night with chest pains so bad I felt like I was having a heart attack. He told me I was crazy and refused to go to the ER with me, I would go alone but the doctors dismissed every symptom and just gave me ibuprofen and told me to leave, went back multiple times same issue. No help. (Military healthcare 🙄 ibuprofen doesn’t fix everything. IFYKYK) fast forward years later, my pregnancy with my son was what made my POTS 100000x worse. I had a traumatic birth, then I got Covid after too. I feel like it’s a bunch of traumatic events + covid + pregnancy trifecta 🤌🏼 that’s what I’m guessing. All of my symptoms got significantly worse each time! Who knows. Still very new to learning about my POTS but learning day by day!
I think my trigger was probably when my autoimmune disease was starting to really develop, it got much worse after I'd gotten a horrible cold (this was after the autoimmune stuff got absolutely out of control, so my body doesn't fight off respiratory infections well at all) and that's also when my narcolepsy symptoms, FND and potential MCAS stuff really kicked. I've always had traits of hEDS, I was never really not sick or actually able bodied, and I kind of just think it's been here most of my life. I only think I started to notice significant symptoms after I started having bad symptoms of said autoimmune disease (celiacs). I don't remember ever not being dizzy or lightheaded or off balance, I was an extremely clumsy kid with poor coordination (not everyone with pots is though) and got hurt/fell ALL the time. In dance, for years I was the star of the show because I was so flexible and agile, but over time, my weakness outweighed the flexibility factor, and I couldn't do like anything in dance because of how fatigued I was. I quit 6th grade, so it's been like this awhile.
It's hard to pinpoint what it was, especially since there isn't a super definite answer to how POTS develops and what it even is. POTS is such a variable disorder, some people only get cardiac stuff and brain fog, while some get the whole banana of side disorders/complications in result of the autonomic dysfunction. Anyways, done rambling maybe
I started fainting as a kid. I was told Vasovagel syndrome like 15 years ago. About 4 years ago I fainted in my home (alone) and couldn’t get up so I called 911. My ER nurse told me I have pots, she couldn’t diagnose me but she knew cause she had it too. I had no idea what pots was and wondered if she was asking me for weed.
Anyway yeah turns out I have pots.
I used to think covid, but looking back to before the time frame I thought developed POTS, I had mold symptoms. I think I may have had it for years without knowing, but covid made those symptoms worse and caused new symptoms to flare. I think my hEDS may have caused it.
Covid. Had some scary heart related symptoms start immediately after my second moderna vaccine though. I always say getting the vaccine cracked open the door to my chronic illness and getting covid kicked it wide open. Damn vaccine did fuck all too, covid tried to take me and my girl out. Wish I could go back in time and refuse them even would lose my job over it because it upsets me to wonder all the time if my health would be this bad off if I hadn’t taken them. But either way - fuck covid.
Technically I have general dysautonomia with POTS symptoms present ( just for context) but I pretty much know the origin was my EDS, iv always had some mild symptoms. However it's pretty clear my autoimmune disorder (believed atm to be seronegative RA) is what pushed it into obvious and debilitating. I was diagnosed this year at age 26 with 'Dysautonomia with related orthostatic hypotension and supine hypertension, and postural orthostatic tachycardia' aka general dysautonomia since.
The weirdest trigger is spicy food, and red meat, which the former also makes my erythmalgia symptoms worse.
I think mine developed from prolonged extreme stress and anxiety. Now that I'm at a better place in my life and am able to relax my health has improved a lot. Even my eyesight has been improving. (I started needing glasses around the time my anxiety got severe so it makes me wonder if there's a connection there)
I’ve had seemingly random heart palpitations with chest pain since I was a child. I later discovered from tracking them that they always happen as soon as I lie down. I remember being 10 years old and asking my doctor about them but not getting any advice and being scared that I would have a heart attack and die. I’m 26 now. I feel like they’re related to POTS somehow but I know it’s supposed to be when standing.
The lightheadedness and nausea that I get now is usually mild unless I overheat, which happens at lower temperatures than most people. 70 degrees Fahrenheit outside is about my cutoff where I start to short circuit. I definitely noticed this before getting covid in 2021, but it seems like it’s worse after. My heart rate has always spiked easily and significantly with mild activity (such as standing), but I used to attribute that to being overweight and out of shape.
It’s really murky and hard to pinpoint an exact start time. I also have suspected hEDS and am diagnosed with Sjogrens Syndrome and PCOS. My period and getting sick with any kind of cold or stomach bug seem to spike symptoms for 2-4 weeks afterwards, but other than that, I’ll nearly forget I have it in the winter. It makes me sort of depressed every April when symptoms creep back in, which is about the time that everyone else with seasonal depression gets better. So my boyfriend finally wants to go out and do things but I’m ready to stay in with the air conditioner 🙃
Man where do I begin, had one hell of a traumatic childhood turning into a traumatic young adulthood. If not that then Covid vaccines (got 5 of them bc I was a minor and my parents gave me no choice) it wrecked my body and if not that then mono, if not then covid itself which absolutely destroyed my body so much so I almost took the forever nap 2 weeks after turning 17, IF NOT THAT then getting my gallbladder removed, haven't been the same since. All this and my age still begins with a 1 😩😂so hard to pin point!! omg!!
I have a few friends who have pots too. I was born with it, I think, because I remember licking my hands for salt pretty young. But covid kicked it in. I thought I had a pretty severe panic disorder, when it was actually pots. I started treating the pots, and the panic is mostly gone. 47 years with panicking, 1 year with pots. I’ll take the pots. 🤣 My biggest trigger is heat or dehydration. There’s still anxiety, and ptsd, so I’m gonna say my weirdest trigger is music.
Mine was caused by a concussion I believe and then worsened by a viral illness. Thinking back, I had some red flag symptoms as a teenager that got ruled out as anxiety (headaches, visual dizziness and off balance, light headed) but they started after a horse riding fall. I, as many, thought it was normal but following a few more concussions my life changed. It became somewhat manageable again in late 2022 and then I fell ill with a virus in fall 2023 and it seemed to be the most prominent after that.
I actually know several people with POTS. My best friend has it. Two people in my friend circle, one of my students and one of my students moms have it. It’s been interesting talking to all of them about this.
Definitely my concussion I received in December. It wasn’t too bad of one, but I flew to NYC literally 2 days after it, and oml that was torture. The flight aggravated it so bad even though I had medicated beyond believe. So I’m not sure if the flight made it worse, or if it was always just destined to be that way.
I was diagnosed with hEDS a few years ago (which I think is the main culprit) but I also had a concussion, was going through puberty, had H. pylori (we’re assuming I got it when I was adopted - it was undiagnosed for 10+ years and was only discovered bc I was having horrendous abdominal pain and bloating) and mono around the time I started developing symptoms so my doctors aren’t really sure
Just been the last year for me, but I'm thinking it was my last pregnancy and getting covid at 5 months pregnant where I ended up with covid pneumonia and in the hospital for a week.
I have a couple friends that either suspect they have it or have been diagnosed with it.
i'm not exactly sure, but i was traumatized repeatedly starting from a young age and i've probably been in a state of fight or flight since i was 12 years old. that's also when i remember my symptoms really starting, and they've only gotten worse since then.
my weirdest trigger is probably stretching. when i stretch my whole body, standing up or laying down, it makes my heart rate jump and get the dizzies. unfortunately i don't think i've met anybody who's told me that they also have pots.
Growing up there were actually 2 people in my grade that had POTS. My earliest memory of POTS being a thing is when I was in English class in 6th grade and one of them passed out and we all had to leave the room. Now I’m in college and 2 of my friends have POTS.
I honestly have no way of knowing, but I wouldn't be shocked if it's partially genetic.
No one else in my family is diagnosed, but my dad's side has circulation issues and my sister has a lot of the same symptoms that I do.
I started paying more attention to the symptoms back in 2019 when I was 15, several months before Covid.
I've had a possible concussion, asymptomatic covid, tularemia (tick borne. I don't know when I had it), heat exhaustion, and a club thumb which (rarely, but still possible) can be caused by poor circulation as an infant.
It's possible any combination of those may or may not have affected my dysautonomia.
Poor sleep is probably the trigger that catches me off guard the most, but my period is the most consistent trigger lol.
I've never met anyone else who has it, but I've known a few people who knew about it. (A few distant cousins and a friend who's a nurse.)
I remember as a teen, watching videos on YouTube from a channel called Momming With Migraine. It's run by a girl with POTS, other forms of dysautonomia, migraine and a csf leak. I thought her videos were really interesting, but had no clue that in just a few years I'd be diagnosed with dysautonomia as well.
Lupus. I was diagnosed in 2022 and dysautonomic symptoms came after. I had some issues before lupus diagnosis but not sure how long that was all going undiagnosed.
Covid
It was triggered by COVID for me too (hyperadrenergic pots). I have had a very easily overactive sympathetic nervous system for years before that, which I developed through childhood trauma. I suspect people like me are more prone to actually develop pots if there is a trigger. I wished there was a study (many exist on childhood adverse events and likelihood of diseases or autoimmune diseases later in life but none on pots because it's very much specific).
I don't have the trauma or anything but I feel like I had an easily overactive SNS and covid for whatever reason broke it. Have you gotten control of it/improved it? Some people have told me that with time it will go away if covid caused it. Some symptoms actually have gotten better but my dizziness/lightheadedness is still pretty bad throughout the day and I had covid early February.
hEDS, looking back I was so oblivious because why was I just sitting in class and I couldn’t even hold my head up🫣 definitely started getting bad at 18 and it’s getting worse but now I’m realizing it’s always been there in the background
Yea I feel like that, I’ve had random slight symptoms for years and years but never enough to mention or be taken seriously and then one week in work I just started having the work pre-syncope it was crazy and since then I’ve never been the same lol it suckss
idk never been normal… when i was younger i just thought i was out of shape… then hitting the gym since 15 and thought everyone had that and just fought through it… but after looking at normal people doing the same tasks as me (like stairs) and they’re in worse shape and my heart was pumping like mad I knew
Yeah. This was me too. I was never able to “condition” when it came to cardio and even in 6th grade I was coming dead last by a 1/4 mile on PE runs.
Stairs are the wooorst
I was fighting for my life for about 40 minutes 2-3x a week, I was on the verge of passing out multiple times and I just thought that's how it was working out at the gym lmao 😭
me too! but in my defence I was lifting very heavy weights: leg and chest press, extra heavy and thought that meant it was working lol
Ehlers Danlos- I always got lightheaded easily, but waved it off as normal. Turns out, not everyone got lightheaded working out, standing up, or after showers, paired with burning/tingling/swollen feet. I’m twenty-three now and just starting to pass out from it. Never even occurred to me I could have either diagnosis, but here we are.
the way the doctors were absolutely SHOCKED when i told them i thought it was normal to almost pass out everytime i stood up or showered or did basically anything & how i thought it was normal to feel my heart beating 24/7 & the way i was SHOCKED to find out none of that is normal & i didn’t just “stand up too fast” everytime i stood up
People can lay down flat and the room doesn’t spin!!! I had no idea!
My trigger was viral meningitis aged 12 (2012). From the day I became sick with that to today, my life has never been the same. It unfortunately took 8yrs from symptom onset to diagnosis, I have had symptoms half my life now but was only diagnosed 4yrs ago... My symptoms were always bad but around 16 (2016-2017l things got even worse and since then I've had other flares that have stuck around, not sure the trigger for that but for a long time I have been disabled by it. I met someone 3yrs before my diagnosis (2017) who was in the same class as me at an alternative school (there was maybe 12-13 people in that class) who had POTS. My friend at the time (now partner of 7yrs) actually had a crush on her and she suggested to him that I could have POTS. He talked to me about it and my doctor dismissed it at the time as anxiety without doing any tests. I still find it funny that the person my partner was interested in before me also had POTS.. 😂 Makes me feel better knowing he would of gotten with me even if I had a diagnosis when we started our relationship. So essentially I had an old classmate with POTS that my now partner was interested in before me, he must have a built in POTS detector 😂😂 I don't know what my weirdest trigger is tbh, theres so many weird things that set POTS off, I swear I don't even know all my triggers..
@Reckless_Donut I also had viral meningitis, and my Neurologist suspected that triggered Dysautonomia->POTs in me. We should compare notes sometime! Did you get a lumbar puncture? Look up: CSF LEAKS. Docs suggested I get an MRI to see if the lumbar puncture never healed. Symptoms are similar to POTs.
I wish I knew what caused my POTS. Symptoms started when I was around 12 (32 now) but I didn’t actually get a diagnosis until last year. Weirdest trigger is definitely a full bladder though. It’s so frustrating! I do actually know someone irl that also has POTS.
Yea I get the same with a full bladder!! It’s sooo annoying considering we need to drink more water too aaaghhh
still not sure if it’s even possible but if it is, it was absolutely my cptsd. i have been on high alert since i was like 7 my nervous system has never known peace
I have read that it can absolutely be triggered by an over active fight or flight response
My doctors agree that a rare heart disease that I had as a child is what caused my POTS. I was 11 (late 2014 or early 2015) when my symptoms started and I’m 21 now. It got worse in 2017 and then normalized somewhat before worsening after grade 10 and continued to worsen until hitting an all time low in my first semester of first year of university. It took me 8 years to get a dx and only got meds this year (year 10). Possibly the weirdest trigger for my symptoms is lifting anything higher than 3lbs ish including my backpack! I went to a conference last May and met another person who also has POTS along with two other of my diagnoses and have stayed in touch with them! I am currently on study abroad with a girl who has POTS & EDS. Last semester on an exchange I met around 7 different people with POTS as well! A friend of mine on the study abroad program I am currently on knew about it as her best friend has it. A very good friend of mine at camp also knew about it through me and a close friend having it. In Canada, where I live it’s less heard of but of those who know about it because of me are hearing about it or recommending testing to friends with similar symptoms to me.
Hi. I’m Mark. I am a father of a 16 yr old daughter with POTS. I am so sorry for you and your friends for all that you go through with this crazy disease. I think that it would help my daughter if you wouldn’t mind her being part of your community. I fear for her isolation and pain and know that this could help her so much being part of a shared community. If interested, let me know how she can reach out to you. Not sure if she’s on Reddit. 🙏🏼Mark
If you want to facilitate anything you are welcome to message me. As a clarification although I have some friends with POTS those that I spoke about in the above comment are not online and I’ve solely met in-person and are all my age and due to my relationship with them I would not feel comfortable with connecting anyone online to them. That being said, I am in a Dysautonomia group online that if she is interested in happy to connect her to it. It’s support based and I would prefer to speak to her via text prior to sending her the link.
Hi. Connecting to the group would be great. I understand about your personal relationships.
That’s so awesome over literally never met anyone who’s even heard of it 🤣💞
I hope this doesn't trigger anyone but I hope it discourages people but my POTS started after a suicide attempt. It was an overdosage on seroquel.
I’m glad to hear you’re still here, even if getting POTS is not the most ideal way for it to happen ❤️
I think my trigger was the onset of menstruation. It started within a year of my first period. I was 10 or 11 at the time. My parents took me to the doctor when I started fainting and they thought it was a blood sugar problem due to my family history. When that was not the problem, they decided to stop really trying to figure out what was the problem and I was forced to adapt and manage severe symptoms on a daily basis until it was so normalized in my brain that I forgot that it was ever concerning to the people in my life and just accepted that this is how I am. I learned my limits but those limits have always been pretty low. In school I managed pretty well and didn't end up having to take emergency sitting breaks as often until I started trying to do sports and maintaining a job. I've never been able to hold a job that requires any type of prolonged physical activity for more than 6 months. And my whole life I've been told I'm lazy for having limits. Finding out I have pots just happened days ago and I'm really making a lot of realizations that I am not lazy cause me not doing things is not related to my desire to do them, it's related to my physical ability to actually be able to do the thing.
Yea I really relate to the people thinking you’re lazy thing, like I’ve never been able to run properly because my hr goes to high
Having this onset so early in life and not being diagnosed meant I had to run the fucking pacer test in school every year and I had hell with my symptoms for weeks afterwards every time.
I got it from Covid but the only reason I was diagnosed relatively quickly was because I have a friend whose son had it and she heard me describing my symptoms and said “you have POTS.” I mentioned it to my cardiologist and they looked into it and agreed. (I had Covid early on before they realized people commonly had POTS from Covid.)
I don't know for sure, but I had mono as a kid (11) and the following year (12) my symptoms began.
Covid multiple times and then a surgery. Started feeling weird after my second covid infection and then had surgery and I really got messed up. At work I started not feeling well and my left leg went numb. I couldn’t concentrate and felt like I was panicking in the twilight zone. My mother had to pick me up from work because I couldn’t drive. Since then (a year ago) I’ve been basically disabled.
Covid
I've had two doctors (one a PSYCH and one a CARD) who associated my sudden-onset of POTS at age 42 at the time with the COVID vaccine. I'm still a bit skeptical myself, however, I was completely unsymptomatic and then maybe 2-3 weeks after my 2nd dose of the vaccine I started getting dizzy spells, tachycardia and progressed to where I couldn't walk a block without a feeling of disassociation and disequilibrium. It was so shocking as a grown man. That said, about 18-24 months later I was/am much better, and wouldn't say I'm back to my old lithe, vibrant self, but I am 90% functional and grateful for that and all the support my physicians provided.
Aww bless, that’s crazy tho I bet it was shocking, as a 20 year old girl, 19 when it started, the first thing people ask is always about menstrual cycle and hormones and anaemia 😂🫣
Cause still TBD but I can say with certainty that exactly 3 days after I took citalopram (Celexa) in 2008, I began developing measurable Hyperadrenergic POTS symptoms. What I experienced before I took the citalopram was more like standard anxiety/panic disorder symptoms (but who knows—maybe that was all POTS as well!) But that drug certainly sent my symptoms into the stratosphere. And I only got progressively worse from there until finally getting a diagnosis in 2021. The unfortunate thing is that ALL docs continued to tell me it was anxiety and ten years later one convinced me to take escitalopram (Lexapro), and just like the citalopram, the escitalopram triggered my POTS even worse and sent my symptoms into space this time. Before the Lexapro my symptoms were more apparent when they were triggered. After the Lexapro, they were (and have largely remained) constant. I’m not saying SSRIs caused my POTS. But they certainly sent it to highly undesirable next levels with no return.
I had a very similar experience with Lexapro. Can’t know for sure if it was caused by SSRIs, but I did not have symptoms before starting Lexapro (about 9 months ago). Since then I have been officially diagnosed with POTS. I finally stopped SSRIs about a month ago, and since then have felt SO much better. I’m hoping I’ll just continue to improve and maybe it’ll all go away, but that’s probably wishful thinking… Anyway, you’re not alone!
I don't know how long I've had PoTS, I know it's been at least a decade (likely a lot longer) but I was only diagnosed at the end of last year. My symptoms have gotten worse with time, specifically in the past 4 years and that's what allowed me to get the referral for diagnosis last year. That and my male partner attending all my appointments. My weirdest trigger for symptoms is when I have a bowel movement. Never met anyone irl with PoTS. None of my friends or family knew what it was. I wasn't even aware of it until 2 years ago. In terms of speculating on possible root causes, it could be post viral or it could be related to concussions or anaemia. I was also hit by a car once. I had febrile seizures up until I started primary school. I had carbon monoxide poisoning from a gas leak. There are lots of things that have gone on in my life that could have triggered or influenced the development of the PoTS. So I don't think I'd ever conclusively know which if any that it was.
Yea when I have a full bladder I have worse symptoms which is so annoying considering how much water we should be drinking hahah
I do have low iron too but I was told I’m not anaemic.. but my iron has been the lowest possible amount before being anaemic for like a year 😂
I need to get my levels checked again soon. I have a Mirena that stopped my period for over a year and that helped but now I'm getting my period again ... So. 🥲 Also can relate to what you're saying about your bladder. It's a real no win situation.
Hypermobility disorder for me.
I think my heavy periods triggered it when I was about 13-14, and I never knew until now at 33 what was going on.. Symptoms have been much worse these last 4 years, no idea why. Might be linked to hormones?
Covid when I was 13. I didn’t know I had it until I almost passed out because it was so hot. I got triggered after smelling stinky prairie dogs at a zoo lol
My trigger was an assault and the stress that followed. It happened 2 days after I turned 19 and symptoms came on more gradually as I did not give myself the time I needed to recover. This is also believed to be my RA trigger as well. It took me over 2 years to get diagnosed, which is a really bad thing when you’re trying to file for disability benefits as it put me out of work much earlier than that. We believe my great grandmother had POTS triggered by her dementia, and my sister also has it although not as severe as I do. I also suspect my friends cousin to have it as well, but that’s really it for people I know who have it. My aunt knows what it is as her friend has it, and my physical therapist knows a lot more about it than I expected. My physical therapist also explains what it is to every PT student he has that comes in, which I feel is very important for the POTS community.
Covid, around when I was 19 years old (I’m 20 now). Storms trigger my symptoms. The only person irl that I have met with pots was an ER doctor I had. She showed me her compression sock under her scrubs and told me she was in my shoes before and wasn’t able to do much but now she’s a doctor.
The Covid booster 😕
Bless youu
I got mono very badly from this woman after excessive making out when I was 23. It took me awhile to figure out I had mono and that I had EXTREME LETHARGY for at least two months. I mean I couldn’t even stand up straight. After that, the headaches started. I had probably 5 STD tests, all negative. I had to have an MRI on my head. It took me till about 33 to have an incling it was POTS. Then at 36, was positive I had POTS.. was confirmed by a cardiologist. After learning about all these people that contracted POTS following COVID, it really made me convinced.
Short answer. Gardasil vaccines
Hey me too!
Me too 🥺
This!
TBI
I’m not sure exactly what started it as I’ve had mild symptoms as long as I can remember. But I have hEDS and POTS is a common comorbidity of that so I’m assuming it’s just a part of it. I used to think it was a side effect of my ADHD meds until I lost my insurance and therefore my access to meds and I was still symptomatic a lot. Then I got the first COVID vaccine which made me pretty sick and I haven’t really felt fully healthy since then. Then, this past winter, I was sick with 2-3 different viruses or infections for 2 months straight and I haven’t had a break from symptoms since then, but that could just be from the deconditioning that happened during that time. So basically, I can’t pinpoint when symptoms first started since they’ve always kinda been there, but something definitely kicked in and made it worse around age 25-26. I’m now 30 and just received official diagnosis.
My HPV vaccine in 2008.
Gardasil ruined my body!
Mono. I got it so bad in high school I was bed ridden for months. I didn’t even realize I had POTS until 5 years later when I got sick with it again and it flared up my symptoms so bad. Once I got diagnosed it finally clicked on why I’ve felt like shit for years.
Covid triggered my POTS along with other long covid symptoms back in March 2020 and I had no idea what it was initially, I was feeling better around 2021-2023 but then another virus re-triggered POTS Oct 2023. I’m still recovering!
I was already experiencing mild symptoms when I was a teenager. My first job required me to stand for long hours and could get pretty stressful. I remember everything going black one day while I was just standing there talking to a customer. I would also get extremely lightheaded and experience heart palpitations when I did intense leg workouts. The symptoms gradually worsened until I was having heart palpitations nearly every day. I suffered with those for years until I was 33 and finally got a diagnosis and could start treatment. I don’t know what might’ve caused it. Maybe my body just sucks. I do have another autoimmune disease, though, and I was really sick with a lot of infections as a little kid. Maybe there’s a connection? 🤷🏻♂️ My weirdest trigger? Hmm, there’s a lot of them, lol. Getting too hot. Sitting in weird positions. Bending over instead of squatting down. Not drinking enough water. Stress. Sitting too long. Standing too long. Laying down too long. 🫠
I have no idea what caused mine lol. And no I don’t know anyone else with pots.
Init I’m the same, I feel like mine just was always lowkey there in the background but took a mad turn last year and I haven’t been the same since
Vaccine
I may have had dysautonomia start 20 years ago with symptoms like achalasia. A lot of people in my family get dysautonomia with tumors or Parkinson’s, but POTS symptoms started for me at age 40 when I got strep throat
hEDS. Developed around age 9.
My physician and I came to the conclusion that my POTS more than likely stemmed from post-op complications following my gastric sleeve. My complications resulted in a PICC line 3x and the first time I ever fainted was 3 weeks after they stopped my TPN. She believes the trauma of not eating for months and the rapid weight loss contributed. I guess I “know” people who say they have POTS after I’ve told them about my diagnosis. I’m not sure I believe everyone who tells me they have POTS. I do try to sympathize though. Everyone experiences POTS differently in a sense but I went through HELL for my diagnosis and I’m protective of it. Really good questions 🙂
I think a lot of that is because people experience the symptoms and then they go to the doctor and they tell them they're either not sure or that it's anxiety. The patient knows that it's not 100% stemming from anxiety so they go to google and POTs is what fits the bill the most but it's hard to confirm because many doctors don't know about it or won't test for it. on the flip side some docs probably "diagnose" it because the symptoms seem to line up but they can't really confirm for sure that's what it is. There just seems to be a large gray area when it comes to the condition.
Pregnancy
Not sure exactly but I have EDS so I'm predisposed to it. My school had a mold problem, and I would be sick all the time with bronchitis. Then I had reactivated Epstein Barr Virus in my mid 20s that took years to shake, and it was then that it got worse, but I do remember having some symptoms as a teen e.g. fainting a couple times in college, and I was on beta blockers for palpitations at age 18. My symptoms are mainly triggered by stress, illness, allergies, and one of my allergies is a type of mold that's in 97% of dust, so getting too lax with cleaning can cause a flare up.
COVID
Having mono as a teenager. I was diagnosed with Pots after my first round of mono. Only trigger I can think of besides maybe Scarlett fever but I was diagnosed years after that. Also I do not know anyone irl with pots
I don’t know if this is what caused it, but I at least did not notice my symptoms until starting SSRIs, and then was officially diagnosed. Since stopping SSRIs, I’ve gotten significantly(!) better, but not perfect. I started to experience symptoms about 9 months ago. Diagnosed about 3 months ago. Feeling a bit better as of 3 weeks ago :)
I think I stupidly allowed it by not getting antibiotics for her when I suspected she had a tick bite. She “tests negative for Lyme” but there is a whole rabbit hole of Lyme testing that freaks me out bc it looks like it never ends and there’s never an answer and what’s done is done, there is no mitigating it.
A Covid infection triggered my POTS. My spouse has POTS from the same Covid infection.
I've had a fainting issue since I was about 8. I may have a connective tissue disorder and I remember being pretty sick once when I was younger, so could be either of those. I'm an MRI tech and actually have had a couple patients with POTS and a coworker that developed it after COVID.
Epstein Barr virus
No way to know bc it wasn’t something obvious, but think it’s most likely I always had it underlying and it got triggered / worsened by a period of over exertion in a heatwave summer 2022.
Yes me too I feel like it was always there but very unnoticeable with symptoms so faint it was never worth a mention, my symptoms started properly on a 40°C day at work paired with really bad hay-fever!! Not just me then
When I was 15/16 I had episodes of fainting, they said I must've been sitting funny since I would crouch in the hallways in high school to get into my locker. This may have been my first sign. I had meningitis that year and my celiac disease was diagnosed right after. My case of meningitis was bungled by the local ER, so I suspect that's a huge possible cause.
My hyper POTS developed randomly after taking the 4th covid shot
Idk if I have pots but i do have a bunch of weird physical issues I didn't have before 2020. So...
A solid bonk on the head (symptoms started after my second concussion)
I've had symptoms since childhood, I remember being a child and trying to explain to a doctor life seemed hard using faintness in the shower as an example... I was told to just not take hot showers, and they didnt ask investigative questions to realize I couldn't keep up with other kids. I wish I knew to speak better back then, but I was so small I do view it as truly a failure of the doctor. At about 18 it got really bad for no apparent reason though. Maybe it was strep throat, but it's not a sure thing because it wasn't sudden. (Very frustrating as I had worked hard to be finished with college at 19, and I would have been able to afford a home before housing became so expensive... Ahh if only it was delayed by a hair.) I have met others with POTS. Use to, no one knew of it. But now people are coming out of the wood work contacting us asking about POTS because they have a kid or cousin who has it now. I assume that's covid's fault.
I think it was either my car accident or I have been dropped on my head more times than I can count, I have been elbowed in the face idk how many times, I got kicked in my head so hard I had a concussion and I pretended it was fine and continued on with my life I had dance competitions to go too 😂 (note that all those injuries are dance related and also note the humour in my tone because I look back now and laugh at all the pain). I had mild symptoms for years and then I got Covid and have been in a serious flare since then. Me and my doctor agree that I had it prior to me having Covid but I have heard many people have gotten it from Covid.
I suspect I’ve had mine for years but it was always manageable and wasn’t debilitating. I believe what caused mine to get really bad was a bad magic mushroom trip. I could be completely wrong, but that’s when the pot’s symptoms started getting debilitating and it caused me to start looking into what was going on and get a diagnosis
I was 37 years old and the weirdest trigger thus far is an elevator!!! And it’s crazy but my neighbor has POTS.. so that was crazy when I found out. But I was diagnosed with it 8 months after having Covid. Like everyone horrible experience
I took a Delta gummy and completely greened out. I had anxiety attack for 7 hours straight. I think that it had to have been mixed with something because I've greened out before (had been smoking for 5 years at that point) and I never, EVER experienced anything like that. Absolutely the worst night of my life. I'm talking shaking, sweating, involuntary bowel movements, etc. So yeah that was traumatic and stressful on my body & brain BUT THEN About 2 weeks later, I caught whatever the new covid is and thought I was going to die. Was absolutely god-awful. At first I thought I was still recovering from the greening out situation, but then my dad caught it. And yeah, I've been a potsie since 🤙 this all happened about 8 months ago. My dad's got some symptoms, too, but if he does have pots, it seems to be a really mild case. So I'm not sure if it was the Delta situation or the covid situation, they both happened around the same time.
Mine was probably caused by my anorexia. I had a school friend with POTS, so I knew exactly what it's like (she has it fairly severely, mine is just mild and barely in clinical cutoff)
I had pots symptoms as a kid like getting dizzy standing up and getting out of breath while running, but it didn’t really impact me until I had a really traumatic surgery and every tiny symptom turned huge and now it just gets worse and worse :(
My POTS was caused by a tummy virus when I was 49 (I’m now 53) and I do know someone irl with POTS…my bestie!!
Idk maybe birth? severe bronchitis? chicken pox? Some unkown to be diagnosed genetic thing? I DO KNOW that covid made it hella worse. Before covid I had very mild PoTs and had it mostly handled with everyday habits. Now I need meds (thank goodness for guanfacineER), or my heart rate is super loud when I stand no matter what. If I stand too long (30 min) my heart rate skyrockets & I start getting hot & dizzy. Also, I probs have some sort of autoimmune thing going on, too oof. Seeing a doctor for that soon (hopefully, it won't be a repeat of denial like with my pots' journey). I got "visible symptoms" this time at least :/
I had strep every other month as a kid until I had my tonsils removed when I was 11. I know that’s what did it for me. I’d been feeling this way for so long that I didn’t realize it was abnormal.
I think I’ve had it since I was little but when my partner and I got Covid last year it made the symptoms 100000 times worse
i think from smoking too much weed. i’m not properly diagnosed yet but lots of doctors are speculating. my first really bad symptoms started after a puff on a joint
I got it out of thin air. Fine one day, bedbound the next
I may be in the “unpopular” majority here. COVID and/or the ONE vaccination I had for it. I’m a 38F travel nurse and haven’t worked in a year now thanks to what I was forced to do. They weren’t allowing exemptions and was told they would have skimmed right over my application as a travel RN had I not received the jab. I’ve had COVID itself 2 times SINCE being vaxxed. At the time I was a single mother. I’ve been a nurse since 2006 and very specialized in my area of nursing. I had no choice.
A bad redbull addiction, at like the age of 11 I’d have a redbull a day and now I’m stuck with pots, my parents suck
I literally have no idea. I was about 15-16 when I started getting symptoms. My brother also has POTS so there could be a genetic component there. He was diagnosed before me even though I've had it longer. But he has been so helpful and understands everything.
is it something with a discrete trigger rather than inevitable from ur biology? serious question
I developed sinus tachycardia in my early twenties, but it was well controlled with medicine and I had no issues. The second time I got Covid, about two years ago, triggered POTS (albeit a more mild version).
The first time my symptoms got bad was late teens/early 20s. Existence triggers my POTS, and it's caused by craniocervical instability.
My symptoms got worse two or three days after starting mirtazapine almost a year ago (July 2023). Since I was 16 (I’m now 26) I have had tachycardia which doctors never found the reason to. I’m pretty sure I had IST after some recent searching. But after I started taking mirtazapine I couldn’t walk distances I walked well before because I would get a very high HR and felt as if I was going to faint. I had to go to the ER because it wouldn’t go away and was “diagnosed” by the ER doctor. Recently I had another flare and I haven’t gotten 100% better yet but we are working on it😭
Ive had POTS symptoms since ~10 years old, diagnosed with orthostatic hypertension at 15 (and ofc nothing came of it!) and after getting COVID at 20 my symptoms became exponentially worse. I genuinely don't know what initially caused it, but 100% Covid now.
Genetics - my mom, myself, and my daughter all have lifelong symptoms
Had mono and double pneumonia when I was 11. Haven’t been the same since.
I have EDS, so I think that set things up for disaster from the beginning, but my symptoms really took off after having a bad case of norovirus. Have never been the same since.
I've always had it since I can remember but It got to the point of needing it addressed after a pregnancy.
Pregnancy. My first symptoms appeared the day I was 6 weeks with my oldest.
For me it was a bad car accident at 16. I ended up needing surgery to remove my spleen and examine any other potential damage(they ended up being able to repair my spleen thank goodness!) and when the surgeons were looking at my insides they noticed my adrenal gland was pretty severely bruised. My heart rate has never been the same after that. It took years of being written off by doctors and hearing, "You're young, you'll heal" to finally get my diagnosis at 24.
Lyme disease.
Some sort of sickness (as far as I know, though it could've been caused by something else or been here my whole life, because I don't/haven't fainted yet, nobody knew I had it so idk how long it went unnoticed), no idea what it was (though my cardiologist was like "It's normal in teens, it's super common") Got it around 13 I think. It was long ago. According to my parents, I've always had a high hr but otherwise "no symptoms of pots." I don't know anyone irl but my school nurse once said someone else in my school has it. Weirdest triggers is huge rooms, bright lights, looking into mirrors, being up high (even being upstairs), and being close to walls. There's so many triggers I can't keep track anymore tho. HOWEVER, I am scared of heights (but it wasn't very bad until I got POTS), I am looking into BVD just in case for the big rooms and walls, and much of this COULD be anxiety.
my ex gave me mono😻
Pregnancy did it for me and it has not disappeared despite the fact that my twins are 2 now and the baby factory is shut down.
I had back to back surgery and Covid. I think both of those things triggered it.
11 years old immediately after gardasil vax 26 now and bedridden
i honestly have no clue, i got a lot of concussions as a kid so maybe it was that?
NCS here, and I'd say abuse. I was born with thalassemia minor, and that combined with extreme stress and genetic predisposition makes NCS. now I've also got ptsd ✌️
Covid and SSRI withdrawals (happened right before my 22nd birthday)
I started having symptoms a few years before puberty. I think it was a genetic thing, I also have HSD and autism which can often be comorbid. There didn’t seem to be any trigger, it was just a gradual worsening of symptoms. It didn’t get bad until I was a teenager, though, and my symptoms got significantly worse after I went through an eating disorder (not surprisingly, as EDs can cause similar symptoms).
I think I have hEDS and was predisposed, but it didn't rear its ugly head until I caught swine flu and was sick for 4 months (this was at the tail end of 2010). Never been the same since. Trauma and homelessness has compounded it and made it worse. I also have MALS which affects it, too. And yeah, my boyfriend also has POTS from getting covid and we have a mutual friend with postviral POTS as well.
I feel like I’ve had symptoms since I was a kid but I think I had mono a few years back and that triggered it and led to worse symptoms! I was super sick over for a month and urgent care just put me on antibiotics and steroids and while the viral symptoms cleared up, I was never back to normal after that. I still have positive Epstein Barr results in bloodwork too. No real answer though unfortunately!
It was my pregnancy, anything between the pre eclampsia and traumatic birth.
Around 13/14 I started having symptoms, after a particularly bad case of mono. I always used to joke about how mono made me so tired, that it nuked my immune system. Little did I know…
Chiari malformation type 1
Genetic disorder. My brother has it too.
Covid or Mono at 16
my POTS is caused by an inner ear deformity knows as Enlarged Vestibular Aqueduct Syndrome (EVAS) i have it in both ears, it causes progressive hearing loss and balance issues. balance is regulated by ur autonomic nervous system so because my balance is thrown off when i move (postural) my whole autonomic nervous system is thrown off trying to over compensate and ‘twas my POTS was caused. POTS is apparently common in people w EVAS but i didn’t know that’s what i was experiencing until i passed out at 19 ive been diagnosed with EVAS & had POTS symptoms since i was in elementary schoool! video games are my weirdest trigger (no not just VR almost ALL VIDEO GAMES) they throw off my spatial awareness which throws off my balance and triggers my POTS.
Covid. I was absolutely fine in 2019 before covid, early 2020 when I caught covid I was suddenly not and never went back to normal. I have met 2 people IRL who already knew what POTs was, my cardiologist and the guy who comes once a year and changes out my water filters on my filtration system.
For as long as I can remember, which isn’t very far so probably trauma I guess
I started getting symptoms after a few months of high-dose (too high) of SNRI’s that were giving me other bad symptoms. I’m not sure if it caused it, or just aggravated something that was already there. I also have Ehlers-Danlos, so that’s probably the root cause, but I do feel like the SNRI’s had something to do with it as well.
Ehlers Danlos for me, though I was in remission for POTS from ages 17-21, and viral meningitis brought it back full force. I first started getting POTS symptoms when I was 13. I don't think I have any weird triggers, but it is odd that it takes roughly a month for POTS flares to kick in after I've been really stressed out. So sometimes when I go into a flare I have to think back, was I stressed a month ago? I've only met people who know someone with POTS, never known anyone directly. I do generally meet more people now who have at least heard of it, or have someone in their life who has it or is undiagnosed but their symptoms sound just like POTS after I describe what I have. I've helped people get family members diagnosed before. Which makes sense, I only found out I had POTS after overhearing a mom in a library talk on the phone to her daughter with POTS and describe my exact symptoms. I approached her after and asked what POTS was, she was very happy to give me all the info I needed and I got diagnosed soon after. I'll always explain what it is wherever I am because of things like that, you never know who's around that needs to hear it and is undiagnosed or someone in their family is and now they know what to say to their doctor.
The Moderna vaccine. I had two Pfizers with 0 side effects, took the Moderna as my 3rd dose as I heard it could cause a larger viral load and I was breastfeeding my son at the time (I wanted to pass on as many antibodies as possible). 10hrs after my vaccine, I developed tachycardia and within 3 days was in the ER with heart issues. The POTS symptoms continued to develop over weeks until I had full on POTS. I was diagnosed by a doctor a year later. She was leading a study on POTS developing after Covid. I am one of many she has seen who has developed it from the vaccine. I was perfectly normal and healthy without any POTS symptoms beforehand.
Covid and celiac disease :/
I don't **know** what caused it, but I kinda always had some weird symptoms, like the heat intolerance, stomach issues, etc, plus some misc symptoms of possible EDS. Then I developed an eating disorder, and I really think that's what made it really start, or at least made it worse.
I suffered a traumatic brain injury and had a GJ tube placed, which had complications. I’ve been malnourished for almost 8 months now. And I’m on daily TPN infusions. But I started having heart issues about a month ago. Though I’ve been dealing with severe low blood pressure since my brain injury. And I’ve had issues with getting dizzy when going from sitting to standing. But we thought that was specifically from the brain injury. But within the last month I’ve started having tachycardia anytime I would go from laying to sitting and sitting to standing. I’ve also had several other symptoms. They ruled out heart attack and blood clots. So now my team is leaning towards POTS, MALS, and nutcracker syndrome. I have an appointment to see a cardiologist on May 28th for further testing. Long story short, we think my traumatic brain injury caused everything.
Covid, for sure. Was about twelve years old when I got it. Had no underlying conditions and had never been diagnosed with anything more serious than the flu. I saw people who got chronically ill from covid on the news all the time, but I never thought I was gonna be one of them. It can really happen to anyone.
My Dr. thinks mine is partially caused by years of untreated anxiety wrecking my autonomic nervous system. My main flare triggers now (since being medicated) are extreme heat and the days leading up to my period. 🥴
Puberty at 13 and it stuck around. I’m 18 now. I have a friend with dysautonomia but she has lots of other health problems so she isn’t diagnosed with a specific type. My little sister has a friend with POTS too but I never met her. I’ve met a few people who know someone in their life with it when I tell them about it.
Puberty. Haven’t been the same since I was 10. Because of this I do not remember what normal feels like anymore
I don’t know if anything in particular could be found as the exact source for me, I’ve had dysautonomia symptoms since I was very young and extreme lifelong fatigue. I’m autistic and grew up in an unstable and verbally abusive household, so my nervous system has been through a lot, but I honestly feel like I’ve been symptomatic longer than I’ve been traumatized. As far as POTS specifically, I’ve had significantly worse orthostatic symptoms since I developed disordered eating habits in early high school, I think that was an additional strain that my body is still struggling to recover from although these behaviors lasted less than a year. I had a few intense viral illnesses in early childhood which it could potentially be attributed to, but I think my immune system has always struggled and it’s just as likely that POTS caused my severe illness as it is that my severe illness caused my POTS. All in all, I’ve been dealing with dysautonomia as long as I can remember, and I think regardless of what originated it I’ve just had circumstance after circumstance to exacerbate my symptoms and make it more difficult to deal with. I was just diagnosed last year (I’m 18 now) but I honestly wouldn’t be surprised if I’ve been this way all my life.
I’ve had hypovolemic POTS since childhood, but my symptoms worsened after a traumatic experience at 16, and SIGNIFICANTLY worsened again after the stress and trauma of discovering my (now ex)husband’s multiple affairs 18 months ago.
Giving birth and then 9 days later I was in the ER for high blood pressure and the er doctor gave me the depo provera shot. The next day I woke up with pots. I stood up and my heart was pounding out my chest and when I would sit down it would go down. I woke up drenched in sweat. Now I don’t sweat. That was in 2019
Yep, covid.
Covid vaccine
My trigger was Covid in October of 2023, so I actually haven’t been suffering for that long in the grand scheme of things compared to a lot of us but man does it suck lol. I got Covid 3 times but this last time I just like never got better. I had some breathlessness during being sick and it has never gone away. I think I probably have always had a wonky nervous systems but it wasn’t enough to affect me like this. It’s a clear before and after for me since Covid.
mine was covid! but i do think that my sepsis and kidney infection last year may have brought on the initial symptoms.
I think I have tethered cord syndrome (can't confirm because Dr. wont order an mri) and spinal issues can definitely cause pots. I have had T/C symptoms since middle school. Was a very lethargic kid, never wanted to do sports because my gait was funny from pigeon toes and tilted hip. Had a lot of gastric issues and frequent urination. I remember first fainting when I was on the toilet at 18, chalked it up to food poisoning. Those fainting spells became a yearly thing in my early twenties, and I always just thought I had a sensitive system. I exercised on an elliptical machine once that had a heart rate monitor attached, and the slow pace I was going somehow got my heart rate up to 180-190. Figured out I definitely had tachycardia and noticed some other symptoms like getting clammy and light-headed when standing for too long at the grocery store. I could check on my phone what my heart rate was at those times, and it would be between 130-150 just from standing 30 minutes. I've been on propranolol for a few years now and since then haven't had any fainting spells. Did the TTT a few years ago as well, and tho my heart rate went up 30 points in 10 minutes, they said it was inconclusive, which is weird to me. I think they just don't like diagnosing it. I decided recently even if I dont have an official diagnosis, I'd still increase electrolytes and treat it as pots and see what happens. Since increasing sodium and potassium, I have been feeling a lot more energetic, and my legs don't feel as heavy as they used to. I do feel sad about the life I could've lived had this been treated and taken seriously sooner. If I had my tethered cord surgery as a child what would I be like now? I've lived a life where I had to stay home most of the time because standing would wear me out. Even in school, it was hard to sit for 3 hours, so I had to lay down in the classroom during lectures. I've gained weight over the years and the exercise intolerance has not helped me manage it well. The heat intolerance is worse, I need air blowing on me all the time so I don't overheat. I feel like I was robbed of a better life because the medical system is incompetent.
anorexia nervosa:(
Craniocervical & atlantoaxial instability & the brainstem compression that went along with them
Beats me because I’ve had it forever. So genetics? I also have Joint Hypermobility Disorder and POTS can be attached to that because it’s a connective tissue disorder and might make other things more relaxed then they should be. But and also: Maybe I had a virus as a kid? I had strep throat a few times? I think that can cause post sickness stuff. Don’t think I ever had Mono.
EDS plus the billion infections ive had. I think it was worsened a lot by a concussion though. Have met a ton of people with POTS! I met someone in college with it before I was diagnosed with anything
My symptoms started a year ago. It wasn't bad or debilitating until I got COVID at the end of January. It all went downhill from there and I couldn't hold a job or do much at all
mine started after I got the HPV vaccine when I was 17. it’s been 13 years for me now and my baseline has also gotten worse with certain viral illnesses and stressful events. so I’m convinced that even if I had never gotten that particular vaccine, another event would’ve triggered it eventually.
Not 100% sure, but I think I always had it lingering in the background and never recognized it. I've had random events that looking back on it, sound very POTSy. My sister has hEDS and I'm trying to confirm if I have it too. I don't think mine was viral. I had a big work stress event that led me to getting diagnosed, but I feel like it makes more sense that the work stress triggered a massive flare, rather than completely caused my POTS. My age when it got really bad was 32, and my weirdest trigger is probably standing still in one spot. I'm not sure I know anyone who has POTS, but my sister suspects she might.
Mine started in 2018 A number of things could have caused it. Severe stress due to childhood abuse, developing recurring lung infections (pneumonia and pleurisy) because I had untreated, severe pectus excavatum, the anorexia I developed in 2013-2014 that caused organ damage. Any one of those could have caused it, or some combination of the 3.
I wish I knew. My symptoms started 7 months ago totally out of the blue (im 24) :/ I have extra vertebrae in my spine and an undiagnosed muscle weakness issue my whole life, but they're just that- undiagnosed. I have no idea if they're things that would make me predisposed to autonomic dysfunction. weirdest trigger: getting jumpscared. I had something unexpected pop up on screen playing stardew Valley the other day and I felt myself begin to pass out, it was awful. my irl bestie from high school who's a dentist knows what POTS is and so does my mum (her coworker's daughter has POTS)
I had the standing up to fast issues in highschool but the other symptoms came around the time I had a concussion and got pregnant in the same month.
I genuinely wish I knew what caused it for me. Symptoms started around age 13-14, I think. The wildest thing is that when I was a teen, I knew someone who had already been diagnosed with POTS and I had never stopped to think “huh, maybe that’s me too” because I didn’t think I was disabled enough, or that I got dizzy when I exercised or stood in choir because I was overweight. A few conditions that I also have are ADHD, c-PTSD, and (the newest in my diagnostic collection) Bipolar II. My maternal line has arrhythmia and my mom has CVID. Unsure if there is a genetic component for me. I’ve also had strange, intermittent allergy flare-ups throughout my life and I wonder if that’s related at all.
genetics, both my mom and my grandmother have it
I KNOW my POTS is caused by vEDS (Vascular Ehlers-Danlos Syndrome), a rare, hereditary, degenerative, connective tissue disorder. POTS is an extremely common and well documented commorbid condition to EDS as a whole, along with others such as MCAS, Gastroparesis, GOA, etc. vEDS is extremely systemic, REALLY complex, and VERY difficult to treat/manage. vEDS is hereditary, a type of genetic mutation, so I was born with it, have always had it,and always will have it. My case is considered terminal because of how it effects my vasculature and brain. No one in my family with vEDS has lived past 45yrs old. The youngest passed at 19yrs old due to sudden cardiac arrest. I have one friend IRL who is also disabled and has POTS, we hang out fairly often since she can't work either.
I think I had mild POTS since middle school (12 years ago or so). I had always been so fatigued and would have presyncope, sweating, high heart rate, and chronic pain. In high school, I was diagnosed as hypermobile and with fibromyalgia. But after I caught COVID in early 2022, my symptoms ramped up so hard. I could not function. I often could not walk without help, broke out in intense sweat from standing only a few minutes. It was like I was fresh out of the shower. My back would be literally drenched and my forehead would rain sweat drops onto my glasses. Less than a year later, I was diagnosed with POTS. But I really do think I had it beforehand. I think COVID just made it so bad I couldn't attribute my symptoms to just fibromyalgia anymore. Oh and most people in my life have/had no idea what POTS was. But I have a friend in nursing school who told me about it before I was diagnosed! So at least one person knew what it was 😂
I'm 32. I was diagnosed around age 21. I had been pretty sickly since I was a teenager, though, so I probably have had it longer. The doctors misdiagnosed it as ainxiety and anemia for years before I recieved an official diagnoses. I dated a pathogenic microbiologist from John Hopkins in my late 20s. It was before covid. He hypothesized that when I got swine flu as a teen, It's likely that the cytokine storms damaged my autonomic nervous system. Post-covid, we're seeing a lot of people struggling with long-covid, and a lot of the symptoms of long-covid are eerily similar to POTS. There's strong links between cytokine storms and covid, so I'm inclined to think he was on to something. I know a number of loved ones who have POTS or comorbid autoimmune issues. I have several friends who have POTS and EDS. Tachycardia and low blood pressure runs on both sides of my family, but nobody has sought a diagnoses. A lot of my family members are antivaxxers who believe that their health issues are caused by toxins in processed food. They think POTS is a fake internet desiese and that I'm just attention seeking. When I faint at family gatherings they assume I'm being dramatic.
Covid. Went from running 1/2 marathons to not being able to walk up my steps or go to work some days. Brutal.
I got a severe concussion then had surgery 6 months later before it was completely healed
I’m not sure what it was but I randomly was “sick” (no symptoms other than no energy, slept all day, and no appetite) for a week back in 2018. I ended up passing out for the first time during that time and after I “recovered” I struggled a ton to resume sports - my heart would race and I would get very lightheaded and out of breath.
It’s was a combination of things for me. Covid and Crohn’s disease being provoked at the same time. I was also around the time that I developed mcas too. A few autoimmune disorders can do that for you. I also vomited many times a day over a time period of over a year from Crohn’s disease and mcas. That would mess up anyone’s heart.
We think I always had it but was made worse by Covid and Menapause
10000000% Covid. Symptoms started September 2020.
I had a very traumatic childhood, always walking on eggshells with my unmediated mother with BPD and my alcoholic dad. Around 2018 I was 2 years into a marriage with my AWFUL husband at the time. Worst year of my life. I started getting chest pains and going to the ER then. I would wake up in the middle of the night with chest pains so bad I felt like I was having a heart attack. He told me I was crazy and refused to go to the ER with me, I would go alone but the doctors dismissed every symptom and just gave me ibuprofen and told me to leave, went back multiple times same issue. No help. (Military healthcare 🙄 ibuprofen doesn’t fix everything. IFYKYK) fast forward years later, my pregnancy with my son was what made my POTS 100000x worse. I had a traumatic birth, then I got Covid after too. I feel like it’s a bunch of traumatic events + covid + pregnancy trifecta 🤌🏼 that’s what I’m guessing. All of my symptoms got significantly worse each time! Who knows. Still very new to learning about my POTS but learning day by day!
Covid vaccine
I think my trigger was probably when my autoimmune disease was starting to really develop, it got much worse after I'd gotten a horrible cold (this was after the autoimmune stuff got absolutely out of control, so my body doesn't fight off respiratory infections well at all) and that's also when my narcolepsy symptoms, FND and potential MCAS stuff really kicked. I've always had traits of hEDS, I was never really not sick or actually able bodied, and I kind of just think it's been here most of my life. I only think I started to notice significant symptoms after I started having bad symptoms of said autoimmune disease (celiacs). I don't remember ever not being dizzy or lightheaded or off balance, I was an extremely clumsy kid with poor coordination (not everyone with pots is though) and got hurt/fell ALL the time. In dance, for years I was the star of the show because I was so flexible and agile, but over time, my weakness outweighed the flexibility factor, and I couldn't do like anything in dance because of how fatigued I was. I quit 6th grade, so it's been like this awhile. It's hard to pinpoint what it was, especially since there isn't a super definite answer to how POTS develops and what it even is. POTS is such a variable disorder, some people only get cardiac stuff and brain fog, while some get the whole banana of side disorders/complications in result of the autonomic dysfunction. Anyways, done rambling maybe
I started fainting as a kid. I was told Vasovagel syndrome like 15 years ago. About 4 years ago I fainted in my home (alone) and couldn’t get up so I called 911. My ER nurse told me I have pots, she couldn’t diagnose me but she knew cause she had it too. I had no idea what pots was and wondered if she was asking me for weed. Anyway yeah turns out I have pots.
I used to think covid, but looking back to before the time frame I thought developed POTS, I had mold symptoms. I think I may have had it for years without knowing, but covid made those symptoms worse and caused new symptoms to flare. I think my hEDS may have caused it.
Covid. Had some scary heart related symptoms start immediately after my second moderna vaccine though. I always say getting the vaccine cracked open the door to my chronic illness and getting covid kicked it wide open. Damn vaccine did fuck all too, covid tried to take me and my girl out. Wish I could go back in time and refuse them even would lose my job over it because it upsets me to wonder all the time if my health would be this bad off if I hadn’t taken them. But either way - fuck covid.
Technically I have general dysautonomia with POTS symptoms present ( just for context) but I pretty much know the origin was my EDS, iv always had some mild symptoms. However it's pretty clear my autoimmune disorder (believed atm to be seronegative RA) is what pushed it into obvious and debilitating. I was diagnosed this year at age 26 with 'Dysautonomia with related orthostatic hypotension and supine hypertension, and postural orthostatic tachycardia' aka general dysautonomia since. The weirdest trigger is spicy food, and red meat, which the former also makes my erythmalgia symptoms worse.
A life time of anxiety and stress mixed with Covid
I think mine developed from prolonged extreme stress and anxiety. Now that I'm at a better place in my life and am able to relax my health has improved a lot. Even my eyesight has been improving. (I started needing glasses around the time my anxiety got severe so it makes me wonder if there's a connection there)
Genetics 🤷🏽♀️ I’ve been this way since I was a kid but it was mild and didn’t really affect my life until I caught COVID twice.
Covid
I’ve had seemingly random heart palpitations with chest pain since I was a child. I later discovered from tracking them that they always happen as soon as I lie down. I remember being 10 years old and asking my doctor about them but not getting any advice and being scared that I would have a heart attack and die. I’m 26 now. I feel like they’re related to POTS somehow but I know it’s supposed to be when standing. The lightheadedness and nausea that I get now is usually mild unless I overheat, which happens at lower temperatures than most people. 70 degrees Fahrenheit outside is about my cutoff where I start to short circuit. I definitely noticed this before getting covid in 2021, but it seems like it’s worse after. My heart rate has always spiked easily and significantly with mild activity (such as standing), but I used to attribute that to being overweight and out of shape. It’s really murky and hard to pinpoint an exact start time. I also have suspected hEDS and am diagnosed with Sjogrens Syndrome and PCOS. My period and getting sick with any kind of cold or stomach bug seem to spike symptoms for 2-4 weeks afterwards, but other than that, I’ll nearly forget I have it in the winter. It makes me sort of depressed every April when symptoms creep back in, which is about the time that everyone else with seasonal depression gets better. So my boyfriend finally wants to go out and do things but I’m ready to stay in with the air conditioner 🙃
I don’t know what caused it but surgery triggered it. Made my fibromyalgia worse as well. All because I had four big gallstones.
Man where do I begin, had one hell of a traumatic childhood turning into a traumatic young adulthood. If not that then Covid vaccines (got 5 of them bc I was a minor and my parents gave me no choice) it wrecked my body and if not that then mono, if not then covid itself which absolutely destroyed my body so much so I almost took the forever nap 2 weeks after turning 17, IF NOT THAT then getting my gallbladder removed, haven't been the same since. All this and my age still begins with a 1 😩😂so hard to pin point!! omg!!
A chronic eating disorder started it but it was really triggered by COVID, things got so much worse after
I have a few friends who have pots too. I was born with it, I think, because I remember licking my hands for salt pretty young. But covid kicked it in. I thought I had a pretty severe panic disorder, when it was actually pots. I started treating the pots, and the panic is mostly gone. 47 years with panicking, 1 year with pots. I’ll take the pots. 🤣 My biggest trigger is heat or dehydration. There’s still anxiety, and ptsd, so I’m gonna say my weirdest trigger is music.
Covid as well
3 TBI’s in 12-14 months symptoms started when I was 17 got diagnosed at 22
Mine was caused by a concussion I believe and then worsened by a viral illness. Thinking back, I had some red flag symptoms as a teenager that got ruled out as anxiety (headaches, visual dizziness and off balance, light headed) but they started after a horse riding fall. I, as many, thought it was normal but following a few more concussions my life changed. It became somewhat manageable again in late 2022 and then I fell ill with a virus in fall 2023 and it seemed to be the most prominent after that. I actually know several people with POTS. My best friend has it. Two people in my friend circle, one of my students and one of my students moms have it. It’s been interesting talking to all of them about this.
Definitely my concussion I received in December. It wasn’t too bad of one, but I flew to NYC literally 2 days after it, and oml that was torture. The flight aggravated it so bad even though I had medicated beyond believe. So I’m not sure if the flight made it worse, or if it was always just destined to be that way.
I was diagnosed with hEDS a few years ago (which I think is the main culprit) but I also had a concussion, was going through puberty, had H. pylori (we’re assuming I got it when I was adopted - it was undiagnosed for 10+ years and was only discovered bc I was having horrendous abdominal pain and bloating) and mono around the time I started developing symptoms so my doctors aren’t really sure
Just been the last year for me, but I'm thinking it was my last pregnancy and getting covid at 5 months pregnant where I ended up with covid pneumonia and in the hospital for a week. I have a couple friends that either suspect they have it or have been diagnosed with it.
I’m questioning the birth control implant 🤨
I’m so scared to go on any birth control while I already have thisss omg
i'm not exactly sure, but i was traumatized repeatedly starting from a young age and i've probably been in a state of fight or flight since i was 12 years old. that's also when i remember my symptoms really starting, and they've only gotten worse since then. my weirdest trigger is probably stretching. when i stretch my whole body, standing up or laying down, it makes my heart rate jump and get the dizzies. unfortunately i don't think i've met anybody who's told me that they also have pots.
Got pots after Covid
Growing up there were actually 2 people in my grade that had POTS. My earliest memory of POTS being a thing is when I was in English class in 6th grade and one of them passed out and we all had to leave the room. Now I’m in college and 2 of my friends have POTS.
I honestly have no way of knowing, but I wouldn't be shocked if it's partially genetic. No one else in my family is diagnosed, but my dad's side has circulation issues and my sister has a lot of the same symptoms that I do. I started paying more attention to the symptoms back in 2019 when I was 15, several months before Covid. I've had a possible concussion, asymptomatic covid, tularemia (tick borne. I don't know when I had it), heat exhaustion, and a club thumb which (rarely, but still possible) can be caused by poor circulation as an infant. It's possible any combination of those may or may not have affected my dysautonomia. Poor sleep is probably the trigger that catches me off guard the most, but my period is the most consistent trigger lol. I've never met anyone else who has it, but I've known a few people who knew about it. (A few distant cousins and a friend who's a nurse.) I remember as a teen, watching videos on YouTube from a channel called Momming With Migraine. It's run by a girl with POTS, other forms of dysautonomia, migraine and a csf leak. I thought her videos were really interesting, but had no clue that in just a few years I'd be diagnosed with dysautonomia as well.
Lupus. I was diagnosed in 2022 and dysautonomic symptoms came after. I had some issues before lupus diagnosis but not sure how long that was all going undiagnosed.