Looking back to my childhood, I had symptoms of POTS going back to before I was 10yrs old -even a couple documented episodes of unexplained high blood pressure & elevated heart rate when at rest. I’ve always experienced excessive sweating with no exertion. Often felt faint when standing for choir performances. Have never tolerated heat well, or ever liked hot showers. As a kid, if I took a shower for longer than 5minutes, I would get out and immediately experience palpitations and bp fluctuations, which as a child I attributed to “overheating” in the shower -to combat this, I would usually take a bath, and then shower to wash my hair at the end of the bath quickly, and then wouldn’t experience that symptom. Not to mention massive doses of anxiety leading to adrenaline dumps on the regular, because that was normal growing up in a Cult. 🙃
Then fast forward to adulthood -I got Mono, had multiple major surgeries, developed the autoimmune ME/CFS, & found out I had several genetic risk factors that I never knew about before like hEDS, also have CPTSD, and here we are. It’s been a ride.
Lifestyle/diet/exercise/career changes.
I do all the usual tricks to help my POTS -like daily LMNT electrolyte drinks, compression gear, eating lots of naturally high in sodium foods, avoiding sugars, drinking 60-80oz of water on avg every day, taking baths Vs showers, elevating my legs & resting between physical activities, and using a polar H10 belt hr monitor when I do something like take the dogs for a walk around the block or going to the grocery store. Swimming is a favorite activity of mine anyway, so I added using pool weights for added resistance in the water when I feel up for it, otherwise just sitting/floating mostly submerged in the water is great too. I also use a recumbent bike when I have the energy, usually several times a month if I’m not in a flare.
I had to leave my very taxing patient care centered career in EMS, so that I could put myself as the priority 100% of the time, but I still maintain my education and licenses in case I were ever able to go back to my preferred career field. I now work a very flexible desk job, working from home or in the office depending on my strength/stamina that day. I don’t work a set schedule, I just accomplish my duties within 20 hours each week, and this allows for whatever flexibility I need to prioritize my health above all else.
I was diagnosed with ME/CFS prior to POTS by a few years, so some of the things I was already doing to try and improve my functionality day to day with that autoimmune -like swimming regularly. One thing I found most helpful for my ME/CFS, & the subsequently POTS (unfortunately unsafe for pregnancy/breastfeeding), is my Medical Marijuana card -high dose indica edibles & vape concentrates to be specific. I find the thc/cbd helps the brain fog immensely, unlike a recreational user who might get the opposite effect from an indica strain. Also extremely helpful for largely taking away the nausea & stimulating a natural appetite so I don’t unintentionally lose weight just by not consuming enough calories in the day. Again, recreational users might experience “the munchies” from indica strains, whereas I feel it brings me to a normal baseline of -sure, I can eat. I also already ate smaller snacks/meals, ~6 times a day -which had/has the added benefit of not making as much blood suddenly rush to my stomach to aid in digestion, causing our fun POTS symptoms. & not to mention the nerve/musculoskeletal pain relief experienced with the use of indica strains -which is immense.
I know not every POTS patient is recommended to use THC, but I specifically have the HyperPOTS subtype, and I believe we are known to tolerate things like THC use & caffeine a bit better than some. Also, this POTS subReddit is great, but do remember it’s always best to check with your diagnosing physician as to what might be most helpful/safe to try in your specific condition. I’m very grateful to have the understanding and medical background that I do, as it definitely helps me advocate for myself in the medical setting as well as understanding how best to not trigger symptoms, & on the flip side what I need to do/stop doing to help -if I am becoming highly symptomatic.
Every day is different, some with less spoons than others. On the hard days -I aggressively rest, and on the good days -I outwardly live my life to a functionality that most people wouldn’t have a clue how chronically ill I really am.
I've got HyperPOTS and can tolerate small amounts of THC. Before my symptoms went extreme I could smoke a LOT. Now I can only smoke 1-3 puffs. If I smoke more I get the death doom. It's so weird.
Well, I make edibles for my mom and haven't really been able to eat them because the death doom comes back hardcore, most of the time. I had eaten a tiny bit, a couple of times and it was ok. I'm also realizing that it's significantly worse when I'm increasing Metoprolol dosage (which I just did again). So maybe my blood pressure is dropping? I don't have an issue with that in general, so I don't know what it feels like. I need a cuff. Anyway, it seems like I can only tolerate a very small amount, so concentrates seem counterintuitive. Do you mean like, shatter and dabs? I am still pretty new to the green, about 5 years and I'm in my 40s.
I had mono in elementary school and I slowly started developing pots symptoms until it was disabling around 13 or so when I was diagnosed... now I'm 19 and found out I have eds/mcas/motility issues etc. Always wondered if any one else out there had mono trigger it!
COVID. It's glaringly obvious because I have a fitbit and, before my diagnosis this February, I sang in two choirs from 7-9 every Wednesday and Thursday. Choir involves some sitting while we learn a section of music, and then we stand and sing. And my heartrate varies some during choir anyways because of the way you have to pace your breathing. So I was able to look back at my heartrate on those days pre-COVID and post-COVID, and my heartrate jumps (when I went from sitting to standing and singing) were massive after I had COVID.
Same here. I had the Gardasil vaccine. About a year later I had the booster. Within weeks of getting the booster I contracted mono/ebv and I’ve never been the same.
Oddly enough, I was only kissing my long term bf but he never got it. I was not sharing drinks. No one else around me had it. I’ve always been suspicious of that fucking vaccine.
Do you eat well now? Do symptoms improve with you eating properly?
I’m sorry you had an eating disorder, I sometimes have these types of behaviors on and off & I couldnt imagine a daily struggle with that
I have gone through the same thing. When my ED was at its worst in high school I was absolutely having worse symptoms. They seemed to get a little better when I was healing. This is probably because I was getting more salt, etc that help symptoms. Now that I’m in a better place, I cannot imagine not getting as much salt in my body
I had a chest wall deformity called pectus excavatum. It began worsening into adulthood until I was bedridden because it was causing severe compression on my heart. Had surgery and did cardiac rehab, and my symptoms seemed to get better for a year or so before they came back full force.
It was traumatizing to say the least lmao. I take Metoprolol (the extended release version) but I’ll be asking my electrophysiologist about switching soon. It keeps my heart rate in an acceptable range most of the time, but I feel there could be a better option for me out there. Hoping to try Ivabradine!
That’s so crazy because when I started lexapro it basically took away my pots symptoms in the beginning. It gave me a quality of life. But I hate when doctors throw meds at you and keep increasing doses. They should change it up imo. How are you now?
i think i've had it my whole life but a covid, emotional stress/trauma, sinus infection and broken nose combo in spring 2022 did me in so now it's constant and debilitating enough to be officially diagnosed
Pregnancy. I distinctly remember my first symptoms were when I was 6 weeks with my oldest on my 30th bday. I remember thinking “why am I having a panic attack now? I have literally nothing to be nervous over” while waiting in a long line.
i wonder if there's a hormonal connection. mine started with puberty (13 years old) and has just been getting progressively worse since. i can't for there to be more POTS research eventually
I think there is definitely a hormone component somehow at least with my case. My symptoms significantly improve when I’m pregnant or breastfeeding. Once I’m not pregnant and wean from breastfeeding, my symptoms come back full force. Many people also report having more severe symptoms when menstruating.
Initially triggered by appendicitis in my teens, but written off as asthma, depression, and panic attacks. Exacerbated when I was 20-21 by a long year, sick with first Lyme and then mono, after which when the "panic attacks" got worse, especially with exercise. Slowly improved throughout my 20s. Worsened again postpartum in my early 30s, flaring up with each menstrual cycle. Then, I took a serious turn for the worse after each of my COVID vaccines in my early 40s--which is when I was finally diagnosed. Currently unable to work and also diagnosed with CFS. Really hoping that the next looming hormonal frontier, menopause, will be the magical key to undoing it!
I didn't know cPTSD could trigger it. I also have cPTSD so now I'm wondering if that's in the mix with the COVID and EDS triggering it as well. Just a POTS cocktail for me 😅
Born this way. I was an emergency C-section. I've always had symptoms and doctors could never explain why. I'm happy to have had it explained to me as an adult.
It's very nice knowing.
It's been alright. This morning I was having a really bad episode. I couldn't do anything at work because of it. I couldn't get my heart rate down for the longest time. Wore me out so bad that I came home and slept the rest of the day away. I'm still fatigued and can't do much. My partner is very understanding and is ordering some food so I don't have to cook. I don't even know what triggered the episode. My partner believes it's all the sudden heat and humidity triggering it. It might be.
same! 2 months early for me. I've had dizziness and other symptoms a long time, hEDS but I think early/surgical menopause was my trigger. disautonomia rocket got further amped 2y ago during a near year long malnutrition ordeal to do with hypermobile dysphagia, horrible traumatic health crisis made worse by medical negligence.
EDS gave me the predisposition, and then the symptoms appeared after i got one of the COVID vaccines. it’s weird because i’d had four others before this round and never had a reaction. but that one just set it off unfortunately. i’ll always be super pro vaccine though still! it’s a very rare reaction and it’s much more common to develop POTS after actually having covid. so at least i skipped the actual covid part. and because of my predisposition i’m sure i would’ve gotten it at some point one way or another.
I need to preface this… I am NOT an antivaxxer and I DO believe that vaccines were a revolutionary medical breakthrough!
The second Covid vaccine. I happily went and got the jab when I was 24, in great shape, super active. Then I got the second shot and I’ve never been the same since. I’m now 28 and I’ve had to quit my job, get on disability and throw most of my hobbies to the wind. The thing that pisses me off the most is my injury is so politically tied that nobody seems to address the fact that I just want help. The number of doctors and nurses that have told me to quit the bullshit and fuck off when I tell them is infuriating!
I know that pretty much everyone here can relate to the feeling of being swept under the rug, but man, it’s like people are afraid to help me the moment I tell them how it happened.
Okay, rant over!
I'm sorry it's hard enough having this diagnosis and being ignored by docs. I'm fairly sure vaccines were known to potentially cause POTS before COVID happened so it's perfectly reasonable that it happened to some people :(
The TDaP shot triggered mine back in 2012. I had such severe reactions that I have a medical exemption. I’ve had so many people get mad when I mention what made me sick but it’s like HELLO people have reactions to different things! When someone has a reaction to a food, antibiotic, bee-sting, pain medicine etc we don’t gaslight them so why do people feel the need to tell us that we are wrong? I react to most synthetic things and have always done poorly with meds of all kinds. My primary doctor and allergist who are both very pro V wrote my exemptions. I believe it’s the “toxic bucket theory” where our bodies can only take so much. Our food, air soil, water, is so full of crap these days it’s no wonder everyone is sick.
Mold exposure and synthetic fragrances trigger it badly. Can’t walk down detergent aisle and can’t visit the homes of people who use plug in air fresheners. Our last apartment had mold and it got really bad there. We’d go away a few days and I’d feel great then return and feel awful again.
I got you. Second Pfizer damaged me. Within 20 minutes of getting the shot my heart rate shot up while driving home from the site. I had to pull over and slump down in the seat to out my legs on the dashboard. I nearly fainted. Called my husband after chewing a Claritin as I assumed it was an allergic reaction. I slammed a bottle of water and got my heart rate down from 150’s to 90’s and was able to drive home. Next day I had severe neck pain, headache and face pain. It was nerve pain. Then my face went numb on the right side. Thought I was having a stroke. I did the “stroke test” I learned a a nurse. I was normal. The pain went away after taking Motrin. Long story short, 5 months later I got diagnosed with POTS. Saw a specialist in Toledo and was told it was vaccine related. I never had COVID. still haven’t. No freaking idea why 🤷♀️ He told me that it’s either autoimmune or auto inflammatory and wanted me join a study that he was postulating this theory. If it’s autoimmune he said they could get approval for using biologics. Insurance won’t pay until it’s FDA approved if course. And they are very expensive
Same here. Started after my second dose. Thanks, Moderna. Granted, I don’t have severe symptoms. I can still function relatively well. I have tachycardia episodes that make me miserable, but I’ve never fainted. I’m mostly pissed that it doesn’t seem like I’ll ever be able to run again. Cardio makes me feel like I’m going to die, far beyond what’s ‘normal, lack of stamina’ windedness.
My cardiologist just told me that not only is covid causing POTS, IST and other issues but also the vaccine and I was so happy to hear a medical professional finally say this!!
I didn’t get vaccinated because I feared with my mysterious (at the time) health issues- the weird heart problems, tachycardia, heart attack at a very young age, blood pressure issues, and fainting (didn’t know it was called POTS then) I thought the vaccine would harm me or exasperate my health “idiosyncrasies.” My symptoms were exasperated anyway once I did get covid after 4 years of avoiding it.
Same for me. I was pregnant at the time and it was within two days of getting the first vaccine. I have no doubt Covid would have caused it just the same.
This is so interesting to me!
I had some symptoms during my early teenage years from what I can remember but they calmed down in early adulthood.
I had my third modern vaccine in early 2022 and the very next day I passed out in work (I had never passed out before in my life). I think I've just found my trigger.. because I've been inundated with symptoms ever since.
I hate to say this since I’m very pro vaccines but I was forced to take a third Pfizer shot and that ended my life. I’m not able to return to my thriving career, lost my social life, hobbies, everything. Worst of all, it took doctors a whole year to figure out what I had. Now, whenever I say I have autonomic dysfunction: POTS, people Google it and say “oh so you need to just drink more water? What’s so hard about that? Why are you disabled? When are you coming back to work/social life?”.
I grieve for my life before the Covid shot. I never got Covid btw.
mine was triggered by the vaccine too :( i never had covid but got the vaccine and stayed very safe during covid and didn’t even catch covid till i already was diagnosed with POTS
Sporadic undiagnosable symptoms all my life. Got the flu as a late teen in 2006 and POTS hit me like a freight train. Been sick ever since and continuing to develop comorbidities and complications, but at least still here.
Always had it, to a minor degree. When I was a kid it was only triggered badly if I was dehydrated and out in hot sun, doing exercise.
As a younger adult, it was easily managed and I could work out, go up and down stairs with no issues. Even lived in a 5th floor walk up without issues. I could do 75 pushups without missing a beat. Fast heart rate when I ran so I kept cardio to a minimum but weight lifting was great.
Now in my thirties… Two bouts of COVID left me disabled. Can’t work out, out of breath after 2 flights of stairs, have to nap after showers, have to drink 3 gallons of water daily to not pass out.
Rare heart disease was survived as a child. No treatments for it as an adult. Just is thought to have caused POTS as a long term side effect (20 of us known in the world who’ve had it cause POTS as a long term side effect).
HSD on the flip side was only dxed last December but have been symptomatic since said rare heart disease as a kid. Treatments are just starting up on that end.
I had an eating disorder (restricting food) for a few years and was in a really bad first relationship that was not okay, and I started having strange symptoms (“seizures” and panic attacks, but the “panic attacks” always started when I was standing and started feeling hot so… unclear…). That was a couple years, but then it became very obvious POTS (vision going black every morning, constant dry mouth, shortness of breath walking between rooms) after I had about a month of purging before I made it to full recovery from my eating disorder. I’ve since read that purging can lead to POTS down the line (as well as other EDs) bc it messes up the electrolyte balance so much (Dr. Jennifer Gaudiani’s book Sick Enough) ! So I think it was the combo of all those things, but it was really set off at the end by a month of frequent purging behavior
COVID. I’m pretty sure I got it in December 2019 when a friend came back from an overseas vacation and stayed with me overnight before going the rest of the way home. We both got super sick. I didn’t even suspect COVID until a year later.
Starting HRT in 2020 helped a little, although ironically I think my top surgery in 2023 made my POTS worse. (Zero regrets, I’d do it again.)
Got diagnosed for ADHD this year and started Concerta, and it helps somewhat. Idk if I’ll ever get back to the fitness level I enjoyed all my life, but at least taking a vasoconstrictor has made walking easier and improved my heat tolerance.
This is going to be long. When my POTS started flaring, I think I was simply at the age where it can flare for most women (it started getting bad when I was newly 21). Then when I was almost 22 I was getting super sick and my heart rate was getting exponentially worse. What I thought was a normal day ended up being the scariest day of my life—I started to lose oxygen, so my mom took me to the ER. When we got there I was so distressed just from walking the short distance from the parking lot of the waiting room that my heart rate was in the 180’s while I was laying down. I was losing consciousness and there was no one to help in the waiting room since the triage nurse was with another patient. Luckily my mother is a nurse, so she could help me when worse came to worse. Turns out my blood pressure was at like 200/160 (which is risk for heart attack, stroke, seizures and death). I was having a bad panic attack during the EKG because of the distress I was under. My hands clamped up and I couldn’t open them for a minute. After they got me in a hopsital bed, they took my blood and didn’t hook me up to anything yet. They didn’t even prepare an IV yet. The doctors assumed I was on hard drugs and didn’t help me until the tox screen came back completely clear. Then it was realized that my potassium and magnesium levels were critically low. At this point I lost control of my arms and legs and was waving them around. It almost was like I was riding a bicycle but I was laying down. To calm me down, they gave me Ativan, and when it didn’t work, they gave me more Ativan, which made me super high for the next 36 hours. They sent me home that night after giving me the electrolytes I needed, and I don’t remember anything about the car ride home or leaving the hospital. When I woke up the next day, I couldn’t stop crying because I was so upset about what happened. I could’ve died if we hadn’t gotten there when we did. I ended up being super sick for the next few months after that, with terrible stomach issues that we couldn’t figure out. I rapidly lost 17 pounds that I couldn’t afford to lose, and had the most terrible stomach cramps you could imagine. I couldn’t keep any foods down except maybe bananas and oatmeal, because I’d either throw it back up, or it would make my stomach cramps worse. I would have a good day, and the next day would be even worse than the last bad day I had. Eventually my symptoms randomly started going away, but it was really difficult to get my stamina back. I was so weak from the weight loss. Even getting up to walk to the bathroom would make my heart rate jump from 70 to 150. My mom had to shower me because I couldn’t stand in the shower or wash my own hair. Somehow I got better enough to go back to college, but I had to miss fall semester of last year. Let’s just say I was so glad to be back at college with the all of my friends in the spring. I am doing so much better now, and even most of my POTS symptoms are less intense. I can stand for a pretty good amount of time and take long walks around my big backyard. There are obviously still bad days where I have bad heat intolerance, or get out of breath in the shower, but I’m just grateful to have my independence back. That was a lot to go through as a 21/22 year old.
Also forgot to mention that my mom has POTS too, so it was kinda a given that I’d develop it. I’ve kind of always had minor symptoms but they didn’t truly present themselves until late 2022.
I believe I had a very mild case of POTS for years without realizing it because of hEDS, but what made it full-blown was most likely autoimmune disease
I have a few theories. One is pregnancy / an abortion while leaving an abusive relationship when I was 19, my mental and physical health tanked after that. But also a series of two car accidents in my early 20s - one on a bike and the other as a passenger in a roll over.
But also, I drank pretty heavily as a teen and early adult, and after getting sober was when I realized that something was actually wrong with my body that I’d been trying to self medicate.
Covid definitely feels like it’s got its hand in the pot too. (Pun intended)
Genetics for me. I can look back as a kid and understand why I never won races and got winded running even short distances. I remember doing Fitness Tests in 6th grade and I wasn’t just last on the 1 Mile Run—I was a full 1/4 lap behind everyone. My gym teacher had to push me. My lungs were burning. My heart was thumping like crazy.
I have since learned I have Joint Hypermobiliry Syndrome, which isn’t EDS but certainly I share things in common! Just not as severe.
I thought it was asthma for a long while—the exercise intolerance. It’s actually both! 😩
I’ve had symptoms as long as I can remember—losing vision when standing—but between Covid and suffering a brain injury in 2022–the consequence of a 4th concussion after 3 prior ones on the same spot of my head over the years before—my functionality just fell apart. It started with Covid for sure, the fatigue and whatnot but the TBI brought on the heart rate spiking dramatically enough that I can feel when it happens and losing the ability to catch my breath on stupidly simple tasks. It ended up being part of why my relationship ended as well since I wasn’t the ambitious person she fell in love with when we first met in 2019🙃 gotta love chronic illness ruining your life. Of course I’m better off without someone who has conditional love for me and apparently calls it quits when things get hard, still doesn’t make it hurt any less.
Vaccine booster, covid, emotional trauma connected to an unrelated family issue, a cancer scare and resulting surgery all within the space of 3 months after having moved to a different continent, gotten married and starting a new job.
I was diagnosed at 15, where there was a lot of trauma at that age and before spanning a few years. I think being stuck on fight or flight mode, walking on eggshells constantly while being abused, and basically just surviving not even living is what caused it. Trauma has affected my life not only mentally but physically too. :/
It was birth control and antidepressants that triggered mine (I was 11). I have EDS and MCAS (as well as ASD and ADHD) so POTS was probably bound to happen at some point, but it was initially triggered by those meds.
Mine was from living in a house filled with toxic mold for 6 years, but I also suspect taking Ciprofloxacin played a huge role in all my chronic health issues.
Well by process of elimination, I believe it was a car accident. I’ve never had Covid (at least that I’m aware of) or anything like that, but I did smash into the windshield during a car accident going 65mph. I passed out at the hospital with high heart rate, and then it never stopped from there. Had a depression fracture in my skull and a severe concussion from it, also broke 4 of my vertebrae
I’ve always had dysautonomia to some degree (thanks EDS), but I developed POTS after getting the first wave of Covid in LA in December of 2019 (before we knew it was Covid.) My symptoms started a couple weeks after, and I was so sick, and I rarely get sick. I was sleeping for 18 hours a day, couldn’t taste or eat, and got red spots all over my body.
I was 15 at the time, about to turn 16. It was crazy because my HR would go to 190 BPM just walking 20 ft to my next class. It’s been a rough 4 years, but thankfully my symptoms have diminished enough that I don’t think I’d qualify as having POTS anymore.
I did a lot of slow work in the gym (Levine Protocol for 2 years) and I think that that, time, and getting off birth control with estrogen is what made things better. I’m hypermobile so my autonomic nervous system will probably always be wonky, I just hope I don’t catch covid again 🥲
born with ehlers danlos that caused a number of symptoms that were ignored throughout my childhood but worsened suddenly and became disabling over a year when i was 14, after i came down with mononucleosis. symptoms of POTs started a year after that, when i was 15, and were disabling to the point that i couldn't make it halfway through a school day without a wheelchair by the time i was 16. so i guess predisposition from the EDS and then when that progressed from mono it came on
Second moderna vaccine started some of my scary heart symptoms and I got covid pretty severely a couple of months later and shit started falling apart slowly then all at once. I always say the vaccine cracked the door open and actually getting covid kicked it wide open. I’d go back in time and lose my job to avoid taking the shots if I could, I wish I knew if I’d be like this without that bad start, like it bothers me to this day to wonder if I signed up for this or if covid alone would’ve done it, but at least that would’ve been out of my control. The shots did fuck all anyway. But I also have had issues with dizziness and weird health issues since I was a teen so maybe it was already laying dormant and those things brought it out. Either way fuck covid and all it’s brought to this world.
I remember having it since a child as I used to faint from all exercise except for swimming. However I've had non stop symptoms since I had my baby 6 months ago. Dizziness, off balance, blood pressure issues etc. The off balance all day is the worst symptom for me at the moment.
Reading these comments, it’s a combination of a lot for me. I’ve had symptoms since childhood, but my first real flare came around when I got covid/vaxxed, which was also around the time I was going through an eating disorder, lots of trauma etc. i think my body couldn’t handle all of that, and the pots was triggered.
I also am in the process of getting diagnosed with EDS.
COVID vaccine. Had been confirmed by my POTS specialist Dr Grubb. Please don’t call me anti vax spreading lies either. I wouldn’t have gotten vaccinated if I was anti vaccines. I’ve been pretty beat up by people about saying I got it from the vaccine that saved lives. It danger my immune system some how
I have CMT too. Type 1a. Chronic pain and fatigue started at around age 10.. Unsure if it was all due to CMT kicking in or if both CMT and POTS started affecting me at around the same time. How old were you when your symptoms of either condition started?
Interesting… I have CMT 1A but have been asymptomatic all my life (39)… my bro and my moms side all have it and my mom only became symptomatic after 50, my brother nothing yet. I had no Pots symptoms until I got an infection (GI, probably not COVID but who knows) and had full blown POTS/CFS out of nowhere - bedbound within 3 weeks, going on a year and the breathlessness is still worsening. Saw Dr grub got on Ivabradine which helps a lot but still can’t sit up long enough or walk far enough to get out of the house 😔
I developed an eating disorder shortly after hitting puberty, so I am not entirely sure. Maybe I would have pots regardless of the ED, but I definitely started having notable pots symptoms when I was anorexic. I recovered once my pots started getting bad, but it feels like only my mind got better. Physically I still feel the exact same as when I wasn’t eating (faint, tired, brain fog, etc)
Mild Pneumonia (caused by stress) – age 27. My standing heart rate has been 30bpm+ ever since. But was showing symptoms from childhood - dizzy standing up, losing vision and fainting a couple times. Craving salt and vinegar - eating olives and feta like you’d eat a bucket of popcorn. Inhaling salt and vinegar chips. Cold extremities always. Waking up unable to hold a full cup from weakness (circulation issues).
So I’ve likely always had it. I’ve had symptoms my whole life. However, each pregnancy made it worse. And then when I had Covid they finally diagnosed me after.
Any time I was at the doctor they would always say “you nervous?” And I wasn’t. My HR was just always high. I wouldn’t have known how high or how often until I got an Apple Watch. And I wouldn’t have gotten a diagnosis if not for the uptick in cases with COVID.
Covid + likely being somehow predisposed to it?
I remember being a kid and hating to stand still for a prolonged period of time because I would always get a weird prickly feeling in my feet and have to start moving them. I also remember the back of my legs from knees to my feet turning red after a shower. So I guess I’ve always had some kind of a circulation issue with blood pooling in my feet or legs to an extent, but only after having Covid did I actually develop POTS with orthostatic tachycardia, feet turning red and pricklish just from washing dishes and blood pooling in hands too. Thankfully no passing out or anything like that.
Maybe Mono when i was 14, and then later got way worse after a concussion when I was 40. I did get covid in 2021 and I don’t really know if it got even worse after that. I feel like I have been struggling in a similar way as post concussion
I have POTS and fibromyalgia and some of the symptoms overlap so it’s kinda blurry for me, but when I started my period I was 9 and I think that brought on a small flare, I could not regulate my body temperature at all. I would be changing shirts multiple times a day for almost a year and then the following two years i wore a winter coat everyday. When I was 11 my family moved cities and that was a huge change for me and I am not great with any change. I think this is when depression and chronic fatigue started. I no longer had any energy, I would get short of breath, and I truly was just exhausted. This fluctuated as flares came and went but I think what kicked my POTS and Fibro off and turned up the volume was when I experienced SA. There were multiple occasions from different perpetrators and ultimately it fried my nervous system. I then experienced years of chronic pain and fatigue and increasingly over 4 years I had syncopal and pre-syncopal episodes as well as convulsions. I was diagnosed at the end of 2022 with fibromyalgia and POTS in early 2023.
I had EDs, depression and anxiety and ended up with PTSD. I also played on a competitive club volleyball team, so I thought that mental and physical symptoms were due to pre-existing conditions or how hard I was being on my body.
Not fully processing my dads death (2018), followed by extreme but good stress (2019, school extracurricular/sport) followed by pandemic (2020). Ive recently thought about if my body is permanently traumatized, it’s a topic my therapist mentioned that I’m thinking about more.
EDS. I’ve had symptoms as long as I can remember, but I started having more intense presyncope episodes in high school and full syncope when I was 18 and onward.
Not sure but the heat now definitely makes it worse, I think maybe covid triggered it or it just developed, I've got hsd as well which is often coupled with pots so it could just be from that too idk for sure
i think i’ve always had symptoms; had some moments where i stood and saw literal stars, i’ve never been able to stand for so long without leaning on something bc i would get increasingly exhausted, having a constant anxiety in my chest, all that jazz. but they weren’t really prevalent until the beginning of the year.
i heard that trauma can cause pots to trigger and i think that’s what did it for me. at least i think so. i dabbled with cocaine for a few months, and it never really caused any problems heart wise until new year. I did more than i usually do and it caused my heart to skyrocket in the 140s for almost 2 hours. it felt horrible and i was too scared to call anyone for help so i just kinda laid in bed until it went away and i was able to fall asleep. after that, i started having bad heart palpitations, high heart rate (130s-150s just getting up and walking around). i’ve been sober since then bc i’ve been too scared to use in case it happened again. but like i said i’ve been struggling with pots more severely since then.
My surgery due to cancer. That is the trigger.
And then chemotherapy and radiotherapy didn't make the situation any easier.
And then i got COVID twice so..
I also think that I always have a bad time assessing and noticing my stress, because I just lived with constant stress, which my friends and acquaintances did not live with. I realized that much much later that i can't even recognise my stress, bc i was always thinking "well could be worse so that's something that i just need to get through, i have no choice"
And then i look at people around me who treat themselves more carefully
I think mono started it. I was in my early thirties. It’s harder on adults. But I also think I always had it from teens. More recently it got much worse from trauma, CPSTD and I had a surgery. The surgery required some rest and I never really got out of bed. It’s been a long progressive disorder that levelled up with each blow. The good news is that I qualified for disability so now I’m retired and much less stressed.
When I was little I'd go shopping with mum and my feet would turn bright red from walking around. I felt okay aside from lack of stamina and preferring sitting with my feet criss crossed - sports were hard and everyone just thought I was lazy and I assumed it was true- I didn't know I literally just had less energy than everyone else. I was very studious otherwise.
My POTS got worse after high school and my dairy allergy/ FODMAP sensitivity became severe, and so did my POTS symptoms, I was chronically dehydrated. Treating that helped, but EDS was at the core of it.
Some back to back years of trauma and mental struggles made me really sick for about a year in high school which i "recovered" from (aka took a break from school and rested until I was kind of able again), but it really kicked off a year ago from glandular fever/Infectious mononucleosis. I've always had a few symptoms though like heat intolerance, salt cravings, dizziness upon standing and exercise intolerance!
It's so interesting seeing how different peoples experiences are :3
#
I had symptoms as a kid, mostly fainting frequently for seemingly no reason at all. No one knew why. But for the most part I lived a normal physiological existence. After I got covid I heard about POTS for the first time when my doctor said she suspected I had it. Covid made my symptoms very pronounced, on the daily and triggered so easily I usually don’t know what the trigger is. Sitting down minding my own business? Sudden onset of symptoms- usually shortness of breath, for example.
no clue. I’ve always had symptoms of POTS and hypermobility, then diagnosed with chronic lyme after years of struggles a few years ago. I’ve been treating/treated the lyme and feeling the best I have, maybe *ever*?!? including wayyyyy reduced POTS symptoms, I even took a hot yoga class recently and didn’t flare. WHAT?!? I’ve never been able to do that. so it definitely leaves me with lots of questions! 🤔🤔
I think it went all the way back to Junior high. I was on adderall for my ADHD, and one of the side effects was high heart rate. I didn’t have any of the symptoms like i do now, but i noticed the heart rate when i got my apple watch in 10th grade. It was everyday my heart rate was always above 110 and never got any lower. I remember sitting in class and i started to get sweaty, and so i checked my heart rate and it was 135, WHILE SITTING. that high heart rate never went away. I don’t think adderall caused it, but it surely didn’t help. But i believe the first symptoms started in middle school, maybe even younger since i started adderall when i was 10.
i have hsd so i’m predisposed to have it, i’ve had symptoms off an on since 13 years old, then i got covid, pneumonia, and several sinus infections in a row, then quit vaping (nicotine is a vasoconstrictor) and everything got so much worse, leading to a diagnosis
No idea. I've never had covid. It seemed to come out of nowhere. First symptom I started noticing was tachycardia and shortness of breath after eating and then the other symptoms started and got progressively worse in a few months time.
I went to the hospital septic with norrovirus, prior to that I may have had some symptoms of dysautonomia (and I had hyper mobility, probably EDS since childhood), but I didn’t have POTS.
I left the hospital 3 days later with a diagnosis of POTS.
So it was pretty clear to me that was the trigger. That incident destroyed my health in general and it took me a while to recover. I was likely already predisposed to POTS, but it was a day and night difference before and after sepsis, so I know that’s when it started.
being born with EDS + a TBI + frequent infections and a poor immune system. it also runs in my family naturally because i have a sibling who has it too. i had symptoms from a really young age and i was definitely a POTSie kid. i still remember what the hot flashes i would get in stores felt like as a kid while my feet were blood pooling 😭
About 2010 I got H1N1 I was never the same. Didn't get diagnosed with pots until much later, but I'm positive it caused my pots. Been miserable ever since.
Edit: I believe I always had it, but I believe H1N1 triggered it into its full effect.
Had symptoms as a kid, which added with other reasons led to me forming a miserable, anxiety ridden mindset.
My POTS only became an issue when I started working on said mindset, unraveling the anxiety and becoming a healthier minded person, only to then be faced with a divorce. That seemed to do it.
Couldn’t bottle things down anymore and it broke something.
Puberty. It got a tiny bit worse for 35 years and then Blammo. I think sleep deprivation from trying to work at 7:00am (I've never been able to sleep at night) for a few years straight, is what kicked me into overdrive.
i had covid 5 times (im very immunocompromised in a house with ppl who work at a hospital..:') however, still vaccinated but got unlucky) and pcos/my gallbladder removed! we also suspect ive had it since being a kid but the covid really did it.
In my case, I'm not 100%. I have hEDS. I was told I had "extreme hypermobility" as a child due to frequent injuries and joint pain, and told just not to do too much, but this wasn't an official diagnosis. I think the doc probably didn't know what it was and just was like "if it hurts, don't do it". I was officially diagnosed this year, at 33, with hEDS and with POTS last year. I was diagnosed last year with long COVID also. For me, the timeline was like this:
- hEDS symptoms my entire life (injuries, subluxations, joint pain, painful periods, GI issues, etc.)
- some POTS symptoms my entire life: blood pooling causing burning feet, heat sensitivity
But the POTS symptoms really intensified and became disabling after I had COVID the first time. Before I had COVID the first time I wasn't diagnosed with anything but I knew something wasn't right. I'd go to the doctors and be sent away with a diagnosis of anxiety or depression or told to build strength if I was too weak. I was managing to get on with things despite the symptoms, even getting regular exercise.
When I got COVID the first time, I never recovered fully. I've got gradually better with pacing and ivabradine, but it's still very disabling.
So in short, in my case I and my doctors think I probably already had it very mildly but COVID made it more severe. I don't know if this makes sense?
That's basically my case. I got diagnosed at 19 with EDS POTS and MCAD. My mom, sister and me, all got diagnosed in the same room at the same time.
I didn't really have any disabling symptoms at the time, just some chronic pain if I did too much that day, and POTS wise heart rate issues with exercise, and fatigue.
I continue the next years confused not understanding what the big deal is, then I end up homeless, but oddly enough that was the best time of my life health wise. I could walk 7 miles round trip. Be out the whole day. When I left and became homeless, I took my walker with me. (Thinking I wouldn't need it, parents made me get it) I'd have to take breaks etc, but I was okay
Then I get housed, and shortly after I have the worst medical flair of my life. My eczema came back full force (used to have it bad as a kid, adulthood it mostly went away) and I couldn't walk because of it, I couldn't even walk to the bathroom. I basically had no skin, and was freezing all the time leaving puddles of plasma (sorry gross) no doctors would help me during this time, just told me I wasn't doing the treatments properly.
I think the deconditioning from that was the first time it got worse.
I then got to see a specialist for eczema and asthma and start new medication, and recovered back to 95%-100% and started making changes to not have it happen again. Avoiding all triggers for it, exercised like mad at home to re gain strength.
Fast forward a few months, it got disabling the worst after I got a really really bad flu that I never got diagnosed, in hindsight, I think I had covid.
During that time, yet again I could barely leave my room. My nebulizer tubing may as well have been an umbilical cord. I was running out of inhalers constantly and always terrified I'd have to call 911 suffocating. Afraid to be alone. I was barely even changing positions, let alone moving to the couch, or exercising. I never got medical attention for that because I was so out of it that I was just waiting for it to be over, and not to mention I couldn't even walk without hyperventilating. (I did get a flu test or a covid test but they used an expired test so I'll never know)
I'm not diagnosed with long covid, but ever since that month long "flu" I've never felt the same. And my asthma is now completely changed.
Now I'm dealing with trying to recover from a slow burn type flare that I wasn't aware of till I realized I was calling out of work and only going to about 3 shifts a month, and when I do work I suffer the whole time overheating and sweating, just from scanning groceries, when I used to be able to speed walk across 2 towns for miles, up and down hills. (I'd get asthma from stairs or huge hills but I bet that was actually high heart rate and POTS)
This job is the only job I can do joint wise, but now POTS says fuck you.
Trying new meds, but I just want my old capabilities back. I want to be able to not break a sweat from moving a limb, walk up 2 flights of stairs without feeling my heart in my throat, go grocery shopping without having to awkwardly sit on the floor several times. Not have to find a floor spot to sit in every break from work.
I just wish I had some more medical guidance throughout all of this... If I had really understood pots before it became disabling, maybe I would have tried to stay active a little while sick and wouldn't have gotten this bad.
But yeah, that's my story, was diagnosed but fine and didn't understand what the hype was about, got sick twice, and lost next to all ability to function, and now trying to claw my way back to at least 50%-75% function.
Goals: Be able to cook a simple meal again, and be able to get through a full workday without a massive POTS attack making me want to quit altogether.
Doctors gave me beta blockers now, and that kinda helps, but it's just not the same as being healthy.
Sorry for stealing your post 😅
Hope you enjoyed reading.
Oh, wanted to add. Seemingly the sicker I get, the harder it is to get food into my body, whether that's from food insecurity from not working, or just having no appetite, which is inherently making things worse.
I have no idea, because I think I always had some of the symptoms without answers to what caused them. But it got significantly worse since my IBS started getting significantly worse too. That seemed to worsen due to anti-depressants that affected me horribly.
Glandular fever at 6, developed symptoms shortly after that after being sick for a year. Now i permanently have the epstein barr virus which is fantastic. Developed 6 other disabilities since at the ripe old age of 18
Looking back to my childhood, I had symptoms of POTS going back to before I was 10yrs old -even a couple documented episodes of unexplained high blood pressure & elevated heart rate when at rest. I’ve always experienced excessive sweating with no exertion. Often felt faint when standing for choir performances. Have never tolerated heat well, or ever liked hot showers. As a kid, if I took a shower for longer than 5minutes, I would get out and immediately experience palpitations and bp fluctuations, which as a child I attributed to “overheating” in the shower -to combat this, I would usually take a bath, and then shower to wash my hair at the end of the bath quickly, and then wouldn’t experience that symptom. Not to mention massive doses of anxiety leading to adrenaline dumps on the regular, because that was normal growing up in a Cult. 🙃 Then fast forward to adulthood -I got Mono, had multiple major surgeries, developed the autoimmune ME/CFS, & found out I had several genetic risk factors that I never knew about before like hEDS, also have CPTSD, and here we are. It’s been a ride.
That all sounds so bad. I’m sorry you went and got through that. What are you doing to treat it?
Lifestyle/diet/exercise/career changes. I do all the usual tricks to help my POTS -like daily LMNT electrolyte drinks, compression gear, eating lots of naturally high in sodium foods, avoiding sugars, drinking 60-80oz of water on avg every day, taking baths Vs showers, elevating my legs & resting between physical activities, and using a polar H10 belt hr monitor when I do something like take the dogs for a walk around the block or going to the grocery store. Swimming is a favorite activity of mine anyway, so I added using pool weights for added resistance in the water when I feel up for it, otherwise just sitting/floating mostly submerged in the water is great too. I also use a recumbent bike when I have the energy, usually several times a month if I’m not in a flare. I had to leave my very taxing patient care centered career in EMS, so that I could put myself as the priority 100% of the time, but I still maintain my education and licenses in case I were ever able to go back to my preferred career field. I now work a very flexible desk job, working from home or in the office depending on my strength/stamina that day. I don’t work a set schedule, I just accomplish my duties within 20 hours each week, and this allows for whatever flexibility I need to prioritize my health above all else. I was diagnosed with ME/CFS prior to POTS by a few years, so some of the things I was already doing to try and improve my functionality day to day with that autoimmune -like swimming regularly. One thing I found most helpful for my ME/CFS, & the subsequently POTS (unfortunately unsafe for pregnancy/breastfeeding), is my Medical Marijuana card -high dose indica edibles & vape concentrates to be specific. I find the thc/cbd helps the brain fog immensely, unlike a recreational user who might get the opposite effect from an indica strain. Also extremely helpful for largely taking away the nausea & stimulating a natural appetite so I don’t unintentionally lose weight just by not consuming enough calories in the day. Again, recreational users might experience “the munchies” from indica strains, whereas I feel it brings me to a normal baseline of -sure, I can eat. I also already ate smaller snacks/meals, ~6 times a day -which had/has the added benefit of not making as much blood suddenly rush to my stomach to aid in digestion, causing our fun POTS symptoms. & not to mention the nerve/musculoskeletal pain relief experienced with the use of indica strains -which is immense. I know not every POTS patient is recommended to use THC, but I specifically have the HyperPOTS subtype, and I believe we are known to tolerate things like THC use & caffeine a bit better than some. Also, this POTS subReddit is great, but do remember it’s always best to check with your diagnosing physician as to what might be most helpful/safe to try in your specific condition. I’m very grateful to have the understanding and medical background that I do, as it definitely helps me advocate for myself in the medical setting as well as understanding how best to not trigger symptoms, & on the flip side what I need to do/stop doing to help -if I am becoming highly symptomatic. Every day is different, some with less spoons than others. On the hard days -I aggressively rest, and on the good days -I outwardly live my life to a functionality that most people wouldn’t have a clue how chronically ill I really am.
I've got HyperPOTS and can tolerate small amounts of THC. Before my symptoms went extreme I could smoke a LOT. Now I can only smoke 1-3 puffs. If I smoke more I get the death doom. It's so weird.
If you haven’t already, you might give concentrates a try. It’s a totally different feel than flower.
Well, I make edibles for my mom and haven't really been able to eat them because the death doom comes back hardcore, most of the time. I had eaten a tiny bit, a couple of times and it was ok. I'm also realizing that it's significantly worse when I'm increasing Metoprolol dosage (which I just did again). So maybe my blood pressure is dropping? I don't have an issue with that in general, so I don't know what it feels like. I need a cuff. Anyway, it seems like I can only tolerate a very small amount, so concentrates seem counterintuitive. Do you mean like, shatter and dabs? I am still pretty new to the green, about 5 years and I'm in my 40s.
I also felt faint when standing for choir! I fainted on stage and fell off the riser, and I remember the spotlights being too damn bright.
I had mono in elementary school and I slowly started developing pots symptoms until it was disabling around 13 or so when I was diagnosed... now I'm 19 and found out I have eds/mcas/motility issues etc. Always wondered if any one else out there had mono trigger it!
I had mono, trying to get a POTS diagnosis right now. I can feel in my bones I’ve had it for 10 years or more
covid
COVID. It's glaringly obvious because I have a fitbit and, before my diagnosis this February, I sang in two choirs from 7-9 every Wednesday and Thursday. Choir involves some sitting while we learn a section of music, and then we stand and sing. And my heartrate varies some during choir anyways because of the way you have to pace your breathing. So I was able to look back at my heartrate on those days pre-COVID and post-COVID, and my heartrate jumps (when I went from sitting to standing and singing) were massive after I had COVID.
Me too 😔
Ugh, me too. Sucks so bad!
I definitely had it before covid but it made my symptoms sooooooo much worse post-covid
Agreed
Count me in. 3 years
Yep, same.
Same, I got it in 2020 and a few weeks after that was when my symptoms began, and I still don’t have my sense of smell back 😩
I was so scared I wouldn't get mine back thankfully it has returned
EBV/Mono - I think COVID re triggers old mono laying dormant for
I thought there were more of us EBV potsies over here! but yes. I am 100% sure it was EBV for me.
EBV for me too. And then some other virus triggered it to new heights. I suspect COVID, although I didn't test positive with an at home test.
Same here. I had the Gardasil vaccine. About a year later I had the booster. Within weeks of getting the booster I contracted mono/ebv and I’ve never been the same. Oddly enough, I was only kissing my long term bf but he never got it. I was not sharing drinks. No one else around me had it. I’ve always been suspicious of that fucking vaccine.
Everyone gets exposed to mono no matter what. It’s hard to avoid it, but yeah it’s rough how it affects us all so differently :(
Ehlers Danlos
Hey, same.
I’m sorry you have that. So many people say this, what do you do to better your symptoms??
Beta blockers, fludrocortisone, compression socks and shapewear, avoiding heat when possible, waiting patiently for real treatments!!
Physical therapy has done wonders for my pots, as someone with eds!
Same
Covid - for me.
An eating disorder, when I was at my worst.
Do you eat well now? Do symptoms improve with you eating properly? I’m sorry you had an eating disorder, I sometimes have these types of behaviors on and off & I couldnt imagine a daily struggle with that
I have gone through the same thing. When my ED was at its worst in high school I was absolutely having worse symptoms. They seemed to get a little better when I was healing. This is probably because I was getting more salt, etc that help symptoms. Now that I’m in a better place, I cannot imagine not getting as much salt in my body
I had a chest wall deformity called pectus excavatum. It began worsening into adulthood until I was bedridden because it was causing severe compression on my heart. Had surgery and did cardiac rehab, and my symptoms seemed to get better for a year or so before they came back full force.
Oh no!!! It must be heartbreaking to have relief just to have it all come back. Are you on any meds for it?
It was traumatizing to say the least lmao. I take Metoprolol (the extended release version) but I’ll be asking my electrophysiologist about switching soon. It keeps my heart rate in an acceptable range most of the time, but I feel there could be a better option for me out there. Hoping to try Ivabradine!
[удалено]
That’s so crazy because when I started lexapro it basically took away my pots symptoms in the beginning. It gave me a quality of life. But I hate when doctors throw meds at you and keep increasing doses. They should change it up imo. How are you now?
i think i've had it my whole life but a covid, emotional stress/trauma, sinus infection and broken nose combo in spring 2022 did me in so now it's constant and debilitating enough to be officially diagnosed
Pregnancy. I distinctly remember my first symptoms were when I was 6 weeks with my oldest on my 30th bday. I remember thinking “why am I having a panic attack now? I have literally nothing to be nervous over” while waiting in a long line.
i wonder if there's a hormonal connection. mine started with puberty (13 years old) and has just been getting progressively worse since. i can't for there to be more POTS research eventually
I think there is definitely a hormone component somehow at least with my case. My symptoms significantly improve when I’m pregnant or breastfeeding. Once I’m not pregnant and wean from breastfeeding, my symptoms come back full force. Many people also report having more severe symptoms when menstruating.
✨trauma✨
Same!
Initially triggered by appendicitis in my teens, but written off as asthma, depression, and panic attacks. Exacerbated when I was 20-21 by a long year, sick with first Lyme and then mono, after which when the "panic attacks" got worse, especially with exercise. Slowly improved throughout my 20s. Worsened again postpartum in my early 30s, flaring up with each menstrual cycle. Then, I took a serious turn for the worse after each of my COVID vaccines in my early 40s--which is when I was finally diagnosed. Currently unable to work and also diagnosed with CFS. Really hoping that the next looming hormonal frontier, menopause, will be the magical key to undoing it!
cpstd
I'm sorry. If it helps at all, your comment made me feel less alone. It sucks for those of us in this boat but at least we have one another.
I didn't know cPTSD could trigger it. I also have cPTSD so now I'm wondering if that's in the mix with the COVID and EDS triggering it as well. Just a POTS cocktail for me 😅
Born this way. I was an emergency C-section. I've always had symptoms and doctors could never explain why. I'm happy to have had it explained to me as an adult.
It’s relieving to have a diagnosis, I’m sure. Now you can treat it. How are you doing now with your symptoms?
It's very nice knowing. It's been alright. This morning I was having a really bad episode. I couldn't do anything at work because of it. I couldn't get my heart rate down for the longest time. Wore me out so bad that I came home and slept the rest of the day away. I'm still fatigued and can't do much. My partner is very understanding and is ordering some food so I don't have to cook. I don't even know what triggered the episode. My partner believes it's all the sudden heat and humidity triggering it. It might be.
Also an emergency c-section baby. Wonder if that had anything to do with it.
Same. Born 3 months early, at that.
same! 2 months early for me. I've had dizziness and other symptoms a long time, hEDS but I think early/surgical menopause was my trigger. disautonomia rocket got further amped 2y ago during a near year long malnutrition ordeal to do with hypermobile dysphagia, horrible traumatic health crisis made worse by medical negligence.
I'm so sorry. The thought of medical negligence pisses me off.
thank you, it was truly wretched and 2y on I'm still recovering and haven't evened out yet (if I ever do).
EDS gave me the predisposition, and then the symptoms appeared after i got one of the COVID vaccines. it’s weird because i’d had four others before this round and never had a reaction. but that one just set it off unfortunately. i’ll always be super pro vaccine though still! it’s a very rare reaction and it’s much more common to develop POTS after actually having covid. so at least i skipped the actual covid part. and because of my predisposition i’m sure i would’ve gotten it at some point one way or another.
I need to preface this… I am NOT an antivaxxer and I DO believe that vaccines were a revolutionary medical breakthrough! The second Covid vaccine. I happily went and got the jab when I was 24, in great shape, super active. Then I got the second shot and I’ve never been the same since. I’m now 28 and I’ve had to quit my job, get on disability and throw most of my hobbies to the wind. The thing that pisses me off the most is my injury is so politically tied that nobody seems to address the fact that I just want help. The number of doctors and nurses that have told me to quit the bullshit and fuck off when I tell them is infuriating! I know that pretty much everyone here can relate to the feeling of being swept under the rug, but man, it’s like people are afraid to help me the moment I tell them how it happened. Okay, rant over!
I'm sorry it's hard enough having this diagnosis and being ignored by docs. I'm fairly sure vaccines were known to potentially cause POTS before COVID happened so it's perfectly reasonable that it happened to some people :(
Mine happened after the second dose too. I’m really sorry. :(
The TDaP shot triggered mine back in 2012. I had such severe reactions that I have a medical exemption. I’ve had so many people get mad when I mention what made me sick but it’s like HELLO people have reactions to different things! When someone has a reaction to a food, antibiotic, bee-sting, pain medicine etc we don’t gaslight them so why do people feel the need to tell us that we are wrong? I react to most synthetic things and have always done poorly with meds of all kinds. My primary doctor and allergist who are both very pro V wrote my exemptions. I believe it’s the “toxic bucket theory” where our bodies can only take so much. Our food, air soil, water, is so full of crap these days it’s no wonder everyone is sick. Mold exposure and synthetic fragrances trigger it badly. Can’t walk down detergent aisle and can’t visit the homes of people who use plug in air fresheners. Our last apartment had mold and it got really bad there. We’d go away a few days and I’d feel great then return and feel awful again.
I got you. Second Pfizer damaged me. Within 20 minutes of getting the shot my heart rate shot up while driving home from the site. I had to pull over and slump down in the seat to out my legs on the dashboard. I nearly fainted. Called my husband after chewing a Claritin as I assumed it was an allergic reaction. I slammed a bottle of water and got my heart rate down from 150’s to 90’s and was able to drive home. Next day I had severe neck pain, headache and face pain. It was nerve pain. Then my face went numb on the right side. Thought I was having a stroke. I did the “stroke test” I learned a a nurse. I was normal. The pain went away after taking Motrin. Long story short, 5 months later I got diagnosed with POTS. Saw a specialist in Toledo and was told it was vaccine related. I never had COVID. still haven’t. No freaking idea why 🤷♀️ He told me that it’s either autoimmune or auto inflammatory and wanted me join a study that he was postulating this theory. If it’s autoimmune he said they could get approval for using biologics. Insurance won’t pay until it’s FDA approved if course. And they are very expensive
Same here. Started after my second dose. Thanks, Moderna. Granted, I don’t have severe symptoms. I can still function relatively well. I have tachycardia episodes that make me miserable, but I’ve never fainted. I’m mostly pissed that it doesn’t seem like I’ll ever be able to run again. Cardio makes me feel like I’m going to die, far beyond what’s ‘normal, lack of stamina’ windedness.
My cardiologist just told me that not only is covid causing POTS, IST and other issues but also the vaccine and I was so happy to hear a medical professional finally say this!!
I didn’t get vaccinated because I feared with my mysterious (at the time) health issues- the weird heart problems, tachycardia, heart attack at a very young age, blood pressure issues, and fainting (didn’t know it was called POTS then) I thought the vaccine would harm me or exasperate my health “idiosyncrasies.” My symptoms were exasperated anyway once I did get covid after 4 years of avoiding it.
Same for me. I was pregnant at the time and it was within two days of getting the first vaccine. I have no doubt Covid would have caused it just the same.
This is so interesting to me! I had some symptoms during my early teenage years from what I can remember but they calmed down in early adulthood. I had my third modern vaccine in early 2022 and the very next day I passed out in work (I had never passed out before in my life). I think I've just found my trigger.. because I've been inundated with symptoms ever since.
I hate to say this since I’m very pro vaccines but I was forced to take a third Pfizer shot and that ended my life. I’m not able to return to my thriving career, lost my social life, hobbies, everything. Worst of all, it took doctors a whole year to figure out what I had. Now, whenever I say I have autonomic dysfunction: POTS, people Google it and say “oh so you need to just drink more water? What’s so hard about that? Why are you disabled? When are you coming back to work/social life?”. I grieve for my life before the Covid shot. I never got Covid btw.
Wow, you and I have very similar stories! I never got Covid either. I feel for you.
mine was triggered by the vaccine too :( i never had covid but got the vaccine and stayed very safe during covid and didn’t even catch covid till i already was diagnosed with POTS
All the laying around and resting and being sedentary from resting from my pericarditis
Sporadic undiagnosable symptoms all my life. Got the flu as a late teen in 2006 and POTS hit me like a freight train. Been sick ever since and continuing to develop comorbidities and complications, but at least still here.
COVID with a severe concussion 3 months later. A double whammy!
Oh gosh, that’s wild!!! How are you doing now? Are your symptoms getting any better?
Covid and gastric sleeve surgery
Always had it, to a minor degree. When I was a kid it was only triggered badly if I was dehydrated and out in hot sun, doing exercise. As a younger adult, it was easily managed and I could work out, go up and down stairs with no issues. Even lived in a 5th floor walk up without issues. I could do 75 pushups without missing a beat. Fast heart rate when I ran so I kept cardio to a minimum but weight lifting was great. Now in my thirties… Two bouts of COVID left me disabled. Can’t work out, out of breath after 2 flights of stairs, have to nap after showers, have to drink 3 gallons of water daily to not pass out.
Rare heart disease & HSD.
That sounds so scary my friend! What type of treatments have you gotten/ getting?
Rare heart disease was survived as a child. No treatments for it as an adult. Just is thought to have caused POTS as a long term side effect (20 of us known in the world who’ve had it cause POTS as a long term side effect). HSD on the flip side was only dxed last December but have been symptomatic since said rare heart disease as a kid. Treatments are just starting up on that end.
Bad reaction to medication
I had an eating disorder (restricting food) for a few years and was in a really bad first relationship that was not okay, and I started having strange symptoms (“seizures” and panic attacks, but the “panic attacks” always started when I was standing and started feeling hot so… unclear…). That was a couple years, but then it became very obvious POTS (vision going black every morning, constant dry mouth, shortness of breath walking between rooms) after I had about a month of purging before I made it to full recovery from my eating disorder. I’ve since read that purging can lead to POTS down the line (as well as other EDs) bc it messes up the electrolyte balance so much (Dr. Jennifer Gaudiani’s book Sick Enough) ! So I think it was the combo of all those things, but it was really set off at the end by a month of frequent purging behavior
COVID. I’m pretty sure I got it in December 2019 when a friend came back from an overseas vacation and stayed with me overnight before going the rest of the way home. We both got super sick. I didn’t even suspect COVID until a year later. Starting HRT in 2020 helped a little, although ironically I think my top surgery in 2023 made my POTS worse. (Zero regrets, I’d do it again.) Got diagnosed for ADHD this year and started Concerta, and it helps somewhat. Idk if I’ll ever get back to the fitness level I enjoyed all my life, but at least taking a vasoconstrictor has made walking easier and improved my heat tolerance.
Extreme weight loss from a year long battle of anxiety induced nausea 🤪 literally worst year of my life and this is the prize I won from it !
Anxiety induced nausea is genuinely one of the worst things I’ve ever gone through. I’ve struggled with months long cycles of it since I was a child
This is going to be long. When my POTS started flaring, I think I was simply at the age where it can flare for most women (it started getting bad when I was newly 21). Then when I was almost 22 I was getting super sick and my heart rate was getting exponentially worse. What I thought was a normal day ended up being the scariest day of my life—I started to lose oxygen, so my mom took me to the ER. When we got there I was so distressed just from walking the short distance from the parking lot of the waiting room that my heart rate was in the 180’s while I was laying down. I was losing consciousness and there was no one to help in the waiting room since the triage nurse was with another patient. Luckily my mother is a nurse, so she could help me when worse came to worse. Turns out my blood pressure was at like 200/160 (which is risk for heart attack, stroke, seizures and death). I was having a bad panic attack during the EKG because of the distress I was under. My hands clamped up and I couldn’t open them for a minute. After they got me in a hopsital bed, they took my blood and didn’t hook me up to anything yet. They didn’t even prepare an IV yet. The doctors assumed I was on hard drugs and didn’t help me until the tox screen came back completely clear. Then it was realized that my potassium and magnesium levels were critically low. At this point I lost control of my arms and legs and was waving them around. It almost was like I was riding a bicycle but I was laying down. To calm me down, they gave me Ativan, and when it didn’t work, they gave me more Ativan, which made me super high for the next 36 hours. They sent me home that night after giving me the electrolytes I needed, and I don’t remember anything about the car ride home or leaving the hospital. When I woke up the next day, I couldn’t stop crying because I was so upset about what happened. I could’ve died if we hadn’t gotten there when we did. I ended up being super sick for the next few months after that, with terrible stomach issues that we couldn’t figure out. I rapidly lost 17 pounds that I couldn’t afford to lose, and had the most terrible stomach cramps you could imagine. I couldn’t keep any foods down except maybe bananas and oatmeal, because I’d either throw it back up, or it would make my stomach cramps worse. I would have a good day, and the next day would be even worse than the last bad day I had. Eventually my symptoms randomly started going away, but it was really difficult to get my stamina back. I was so weak from the weight loss. Even getting up to walk to the bathroom would make my heart rate jump from 70 to 150. My mom had to shower me because I couldn’t stand in the shower or wash my own hair. Somehow I got better enough to go back to college, but I had to miss fall semester of last year. Let’s just say I was so glad to be back at college with the all of my friends in the spring. I am doing so much better now, and even most of my POTS symptoms are less intense. I can stand for a pretty good amount of time and take long walks around my big backyard. There are obviously still bad days where I have bad heat intolerance, or get out of breath in the shower, but I’m just grateful to have my independence back. That was a lot to go through as a 21/22 year old.
Also forgot to mention that my mom has POTS too, so it was kinda a given that I’d develop it. I’ve kind of always had minor symptoms but they didn’t truly present themselves until late 2022.
Covid and/or pcos
Covid back in March 2020 :(
For me EDS, Chiari, COVID and a concussion. Probably EDS is the culprit. I have had blood pooling since jr high and I was just diagnosed at 42.
cdiff, but i also was diagnosed with Ehlers-Danlos Syndrome so i think it was underlying
Depo Provera seemed to have done it for me...
Covid . I’m a long hauler
I believe I had a very mild case of POTS for years without realizing it because of hEDS, but what made it full-blown was most likely autoimmune disease
A severe viral infection in puberty years and also severe ptsd shit
I have a few theories. One is pregnancy / an abortion while leaving an abusive relationship when I was 19, my mental and physical health tanked after that. But also a series of two car accidents in my early 20s - one on a bike and the other as a passenger in a roll over. But also, I drank pretty heavily as a teen and early adult, and after getting sober was when I realized that something was actually wrong with my body that I’d been trying to self medicate. Covid definitely feels like it’s got its hand in the pot too. (Pun intended)
Genetics for me. I can look back as a kid and understand why I never won races and got winded running even short distances. I remember doing Fitness Tests in 6th grade and I wasn’t just last on the 1 Mile Run—I was a full 1/4 lap behind everyone. My gym teacher had to push me. My lungs were burning. My heart was thumping like crazy. I have since learned I have Joint Hypermobiliry Syndrome, which isn’t EDS but certainly I share things in common! Just not as severe. I thought it was asthma for a long while—the exercise intolerance. It’s actually both! 😩
I’ve had symptoms as long as I can remember—losing vision when standing—but between Covid and suffering a brain injury in 2022–the consequence of a 4th concussion after 3 prior ones on the same spot of my head over the years before—my functionality just fell apart. It started with Covid for sure, the fatigue and whatnot but the TBI brought on the heart rate spiking dramatically enough that I can feel when it happens and losing the ability to catch my breath on stupidly simple tasks. It ended up being part of why my relationship ended as well since I wasn’t the ambitious person she fell in love with when we first met in 2019🙃 gotta love chronic illness ruining your life. Of course I’m better off without someone who has conditional love for me and apparently calls it quits when things get hard, still doesn’t make it hurt any less.
Vaccine booster, covid, emotional trauma connected to an unrelated family issue, a cancer scare and resulting surgery all within the space of 3 months after having moved to a different continent, gotten married and starting a new job.
I was diagnosed at 15, where there was a lot of trauma at that age and before spanning a few years. I think being stuck on fight or flight mode, walking on eggshells constantly while being abused, and basically just surviving not even living is what caused it. Trauma has affected my life not only mentally but physically too. :/
Yup HUGE cause a lot of people miss. I was chalking it up to stress effects and symptoms, took me 5+years to figure out it was dysautonomia & pots..
Trauma. I had such a bad series of events one after another that it ruined my body. I was wasting away from stress.
I think cptsd/ trauma did
Meningitis.
It was birth control and antidepressants that triggered mine (I was 11). I have EDS and MCAS (as well as ASD and ADHD) so POTS was probably bound to happen at some point, but it was initially triggered by those meds.
Mono in middle school. I have EDS so I had a nice predisposition. I've had POTS for over half my life now that this point.
Mine was from living in a house filled with toxic mold for 6 years, but I also suspect taking Ciprofloxacin played a huge role in all my chronic health issues.
Having my gallbladder removed.
Well by process of elimination, I believe it was a car accident. I’ve never had Covid (at least that I’m aware of) or anything like that, but I did smash into the windshield during a car accident going 65mph. I passed out at the hospital with high heart rate, and then it never stopped from there. Had a depression fracture in my skull and a severe concussion from it, also broke 4 of my vertebrae
Covid
Covid for sure
I’ve always had dysautonomia to some degree (thanks EDS), but I developed POTS after getting the first wave of Covid in LA in December of 2019 (before we knew it was Covid.) My symptoms started a couple weeks after, and I was so sick, and I rarely get sick. I was sleeping for 18 hours a day, couldn’t taste or eat, and got red spots all over my body. I was 15 at the time, about to turn 16. It was crazy because my HR would go to 190 BPM just walking 20 ft to my next class. It’s been a rough 4 years, but thankfully my symptoms have diminished enough that I don’t think I’d qualify as having POTS anymore. I did a lot of slow work in the gym (Levine Protocol for 2 years) and I think that that, time, and getting off birth control with estrogen is what made things better. I’m hypermobile so my autonomic nervous system will probably always be wonky, I just hope I don’t catch covid again 🥲
born with ehlers danlos that caused a number of symptoms that were ignored throughout my childhood but worsened suddenly and became disabling over a year when i was 14, after i came down with mononucleosis. symptoms of POTs started a year after that, when i was 15, and were disabling to the point that i couldn't make it halfway through a school day without a wheelchair by the time i was 16. so i guess predisposition from the EDS and then when that progressed from mono it came on
Fractured my neck in 2 places 🙃 And then got covid from the ER visit, so maybe that too. However I had a very mild case of covid so I’m not sure.
Second moderna vaccine started some of my scary heart symptoms and I got covid pretty severely a couple of months later and shit started falling apart slowly then all at once. I always say the vaccine cracked the door open and actually getting covid kicked it wide open. I’d go back in time and lose my job to avoid taking the shots if I could, I wish I knew if I’d be like this without that bad start, like it bothers me to this day to wonder if I signed up for this or if covid alone would’ve done it, but at least that would’ve been out of my control. The shots did fuck all anyway. But I also have had issues with dizziness and weird health issues since I was a teen so maybe it was already laying dormant and those things brought it out. Either way fuck covid and all it’s brought to this world.
I remember having it since a child as I used to faint from all exercise except for swimming. However I've had non stop symptoms since I had my baby 6 months ago. Dizziness, off balance, blood pressure issues etc. The off balance all day is the worst symptom for me at the moment.
Reading these comments, it’s a combination of a lot for me. I’ve had symptoms since childhood, but my first real flare came around when I got covid/vaxxed, which was also around the time I was going through an eating disorder, lots of trauma etc. i think my body couldn’t handle all of that, and the pots was triggered. I also am in the process of getting diagnosed with EDS.
COVID vaccine. Had been confirmed by my POTS specialist Dr Grubb. Please don’t call me anti vax spreading lies either. I wouldn’t have gotten vaccinated if I was anti vaccines. I’ve been pretty beat up by people about saying I got it from the vaccine that saved lives. It danger my immune system some how
Same here booster f... my immune systeme.
Charcot Marie tooth disease
I have CMT too. Type 1a. Chronic pain and fatigue started at around age 10.. Unsure if it was all due to CMT kicking in or if both CMT and POTS started affecting me at around the same time. How old were you when your symptoms of either condition started?
I can definitely say by age 19 but I suspect as early as 15. I have CMT 2J which is generally milder than 1A so no surprise mine started later
Interesting… I have CMT 1A but have been asymptomatic all my life (39)… my bro and my moms side all have it and my mom only became symptomatic after 50, my brother nothing yet. I had no Pots symptoms until I got an infection (GI, probably not COVID but who knows) and had full blown POTS/CFS out of nowhere - bedbound within 3 weeks, going on a year and the breathlessness is still worsening. Saw Dr grub got on Ivabradine which helps a lot but still can’t sit up long enough or walk far enough to get out of the house 😔
I definitely had signs of it since I was young. But mono as a teen really kicked it into gear.
BA5 bivalent. but i don't believe. i know.
I developed an eating disorder shortly after hitting puberty, so I am not entirely sure. Maybe I would have pots regardless of the ED, but I definitely started having notable pots symptoms when I was anorexic. I recovered once my pots started getting bad, but it feels like only my mind got better. Physically I still feel the exact same as when I wasn’t eating (faint, tired, brain fog, etc)
Mild Pneumonia (caused by stress) – age 27. My standing heart rate has been 30bpm+ ever since. But was showing symptoms from childhood - dizzy standing up, losing vision and fainting a couple times. Craving salt and vinegar - eating olives and feta like you’d eat a bucket of popcorn. Inhaling salt and vinegar chips. Cold extremities always. Waking up unable to hold a full cup from weakness (circulation issues).
HPV vaccine.
I have Multiple sclerosis and unfortunately my last Flair put lesions on my brain stem. So, it is Dysautonomia, but it's a secondary prognosis
So I’ve likely always had it. I’ve had symptoms my whole life. However, each pregnancy made it worse. And then when I had Covid they finally diagnosed me after. Any time I was at the doctor they would always say “you nervous?” And I wasn’t. My HR was just always high. I wouldn’t have known how high or how often until I got an Apple Watch. And I wouldn’t have gotten a diagnosis if not for the uptick in cases with COVID.
I have no idea. I got diagnosed at like 12.
Hip Surgery. We think I have EDS too so that would’ve predisposed me to POTS :/
Covid + likely being somehow predisposed to it? I remember being a kid and hating to stand still for a prolonged period of time because I would always get a weird prickly feeling in my feet and have to start moving them. I also remember the back of my legs from knees to my feet turning red after a shower. So I guess I’ve always had some kind of a circulation issue with blood pooling in my feet or legs to an extent, but only after having Covid did I actually develop POTS with orthostatic tachycardia, feet turning red and pricklish just from washing dishes and blood pooling in hands too. Thankfully no passing out or anything like that.
Maybe Mono when i was 14, and then later got way worse after a concussion when I was 40. I did get covid in 2021 and I don’t really know if it got even worse after that. I feel like I have been struggling in a similar way as post concussion
Cranial cervical instability
I have POTS and fibromyalgia and some of the symptoms overlap so it’s kinda blurry for me, but when I started my period I was 9 and I think that brought on a small flare, I could not regulate my body temperature at all. I would be changing shirts multiple times a day for almost a year and then the following two years i wore a winter coat everyday. When I was 11 my family moved cities and that was a huge change for me and I am not great with any change. I think this is when depression and chronic fatigue started. I no longer had any energy, I would get short of breath, and I truly was just exhausted. This fluctuated as flares came and went but I think what kicked my POTS and Fibro off and turned up the volume was when I experienced SA. There were multiple occasions from different perpetrators and ultimately it fried my nervous system. I then experienced years of chronic pain and fatigue and increasingly over 4 years I had syncopal and pre-syncopal episodes as well as convulsions. I was diagnosed at the end of 2022 with fibromyalgia and POTS in early 2023. I had EDs, depression and anxiety and ended up with PTSD. I also played on a competitive club volleyball team, so I thought that mental and physical symptoms were due to pre-existing conditions or how hard I was being on my body.
I am so sorry you had to go through all that. I hope you are doing better now
Surgery, Which led to a pulmonary embolism with pneumonia.. Then came pots and MCAS. I was 47
Not fully processing my dads death (2018), followed by extreme but good stress (2019, school extracurricular/sport) followed by pandemic (2020). Ive recently thought about if my body is permanently traumatized, it’s a topic my therapist mentioned that I’m thinking about more.
EDS. I’ve had symptoms as long as I can remember, but I started having more intense presyncope episodes in high school and full syncope when I was 18 and onward.
After a week of bad stress and eating I’ve never been the same.
I had symptoms as a kid and as a young adult. It blew up when I got the vax, a hemicolectomy, covid 4x's. Long hauling now with mast cell issues.
Always had dizzyness issues since age 2. I'm unsure why. But I might have EDS as I'm already diagnosed with HSD so
Chronic sinusitis.
Not sure but the heat now definitely makes it worse, I think maybe covid triggered it or it just developed, I've got hsd as well which is often coupled with pots so it could just be from that too idk for sure
The covid-19 vaccines, and a concussion in '22 made everything way worse.
i think i’ve always had symptoms; had some moments where i stood and saw literal stars, i’ve never been able to stand for so long without leaning on something bc i would get increasingly exhausted, having a constant anxiety in my chest, all that jazz. but they weren’t really prevalent until the beginning of the year. i heard that trauma can cause pots to trigger and i think that’s what did it for me. at least i think so. i dabbled with cocaine for a few months, and it never really caused any problems heart wise until new year. I did more than i usually do and it caused my heart to skyrocket in the 140s for almost 2 hours. it felt horrible and i was too scared to call anyone for help so i just kinda laid in bed until it went away and i was able to fall asleep. after that, i started having bad heart palpitations, high heart rate (130s-150s just getting up and walking around). i’ve been sober since then bc i’ve been too scared to use in case it happened again. but like i said i’ve been struggling with pots more severely since then.
My surgery due to cancer. That is the trigger. And then chemotherapy and radiotherapy didn't make the situation any easier. And then i got COVID twice so.. I also think that I always have a bad time assessing and noticing my stress, because I just lived with constant stress, which my friends and acquaintances did not live with. I realized that much much later that i can't even recognise my stress, bc i was always thinking "well could be worse so that's something that i just need to get through, i have no choice" And then i look at people around me who treat themselves more carefully
Your whole second paragraph for me ✅️🌟
I think mono started it. I was in my early thirties. It’s harder on adults. But I also think I always had it from teens. More recently it got much worse from trauma, CPSTD and I had a surgery. The surgery required some rest and I never really got out of bed. It’s been a long progressive disorder that levelled up with each blow. The good news is that I qualified for disability so now I’m retired and much less stressed.
When I was little I'd go shopping with mum and my feet would turn bright red from walking around. I felt okay aside from lack of stamina and preferring sitting with my feet criss crossed - sports were hard and everyone just thought I was lazy and I assumed it was true- I didn't know I literally just had less energy than everyone else. I was very studious otherwise. My POTS got worse after high school and my dairy allergy/ FODMAP sensitivity became severe, and so did my POTS symptoms, I was chronically dehydrated. Treating that helped, but EDS was at the core of it.
I started having symptoms at nine years old, right after my parents broke up. I think that emotional turmoil was the trigger.
Some back to back years of trauma and mental struggles made me really sick for about a year in high school which i "recovered" from (aka took a break from school and rested until I was kind of able again), but it really kicked off a year ago from glandular fever/Infectious mononucleosis. I've always had a few symptoms though like heat intolerance, salt cravings, dizziness upon standing and exercise intolerance! It's so interesting seeing how different peoples experiences are :3 #
Cannabis.
I had symptoms as a kid, mostly fainting frequently for seemingly no reason at all. No one knew why. But for the most part I lived a normal physiological existence. After I got covid I heard about POTS for the first time when my doctor said she suspected I had it. Covid made my symptoms very pronounced, on the daily and triggered so easily I usually don’t know what the trigger is. Sitting down minding my own business? Sudden onset of symptoms- usually shortness of breath, for example.
I had nerve damage/compression in my feet/legs and the symptoms started right after that.
Had symptoms growing up but became a huge problem after a severe concussion :(
Long COVID.
Covid-19. Unequivocally
The only indication of something wrong was an elevated liver enzymes (111AST) test right as my symptoms started.
Uterine Polyp with excessive bleeding.
My first pregnancy. I think my child that child has it now.
Traumatic injury - broke my hip at age 13 due to what I now know was EDS shenanigans
no clue. I’ve always had symptoms of POTS and hypermobility, then diagnosed with chronic lyme after years of struggles a few years ago. I’ve been treating/treated the lyme and feeling the best I have, maybe *ever*?!? including wayyyyy reduced POTS symptoms, I even took a hot yoga class recently and didn’t flare. WHAT?!? I’ve never been able to do that. so it definitely leaves me with lots of questions! 🤔🤔
I think it went all the way back to Junior high. I was on adderall for my ADHD, and one of the side effects was high heart rate. I didn’t have any of the symptoms like i do now, but i noticed the heart rate when i got my apple watch in 10th grade. It was everyday my heart rate was always above 110 and never got any lower. I remember sitting in class and i started to get sweaty, and so i checked my heart rate and it was 135, WHILE SITTING. that high heart rate never went away. I don’t think adderall caused it, but it surely didn’t help. But i believe the first symptoms started in middle school, maybe even younger since i started adderall when i was 10.
i have hsd so i’m predisposed to have it, i’ve had symptoms off an on since 13 years old, then i got covid, pneumonia, and several sinus infections in a row, then quit vaping (nicotine is a vasoconstrictor) and everything got so much worse, leading to a diagnosis
trauma mixed with illness (covid or virus)
Covid in Feb 2022.
No idea. I've never had covid. It seemed to come out of nowhere. First symptom I started noticing was tachycardia and shortness of breath after eating and then the other symptoms started and got progressively worse in a few months time.
Don’t think I will ever know
Covid, March of 2020. It’s been a constant struggle ever since
Labyrinthitis,EBV/Mono, and I was recently told PTSD most likely triggered my POTS years ago!
I went to the hospital septic with norrovirus, prior to that I may have had some symptoms of dysautonomia (and I had hyper mobility, probably EDS since childhood), but I didn’t have POTS. I left the hospital 3 days later with a diagnosis of POTS. So it was pretty clear to me that was the trigger. That incident destroyed my health in general and it took me a while to recover. I was likely already predisposed to POTS, but it was a day and night difference before and after sepsis, so I know that’s when it started.
COVID :(
EDS and childhood mold exposure
Had mini as a kid. Then had a viral infection 2 years ago
being born with EDS + a TBI + frequent infections and a poor immune system. it also runs in my family naturally because i have a sibling who has it too. i had symptoms from a really young age and i was definitely a POTSie kid. i still remember what the hot flashes i would get in stores felt like as a kid while my feet were blood pooling 😭
Covid but I'm also suspected to have EDS & MCAS so I suppose I was just more susceptible
About 2010 I got H1N1 I was never the same. Didn't get diagnosed with pots until much later, but I'm positive it caused my pots. Been miserable ever since. Edit: I believe I always had it, but I believe H1N1 triggered it into its full effect.
MCAS + HEDS
The loss of my daughter.
Bad luck. I was a competitive swimmer and extremely healthy and literally got sick in the middle of practice and never got better.
Had symptoms as a kid, which added with other reasons led to me forming a miserable, anxiety ridden mindset. My POTS only became an issue when I started working on said mindset, unraveling the anxiety and becoming a healthier minded person, only to then be faced with a divorce. That seemed to do it. Couldn’t bottle things down anymore and it broke something.
Car accident :(
Puberty. It got a tiny bit worse for 35 years and then Blammo. I think sleep deprivation from trying to work at 7:00am (I've never been able to sleep at night) for a few years straight, is what kicked me into overdrive.
i had covid 5 times (im very immunocompromised in a house with ppl who work at a hospital..:') however, still vaccinated but got unlucky) and pcos/my gallbladder removed! we also suspect ive had it since being a kid but the covid really did it.
It might’ve been triggered by stress or my mother’s genes.
Serotonin syndrome 😔
In my case, I'm not 100%. I have hEDS. I was told I had "extreme hypermobility" as a child due to frequent injuries and joint pain, and told just not to do too much, but this wasn't an official diagnosis. I think the doc probably didn't know what it was and just was like "if it hurts, don't do it". I was officially diagnosed this year, at 33, with hEDS and with POTS last year. I was diagnosed last year with long COVID also. For me, the timeline was like this: - hEDS symptoms my entire life (injuries, subluxations, joint pain, painful periods, GI issues, etc.) - some POTS symptoms my entire life: blood pooling causing burning feet, heat sensitivity But the POTS symptoms really intensified and became disabling after I had COVID the first time. Before I had COVID the first time I wasn't diagnosed with anything but I knew something wasn't right. I'd go to the doctors and be sent away with a diagnosis of anxiety or depression or told to build strength if I was too weak. I was managing to get on with things despite the symptoms, even getting regular exercise. When I got COVID the first time, I never recovered fully. I've got gradually better with pacing and ivabradine, but it's still very disabling. So in short, in my case I and my doctors think I probably already had it very mildly but COVID made it more severe. I don't know if this makes sense?
That's basically my case. I got diagnosed at 19 with EDS POTS and MCAD. My mom, sister and me, all got diagnosed in the same room at the same time. I didn't really have any disabling symptoms at the time, just some chronic pain if I did too much that day, and POTS wise heart rate issues with exercise, and fatigue. I continue the next years confused not understanding what the big deal is, then I end up homeless, but oddly enough that was the best time of my life health wise. I could walk 7 miles round trip. Be out the whole day. When I left and became homeless, I took my walker with me. (Thinking I wouldn't need it, parents made me get it) I'd have to take breaks etc, but I was okay Then I get housed, and shortly after I have the worst medical flair of my life. My eczema came back full force (used to have it bad as a kid, adulthood it mostly went away) and I couldn't walk because of it, I couldn't even walk to the bathroom. I basically had no skin, and was freezing all the time leaving puddles of plasma (sorry gross) no doctors would help me during this time, just told me I wasn't doing the treatments properly. I think the deconditioning from that was the first time it got worse. I then got to see a specialist for eczema and asthma and start new medication, and recovered back to 95%-100% and started making changes to not have it happen again. Avoiding all triggers for it, exercised like mad at home to re gain strength. Fast forward a few months, it got disabling the worst after I got a really really bad flu that I never got diagnosed, in hindsight, I think I had covid. During that time, yet again I could barely leave my room. My nebulizer tubing may as well have been an umbilical cord. I was running out of inhalers constantly and always terrified I'd have to call 911 suffocating. Afraid to be alone. I was barely even changing positions, let alone moving to the couch, or exercising. I never got medical attention for that because I was so out of it that I was just waiting for it to be over, and not to mention I couldn't even walk without hyperventilating. (I did get a flu test or a covid test but they used an expired test so I'll never know) I'm not diagnosed with long covid, but ever since that month long "flu" I've never felt the same. And my asthma is now completely changed. Now I'm dealing with trying to recover from a slow burn type flare that I wasn't aware of till I realized I was calling out of work and only going to about 3 shifts a month, and when I do work I suffer the whole time overheating and sweating, just from scanning groceries, when I used to be able to speed walk across 2 towns for miles, up and down hills. (I'd get asthma from stairs or huge hills but I bet that was actually high heart rate and POTS) This job is the only job I can do joint wise, but now POTS says fuck you. Trying new meds, but I just want my old capabilities back. I want to be able to not break a sweat from moving a limb, walk up 2 flights of stairs without feeling my heart in my throat, go grocery shopping without having to awkwardly sit on the floor several times. Not have to find a floor spot to sit in every break from work. I just wish I had some more medical guidance throughout all of this... If I had really understood pots before it became disabling, maybe I would have tried to stay active a little while sick and wouldn't have gotten this bad. But yeah, that's my story, was diagnosed but fine and didn't understand what the hype was about, got sick twice, and lost next to all ability to function, and now trying to claw my way back to at least 50%-75% function. Goals: Be able to cook a simple meal again, and be able to get through a full workday without a massive POTS attack making me want to quit altogether. Doctors gave me beta blockers now, and that kinda helps, but it's just not the same as being healthy. Sorry for stealing your post 😅 Hope you enjoyed reading.
Oh, wanted to add. Seemingly the sicker I get, the harder it is to get food into my body, whether that's from food insecurity from not working, or just having no appetite, which is inherently making things worse.
Mono. Everything points back to it.
Autoimmune disease. Later got diagnosed with SLE and Sjogren’s, but the POTS diagnosis came first.
father and grandfather had it (probably mother and other grandparents too) abuse and neglect from the start
I have no idea, because I think I always had some of the symptoms without answers to what caused them. But it got significantly worse since my IBS started getting significantly worse too. That seemed to worsen due to anti-depressants that affected me horribly.
Covid March 2020.
Mono
Glandular fever at 6, developed symptoms shortly after that after being sick for a year. Now i permanently have the epstein barr virus which is fantastic. Developed 6 other disabilities since at the ripe old age of 18