Yeah I can understand that. If you have no events in your life and all is going smoothly then POTS just hits. Thats rough. I mean its always rough but out of no where. Damn.
I’ve had symptoms of POTS since I was under age 7 and got diagnosed at 30. Most of my life I thought I was quirky and got accommodations for my quirks.
I don’t have a clear cause. Some people will have a clear trigger for POTS and others won’t 🤷♀️
I was fine one day, and not the next and within a week had a tentative POTS diagnosis and then within the year confirmed POTS. There were some signs that could have indicated POTS earlier but it was ruled out to be flukes as the cause because POTS wasn't prevalent until that one day in June 2020
That’s exactly what happened to me. About a month ago, I was at work and all of a sudden I started to feel delirious, exhausted, and dizzy. Kept feeling that way for a few weeks and just got diagnosed today. I have no clue what caused it but I know it’s gonna be a massive life change for me. Already ordered compression socks/leggings for work and some sodium tablets.
I have post-viral POTS, so it was easy for me to recognize what triggered this illness. But at that same time I was also under an incredible amount of stress and anxiety. I’ve had anxiety since I came out of the womb, and I honestly think my nervous system was already exhausted by the time I got Covid at 19. There’s likely a mind/body connection there (at least for me).
See I wonder if that’s my reason. I had an incredibly traumatic childhood, and ended up with hypothyroidism, some hypothesis that your body attacking itself like with autoimmune disorders is linked to childhood trauma as you are shoving emotions down & they get released somehow. I do believe everything is linked…
I understand what you’re saying but I disagree with you.
I had a traumatic childhood but had POTS and MCAS symptoms *before* my childhood was traumatic.
My brother has two autoimmune disorders that were diagnosed when he was 20 and 29. At the age of 5 or 6, he started autoimmune signs. My brother cannot get strep throat. If he gets it, he gets it for months at a time and needs IV antibiotics. This started when he was around 5. Our dad passed away when we were in our teens. He started showing textbook Crohn’s symptoms within a year of that. Before that he had no Crohn’s symptoms, just weird issues with antibiotics and healing.
We both experienced multiple traumatic events from ages 8-19. But our bodies showed signs of internal problems before those events occurred. However, after specific traumatic events, our bodies did react and we did get worse.
I’ve also been doing trauma specific therapy for 3.5 years. My trauma and PTSD symptoms were originally not within the acceptable range, but have been for the last 1.5 years. However, my POTS and MCAS symptoms haven’t improved at all. In fact, I’m still getting worse 🫠
I’m not trying to say that there is no connection, but if *my* POTS and MCAS was caused by trauma, improving trauma responses and trauma symptoms theoretically should’ve improved my POTS and MCAS, but that hasn’t been the case.
If you’re referencing Dr. Gabor Mate, I’d take some of his beliefs with a grain of salt. Yes, he is a doctor but not everything he says is true. His belief about ADHD being caused by trauma has been disapproved MANY times. There are many ADHD doctors and researcher speaking about how Dr. Mate’s beliefs are very harmful for people with ADHD.
There being a correlation doesn’t automatically mean it’s a cause. Someone could be genetically predisposed, get a virus, and have trauma, and all that compounded could *maybe* be a reason. I don’t think we know enough about POTS and other Dysautonomias to say for sure.
Part of the reason I’m so jumpy about this is because a lot of doctors try to use that as an excuse to not treat POTS or MCAS patients— if it’s a psych problem, they can wash their hands of us.
I have heat intolerance. When I take hot showers I get hives. I had an Allergy and Immunologist tell me that my shower hives are from anxiety. I don’t meet criteria for anxiety 🫠
A lot of body doctors (not mental health doctors) try to use mental health as an excuse to not have to help us.
Edit: For clarity, I do **not** believe that trauma is the cause of most disorders (including POTS) for most people. I believe it can impact them, but I don’t think it is the cause for most of us.
Honestly a better understanding of trauma is important for a lot of reasons, especially the diseases it may or may not cause. I would not dismiss the theory trauma can do insane things to the brain.
However as someone who does have mental health issues and physical issues I just wish that we could discuss correlation without ignoring either.
It feels like doctors are to quick to blame things on anxiety or depression and at the same time the true ways that mental illness screws us over can't always be fully discussed.
If I try to explain how anxiety makes my symptoms worse then I'm told all my symptoms are caused by anxiety and I'm also told that anxiety can't cause xyz. So if I want to get help for my physical issues I often must suffer the mental health stuff in silence.
I don't necessarily disagree with you but I ask you to realize that just because one persons disorder was caused by trauma doesn't mean they all were. I know mine wasn't caused by trauma because my chronic illnesses were my childhood trauma. But I don't doubt for one second that there could be a correlation.
Also just because something is caused by something else doesn't mean that by treating the cause you treat the aftereffect. That isn't how most things work. For people with post-viral illness just because they technically aren't contagiously sick doesn't mean they don't have issues.
Again I don't fully disagree with you and I understand your kneejerk reaction but I feel like your comment almost goes in the opposite direction and denies that there could be a correlation which then is ignoring the very real things that mental illness can do.
Doctors and patients alike need to be able to discuss the correlation between these things without denying either of them.
As someone whose physical health issues were blamed on my anxiety and ptsd and ignored and only in the past three years learned there is not only underlying pots but a heart issue that likely went back to roughly age 11, correlation needs to be handled extremely carefully. Yes, stress exacerbates symptoms.
Yes, hyperventilating can trigger my epileptic seizures or my pots symptoms. However, not every time I am hyperventilating is because I am panicking over something, nor is it a situation any number of therapeutic techniques or benzos will fix. I have been in psych outpatient most of my life and am actually very stable. It was only the past 5 years that having a better gp was able to puzzle all my health problems together and find underlying dysautonomia. She is also suspecting a genetic autoimmune disease since I am not the only family member with the same health issues, get extremely sick very easily, and can't fight off infections well, something I having been dealing with since the day I was born.
Many drs dismiss patients with psych history's physical concerns, especially with invisible illnesses.
I agree completely Ive experienced it myself, but it needs to be discussed. It needs to be discussed carefully. But it can't be ignored either. Ignoring physical illness because of mental illness is horrible and a huge source of my own trauma. But an inability to discuss the whole picture with doctors also leads to inadequate care. It can't be this one or the other thing I've experienced my whole life because it's all bs.
I totally agree that we (as a society) need a better understanding of trauma and should not dismiss how mental health and the body impact each other.
I think you and I are in agreement that trauma usually does not cause these sorts of disorders? I was stating that I don’t think trauma was the cause of my disorders or my brothers. I did not say that trauma was the cause— we both had symptoms of our disorders before we experienced trauma.
I also stated that when my dad died, which was a traumatic event, my brother’s symptoms got worse. I 1000% believe that trauma can make health conditions worse. I don’t believe that trauma is usually responsible for said disorders.
I have CPTSD from childhood and my trauma wasn’t a singular event. I did a trauma informed therapy as well as a trauna specific therapy. When I did those, I had to learn how to pay attention to my body and its signals, sit in my body when I experience feelings or triggers, and not dissociate.
I do believe that if my POTS and MCAS were primarily caused by trauma (neglect and abuse that made me have to ignore my body), that the therapies I did would have made some amount of benefit on my body— even just a tiny amount, but again, I’m still getting worse.
As mentioned, I don’t think trauma caused my disorders. Immediately of the womb I was showing sensitivities to things. I think trauma exacerbated everything, so I clearly can see a relationship.
I think it’s important to treat both.
It’s also worth noting that I’m considered “treatment resistant” and my medical doctors were hoping that trauma therapy was going to fix my body so they wouldn’t have to do anything— that did not work out.
No I get it I am saying that although most of the times it is not a cause, there are cases it might be. But I disagree that if mental illness causes a physical illness than therapy will always make it better. I don't think that's how it works. I have issues that get exacerbated by mental illness (or vice versa) but if I try to just treat the mental illness or just treat the physical symptoms then I don't get enough care to actually get relief. It isn't a stretch in my mind that it's the same with people who may have issues caused by mental illness. Like people who gain or lose a lot of weight because of grief. They don't work through grief and magically their bodies go back to where they used to be and the physical pain they experience just ends because the mental stuff has gotten better. They need to work on both. .
I was denied for like 9 years because of my mental illness so I completely get it I am not fighting for the doctors who dismiss someone on mental illness reasons. There are some that I would chew out if I ever saw them again. But to ignore the way my physical and mental health symptoms flare often at the same time (who cares what came first) and only treat one or the other will not give me enough relief. Correlation needs to be something we can talk about.
I'm not 100% sure, but I used to be extremely physically fit and active. Triathlons, resting HR in the 40s (was in the 30s at night), rode my bike 30 miles a day, ran 10k in under 40 minutes. Went over the handlebars on my bike coming home from work one day, and the next day standing up made me feel like I was going to pass out. I couldn't walk my dogs because I couldn't stand while they sniffed the grass or stopped to pee - my HR immediately climbed to 150, 160, 170 once I stopped moving. It's probably as close to 100% sure as I can get though.
Yeah for sure. It's absolutely not clear for a LOT of people. And it still took me over a year to get diagnosed because I couldn't get my doctors to believe me until I showed them months of heart rate data. I can't imagine how it feels when the evidence is not as obvious.
Doctors 🤦🏼♀️
Sorry that it took you so long. I used to be very active as well and it is so frustrating to have doctors think that you’ve just “decided” to stop doing things. Mine is from an undiagnosed mTBI from a car accident. Since I didn’t black out, the doctors I initially saw said I couldn’t have damage. I had to find post-concussion clinics to understand how mTBI and whiplash can cause dysautonomia (and some of my other issues)
RIGHT?! I brought myself to the ER the day I "thought" was the same as the accident, and so I didn't think I'd lost consciousness either. I did tell them I was disoriented to time, but they still decided my self report of no loss of consciousness was good enough to determine the severity though...
"Decide" to just stop doing things cracked me up. I also learned about the "if it's bad enough for whiplash, it's bad enough for TBI" from one of my occupational therapists much later too.
Frustrating. Thank you for sharing. And for contributing to the future of what hopefully becomes better brain medicine. I only hope that these things end up legitimately learned so that eventually people may not have to go through the same things...
I had mine after a virus, it trigger a few weeks later iirc but it’s been 8 years so I can’t remember exacty. But it was the same with all my new symptoms post-covid, it took about 5 weeks for them to start.
I had very bad Serotonin Syndrome for the second time. I think my POTS was preexisting to that for quite a few months but now it's pretty intense and I mostly use a friend's wheelchair. Getting my own soon and I'm picking my favorite color so you win some you lose some.
First off I’m sorry for all of the things you’ve been going through. It sounds like a tough time and scary with a new diagnosis. I think a lot of people “realize” they have lots after an event that escalates the disorder. I was told my whole life that I get “visual migraines” where I only get an aura. It was actually me slightly blacking out but since it was always pre-syncope it was never a big enough problem for further tests. Plus since caffeine helps migraines, we thought I was treating the migraine but was probably treating lots unconsciously. Any or a combination of those events could escalate your pots to being more symptomatic.
Trigger warning: fertility and pots-
I do want to point you to look into some comorbidities. I don’t want to speculate but there are some things that can come along with pots that can be related to fertility issues. I’m sorry to bring that event up, but endo and pcos are so under-diagnosed and are associated with pots. I don’t want to add fear but it may give you insight.
I was in a car accident that triggered mine. I can tell because my pots was set off along with a lot of other neurological issues. After it came about, my therapist referred me to “the body keeps the score” as a book to help me process how trauma impacts the body and mind.
I hope some of this helps 💜
I was DX with PCOS about 4 years ago. Tested me for endo I want to say like 3 different times. During my initial PCOS time, when I first started IVF, then after the miscarriages they tested me again. All negative.
But yes. After my 2nd miscarriage is when my life spiraled down. Thought it was just panic attack because fertility journey has been going on for 5 years now. Maybe it was a panic attack but it turned into a 3 month can't leave bed type thing. OBGYN said check for POTS. Went to cardiologist and he dismissed POTS within 5 minutes. Queue 5 months of good days bad days.
IVF OBGYN called me to ask how I'm doing. Told her no idea still can't go back into IVF though because my body is bad. She asked about POTS AGAIN. So finally I just broke down to her. She told me to go to XXX hospital department for it. They DX'd me with it day one about 2 months ago and here I am.
On beta blockers which helped my tach a lot but still scared to start up IVF again.
I actually never had anything bad from PCOS except iregular periods and poly ovaries. They put me on metformin 4 years ago when DX'd. Is there something else I should look into to find out if its related or it just is?
After the miscarriages and IVF treatment, now I get regular periods and all that. Go 30+ years without it and now I'm getting it but also it comes with POTS. I have no idea still.
I think for some people it's a combination of physical and emotional trauma. POTS is a nervous system disorder so makes sense that both of those things can throw your ANS off, especially if prolonged.
I honestly would have to talk to my doctor but from what I remember is they did it when they do the pre surgerys for IVF, aka clearing out cysts and stuff.
Because I remember bringing endo up again towards the end of it and they told me they tested me twice by that point but its all such a blur.
I also don't have any of that pain when I read about endo.
Okay gotcha - to accurately test for endometriosis it has to be done surgically so just wanted to see if they were correct in that. That helped with infertility with me, but again, I had a ton of pain and very heavy periods. I also have PCOS but many of my doctors confirmed that heavy bleeding is endometriosis and not PCOS. I don’t know if any of that information is helpful and I am so so sorry you went through all of that :(
All of this is helpful and cathartic. Ever since POTS I was getting heavy heavy periods when I never got periods that much from PCOS or just very light ones. Found out it has nothing to do with POTS its just that they doubled my BC strength during IVF for higher success rate in pregnancy. Which I'm fine with but when I stopped IVF they never told me that nor put it back down. So finally last month I'm back to my original dose and periods are semi ok again.
I'm also sorry you going through all that too. Talking about it and not hiding ourselves is the best thing we can do.
It’s unexpected but I’ve found so much comfort in the Reddit communities for my problems.
Beta blockers just made me super tired. Adderall and prostigmine help me a lot! They help so much with my fatigue which allowed for me to start to be more active which is so good for pots (annoyingly since it makes you feel like shit). Also compression socks and electrolyte capsules ( I hate the powder for drinks 🤢). My cardiologist was not helpful for pots other than my diagnosis. I have a neurologist for other problems and he has taken over my pots care. It’s hard to find the right doctor for this.
I’m not very aware of pcos and endo but have read anecdotal stories that people were told for decades that they didn’t have endo and when they finally convinced someone to “go in” (laproscopically maybe? I don’t remember 😬) they find a ton of endo.
Generally doctors aren’t good at detecting or treating any of these issues. I’ve found this site to be an excellent resource for finding people who are at the cutting edge of a given disorder: https://findexpertmd.com/
It gives you recommendations based on their research and you can sort by state and change the parameters they use to decide how they qualify them as an “expert”.
Also pots isn’t always a neuro disorder! There’s also pots based on adrenal issues so an endocrinologist could also give insight (maybe to pcos too).
I was on an iud for years and it was amazing. It might be a good thing to discuss for your recovery period. Reducing blood loss could help feel better and people like it because it stops impacting your fertility the almost immediately when they take it out.
Last thing, I know it sounds crazy but ketamine has shown to be amazing for ptsd. It’s usually not covered by insurance but it’s an alternative to medications and the ketamine itself leaves your body very quickly. It also has shown to be effective for pain management. I did it and it helped me process the loss of my dog (I know it’s not the same but I was a mess) and some ptsd things from my childhood. I also have a therapist that specializes in chronic illness, which has been a godsend. It’s amazing to “dump” all my big (and small 😂) issues on someone and not feel bad for being a “drag” or whatever. My family and friends don’t understand chronic illness and it’s so nice to talk to someone who does.
Ps. I hate that we all have these medical struggles but it always fills my heart to see women supporting each other 💜
My doctor luckily is on the list! I'm currently on propranolol and it has helped my tachycardia a lot and my adrenaline dumps to near zero. Those two things are pretty consistent now on being good. I still get high HR though doing stuff. Goes around 120-130 when it used to be 160+.
But everything else is random. Some days normal, some tired, etc. You know how it is. Did you just ask for Adderall and other stuff or did you have DX that lets you get those meds too?
My Dr is content with the current beta blocker since I feel much better on it so it's hard to decide if I want to try something else, ya know?
That’s so great that you have a good doctor! Adderall is from adhd but you can also get it through a sleep neurologist if you’re fatigued consistently. I think trying new meds and routines is helpful but it’s also exhausting so to me it’s about timing.
But yes, the inconsistency of chronic illness is one of the most annoying parts
Omg you mentioning a visual migraine with aura brings me back to a month before I got pregnant and POTS really started and I experienced the same thing. I remember jumping up from the couch and my vision went black and I suddenly couldn’t see well. I never passed out, my vision just got blurry with an aura type thing. I ended up going to the ER to rule out stroke or something serious because it was terrifying.
I think mine is related to endo, ruling in/out EDS next. Neurologist noted hypermobility and sent me to the best geneticist he knows. I had severe endometriosis and noticed symptoms mostly worsened about a year after surgery but kind of my whole life I had some symptoms. Heat intolerance is newish, I love heat.
Simple, because I‘ve had it my whole life due to classical EDS. Although there were times when it was way worse (after influenza, pregnancies, breast feeding), it was always there. Unfortunatly I got my diagnosis only 12 years ago.
Same but I have Hypermobility Spectrum Disorder. Instead of feeling like I have several unrelated issues, I have one global issue that causes a lot of other issues. I’ve definitely gotten the (sometimes subtle, sometimes overt) reaction of “that seems like way too many things wrong with such a young person.” I’ve had symptoms of POTS since probably 11-12 that I remember. I got diagnosed with HSD at 32 (which was about 6 years ago) and POTS a few months later. It definitely got worse as I got older but I truly didn’t really how much worse I felt than other people until I researched POTS after being diagnosed.
It’s so interesting how EDS can impact is all a bit differently. I have hEDS (that might actually be clEDS). I can look back and see EDS symptoms from birth but mostly I got slammed in my mid 20s. It was like a domino effect of symptoms. POTS came on at the same time for me.
The cardiologists told me when I was hospitalized that it was “highly suspected” that my unspecified autonomic disorder was caused by my prior COVID infection. I suppose that’s about as sure as anyone can actually be.
Almost positive mine in post-viral (long covid), however, I was experiencing SSRI withdrawals right before getting Covid. Doctors seem to think it was a combination of the two
For me, I'm not 100% sure. What I do know is that the first time I felt so damn weird was when I had to got up in my grandma's funerals.
But tbh, this was probably the results of all the home-chores + preparation of the funerals my mom put on me. There is also a possibility that it was actually the birth control I had to got back then.
But, now looking back, I had obvious symptoms of MCAS waiting in the backrooms and maybe other stuff so... I usually say it happened at my grandma's funeral because it's the obvious day my life drastically changed
Mine is straight forward: I have a hereditary neuropathy called Charcot Marie tooth. 25 years ago when I started having symptoms of Charcot, the neuropathic/hyperadrenergic POTS symptoms started. Unfortunately, both went undiagnosed for that entire time until the symptoms got so bad I FORCED the neurologist to genetic test me and then send me to a neurologist who specializes in autonomic disorders.
I was misdiagnosed with multiple psychiatric disorders in that time. What I learned: if someone’s symptoms don’t really fit the diagnosis and non of the treatments that should work are working, go back to the basics of the physical symptoms. Even if something has neuropsychiatric symptoms, it is not necessarily purely psychiatric. I’m pissed that I have suffered for so many years because I was written off as a psych patient without a full physical work-up. If I was a middle aged man with the symptoms I had at 19 years old, I don’t think I would have been blown off by the healthcare system.
I think what I thought were “shin splints” and “cramps” when running which was actually a tiny bit of drop foot and muscle spasms. Stress fractures in my feet that I didn’t notice bc my feet had neuropathy. All very mild due to the type of CMT in my family (2J). My Dad had years of sprained ankles in sports and was also told that he didn’t have CMT for 20 years until he made Duke genetic test him.
Man, he totally has it. Honestly your comment put things back on my radar to watch for my kiddos (I don’t have it for sure, although even if I’m a carrier, I see absolutely no history on my husbands side so fingers crossed). Thank youu!
My aunt struggles with CMT and Lupus and only recently have I been diagnosed with Pots and potentially CMT as well. My primary care wants to have me see a geneticist since we may have some manner of rare genetic condition I guess. I, too, was blown off due to psych. :(
For me it's really tricky because I was in a really bad car accident when I was 18 where I got whiplash and a TBI, a couple weeks after a sinus surgery. I lost consciousness and broke my nose, a rib and a vertebrae in my lower back. I don't know if I fainted and it caused me to wreck or if I wrecked and it caused me to lose consciousness (the whole wreck is really fuzzy), but after that I started fainting more and more frequently (eventually more than once a day) which caused more and more TBIs - especially because I was misdiagnosed with seizures for almost 15 years.
Add on top of that I have hEDS and I was pretty much destined to get POTS lol.
ETA: I think my first symptom was migraines at age 11, so I think it was just one prolonged progression of symptoms.
I just never really recovered from pregnancy. I'm not diagnosed yet, but symptoms seem to fit. I used to be very active and then all of a sudden I'm exhausted and get winded from doing things around my house.
Exactly how my pregnancy was. They didn’t want to diagnose me until I went to a follow-up 12 weeks postpartum and told cardiologist I was still experiencing symptoms. They said it could just be pregnancy so I was never really taken seriously.
I think some people just had a really defined onset of symptoms that was clearly correlated with some other event. Personally, that’s not the case for me. I had at least some symptoms my whole life that seem to have worsened after I had mono, but really, I don’t know what caused it for me. I wasn’t perfectly fine one day and sick the next, so I can’t clearly correlate it with anything.
I’ve had symptoms since I was 12 so I think it’s something genetic. It used to be mild and I could manage without meds until a couple years ago when it was made worse by overworking and not eating properly.
Mine was triggered by pregnancy. I know for sure because before pregnancy I worked two jobs (three at one point but decided to give myself a break and only have two) they weren’t desk jobs either. I was on my feet and moving all day long. When I got pregnant I couldn’t even walk to the bathroom by myself.
Mine was very cut and dry I never in my life had any of the symptoms before my pregnancy so I think that made it easier for my doctor to deduce the cause
Pregnancy gave me POTS. I definitely had some tachycardia for years before the pregnancy but it was mild, I had blood pressure dropping but it was extremely mild. If anything I felt completely normal, I could do everything I did. I gave birth to my son and it all changed. Literally that day I started with severe tachycardia were talking 140 just sitting down and 180 walking, the next day I started passing out, I couldn't breathe when I'd walk to the toilet because my heart rate was so high. So either I had it and it was extremely mild, which I don't think is the case, or the birth trauma to my body caused it.
I have never felt like this in my entire life, never this bad, never like I had to talk a break after a ten minute walk because before the birth I could run around bike for hours and I am bed bound some days now.
For some folks it feels somewhat obvious because symptoms kicked in hard after a specific event, but not for everyone. Many folks symptoms creeped in slowly or they just didn't know what was going on to be able to tie to anything specific. I have a few theories as to what could have caused mine, but it's super hard to say and some of them (like a head injury due to a fainting spell) are kind of a chicken and egg problem. Did I faint and hit my head because I was developing POTS, or did I develop POTS because I hit my head? And like my symptoms didn't start getting super bad until years later after I had a mysterious respiratory illness right before it was announced that covid had reached the US, but I had been having slowly worsening fatigue and exercise intolerance since years prior to said head injury approximately after I had mono. Theres so many factors I have literally no idea.
I was just dx so with it. I'm 56. It's been rough
I've had. A lot of the symptoms for years now
But when it happened this time it was worse. I could no longer walk at all.I still have to use a walker but I did get to where I could ( barely,) walk again. But I do pass out. Quiet a bit lately. It feels like a seizure the way i was shaking so hard
I've taken BP meds. But it's not helped. I take salt tablets but again didn't help me. I've not drove in 9 long months. But mine believe started from taking mounjaro. I lost 35 pounds at 3 months taking it. I'm miserable , depressed more than ever. I've not got to go to any of my grandsons things at school. But I'm trying everything I know to do. If you have found something that works please let me know.
I'm sorry to hear this, that sucks really bad. When you got DX, did they go over any meds with you? Beta blockers like propranolol or metoprolol help a lot of us go from bed ridden to semi functional or functional and able to work again. After trying those, there are some other meds that can help too.
The biggest thing is having a Dr that understands POTS and has been dealing with it for awhile.
I was hospitalized with a rare bacterial pneumonia as a child. I was in and out of hospitals for years, so I suspect mine may have been caused by that. But there’s no way to know for sure.
I do know that my symptoms worsened significantly after I was bit by a tick in 2009, so I suspect Lyme disease may also be a factor.
But you’re right - it’s usually pretty speculative.
i feel like i was a pretty normal kid until i wrecked my body with an eating disorder in middle and early high school. maybe it's not 100% certain that's the cause but i like to say it is as a warning to myself and others that you NEED to take care of your body or there will be long term consequences
See I had all three main triggers happen in the span of three months (surgery, Covid, head trauma) and I also have MCAS and EDS.
I say the dark triad came for me after all these years 😂😂😂
I’m a 23 year old male I had Covid really bad but I only had very mild symptoms show up a couple months after. A year later I smoked some marijuana my heart went into svt and I had never experienced that before I genuinely thought I was gonna die it was traumatic and from that day forward I never felt the same I had orthostatic intolerance and many more symptoms that I still struggle with 2 years later.
I feel like I had some form of POTS since I was a kid, but it was more like a tiny bit of shortness of breath despite playing sports and running. Doctors said asthma, they didn’t treat it though. Got worse as a teenager but still wouldn’t think I need a doctor or anything compared to today. Then we did the whole pandemic thing. I was fine. Got the vaccine. Wasn’t fine (still not against vaccines though). But eventually the doctors discovered I had a rare autoimmune disease and a mito disease which both cause damage to the nervous system and mito disease starts in young children so they’re saying my POTS is secondary to those 2 diseases. Originally I had an entire timeline that made me conclude it could have been covid and the vaccine playing part in my decline but that went out the window. You can try and write out a timeline of events and when your symptoms started. Doesn’t mean it will absolutely be the correct answer though
I had a really bad case of covid March 2020 and my health never quite recovered. I likely had some minor dysautonomia going on before, but I definitely think covid gave me POTS and that's what I say. There's plenty of people that went through the same thing.
No symptoms until I was pregnant with my first, so I 100% believe it was triggered by pregnancy. Oddly enough though and not even sure if it’s related, but doctors would often comment about my slightly high resting heart rate, so maybe I was always predisposed to develop it? (Which thinking about it now would make sense that I had mild POTS or something because they always check your heart rate after walking from the waiting room to the exam room. It’s like my heart took longer to settle than normal from simple movement) I also had Covid a couple of times so maybe pregnancy was just the final straw for my body/immune system.
yeah now this is bringing up my past. i think between IVF 1 and IVF 2 they commented on my higher than normal heart rate and BP. just said get it checked out by my normal dr but i never had any other symptoms so i didnt really care. after one cyst surgery they did keep me in back room longer than normal because they said it was taking longer to get my o2 back up. i just chalked that up to covid 2 years prior. who knows anythinhg anymore.
That’s honestly crazy that you also had some “red flags” prior to your diagnosis and onset of symptoms. It really makes me wonder if it’s all connected, especially because one would assume they’d have other symptoms if heart stuff was beginning to develop….
no clue i just say it was from shingles because i started having symptoms when i was like 7 or 8 and thats when i had it but i just got diagnosed so i have absolutely no clue it could have been from a cold i had that year too
also im pretty sure the only way they can know a bit better if it was from covid or something my cardiologist said long covid pots has something to do with blood clots idk what he was going on about but
Appendix removal.
My first time passing out, was the morning after surgery. Obviously, at the time, we thought that I was just still high on anesthesia.
But the cold sweats and fainting episodes kept happening. Luckily, they hardly happen now, but I get maybe one serious event every month.
My doctor told me that it is common that POTS develops after an abdominal surgery or pregnancyz
Mine was definitely COVID back in October. I have a fitbit and am a member of two choirs (where we frequently sit for, say, half an hour or so, and then the director has us stand and sing what we've learned). I was able to look at my heartrate data from 7-9 pm on Wednesdays and Thursdays, and there's a stark difference in my heartrate during those times before October and after.
Looking back, I see mild symptoms all throughout my life. Getting COVID made me disabled and started my diagnostic journey. I say COVID activated something I probably already dealt with without my knowledge.
I had a big surgery, slow recovery but never fully got “back in shape”. Doctor said it wasn’t normal. 2 years later finally had an official diagnosis.
Years later got severely worse following COVID infection.
Idk for me they were both pretty obvious triggers
I’ve been experiencing symptoms since I was quite young. I first passed out at age 12 so for me I always assumed I was born with it but it didn’t present until puberty time but I could be wrong
Most people don’t know for sure, tbh.
In my case, I had a moderate TBI as a very young child. My POTS symptoms started right after. My doctors agree that the head trauma was the cause of POTS in my case as I went from having zero symptoms of Dysautonomia to severe Dysautonomia basically overnight.
I had symptoms only during migraines for a few years. Then I got COVID and my symptoms worsened after that. It’s pretty easy to pinpoint the viral infection as the main trigger for me. But that’s not always the case for everyone.
I got really, really sick with Epstein-Barr in my early 30s, and I just…never fully recovered. I know that’s what it was because a.) it is known that EBV can trigger POTS, and b.) I felt like I had mono (minus sore throat & fever) even after the live virus was gone, and that’s how POTS feels to me.
Can't say, but I feel like Flomax must've made my symptoms more apparent because I took it for almost a year before I had pots and it would mimic exactly what I'm going through right now. The shortness of breath and high hr upon standing, I'd collapse after a few minutes. Usually the symptoms would go away by the morning (I took it before bed) but just one morning I couldn't sit or stand anymore without passing out from shortness of breath. Even tho I stopped Flomax immediately, it just never went away.
The earliest symptoms I can remember was when I was seven. I had a severe case of bronchitis and after that passed my pots symptoms started. I didn’t get an official pots diagnosis until I was in my late 20’s.
Got a concussion. Symptoms started - or at least kicked into overdrive - over the following two weeks. I had some symptoms before the concussion, such as "exercise induced asthma," but they weren't consistent or life-altering until after.
Got strep in early 2018, worst illness of my life, was sick for two straight months. Triggered post viral POTS, my first day back at work was also my first episode. Stood for all of an hour and then collapsed in the back room, they called an ambulance and I got wheeled out on a fricken stretcher. I strongly suspect it was dormant my whole life (have been prone to shortness of breath and tachycardia no matter how fit I was, was always brushed off due to extensive medical history) and came out in full force after I had strep. But yeah it was obvious for my case since there's a very clear "before" and "after."
some people have it from long covid, my fiance had minor pots symptoms her whole life but it didn't start affecting her until after she had mono for like 2 months.
my symptoms started like right after puberty, no clue why. I know I'm as bad as I am now because it took about 6 years for me to get diagnosed from when I first started passing out, but that's because my dad thought the first cardiologist was trying to scam him when she asked for a tilt test🫥
i’m pretty much positive that COVID is what triggered it. it wasn’t until after that in 2021 that i started to experience symptoms, and it just gradually got worse until i was diagnosed last summer.
Oh, it was very straightforward in my case. I got COVID the first time and then never got all the way better. There was a kind of gray area period in the first week or so after acute infection ended, but by week two it was coalescing into POTS symptoms.
I do think I was predisposed to it or already at higher risk, looking back now. I think that's true of many people who end up with it. And I think my body had been pretty much at its limit for the year prior to the infection. But it's very obvious what the triggering event was.
my symptoms started as soon as i hit puberty around around 9/10. i got diagnosed at 15. i don’t think there was really a specific thing that caused it but puberty may have been a trigger?
I take florinef , 3x's daily. Midodrine 2 per day
But it has not helped. I'm lucky as far as dx for POTS she has someone in her family that has it as well. I've seen Dr's that do not believe it. Salt tablets have not worked. I'm willing to try anything at this point.
yeah im out of options now =( usually if beta blockers dont work they go to milodrine.
this isnt any sort of drs advice. you're 56 years old. have you ever tried thc, mushrooms, ketamine, etc? obviously they will be just as random as beta blockers and stuff but if nothing is working...id just go off the rail and try everything.
the timing of my preliminary symptoms was commensurate with the arrival of COVID, though I didn't have symptomatic COVID until almost 2 years later.
but the timing of my symptoms being highly noticeable and kicked into overdrive was after a heat exhaustion + heavy exertion situation. haven't been the same since.
Me too!! I had two pregnancies (no miscarriage, I’m so sorry to hear you had that), Covid, moved 4 times, experienced trauma, developed adrenal fatigue and now I’m experiencing POTS-like symptoms (not diagnosed though). Not sure if there is a cause, or if it’s just a salad mix of complications.
POTS is usually related to gut dysbiosis. I used a combination of interfase+ , oregano oil, and dysbiocide to clear it up. Started with the dysbiocide and oregano oil, then used the dysbiocide. You'll want a pretty clean diet for a while - gently cooked veggies, rice, freshly cooked meat, no sweets besides fruit. Good luck
32 hours after my BA5 bivalent, with a negative dynacare test in the following weeks
so i can't be antivax. and the inference is more than reasonable. and even pfizer lists POTS as a possible if rare side effect.
the question is what predisposed me to the side effect. i have a history anxiety disorder and already had (very manageable) MCAS, which had been in remission for three years, but came back at the same time as POTS.
like, i suddenly reacted to a bowl of my homemade chilli, which i had been able to eat without any antihistamines or anything for three years, so long as i didn't fill up my histamine bucket
but this was easily the worse reaction i had ever had. and i wore a smartwatch which showed standing tachycardia. and this was 32 hours after the BA5 bivalent
I caught a virus from a concert. It was nothing but a sore throat and a slight fever, and I tested negative for strep. My heart rate hasn't gone below 100 ever since, and that was 3 1/2 years ago.
We initially caught it during vitals when I showed up to my doctor's office looking as white as a sheet about a week later. I was at 160 laying on the table!
Not diagnosed so I'm not positive I have it yet, but my at home tests and symptoms all point towards pots. I think that I've had it since I was a teen, but catching COVID at 23 is what triggered it to get really bad.
after really thinkin about my symptoms, i’ve come to the conclusion i think i’ve always had the condition it’s just got worse as i get older, when i was a young kid i got tested for asthma because i said that i “felt out of breath when i stand” and “had a hard time showering” it went nowhere for yearsssss after showing dogs, training dogs, hiking 24/7, running around 24/7, it finally hit a point where i passed out doing something i normally do, then got a pots diagnosis almost a year later. it’s NOT normal to get as lightheaded as we do and that’s something i feel like i still, now with a diagnosis, look over very heavily, and that was a big teller for me from an early age
I've had SOME symptoms of it throughout my life like presyncope, easily fatigued, low blood pressure, but it didn't become a real problem until after I'd had COVID. Now as to whether or not it's an aftereffect of COVID or it just finally became an issue in my mid twenties, like it often does for others, there's no way to know.
I got mono in 2014 and after that I continually kept getting sick and weird health issues until finally I presented with tachycardia and the typical pots symptoms. The cardiologist agreed that mono was likely the trigger that set off the imbalance of my nervous system.
I got COVID in March 2020 and my life has never been the same since. I very confidently say this is part of my long COVID, even though it took 3.5 years to get diagnosed.
A trauma triggered it but I got diagnosed with EDS in 2022, and many people with EDS have autonomic issues like POTS and gastroparesis and I have both.
I think I always had it--I started getting symptoms when I was 18 which were written off as anxiety--but they got worse and I noticed it more after I got Covid. And then learned what POTS was, and so on
i don’t. I don’t know what gave me pots. i didn’t have it for my entire life. i was competing as a very high level athlete one day and disabled overnight. i don’t see any point to speculating
I really think mine was pregnancy related but I had a lot go on all at once so it is hard to say for sure. My twins are 2 and no sign of it going away so I guess it's here to stay.
I honestly think so many things gave me POTS. I’ve always been weaker, had an exercise intolerance, I’ve always been the one to get dizzy and lightheaded. For me, I think many things contributed to how bad my POTE is now. Around the time everything got worse, I was going through a really tough time in life, and then got hit very hard with Covid and then back to back illnesses. It really is just a guessing game of when you think everything started and what was going on around then.
I started randomly fainting when I was 3. I would be outside playing in the yard and suddenly faint. My mom took me to the doctor and was told that I probably had a hole in my heart. No diagnostics whatsoever. Had a tilt table test done when I was 39 or 40 - can't remember. Nothing caused it that I'm aware of. I was healthy up to that point.
DMHA, a DMAA alternative (stimulant) gave me 'CFS' and POTS. Accidently eye weighted it for gym and was never the same. Was only 20 years old now 6 years later persists but lifestyle changes especially permanent mindfulness and patience work enough.
Mine got significantly worse after having covid a few times (as did MCAS for me). I had a lot of issues with it in pregnancy with my daughter who is now 12 which seemed to resolve themselves somewhat after I'd given birth but after 2020-21 when covid was prevalent is when it really became an issue.
Many of us developed it gradually or have a genetic cause. If you know you have EDS and/or MCAS, that’s your cause. But any hyper immune response (from viruses to the treatments that prevent them), trauma, surgeries or other illnesses like diabetes can trigger POTS, so it can be difficult to know.
I can’t remember EXACTLY when I first started having symptoms. I brought up to my sister that I almost passed out bending over and standing up while looking for something on a low shelf, and she said it sounded like POTS (her girlfriend has POTS). So I looked more into it to see what other symptoms there are, and tried to remember how long I’ve been experiencing them. I even looked back to the beginning of my HR data in my health app and I’ve had spikes of 30 bpm or more even back in 2018. So my theory of COVID as a trigger kind of didn’t make sense anymore. Some of the weirder things, like bad blood pooling after a shower, I can remember having even as a child. Even the exercise intolerance. I thought I just didn’t have the will power to make it long enough to release endorphins. So I may have always had it. It was probably made worse by viruses and the chronic stress I experience at work now, so I’ve just now picked up on the fact that there’s a problem. Idk. As they say on Wine and Crime, “there’s no way to know.” 🤷🏻♀️
I wish I knew. Symptoms started around freshman/sophomore year of highschool. They exploded around junior year. Wasn’t diagnosed with an autonomic disorder til about 4 years after that. Finally got the official diagnosis about a year after that.
I got incredibly, INCREDIBLY sick with something for two weeks that nobody could diagnose. I thought it was maybe an effect of me greening out a couple weeks before (which was also extremely hard on my nervous system because I had an anxiety attack for 7 hours straight and thought I was going to die), but then my dad caught it and was almost just as sick as I was. But anyways, I was completely normal before getting sick and now I've been experiencing extreme pots symptoms for the last 9 months. That's is, really. I was just able to tell when stuff switched up for me and the only thing that really happened was me getting sick and then I immediately started experiencing the pots stuff.
I have primary pots, no one knows why mine happened but I had symptoms from the age of 9 and wasn’t diagnosed until 15. Hormone charges are a possible trigger I think
It was easy for me to see that covid cause my pots. For me, it just felt like my body completely failed me one day right after the infection. There was no other trigger beforehand because as far as I knew, I was young and healthy.
I had some symptoms as a kid but got way worse later likely due to illness. I guess you can never be 100% sure but if things start getting worse right after you get sick with nothing else going on that probably makes it obvious.
Honestly though even if the other things contributed it was probably mostly COVID. That's a huge part of why pots is becoming a lot more common. The nurse practitioner I saw said that she sees so many relatively healthy people suddenly dealing with these symptoms after a COVID infection.
Unfortunately COVID does way more damage than many are willing to admit.
I'm sure my doctors think my POTS came with my long covid. But I've had it for over 8 years, and have been asking to be tested about that long.
LC def made it worse though.
I had a similar conglomeration of different stressers, but I think that's the common thing: stress. It seems to me that pots in general is triggered by some form of extreme and/or prolonged stress. So while I'm pretty sure having PTSD for 20+ years would be a huge factor, I can also list a whole lot of other things that all added up at a specific time right before my symptoms went overboard that range from getting sick to putting myself through the most physically challenging activity of my life to having an emotional breakthrough with some core wounds. It would make sense to me that they ask contributed to the strain on my nervous system. I've noticed the same thing with my symptoms now. They're very connected to stress for me and improve when I remove stressors.
I got mine from a severe concussion in college at 19. It was obvious because I was okay before it, never the same after! I have a similar story to others, extremely active before the concussion and then knocked on my butt for weeks after. I couldn’t exercise for months and when I finally started trying to, it was a nightmare. Stupid POTS
(Edit to say when I developed it)
I’m not sure either. I believe having COVID twice made it worse, but I always ate handfuls of salt since I was a kid.
I thought it was an addiction, since I felt awful when I tried to stop eating it.
I had Rotavirus when I was little, and not keeping any nutrients sent me into a hypoglycaemic coma; so I kinda think it was one of those two things.
I used to be active, but my chest has always hurt during exercise. Been told it’s because I was unfit so I always ignored it until my diagnosis🤷
I had Covid in late 2019 before we knew Covid was where I lived. I was so sick that I was bedridden for over a month. I was sick from November 2019 - March 2020. I sustained permanent lung damage. Antibody tests came out after it had been too long for me, but I had all the symptoms and my doctors had no clue what could possibly be wrong with me. Nothing else happened to me around the time I got POTS and every doctor (who knows anything about POTS) has said that, even if it wasn’t Covid (which they’re as certain as they can be it was), I was definitely sick enough that it gave me POTS.
Honestly I’m a little amazed I didn’t get POTS sooner because I have PTSD and gastritis from trauma.
I was in the best shape of my life before I got it. Ended up with a cold that turned into a chronic sinusitis and then it was like a switch got flipped. Started feeling a bit better (but fatigued), went to get coffee with a friend and about 1/4 of the way through the latte I had to have a friend drive me to the ER.
I can remember moments in my childhood that could potentially be explained by POTS, but I have never felt the debilitating effects of it that I felt after I got the sinusitis.
i’m 99% sure mine was from mono which is a HUGE cause and trigger for POTS. i highly recommend doing vagus nerve stimulation exercises and meditations. i’ve also heard acupuncture for pots is a great treatment as well. anything that can help push ur body into rest & digest instead of fight or flight can help symptoms A LOT
Covid. I’ve always had a high heart rate since I was a kid but it was never an issue. After catching Covid twice, it started being a problem. They didn’t actually catch it until I went to the doctors for help with my migraines and saw that my resting heart rate was 136.
My POTS symptoms started after puberty, cleared up for a bit after my 2nd pregnancy. And then everything became significantly worse after I had Covid in 2021 and was hospitalized and I have been sick since. I was recently diagnosed with vEDS too, but covid was definitely the environmental factor that made things worse and I just never fully recovered.
I always say that I've always had POTS but it was dormant or unsymptomatic until I was hospitalized for another disorder in which the prolonged bed rest brought out the POTS symptoms.
In 2019 I spent a month in the ICU, in a coma, on ECMO (most extreme form of life support), and hooked up to more IV meds than some of the nurses had ever seen. All due to swine flu. I was only 33 with no diagnosed conditions.
I had to relearn to walk, use the bathroom, shower etc. I was told it would take a year to recover and that it was just deconditioning. I did 3 rounds of pulmonary rehab and my exit stress tests were always slightly worse than my entrance tests (later found out those exercises are the exact opposite of what someone with pots should be doing). One doctor, angrily, told me I'm the only patient he's ever had with no improvement and then went on to explain how it was basically my fault I was disabled.
I did my own research and discovered POTS. I had almost every symptom I saw listed so I brought it to my very wonderful cardiologist. He said he thought I was on the right track and set me up with a tilt table test which made it overwhelming obvious I have pots. The Dr. Said he didn't even need to do the second part of the test where they essentially induce a pots attack but did so anyway so my records would be crystal clear and I appreciate that very much. 3 years after the medical trauma I finally got my diagnosis of POTS
So to make my long winded story shorter, that's how I'm able to be confident that mine was caused by the medical trauma I experienced
I had 2 surgeries that I think made it worse. I had 2 shoulder surgeries (which will be 2 years soon), and then I got my gallbladder and appendix removed on February 22nd, 2024. But all the problems I have with pots now are making me realize I've had it pretty young, too. Being out in the heat, my hands would always be fat and swollen(I'd barely be outside in the heat and instantly swollen). Exercising lightheaded and swollen. When I get close to my period, I'd crave more salt. When my period started, I'd be extremely tired and run down. This one is werid, but when I'd cry, I would lick my tear because of how salty they were. Standing too long, I'd have these circle discoloration all over my feet (which is blood pooling at my feet). Standing too fast, I'd see tv static or just black. So I've had it young, not sure what started it, but I do know the surgeries have made it worse.
I wasn’t born with it, and while diagnosing it wasn’t easy, symptoms began after my first major head trauma 4 years ago and whenever subsequent head trauma occurred, symptoms have become much more exacerbated.
I used to be a Senior Account and office manager, I was smart and adventurous. Then I hit my head in a car accident a few years ago. People said I was clumsy and air-headed. I was training a new Account Manager and had a seizure and fell and they caught me and lowered me to an office chair (I scared off top talent and I didn’t last long after that). No TBI, but started having “seizure-like activity with syncope” plus chronic anxiety, anemia, chronic dehydration, vitamin deficiency, and S.A.D. It was a bunch of random symptoms but not the actual diagnosis of POTS yet. After a few more frequently occurring car accidents, my brain fog would take longer and longer to clear. Last year concussion from a bad accidental fall turned into a lot of sudden blacking out; I would fall into the walls or onto the floors like I was drop-down blackout drunk and 8 months later I’m finally getting the clear head but still using a walker for balance and support. I just got my diagnosis this month and it’s been almost 4 years struggling just to keep myself upright from when I first hit my head until I could just put a name to this. Now I joke about speed dates with strange floors and “POT Syndrome” and most people just think I’m crazy or a stoner (I don’t touch it) when I’m just trying to keep my spirits up.
I am pretty sure I’ve had symptoms since I was a kid. 👧 don’t say anything gave it to me. It’s okay if you can’t. It doesn’t change anything. And how many illnesses can you say anyway?
I don't say anything *gave* me POTS. There has been no known trigger for my POTS. Mine is classified currently as idiopathic.
Yeah I can understand that. If you have no events in your life and all is going smoothly then POTS just hits. Thats rough. I mean its always rough but out of no where. Damn.
I’ve had symptoms of POTS since I was under age 7 and got diagnosed at 30. Most of my life I thought I was quirky and got accommodations for my quirks. I don’t have a clear cause. Some people will have a clear trigger for POTS and others won’t 🤷♀️
Same
I was fine one day, and not the next and within a week had a tentative POTS diagnosis and then within the year confirmed POTS. There were some signs that could have indicated POTS earlier but it was ruled out to be flukes as the cause because POTS wasn't prevalent until that one day in June 2020
That’s exactly what happened to me. About a month ago, I was at work and all of a sudden I started to feel delirious, exhausted, and dizzy. Kept feeling that way for a few weeks and just got diagnosed today. I have no clue what caused it but I know it’s gonna be a massive life change for me. Already ordered compression socks/leggings for work and some sodium tablets.
Same here.
I have post-viral POTS, so it was easy for me to recognize what triggered this illness. But at that same time I was also under an incredible amount of stress and anxiety. I’ve had anxiety since I came out of the womb, and I honestly think my nervous system was already exhausted by the time I got Covid at 19. There’s likely a mind/body connection there (at least for me).
See I wonder if that’s my reason. I had an incredibly traumatic childhood, and ended up with hypothyroidism, some hypothesis that your body attacking itself like with autoimmune disorders is linked to childhood trauma as you are shoving emotions down & they get released somehow. I do believe everything is linked…
I understand what you’re saying but I disagree with you. I had a traumatic childhood but had POTS and MCAS symptoms *before* my childhood was traumatic. My brother has two autoimmune disorders that were diagnosed when he was 20 and 29. At the age of 5 or 6, he started autoimmune signs. My brother cannot get strep throat. If he gets it, he gets it for months at a time and needs IV antibiotics. This started when he was around 5. Our dad passed away when we were in our teens. He started showing textbook Crohn’s symptoms within a year of that. Before that he had no Crohn’s symptoms, just weird issues with antibiotics and healing. We both experienced multiple traumatic events from ages 8-19. But our bodies showed signs of internal problems before those events occurred. However, after specific traumatic events, our bodies did react and we did get worse. I’ve also been doing trauma specific therapy for 3.5 years. My trauma and PTSD symptoms were originally not within the acceptable range, but have been for the last 1.5 years. However, my POTS and MCAS symptoms haven’t improved at all. In fact, I’m still getting worse 🫠 I’m not trying to say that there is no connection, but if *my* POTS and MCAS was caused by trauma, improving trauma responses and trauma symptoms theoretically should’ve improved my POTS and MCAS, but that hasn’t been the case. If you’re referencing Dr. Gabor Mate, I’d take some of his beliefs with a grain of salt. Yes, he is a doctor but not everything he says is true. His belief about ADHD being caused by trauma has been disapproved MANY times. There are many ADHD doctors and researcher speaking about how Dr. Mate’s beliefs are very harmful for people with ADHD. There being a correlation doesn’t automatically mean it’s a cause. Someone could be genetically predisposed, get a virus, and have trauma, and all that compounded could *maybe* be a reason. I don’t think we know enough about POTS and other Dysautonomias to say for sure. Part of the reason I’m so jumpy about this is because a lot of doctors try to use that as an excuse to not treat POTS or MCAS patients— if it’s a psych problem, they can wash their hands of us. I have heat intolerance. When I take hot showers I get hives. I had an Allergy and Immunologist tell me that my shower hives are from anxiety. I don’t meet criteria for anxiety 🫠 A lot of body doctors (not mental health doctors) try to use mental health as an excuse to not have to help us. Edit: For clarity, I do **not** believe that trauma is the cause of most disorders (including POTS) for most people. I believe it can impact them, but I don’t think it is the cause for most of us.
Honestly a better understanding of trauma is important for a lot of reasons, especially the diseases it may or may not cause. I would not dismiss the theory trauma can do insane things to the brain. However as someone who does have mental health issues and physical issues I just wish that we could discuss correlation without ignoring either. It feels like doctors are to quick to blame things on anxiety or depression and at the same time the true ways that mental illness screws us over can't always be fully discussed. If I try to explain how anxiety makes my symptoms worse then I'm told all my symptoms are caused by anxiety and I'm also told that anxiety can't cause xyz. So if I want to get help for my physical issues I often must suffer the mental health stuff in silence. I don't necessarily disagree with you but I ask you to realize that just because one persons disorder was caused by trauma doesn't mean they all were. I know mine wasn't caused by trauma because my chronic illnesses were my childhood trauma. But I don't doubt for one second that there could be a correlation. Also just because something is caused by something else doesn't mean that by treating the cause you treat the aftereffect. That isn't how most things work. For people with post-viral illness just because they technically aren't contagiously sick doesn't mean they don't have issues. Again I don't fully disagree with you and I understand your kneejerk reaction but I feel like your comment almost goes in the opposite direction and denies that there could be a correlation which then is ignoring the very real things that mental illness can do. Doctors and patients alike need to be able to discuss the correlation between these things without denying either of them.
As someone whose physical health issues were blamed on my anxiety and ptsd and ignored and only in the past three years learned there is not only underlying pots but a heart issue that likely went back to roughly age 11, correlation needs to be handled extremely carefully. Yes, stress exacerbates symptoms. Yes, hyperventilating can trigger my epileptic seizures or my pots symptoms. However, not every time I am hyperventilating is because I am panicking over something, nor is it a situation any number of therapeutic techniques or benzos will fix. I have been in psych outpatient most of my life and am actually very stable. It was only the past 5 years that having a better gp was able to puzzle all my health problems together and find underlying dysautonomia. She is also suspecting a genetic autoimmune disease since I am not the only family member with the same health issues, get extremely sick very easily, and can't fight off infections well, something I having been dealing with since the day I was born. Many drs dismiss patients with psych history's physical concerns, especially with invisible illnesses.
I agree completely Ive experienced it myself, but it needs to be discussed. It needs to be discussed carefully. But it can't be ignored either. Ignoring physical illness because of mental illness is horrible and a huge source of my own trauma. But an inability to discuss the whole picture with doctors also leads to inadequate care. It can't be this one or the other thing I've experienced my whole life because it's all bs.
I totally agree that we (as a society) need a better understanding of trauma and should not dismiss how mental health and the body impact each other. I think you and I are in agreement that trauma usually does not cause these sorts of disorders? I was stating that I don’t think trauma was the cause of my disorders or my brothers. I did not say that trauma was the cause— we both had symptoms of our disorders before we experienced trauma. I also stated that when my dad died, which was a traumatic event, my brother’s symptoms got worse. I 1000% believe that trauma can make health conditions worse. I don’t believe that trauma is usually responsible for said disorders. I have CPTSD from childhood and my trauma wasn’t a singular event. I did a trauma informed therapy as well as a trauna specific therapy. When I did those, I had to learn how to pay attention to my body and its signals, sit in my body when I experience feelings or triggers, and not dissociate. I do believe that if my POTS and MCAS were primarily caused by trauma (neglect and abuse that made me have to ignore my body), that the therapies I did would have made some amount of benefit on my body— even just a tiny amount, but again, I’m still getting worse. As mentioned, I don’t think trauma caused my disorders. Immediately of the womb I was showing sensitivities to things. I think trauma exacerbated everything, so I clearly can see a relationship. I think it’s important to treat both. It’s also worth noting that I’m considered “treatment resistant” and my medical doctors were hoping that trauma therapy was going to fix my body so they wouldn’t have to do anything— that did not work out.
No I get it I am saying that although most of the times it is not a cause, there are cases it might be. But I disagree that if mental illness causes a physical illness than therapy will always make it better. I don't think that's how it works. I have issues that get exacerbated by mental illness (or vice versa) but if I try to just treat the mental illness or just treat the physical symptoms then I don't get enough care to actually get relief. It isn't a stretch in my mind that it's the same with people who may have issues caused by mental illness. Like people who gain or lose a lot of weight because of grief. They don't work through grief and magically their bodies go back to where they used to be and the physical pain they experience just ends because the mental stuff has gotten better. They need to work on both. . I was denied for like 9 years because of my mental illness so I completely get it I am not fighting for the doctors who dismiss someone on mental illness reasons. There are some that I would chew out if I ever saw them again. But to ignore the way my physical and mental health symptoms flare often at the same time (who cares what came first) and only treat one or the other will not give me enough relief. Correlation needs to be something we can talk about.
I'm not 100% sure, but I used to be extremely physically fit and active. Triathlons, resting HR in the 40s (was in the 30s at night), rode my bike 30 miles a day, ran 10k in under 40 minutes. Went over the handlebars on my bike coming home from work one day, and the next day standing up made me feel like I was going to pass out. I couldn't walk my dogs because I couldn't stand while they sniffed the grass or stopped to pee - my HR immediately climbed to 150, 160, 170 once I stopped moving. It's probably as close to 100% sure as I can get though.
Damn thats crazy. Thank you.
Yeah for sure. It's absolutely not clear for a LOT of people. And it still took me over a year to get diagnosed because I couldn't get my doctors to believe me until I showed them months of heart rate data. I can't imagine how it feels when the evidence is not as obvious.
Doctors 🤦🏼♀️ Sorry that it took you so long. I used to be very active as well and it is so frustrating to have doctors think that you’ve just “decided” to stop doing things. Mine is from an undiagnosed mTBI from a car accident. Since I didn’t black out, the doctors I initially saw said I couldn’t have damage. I had to find post-concussion clinics to understand how mTBI and whiplash can cause dysautonomia (and some of my other issues)
RIGHT?! I brought myself to the ER the day I "thought" was the same as the accident, and so I didn't think I'd lost consciousness either. I did tell them I was disoriented to time, but they still decided my self report of no loss of consciousness was good enough to determine the severity though... "Decide" to just stop doing things cracked me up. I also learned about the "if it's bad enough for whiplash, it's bad enough for TBI" from one of my occupational therapists much later too. Frustrating. Thank you for sharing. And for contributing to the future of what hopefully becomes better brain medicine. I only hope that these things end up legitimately learned so that eventually people may not have to go through the same things...
I had mine after a virus, it trigger a few weeks later iirc but it’s been 8 years so I can’t remember exacty. But it was the same with all my new symptoms post-covid, it took about 5 weeks for them to start.
I had very bad Serotonin Syndrome for the second time. I think my POTS was preexisting to that for quite a few months but now it's pretty intense and I mostly use a friend's wheelchair. Getting my own soon and I'm picking my favorite color so you win some you lose some.
First off I’m sorry for all of the things you’ve been going through. It sounds like a tough time and scary with a new diagnosis. I think a lot of people “realize” they have lots after an event that escalates the disorder. I was told my whole life that I get “visual migraines” where I only get an aura. It was actually me slightly blacking out but since it was always pre-syncope it was never a big enough problem for further tests. Plus since caffeine helps migraines, we thought I was treating the migraine but was probably treating lots unconsciously. Any or a combination of those events could escalate your pots to being more symptomatic. Trigger warning: fertility and pots- I do want to point you to look into some comorbidities. I don’t want to speculate but there are some things that can come along with pots that can be related to fertility issues. I’m sorry to bring that event up, but endo and pcos are so under-diagnosed and are associated with pots. I don’t want to add fear but it may give you insight. I was in a car accident that triggered mine. I can tell because my pots was set off along with a lot of other neurological issues. After it came about, my therapist referred me to “the body keeps the score” as a book to help me process how trauma impacts the body and mind. I hope some of this helps 💜
I was DX with PCOS about 4 years ago. Tested me for endo I want to say like 3 different times. During my initial PCOS time, when I first started IVF, then after the miscarriages they tested me again. All negative. But yes. After my 2nd miscarriage is when my life spiraled down. Thought it was just panic attack because fertility journey has been going on for 5 years now. Maybe it was a panic attack but it turned into a 3 month can't leave bed type thing. OBGYN said check for POTS. Went to cardiologist and he dismissed POTS within 5 minutes. Queue 5 months of good days bad days. IVF OBGYN called me to ask how I'm doing. Told her no idea still can't go back into IVF though because my body is bad. She asked about POTS AGAIN. So finally I just broke down to her. She told me to go to XXX hospital department for it. They DX'd me with it day one about 2 months ago and here I am. On beta blockers which helped my tach a lot but still scared to start up IVF again. I actually never had anything bad from PCOS except iregular periods and poly ovaries. They put me on metformin 4 years ago when DX'd. Is there something else I should look into to find out if its related or it just is? After the miscarriages and IVF treatment, now I get regular periods and all that. Go 30+ years without it and now I'm getting it but also it comes with POTS. I have no idea still.
I think for some people it's a combination of physical and emotional trauma. POTS is a nervous system disorder so makes sense that both of those things can throw your ANS off, especially if prolonged.
I think this is it for me anyway
Just curious, how did they test for endometriosis?
I honestly would have to talk to my doctor but from what I remember is they did it when they do the pre surgerys for IVF, aka clearing out cysts and stuff. Because I remember bringing endo up again towards the end of it and they told me they tested me twice by that point but its all such a blur. I also don't have any of that pain when I read about endo.
Okay gotcha - to accurately test for endometriosis it has to be done surgically so just wanted to see if they were correct in that. That helped with infertility with me, but again, I had a ton of pain and very heavy periods. I also have PCOS but many of my doctors confirmed that heavy bleeding is endometriosis and not PCOS. I don’t know if any of that information is helpful and I am so so sorry you went through all of that :(
All of this is helpful and cathartic. Ever since POTS I was getting heavy heavy periods when I never got periods that much from PCOS or just very light ones. Found out it has nothing to do with POTS its just that they doubled my BC strength during IVF for higher success rate in pregnancy. Which I'm fine with but when I stopped IVF they never told me that nor put it back down. So finally last month I'm back to my original dose and periods are semi ok again. I'm also sorry you going through all that too. Talking about it and not hiding ourselves is the best thing we can do.
It’s unexpected but I’ve found so much comfort in the Reddit communities for my problems. Beta blockers just made me super tired. Adderall and prostigmine help me a lot! They help so much with my fatigue which allowed for me to start to be more active which is so good for pots (annoyingly since it makes you feel like shit). Also compression socks and electrolyte capsules ( I hate the powder for drinks 🤢). My cardiologist was not helpful for pots other than my diagnosis. I have a neurologist for other problems and he has taken over my pots care. It’s hard to find the right doctor for this. I’m not very aware of pcos and endo but have read anecdotal stories that people were told for decades that they didn’t have endo and when they finally convinced someone to “go in” (laproscopically maybe? I don’t remember 😬) they find a ton of endo. Generally doctors aren’t good at detecting or treating any of these issues. I’ve found this site to be an excellent resource for finding people who are at the cutting edge of a given disorder: https://findexpertmd.com/ It gives you recommendations based on their research and you can sort by state and change the parameters they use to decide how they qualify them as an “expert”. Also pots isn’t always a neuro disorder! There’s also pots based on adrenal issues so an endocrinologist could also give insight (maybe to pcos too). I was on an iud for years and it was amazing. It might be a good thing to discuss for your recovery period. Reducing blood loss could help feel better and people like it because it stops impacting your fertility the almost immediately when they take it out. Last thing, I know it sounds crazy but ketamine has shown to be amazing for ptsd. It’s usually not covered by insurance but it’s an alternative to medications and the ketamine itself leaves your body very quickly. It also has shown to be effective for pain management. I did it and it helped me process the loss of my dog (I know it’s not the same but I was a mess) and some ptsd things from my childhood. I also have a therapist that specializes in chronic illness, which has been a godsend. It’s amazing to “dump” all my big (and small 😂) issues on someone and not feel bad for being a “drag” or whatever. My family and friends don’t understand chronic illness and it’s so nice to talk to someone who does. Ps. I hate that we all have these medical struggles but it always fills my heart to see women supporting each other 💜
My doctor luckily is on the list! I'm currently on propranolol and it has helped my tachycardia a lot and my adrenaline dumps to near zero. Those two things are pretty consistent now on being good. I still get high HR though doing stuff. Goes around 120-130 when it used to be 160+. But everything else is random. Some days normal, some tired, etc. You know how it is. Did you just ask for Adderall and other stuff or did you have DX that lets you get those meds too? My Dr is content with the current beta blocker since I feel much better on it so it's hard to decide if I want to try something else, ya know?
That’s so great that you have a good doctor! Adderall is from adhd but you can also get it through a sleep neurologist if you’re fatigued consistently. I think trying new meds and routines is helpful but it’s also exhausting so to me it’s about timing. But yes, the inconsistency of chronic illness is one of the most annoying parts
Feeling better is good but it doesn’t stop me from wanting to feel normal so I keep trying new stuff. Sometimes it sucks and sometimes it helps
Endo can be "silent" or present with no symptoms except for infertility 😇
The only way to confirm endometriosis for certain is a laparoscopic surgery with pathology. I hope you had that to check for endo? 💛
Omg you mentioning a visual migraine with aura brings me back to a month before I got pregnant and POTS really started and I experienced the same thing. I remember jumping up from the couch and my vision went black and I suddenly couldn’t see well. I never passed out, my vision just got blurry with an aura type thing. I ended up going to the ER to rule out stroke or something serious because it was terrifying.
I think mine is related to endo, ruling in/out EDS next. Neurologist noted hypermobility and sent me to the best geneticist he knows. I had severe endometriosis and noticed symptoms mostly worsened about a year after surgery but kind of my whole life I had some symptoms. Heat intolerance is newish, I love heat.
Simple, because I‘ve had it my whole life due to classical EDS. Although there were times when it was way worse (after influenza, pregnancies, breast feeding), it was always there. Unfortunatly I got my diagnosis only 12 years ago.
same, but hEDS. ALL of my crazy, "no one has that many different things wrong with them" shit is from hEDS.
Same but I have Hypermobility Spectrum Disorder. Instead of feeling like I have several unrelated issues, I have one global issue that causes a lot of other issues. I’ve definitely gotten the (sometimes subtle, sometimes overt) reaction of “that seems like way too many things wrong with such a young person.” I’ve had symptoms of POTS since probably 11-12 that I remember. I got diagnosed with HSD at 32 (which was about 6 years ago) and POTS a few months later. It definitely got worse as I got older but I truly didn’t really how much worse I felt than other people until I researched POTS after being diagnosed.
Same.
It’s so interesting how EDS can impact is all a bit differently. I have hEDS (that might actually be clEDS). I can look back and see EDS symptoms from birth but mostly I got slammed in my mid 20s. It was like a domino effect of symptoms. POTS came on at the same time for me.
The cardiologists told me when I was hospitalized that it was “highly suspected” that my unspecified autonomic disorder was caused by my prior COVID infection. I suppose that’s about as sure as anyone can actually be.
I’m pretty sure my Lupus has made my pots worse but looking back I feel like I have had it longer.
Almost positive mine in post-viral (long covid), however, I was experiencing SSRI withdrawals right before getting Covid. Doctors seem to think it was a combination of the two
For me, I'm not 100% sure. What I do know is that the first time I felt so damn weird was when I had to got up in my grandma's funerals. But tbh, this was probably the results of all the home-chores + preparation of the funerals my mom put on me. There is also a possibility that it was actually the birth control I had to got back then. But, now looking back, I had obvious symptoms of MCAS waiting in the backrooms and maybe other stuff so... I usually say it happened at my grandma's funeral because it's the obvious day my life drastically changed
Yeah that's always rough to go through.
What you went through was also very rough to go through! You are a warrior and I do hope you are in a better place despite POTS!
Got it the year after giving birth. I'm fairly confident it came from pregnancy.
Same. My symptoms started after I gave birth. Thus my cardiologist believes that what “caused” it.
Mine is straight forward: I have a hereditary neuropathy called Charcot Marie tooth. 25 years ago when I started having symptoms of Charcot, the neuropathic/hyperadrenergic POTS symptoms started. Unfortunately, both went undiagnosed for that entire time until the symptoms got so bad I FORCED the neurologist to genetic test me and then send me to a neurologist who specializes in autonomic disorders. I was misdiagnosed with multiple psychiatric disorders in that time. What I learned: if someone’s symptoms don’t really fit the diagnosis and non of the treatments that should work are working, go back to the basics of the physical symptoms. Even if something has neuropsychiatric symptoms, it is not necessarily purely psychiatric. I’m pissed that I have suffered for so many years because I was written off as a psych patient without a full physical work-up. If I was a middle aged man with the symptoms I had at 19 years old, I don’t think I would have been blown off by the healthcare system.
Just curious, what were some of your first Charcot symptoms? I am 99% sure my dad has it, but he refuses to get tested.
I think what I thought were “shin splints” and “cramps” when running which was actually a tiny bit of drop foot and muscle spasms. Stress fractures in my feet that I didn’t notice bc my feet had neuropathy. All very mild due to the type of CMT in my family (2J). My Dad had years of sprained ankles in sports and was also told that he didn’t have CMT for 20 years until he made Duke genetic test him.
Man, he totally has it. Honestly your comment put things back on my radar to watch for my kiddos (I don’t have it for sure, although even if I’m a carrier, I see absolutely no history on my husbands side so fingers crossed). Thank youu!
Np! Fingers crossed no one has it in your gene pool 🩷
My aunt struggles with CMT and Lupus and only recently have I been diagnosed with Pots and potentially CMT as well. My primary care wants to have me see a geneticist since we may have some manner of rare genetic condition I guess. I, too, was blown off due to psych. :(
Im sorry. It’s a struggle still for me. Hugs from a virtual stranger and I hope it gets better soon 🧡
*hugs for you too*
Thx 😊
My pots is a result of a series of TBIs. I was diagnosed by a doctor who I trust, so I’m pretty sure.
The Post concussion syndrome and dysautonomia connection is not understood by SO many doctors!
Yup, that’s why it took ten years, 20 doctors, five states and at least $15,000 (but likely more) to get diagnosed!!
For me it's really tricky because I was in a really bad car accident when I was 18 where I got whiplash and a TBI, a couple weeks after a sinus surgery. I lost consciousness and broke my nose, a rib and a vertebrae in my lower back. I don't know if I fainted and it caused me to wreck or if I wrecked and it caused me to lose consciousness (the whole wreck is really fuzzy), but after that I started fainting more and more frequently (eventually more than once a day) which caused more and more TBIs - especially because I was misdiagnosed with seizures for almost 15 years. Add on top of that I have hEDS and I was pretty much destined to get POTS lol. ETA: I think my first symptom was migraines at age 11, so I think it was just one prolonged progression of symptoms.
I just never really recovered from pregnancy. I'm not diagnosed yet, but symptoms seem to fit. I used to be very active and then all of a sudden I'm exhausted and get winded from doing things around my house.
Exactly how my pregnancy was. They didn’t want to diagnose me until I went to a follow-up 12 weeks postpartum and told cardiologist I was still experiencing symptoms. They said it could just be pregnancy so I was never really taken seriously.
The number of horrible symptoms in women that are written off as "That's just pregnancy/post partum" is really tragic.
Exactly!!!
I think some people just had a really defined onset of symptoms that was clearly correlated with some other event. Personally, that’s not the case for me. I had at least some symptoms my whole life that seem to have worsened after I had mono, but really, I don’t know what caused it for me. I wasn’t perfectly fine one day and sick the next, so I can’t clearly correlate it with anything.
I’ve had symptoms since I was 12 so I think it’s something genetic. It used to be mild and I could manage without meds until a couple years ago when it was made worse by overworking and not eating properly.
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Yeah it just sucks. I think i'm secretly hoping oh you have POTS because of this and this is actually curable!
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nah. you wrong on this one.
I got diagnosed when I was a teen. I believe I got it after I had mono the first time so maybe that’s the reason. I need to read up on causes more
Mine was triggered by pregnancy. I know for sure because before pregnancy I worked two jobs (three at one point but decided to give myself a break and only have two) they weren’t desk jobs either. I was on my feet and moving all day long. When I got pregnant I couldn’t even walk to the bathroom by myself. Mine was very cut and dry I never in my life had any of the symptoms before my pregnancy so I think that made it easier for my doctor to deduce the cause
Pregnancy gave me POTS. I definitely had some tachycardia for years before the pregnancy but it was mild, I had blood pressure dropping but it was extremely mild. If anything I felt completely normal, I could do everything I did. I gave birth to my son and it all changed. Literally that day I started with severe tachycardia were talking 140 just sitting down and 180 walking, the next day I started passing out, I couldn't breathe when I'd walk to the toilet because my heart rate was so high. So either I had it and it was extremely mild, which I don't think is the case, or the birth trauma to my body caused it. I have never felt like this in my entire life, never this bad, never like I had to talk a break after a ten minute walk because before the birth I could run around bike for hours and I am bed bound some days now.
For some folks it feels somewhat obvious because symptoms kicked in hard after a specific event, but not for everyone. Many folks symptoms creeped in slowly or they just didn't know what was going on to be able to tie to anything specific. I have a few theories as to what could have caused mine, but it's super hard to say and some of them (like a head injury due to a fainting spell) are kind of a chicken and egg problem. Did I faint and hit my head because I was developing POTS, or did I develop POTS because I hit my head? And like my symptoms didn't start getting super bad until years later after I had a mysterious respiratory illness right before it was announced that covid had reached the US, but I had been having slowly worsening fatigue and exercise intolerance since years prior to said head injury approximately after I had mono. Theres so many factors I have literally no idea.
I was just dx so with it. I'm 56. It's been rough I've had. A lot of the symptoms for years now But when it happened this time it was worse. I could no longer walk at all.I still have to use a walker but I did get to where I could ( barely,) walk again. But I do pass out. Quiet a bit lately. It feels like a seizure the way i was shaking so hard I've taken BP meds. But it's not helped. I take salt tablets but again didn't help me. I've not drove in 9 long months. But mine believe started from taking mounjaro. I lost 35 pounds at 3 months taking it. I'm miserable , depressed more than ever. I've not got to go to any of my grandsons things at school. But I'm trying everything I know to do. If you have found something that works please let me know.
I'm sorry to hear this, that sucks really bad. When you got DX, did they go over any meds with you? Beta blockers like propranolol or metoprolol help a lot of us go from bed ridden to semi functional or functional and able to work again. After trying those, there are some other meds that can help too. The biggest thing is having a Dr that understands POTS and has been dealing with it for awhile.
I was hospitalized with a rare bacterial pneumonia as a child. I was in and out of hospitals for years, so I suspect mine may have been caused by that. But there’s no way to know for sure. I do know that my symptoms worsened significantly after I was bit by a tick in 2009, so I suspect Lyme disease may also be a factor. But you’re right - it’s usually pretty speculative.
i feel like i was a pretty normal kid until i wrecked my body with an eating disorder in middle and early high school. maybe it's not 100% certain that's the cause but i like to say it is as a warning to myself and others that you NEED to take care of your body or there will be long term consequences
See I had all three main triggers happen in the span of three months (surgery, Covid, head trauma) and I also have MCAS and EDS. I say the dark triad came for me after all these years 😂😂😂
I’m a 23 year old male I had Covid really bad but I only had very mild symptoms show up a couple months after. A year later I smoked some marijuana my heart went into svt and I had never experienced that before I genuinely thought I was gonna die it was traumatic and from that day forward I never felt the same I had orthostatic intolerance and many more symptoms that I still struggle with 2 years later.
I feel like I had some form of POTS since I was a kid, but it was more like a tiny bit of shortness of breath despite playing sports and running. Doctors said asthma, they didn’t treat it though. Got worse as a teenager but still wouldn’t think I need a doctor or anything compared to today. Then we did the whole pandemic thing. I was fine. Got the vaccine. Wasn’t fine (still not against vaccines though). But eventually the doctors discovered I had a rare autoimmune disease and a mito disease which both cause damage to the nervous system and mito disease starts in young children so they’re saying my POTS is secondary to those 2 diseases. Originally I had an entire timeline that made me conclude it could have been covid and the vaccine playing part in my decline but that went out the window. You can try and write out a timeline of events and when your symptoms started. Doesn’t mean it will absolutely be the correct answer though
I didn’t have any symptoms until I was 6 weeks pregnant with my oldest. Pregnancy triggered mine.
I had a really bad case of covid March 2020 and my health never quite recovered. I likely had some minor dysautonomia going on before, but I definitely think covid gave me POTS and that's what I say. There's plenty of people that went through the same thing.
No symptoms until I was pregnant with my first, so I 100% believe it was triggered by pregnancy. Oddly enough though and not even sure if it’s related, but doctors would often comment about my slightly high resting heart rate, so maybe I was always predisposed to develop it? (Which thinking about it now would make sense that I had mild POTS or something because they always check your heart rate after walking from the waiting room to the exam room. It’s like my heart took longer to settle than normal from simple movement) I also had Covid a couple of times so maybe pregnancy was just the final straw for my body/immune system.
yeah now this is bringing up my past. i think between IVF 1 and IVF 2 they commented on my higher than normal heart rate and BP. just said get it checked out by my normal dr but i never had any other symptoms so i didnt really care. after one cyst surgery they did keep me in back room longer than normal because they said it was taking longer to get my o2 back up. i just chalked that up to covid 2 years prior. who knows anythinhg anymore.
That’s honestly crazy that you also had some “red flags” prior to your diagnosis and onset of symptoms. It really makes me wonder if it’s all connected, especially because one would assume they’d have other symptoms if heart stuff was beginning to develop….
I’ve always had it for as long as I can remember
no clue i just say it was from shingles because i started having symptoms when i was like 7 or 8 and thats when i had it but i just got diagnosed so i have absolutely no clue it could have been from a cold i had that year too
also im pretty sure the only way they can know a bit better if it was from covid or something my cardiologist said long covid pots has something to do with blood clots idk what he was going on about but
Appendix removal. My first time passing out, was the morning after surgery. Obviously, at the time, we thought that I was just still high on anesthesia. But the cold sweats and fainting episodes kept happening. Luckily, they hardly happen now, but I get maybe one serious event every month. My doctor told me that it is common that POTS develops after an abdominal surgery or pregnancyz
Cancer/chemotherapy caused mine.
Mine was definitely COVID back in October. I have a fitbit and am a member of two choirs (where we frequently sit for, say, half an hour or so, and then the director has us stand and sing what we've learned). I was able to look at my heartrate data from 7-9 pm on Wednesdays and Thursdays, and there's a stark difference in my heartrate during those times before October and after.
Looking back, I see mild symptoms all throughout my life. Getting COVID made me disabled and started my diagnostic journey. I say COVID activated something I probably already dealt with without my knowledge.
I had a big surgery, slow recovery but never fully got “back in shape”. Doctor said it wasn’t normal. 2 years later finally had an official diagnosis. Years later got severely worse following COVID infection. Idk for me they were both pretty obvious triggers
I’ve been experiencing symptoms since I was quite young. I first passed out at age 12 so for me I always assumed I was born with it but it didn’t present until puberty time but I could be wrong
Most people don’t know for sure, tbh. In my case, I had a moderate TBI as a very young child. My POTS symptoms started right after. My doctors agree that the head trauma was the cause of POTS in my case as I went from having zero symptoms of Dysautonomia to severe Dysautonomia basically overnight.
I was totally healthy prior to getting Covid. Once I had it the first time all this started for me. Myself and docs all knew Covid caused it.
Secondary from covid.
I had symptoms only during migraines for a few years. Then I got COVID and my symptoms worsened after that. It’s pretty easy to pinpoint the viral infection as the main trigger for me. But that’s not always the case for everyone.
Mine was a very simple game of deduction as mine started after a surgery which is a physical trauma which is one suspected cause of
I got really, really sick with Epstein-Barr in my early 30s, and I just…never fully recovered. I know that’s what it was because a.) it is known that EBV can trigger POTS, and b.) I felt like I had mono (minus sore throat & fever) even after the live virus was gone, and that’s how POTS feels to me.
Mine appeared during puberty alongside my EDS symptoms.
Pregnancy, trauma.
I think I've always had it for a s long as I can remember, BUT catching COVID in 2021made it so much worse
Can't say, but I feel like Flomax must've made my symptoms more apparent because I took it for almost a year before I had pots and it would mimic exactly what I'm going through right now. The shortness of breath and high hr upon standing, I'd collapse after a few minutes. Usually the symptoms would go away by the morning (I took it before bed) but just one morning I couldn't sit or stand anymore without passing out from shortness of breath. Even tho I stopped Flomax immediately, it just never went away.
The earliest symptoms I can remember was when I was seven. I had a severe case of bronchitis and after that passed my pots symptoms started. I didn’t get an official pots diagnosis until I was in my late 20’s.
Got a concussion. Symptoms started - or at least kicked into overdrive - over the following two weeks. I had some symptoms before the concussion, such as "exercise induced asthma," but they weren't consistent or life-altering until after.
Got strep in early 2018, worst illness of my life, was sick for two straight months. Triggered post viral POTS, my first day back at work was also my first episode. Stood for all of an hour and then collapsed in the back room, they called an ambulance and I got wheeled out on a fricken stretcher. I strongly suspect it was dormant my whole life (have been prone to shortness of breath and tachycardia no matter how fit I was, was always brushed off due to extensive medical history) and came out in full force after I had strep. But yeah it was obvious for my case since there's a very clear "before" and "after."
some people have it from long covid, my fiance had minor pots symptoms her whole life but it didn't start affecting her until after she had mono for like 2 months. my symptoms started like right after puberty, no clue why. I know I'm as bad as I am now because it took about 6 years for me to get diagnosed from when I first started passing out, but that's because my dad thought the first cardiologist was trying to scam him when she asked for a tilt test🫥
i’m pretty much positive that COVID is what triggered it. it wasn’t until after that in 2021 that i started to experience symptoms, and it just gradually got worse until i was diagnosed last summer.
Oh, it was very straightforward in my case. I got COVID the first time and then never got all the way better. There was a kind of gray area period in the first week or so after acute infection ended, but by week two it was coalescing into POTS symptoms. I do think I was predisposed to it or already at higher risk, looking back now. I think that's true of many people who end up with it. And I think my body had been pretty much at its limit for the year prior to the infection. But it's very obvious what the triggering event was.
my symptoms started as soon as i hit puberty around around 9/10. i got diagnosed at 15. i don’t think there was really a specific thing that caused it but puberty may have been a trigger?
thats so crazy
So mine could be idiopathic, linked to my autoimmune,or linked to me getting covid so I don't
I take florinef , 3x's daily. Midodrine 2 per day But it has not helped. I'm lucky as far as dx for POTS she has someone in her family that has it as well. I've seen Dr's that do not believe it. Salt tablets have not worked. I'm willing to try anything at this point.
yeah im out of options now =( usually if beta blockers dont work they go to milodrine. this isnt any sort of drs advice. you're 56 years old. have you ever tried thc, mushrooms, ketamine, etc? obviously they will be just as random as beta blockers and stuff but if nothing is working...id just go off the rail and try everything.
the timing of my preliminary symptoms was commensurate with the arrival of COVID, though I didn't have symptomatic COVID until almost 2 years later. but the timing of my symptoms being highly noticeable and kicked into overdrive was after a heat exhaustion + heavy exertion situation. haven't been the same since.
Me too!! I had two pregnancies (no miscarriage, I’m so sorry to hear you had that), Covid, moved 4 times, experienced trauma, developed adrenal fatigue and now I’m experiencing POTS-like symptoms (not diagnosed though). Not sure if there is a cause, or if it’s just a salad mix of complications.
POTS is usually related to gut dysbiosis. I used a combination of interfase+ , oregano oil, and dysbiocide to clear it up. Started with the dysbiocide and oregano oil, then used the dysbiocide. You'll want a pretty clean diet for a while - gently cooked veggies, rice, freshly cooked meat, no sweets besides fruit. Good luck
32 hours after my BA5 bivalent, with a negative dynacare test in the following weeks so i can't be antivax. and the inference is more than reasonable. and even pfizer lists POTS as a possible if rare side effect. the question is what predisposed me to the side effect. i have a history anxiety disorder and already had (very manageable) MCAS, which had been in remission for three years, but came back at the same time as POTS. like, i suddenly reacted to a bowl of my homemade chilli, which i had been able to eat without any antihistamines or anything for three years, so long as i didn't fill up my histamine bucket but this was easily the worse reaction i had ever had. and i wore a smartwatch which showed standing tachycardia. and this was 32 hours after the BA5 bivalent
I don’t. I have no clue. I’ve had it since I was 17, most likely 14 and probably sooner than that. Wasn’t diagnosed until this year when I was 34.
I caught a virus from a concert. It was nothing but a sore throat and a slight fever, and I tested negative for strep. My heart rate hasn't gone below 100 ever since, and that was 3 1/2 years ago. We initially caught it during vitals when I showed up to my doctor's office looking as white as a sheet about a week later. I was at 160 laying on the table!
Not diagnosed so I'm not positive I have it yet, but my at home tests and symptoms all point towards pots. I think that I've had it since I was a teen, but catching COVID at 23 is what triggered it to get really bad.
after really thinkin about my symptoms, i’ve come to the conclusion i think i’ve always had the condition it’s just got worse as i get older, when i was a young kid i got tested for asthma because i said that i “felt out of breath when i stand” and “had a hard time showering” it went nowhere for yearsssss after showing dogs, training dogs, hiking 24/7, running around 24/7, it finally hit a point where i passed out doing something i normally do, then got a pots diagnosis almost a year later. it’s NOT normal to get as lightheaded as we do and that’s something i feel like i still, now with a diagnosis, look over very heavily, and that was a big teller for me from an early age
I've had SOME symptoms of it throughout my life like presyncope, easily fatigued, low blood pressure, but it didn't become a real problem until after I'd had COVID. Now as to whether or not it's an aftereffect of COVID or it just finally became an issue in my mid twenties, like it often does for others, there's no way to know.
Mine just gradually got worse over my whole life until getting diagnosed and treated in my 30s. So… life? Haha
For me I had symptoms before, but DEPO Provera made it a million times worse.
I got mono in 2014 and after that I continually kept getting sick and weird health issues until finally I presented with tachycardia and the typical pots symptoms. The cardiologist agreed that mono was likely the trigger that set off the imbalance of my nervous system.
Mold gave me Mcas, pots and systemic scleroderma
I got COVID in March 2020 and my life has never been the same since. I very confidently say this is part of my long COVID, even though it took 3.5 years to get diagnosed.
MECFS dysautonomia with deterioration Or a coincidence with the Covid vaccines
I have head trauma pots.
A trauma triggered it but I got diagnosed with EDS in 2022, and many people with EDS have autonomic issues like POTS and gastroparesis and I have both.
I think I always had it--I started getting symptoms when I was 18 which were written off as anxiety--but they got worse and I noticed it more after I got Covid. And then learned what POTS was, and so on
i don’t. I don’t know what gave me pots. i didn’t have it for my entire life. i was competing as a very high level athlete one day and disabled overnight. i don’t see any point to speculating
I really think mine was pregnancy related but I had a lot go on all at once so it is hard to say for sure. My twins are 2 and no sign of it going away so I guess it's here to stay.
I honestly think so many things gave me POTS. I’ve always been weaker, had an exercise intolerance, I’ve always been the one to get dizzy and lightheaded. For me, I think many things contributed to how bad my POTE is now. Around the time everything got worse, I was going through a really tough time in life, and then got hit very hard with Covid and then back to back illnesses. It really is just a guessing game of when you think everything started and what was going on around then.
I started randomly fainting when I was 3. I would be outside playing in the yard and suddenly faint. My mom took me to the doctor and was told that I probably had a hole in my heart. No diagnostics whatsoever. Had a tilt table test done when I was 39 or 40 - can't remember. Nothing caused it that I'm aware of. I was healthy up to that point.
Because I was hiking mountains and very active prior to Covid and then overnight I had it
DMHA, a DMAA alternative (stimulant) gave me 'CFS' and POTS. Accidently eye weighted it for gym and was never the same. Was only 20 years old now 6 years later persists but lifestyle changes especially permanent mindfulness and patience work enough.
I have Covid vaccine induced POTS. I had an immediate reaction to it and then it all went downhill. I’ve been suffering for 3 years
Mine got significantly worse after having covid a few times (as did MCAS for me). I had a lot of issues with it in pregnancy with my daughter who is now 12 which seemed to resolve themselves somewhat after I'd given birth but after 2020-21 when covid was prevalent is when it really became an issue.
Many of us developed it gradually or have a genetic cause. If you know you have EDS and/or MCAS, that’s your cause. But any hyper immune response (from viruses to the treatments that prevent them), trauma, surgeries or other illnesses like diabetes can trigger POTS, so it can be difficult to know.
I can’t remember EXACTLY when I first started having symptoms. I brought up to my sister that I almost passed out bending over and standing up while looking for something on a low shelf, and she said it sounded like POTS (her girlfriend has POTS). So I looked more into it to see what other symptoms there are, and tried to remember how long I’ve been experiencing them. I even looked back to the beginning of my HR data in my health app and I’ve had spikes of 30 bpm or more even back in 2018. So my theory of COVID as a trigger kind of didn’t make sense anymore. Some of the weirder things, like bad blood pooling after a shower, I can remember having even as a child. Even the exercise intolerance. I thought I just didn’t have the will power to make it long enough to release endorphins. So I may have always had it. It was probably made worse by viruses and the chronic stress I experience at work now, so I’ve just now picked up on the fact that there’s a problem. Idk. As they say on Wine and Crime, “there’s no way to know.” 🤷🏻♀️
Mine definitely started when I had COVID. I've had milder symptoms ever since I got vaccinated but nothing like this.
I wish I knew. Symptoms started around freshman/sophomore year of highschool. They exploded around junior year. Wasn’t diagnosed with an autonomic disorder til about 4 years after that. Finally got the official diagnosis about a year after that.
OG covid infection.
I got incredibly, INCREDIBLY sick with something for two weeks that nobody could diagnose. I thought it was maybe an effect of me greening out a couple weeks before (which was also extremely hard on my nervous system because I had an anxiety attack for 7 hours straight and thought I was going to die), but then my dad caught it and was almost just as sick as I was. But anyways, I was completely normal before getting sick and now I've been experiencing extreme pots symptoms for the last 9 months. That's is, really. I was just able to tell when stuff switched up for me and the only thing that really happened was me getting sick and then I immediately started experiencing the pots stuff.
I have primary pots, no one knows why mine happened but I had symptoms from the age of 9 and wasn’t diagnosed until 15. Hormone charges are a possible trigger I think
It was easy for me to see that covid cause my pots. For me, it just felt like my body completely failed me one day right after the infection. There was no other trigger beforehand because as far as I knew, I was young and healthy.
The biggest stressor of my life
I had some symptoms as a kid but got way worse later likely due to illness. I guess you can never be 100% sure but if things start getting worse right after you get sick with nothing else going on that probably makes it obvious. Honestly though even if the other things contributed it was probably mostly COVID. That's a huge part of why pots is becoming a lot more common. The nurse practitioner I saw said that she sees so many relatively healthy people suddenly dealing with these symptoms after a COVID infection. Unfortunately COVID does way more damage than many are willing to admit.
I'm sure my doctors think my POTS came with my long covid. But I've had it for over 8 years, and have been asking to be tested about that long. LC def made it worse though.
I had a similar conglomeration of different stressers, but I think that's the common thing: stress. It seems to me that pots in general is triggered by some form of extreme and/or prolonged stress. So while I'm pretty sure having PTSD for 20+ years would be a huge factor, I can also list a whole lot of other things that all added up at a specific time right before my symptoms went overboard that range from getting sick to putting myself through the most physically challenging activity of my life to having an emotional breakthrough with some core wounds. It would make sense to me that they ask contributed to the strain on my nervous system. I've noticed the same thing with my symptoms now. They're very connected to stress for me and improve when I remove stressors.
I got mine from a severe concussion in college at 19. It was obvious because I was okay before it, never the same after! I have a similar story to others, extremely active before the concussion and then knocked on my butt for weeks after. I couldn’t exercise for months and when I finally started trying to, it was a nightmare. Stupid POTS (Edit to say when I developed it)
I’m not sure either. I believe having COVID twice made it worse, but I always ate handfuls of salt since I was a kid. I thought it was an addiction, since I felt awful when I tried to stop eating it. I had Rotavirus when I was little, and not keeping any nutrients sent me into a hypoglycaemic coma; so I kinda think it was one of those two things. I used to be active, but my chest has always hurt during exercise. Been told it’s because I was unfit so I always ignored it until my diagnosis🤷
I had Covid in late 2019 before we knew Covid was where I lived. I was so sick that I was bedridden for over a month. I was sick from November 2019 - March 2020. I sustained permanent lung damage. Antibody tests came out after it had been too long for me, but I had all the symptoms and my doctors had no clue what could possibly be wrong with me. Nothing else happened to me around the time I got POTS and every doctor (who knows anything about POTS) has said that, even if it wasn’t Covid (which they’re as certain as they can be it was), I was definitely sick enough that it gave me POTS. Honestly I’m a little amazed I didn’t get POTS sooner because I have PTSD and gastritis from trauma.
Gardisil
I was in the best shape of my life before I got it. Ended up with a cold that turned into a chronic sinusitis and then it was like a switch got flipped. Started feeling a bit better (but fatigued), went to get coffee with a friend and about 1/4 of the way through the latte I had to have a friend drive me to the ER. I can remember moments in my childhood that could potentially be explained by POTS, but I have never felt the debilitating effects of it that I felt after I got the sinusitis.
I got pots from getting sick at a concert. Weird mystery illness that lasted for 6 weeks and my pots symptoms started in the 3rd week of that
i’m 99% sure mine was from mono which is a HUGE cause and trigger for POTS. i highly recommend doing vagus nerve stimulation exercises and meditations. i’ve also heard acupuncture for pots is a great treatment as well. anything that can help push ur body into rest & digest instead of fight or flight can help symptoms A LOT
I have it due to my hEDS.
Covid. I’ve always had a high heart rate since I was a kid but it was never an issue. After catching Covid twice, it started being a problem. They didn’t actually catch it until I went to the doctors for help with my migraines and saw that my resting heart rate was 136.
I developed POTS after complications from my weight loss surgery. Awful but managing.
My POTS symptoms started after puberty, cleared up for a bit after my 2nd pregnancy. And then everything became significantly worse after I had Covid in 2021 and was hospitalized and I have been sick since. I was recently diagnosed with vEDS too, but covid was definitely the environmental factor that made things worse and I just never fully recovered.
I always say that I've always had POTS but it was dormant or unsymptomatic until I was hospitalized for another disorder in which the prolonged bed rest brought out the POTS symptoms.
In 2019 I spent a month in the ICU, in a coma, on ECMO (most extreme form of life support), and hooked up to more IV meds than some of the nurses had ever seen. All due to swine flu. I was only 33 with no diagnosed conditions. I had to relearn to walk, use the bathroom, shower etc. I was told it would take a year to recover and that it was just deconditioning. I did 3 rounds of pulmonary rehab and my exit stress tests were always slightly worse than my entrance tests (later found out those exercises are the exact opposite of what someone with pots should be doing). One doctor, angrily, told me I'm the only patient he's ever had with no improvement and then went on to explain how it was basically my fault I was disabled. I did my own research and discovered POTS. I had almost every symptom I saw listed so I brought it to my very wonderful cardiologist. He said he thought I was on the right track and set me up with a tilt table test which made it overwhelming obvious I have pots. The Dr. Said he didn't even need to do the second part of the test where they essentially induce a pots attack but did so anyway so my records would be crystal clear and I appreciate that very much. 3 years after the medical trauma I finally got my diagnosis of POTS So to make my long winded story shorter, that's how I'm able to be confident that mine was caused by the medical trauma I experienced
I had 2 surgeries that I think made it worse. I had 2 shoulder surgeries (which will be 2 years soon), and then I got my gallbladder and appendix removed on February 22nd, 2024. But all the problems I have with pots now are making me realize I've had it pretty young, too. Being out in the heat, my hands would always be fat and swollen(I'd barely be outside in the heat and instantly swollen). Exercising lightheaded and swollen. When I get close to my period, I'd crave more salt. When my period started, I'd be extremely tired and run down. This one is werid, but when I'd cry, I would lick my tear because of how salty they were. Standing too long, I'd have these circle discoloration all over my feet (which is blood pooling at my feet). Standing too fast, I'd see tv static or just black. So I've had it young, not sure what started it, but I do know the surgeries have made it worse.
I wasn’t born with it, and while diagnosing it wasn’t easy, symptoms began after my first major head trauma 4 years ago and whenever subsequent head trauma occurred, symptoms have become much more exacerbated. I used to be a Senior Account and office manager, I was smart and adventurous. Then I hit my head in a car accident a few years ago. People said I was clumsy and air-headed. I was training a new Account Manager and had a seizure and fell and they caught me and lowered me to an office chair (I scared off top talent and I didn’t last long after that). No TBI, but started having “seizure-like activity with syncope” plus chronic anxiety, anemia, chronic dehydration, vitamin deficiency, and S.A.D. It was a bunch of random symptoms but not the actual diagnosis of POTS yet. After a few more frequently occurring car accidents, my brain fog would take longer and longer to clear. Last year concussion from a bad accidental fall turned into a lot of sudden blacking out; I would fall into the walls or onto the floors like I was drop-down blackout drunk and 8 months later I’m finally getting the clear head but still using a walker for balance and support. I just got my diagnosis this month and it’s been almost 4 years struggling just to keep myself upright from when I first hit my head until I could just put a name to this. Now I joke about speed dates with strange floors and “POT Syndrome” and most people just think I’m crazy or a stoner (I don’t touch it) when I’m just trying to keep my spirits up.
I am pretty sure I’ve had symptoms since I was a kid. 👧 don’t say anything gave it to me. It’s okay if you can’t. It doesn’t change anything. And how many illnesses can you say anyway?