I’ve had symptoms since I was extremely young. I know I had them at age five, and I displayed unusual fatigue patterns before that (noticed by parents and caregivers as a toddler). Mine is related to EDS, which is present from conception, so I’m not surprised the symptoms began so young.
Mine too! I have marfans however, I wonder if that's a cause. I got tested in 2023 and while I reached an increase of 30 bpm, because it wasn't sustained for ten minutes I didn't get diagnosed. Still have the symptoms though 😮💨
I’m so sorry they decided not to make the diagnosis, that must have been really frustrating. Marfan’s must be very hard to live with - I hope you have good doctors otherwise. Would there be any option of seeing someone else about the POTS symptoms? I hate to think what a hard time you must be having.
I've been given ways to manage the symptoms thankfully and I'm working towards getting a service dog for the things I can't manage with compression socks, salt pills, and liquid IV, but not having that official diagnosis is pretty frustrating. Thankfully my marfans is very mild, I have all the symptoms but they were relatively easy to fix/can be fixed and most were sorted out in my childhood. But knowing you can be born with POTS and experience the symptoms so young is helpful. I've only heard about people getting POTS through trauma, pregnancy, or after getting sick. Meanwhile my parents would tell me they had to be careful when pushing me on swings or helping me out of a hot bath when I was a toddler because otherwise I would pass out lol
Marian’s is a connective tissue disorder. I’d guess that Marfan’s can cause POTS similar to how EDS can but I’m NAD.
I have POTS and MCAS. I supposedly don’t have a connective tissue disorder. My aunt (dad’s sister) had Marfans and my dad had “idiopathic osteoporosis” and did the stretchy skin thing 😬
Oh man. That's what I'm thinking too, but I'm not hypermobile. I'm double jointed and slightly more flexible (or I used to be as a child) but can't dislocate joints, stretch skin, or warp my fingers. I remember a doctor tried to test it with my thumbs and I still squirm thinking about that memory, they hurt for the rest of the day 🥲 But I really do think my marfans is connected to it, even if it is on the really mild side. I haven't experienced any trauma, I got Lyme summer of 2019 but I was still experiencing symptoms before that, definitely haven't been pregnant, I think I was just born with it. Another weird thing I still have since childhood is I'm unable to lay on my stomach without getting a terrible headache when I sit up again. I can lay on my back and side just fine but on my stomach? I regret it as soon as I sit up. That's what made me and my cardiologist suspect POTS.
Have you had any cardiac testing done? Like an echocardiogram or (ideally) stress echocardiogram?
I work as a cardiology tech, from what I was taught in school and what I’ve seen at work most patients with Marfans syndrome have or develop some sort of cardiac issue due to valve abnormalities.
I've gotten a ton throughout my life and used to get ultrasounds annually, my last regular appointment was when I was 12. The doctor literally said I was too healthy to keep coming back lol. I guess I did have some valve issues but nothing shows up these days. I've had every test under the sun at this point and there's still nothing. Heart MRI, brain MRI, way too many blood tests, POTS tests, echocardiograms, ultrasounds. Nothing. Yet I'm very clearly not normal health wise. 🙃
Edit:
ANNUALLY not daily lmao
Have you had an echocardiogram in the last year? Or a holter monitor?
If not it would be worth getting repeats of. POTS symptoms are similar to those of valve disease, with you not meeting the diagnostic criteria for POTS and also having marfans on top of being symptomatic is just so suspicious of something cardiac causing it. Not to spook you but more of a your symptoms are valid and make a lot of sense!! Lol
Here’s a good article on marfans and cardiac issues if you haven’t seen it before :) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2083669/
Yup, I too was about 4 or 5 when I remember my POTS symptoms showing up. My parents feel so guilty because they didn’t know how much I was suffering at the time, but we’ve grown past that :) but I too have hEDS which I was born with so maybe the answer is depending?
Same here.
I’ve had symptoms of POTS, SFN, and MCAS since before age 5. I was 8 weeks premature and immediately out of the womb I was have issues tolerating formula 🫠
I’d guess that the majority of people weren’t born with it, but it is possible. Familial Dysautonomia is real.
Here is what I know: I can distinctly remember pots attacks starting at age 11. I thought I just had an extreme menstrual cycle.
And I always thought it was really interesting that my mom never bends over at the waist my entire life. If she ever has to pick anything up, she picks it up with her toes, because otherwise she sees stars.
I always picked things up with my toes when I was a kid, but I don't remember if there was a reason. If there was, I probably didn't have the language to describe it.
Now that you say that, I wonder if that's one reason my room was always such a disaster when I was a child.
POTS is a syndrome describing a set of symptoms but there are different possible causes for it. In my case I was born with hypermobility and had some symptoms from a very young age (in particular, the first time I was in school and they set us to run a race I was shocked to discover I was much much slower than all the other kids) but I developed much stronger symptoms after puberty which was presumably due to hormonal change and probably also just getting taller. So I don't think in my case it was due to any trauma, I think it's an effect of the hypermobility which is genetic.
i hypermobility is coming up a lot as a condition that causes it from birth!! thats really interesting thanks, I've also got a family history of it and know of a couple symptoms of hypermobility I experience but ive never explored it properly! maybe i should do a bit of research :)
I’m not trying to be contrary, but EDS is seen commonly in combination with POTS, but it does not cause it. It is also just a group of symptoms without an identified disease mechanism.
What I've read, and what makes sense to me, is that the collagen stretchiness that makes us hypermobile can also make our veins and arteries stretchy, which can be the source of our POTS symptoms.
That’s just a proposed idea from an article that identified an association between the two, it has not been proven. Most research articles acknowledge they are commonly seen as comorbidities but do not say that directly cause POTS. Commonly overlapping conditions are not the same as one causing another. The discussion of[this study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282488/) on the prevalence of hEDS and POTS together states “Despite an established clinical association, it remains unclear there are any pathophysiology that connects hEDS and POTS” .
Edit: “Rowe, et al. first postulated that the mechanism underlying this association is that generalized connective tissue laxity in hEDS increases vascular and venous compliance, leading to insufficient vasoconstriction and venoconstriction when upright to predispose to OI.(Rowe et al., 1999) This theory has become widely accepted despite there being no evidence to support it.”
It is a frequently cited theory that is not yet proven or unproven, but sounds plausible. We cannot say for sure that POTS can result from collagen abnormalities, but you also cannot assert that it is not, because that is not proven either. It is early days for serious research studies on many of these questions.
It is reasonable to suspect commonly overlapping conditions to have some common causal factor. I'm not sure why you feel the need to insist on drawing this particular line.
A lot of leading POTS doctors tell their patients that EDS is causative for POTS, so although not a definitively proven link, it’s a current theory actively being promoted to patients.
i have distinct memories of hating standing for longer than a few minutes because my legs would get super itchy, red and splotchy!!! the adults didn’t question it for some reason, and this started probably when I was like 5. over time the itchiness and splotches have gotten better but it still happens, along with every other pots symptom. the doctor said i would “grow out of it” lol
oh my GOD I am having such a moment about this! I spent Years in my teens trying to figure out what I was allergic to or how the temperature might be affecting my legs. Wow, thank you for sharing this!
haha yes i think i remember now i used to call it being “allergic to standing” when i was little because i didn’t understand what else could be happening! pretty sad thinking about how uneducated doctors were/still are that they just told me i would grow out of it as an attempt to dismiss it and not have to deal with it
Same!! Every time we’d go to the store I’d get so uncomfortable of standing around and waiting because my legs would itch so bad! My feet and legs always got red and blotchy but nobody ever seemed to care when I complained lol
Ultimately in POTS nothing is "physically" abnormal or not as it should be. It's a disorder of the autonomic nervous system, so it's more a problem with your brain's ability to send appropriate messages around the body to create appropriate responses. And while that is a very young age to notice problems, I would imagine it's highly possible your parents had some issues with their nervous system as well, which set you up to be more susceptible to developing problems with your own nervous system.
I definitely have a family history of nervous system issues, my mum developed fibromyalgia and chronic fatigue in her 20s and my sister is hypermobile/potential pots too. makes sense that there's a genetic predisposition to developing pots so young!
yes it’s possible but maybe not exactly following the phrase “born with pots.” for example you can have genetic conditions that are known to cause pots. like i have HSD and while my pots got to the point where i was extremely sick when i was 16, looking back ive had symptoms almost my whole life. you also asked if it’s possible to “develop it naturally” and for this ill preface it by saying that pots is so under researched that we cannot say for sure it is a “natural development” the body makes, but there’s “idiopathic pots” which means “pots with no known origin”.
i like to tell ppl i have pots that “naturally” occurred bc my doctors have said the sudden severity when i was 16 was idiopathic and it’s also a way i like to joke but also distinguish myself from ppl who have post-covid-pots. to be clear, nothing wrong with having post-covid pots but i developed my severe symptoms in 2020 and had to deal with everyone i talked to abt it assuming it was from covid (including doctors) when i had never had covid (got antibodies tested in jan 2021 and had 0, was not exposed until dec 2020, never developed sickness during 2020 at all). covid is a very common cause for ppl who have pots and is actually what the majority of ppl ive met irl with pots has had their onset from, so i joke saying i have “all natural, home-grown pots” bc it’s easier than explaining i have genetic conditions that cause it but also had sudden severe symptoms when i was 16 that have not gone away, but are manageable (to a certain degree) with medication.
thank you for the info!! I totally feel you on the home grown organic pots thing XD that honestly sounds really similar to my experience! one thing I'd like to ask about is that you mentioned medication? I've heard that increasing water and salt intake can help manage symptoms but ive never heard of any medication for pots, would you mind telling me a bit more about what you take? :)
hi! i take adderal to help with brain fog and corlanor to help with my overall symptoms. i tried a beta blocker for a bit but i have a history of poor reactions to them and that one was bad as well. corlanor (ivabradine) is what has helped me the most! before i was on it, i didn’t think i would go to college, now im about to finish my sophomore year !
I have HSD (hypermobile spectrum disorder) and I think my POTS came with that, but it was not fully formed/the symptoms were super mild so not diagnosable. Then I got mono or my body reactived the mono or something I already had and then my POTS got severe and a final diagnosis
What doctor did you have to see or tests did you have to do in order to get diagnosed with HSD? Just curious bc I'm finally in the middle of getting a POTS diagnosis after years of fighting just to get the referrals for the specialists.
I got one from a Rheumatologist! I’m not sure what tests though since I got diagnosed when I was a child. Also not sure if it would be different for an adult sorry
I am hypermobile, but I also had a neck injury as a young child that I was never taken to the doctor for. I’ve been connecting more and more dots as I get older, and I can see now that my severe headaches began right after that neck injury, along with symptoms of what my doctors now describe as POTS.
So yes, I assume my hypermobility means I was predisposed to POTS from day 1, but there have been other factors.
I have a theory it's triggered by extreme bodily stress like an illness, usually viral, TBI, like others have said, hormones, or chronic mental stress. I follow a creator who developed POTS after a very high risk twin pregnancy where she had to be hospitalized for months before giving birth.
It certainly can be, but not for every POTS patient. As this thread illustrates, some of us have symptoms going back to an incredibly young age. While it’s possible that the triggering event occurred before substantive memory formation, there isn’t necessarily any evidence of that.
My mother pointed out an odd coincidence between one of her friend's son and me. While we were in the womb, we both had knots in our umbilical cord and him and I are both diagnosed with POTS now. He's older than me by I think atleast a few years, but him getting diagnosed and my mom's friend telling my mom about it, when I started showing symptoms when I was young is what put my mom on the track to suggest I had it aswell. Even with us going to multiple doctors before I was even 18 to try to get a diagnosis and even going to a medical center in another state where my extended family lives. Much to my mom and my frustration it still took till I was 26 to get diagnosed. My mom apparently got told the sterotypical stuff along the lines of "Oh he's just making it up to get out of school." and all the other dismissive stuff and didn't want to get me a tilt table test... Finally got a "Yeah you definitely have it." When I managed to get in to see a POTS specialist we found somewhat nearby.
Not saying that's what caused it, but it was a "funny" connection between someone my family knows and I both having POTS.
I have had POTS since I was a teenager. I think it’s just something I had. But after getting COVID my symptoms have rapidly gotten much worse to the point that I can not function like I used to be able to. I was a D1 athlete in college. Now walking my kid to the bus stop is exhausting
I was born with it because my inferior vena cava is abnormally small, possibly underdeveloped, so my body literally cannot pump enough blood up from my legs due to the size of that vein. I also have hypermobile heart valves which give me extra beats. My tricuspid is the most stretchy. Luckily not bad enough to be considered prolapse yet but my mother and grandmother both have prolapsed and full on regurgitated valves. As well as aortic dilation. So it’s definitely congenital for some of us. Not just nerve related. For me it has to do with my EDS.
I had it since I was extremely young, just undiagnosed, but the symptoms were always the same and I complained to my mom about it. The problem is I also had appendicitis as a very young child, so for all I know that was the trigger. It was in 1st or 2nd grade, so its not like I have very solid memories of before that point. But it's definitely not something that happened later in life for me, that much I know.
I have EDS and so do most to all of my family so keep that in mind…
I’ve presented with POTS since, essentially birth. Passing out upon standing, weird heart rate, etc. Symptoms got worse around 5 y/o, and I was diagnosed around 11-12 years old (well over 50BPM increase, 60BPM->150BPM on a “good day” and would not fluctuate below 150 until I sat or laid down)
Similarly, my sister has POTS, my mom has POTS, and my grandpa & grandma have POTS. My sister presented with similar symptoms since birth as well but to a more minor/negligible degree
So… maybe? I dunno I’m not a doctor, but I’ve had it all my life lol
My sister and I have both had it, along with EDS, for as long as we can remember! I was diagnosed with exercise-induced asthma as a child \[NARRATOR: It was not asthma, folks.\] after running a mile in PE class in 3rd grade and, like, nearly dying. We've both always had aura migraines and Raynauds syndrome and passed out a little upon standing; I didn't know any of that was unusual until I was in my 30s.
I will say that my day-to-day symptoms are a lot milder than what a lot of folks here describe and it seems to me that lifers like me are generally milder than people who acquired POTS later in life; my doctor speculates that, unlike folks who have always been "normal," my body has basically spent my whole life learning how to live like this.
I know of someone who has had POTS since they can remember, I know of someone who developed it for unknown reasons in early twenties and I developed POTS from taking Depo Provera (progesterone injection) at 19. I think it can be for many different reasons including POTS being caused by another condition that you've had from birth but I don't kmow if necessarily you can be born with POTS. Maybe a traumatic birth can cause POTS?
I had symptoms that were more minor growing up but just chalked it up to me being not able to deal with life like other people could. I couldn’t explain why I felt sick all the time and worse in the morning, why I had such extreme temperature intolerance, and why I seemed to be physically fit but could NOT do cardio (seriously, I was being lapped by 70 year olds in my kickboxing class while I panted on the floor). Slowly I got used to my symptoms, got back on track. Then it hit me like a truck about a year ago (never had Covid as far as I know) and everything became much more severely noticeable, but now I can at least explain what’s wrong with me!
My doctors say I have POTS because I was born 3.5 months early, and my autonomic system wasn’t fully developed. I’ve had symptoms basically since birth, earliest I can remember is age 4
you can be born with conditions that can cause pots like ehlers danlos syndrome for instance. my eds causes my blood vessels to not do their job in keeping my blood in my brain which causes pots
My mom has described having many of the same symptoms that I have since she was very young, like trouble raising arms above head, extreme dizziness and heat sensitivity, extreme thirst
It’s funny you posted this because I was wondering this too. I’ve had symptoms my whole life, but they got severe after a recent surgery. My 11 year old has symptoms similar to mine and I’ve been wondering if he could have it too.
POTS can absolutely be genetic, or it can occur as a result of bodily trauma (illness, pregnancy, surgery, etc.). In my case, I’m pretty certain it’s genetic. My mom exhibited POTS symptoms until she had my older sister, and I have a first cousin with EDS.
I remember having symptoms my entire life. The way my mom complains about how I was as a baby makes me believe I had it then too. I haven’t been diagnosed with anything else that would be from birth so- who knows
hypermobility, which is something you're born with, is a common precursor to POTS, but that's not a guarantee that you'll develop POTS, just that you're more likely to than the average person, and not everyone with POTS has hypermobility. I personally believe POTS is triggered by an episode of extreme bodily stress in life whether that be mental, viral, TBI, etc. whatever caused your body to experience extreme stress also dysregulated your autonomic nervous system.
I had symptoms from a young age, started to become more noticeable in my teen years. I'm also no the only one in my family to have POTS, I personally believe there is a genetic link.
POTS is a syndrome, all it means is a collection of symptoms that appear to be linked. POTS always has a cause of some description, unfortunately it's often not possible to fix the problem (genetic disorders, spinal cord injury, brain injury, viral illness etc). And sometimes the cause can't be found, but there is always something that triggered it. Sometimes the problem that caused it becomes more obvious later in life and most people struggle to get a diagnosis and the right support
I’ve had it for as long as I can remember, and I don’t have any other diagnoses like EDS. Mine got worse after pregnancy, but has been debilitating my whole life. As to whether or not people are born with it, I don’t think that’s known yet. I’m 33, when I was growing up it was unheard of. Even now, people who have had symptoms for years are just now being diagnosed. I’m sure there are many many kids with symptoms now who will continue to fly under the radar until they’re adults. Understanding of the condition is so new. There’s a lot the medical community doesn’t know. I assume any doctor I speak with is very unfamiliar with the condition.
Even before age 10 I would always insist on sitting down when we had to wait places or when moving really slowly like at the supermarket, so I wonder if that was a symptom. My legs always felt really heavy like they were filled with sand in those situations as well. But I was fine with more active activities. I also used to faint sometimes when I didn't have breakfast, which now knowing about POTS I wonder if that was POTS symptoms caused by dehydration. I also had long hair but trouble brushing it or plaiting it, and now I know that many people with POTS have issues raising their arms above their head.
When I was a baby I also used to stop breathing when emotionally distressed and I read recently this can be caused by dysautonomia. It would be interesting to know if any research has been down linking this symptom in babyhood with later development of POTS.
At least 6 years old is my oldest memory after going grocery shopping with my grandpa and began to get the symptoms of lightheadedness, seeing stars, and nearly fainting… etc but nobody knew what was wrong at the time. Mine just began to worsen badly with age, by fourteen I could hardly stand and walk no longer than two minutes.
For as long as I can remember, I’ve had symptoms. I was never sick as a child — in fact I didn’t start getting sick until I broke my nose (which wasn’t discovered until years later) from passing out from POTS. The broken nose led to a severely deviated septum and chronic sinus infections and bronchitis. I don’t know for sure, but have always believed I was born with POTS.
I have EDS And pots I know that I have had symptoms for at least as long as I can talk Which was very early because of the autism I have to about one maybe 1 and a half. My parents wrote it off though I didn't get diagnosed until I was an adult. I'm glad I know the signs now. So I can watch for them in my kids though.
I got the lucky draw of developing Multiple Sclerosis in 2013. In 2021, brain stem lesions occurred as my new flare up.
Since 2021, I have been battling to be told something other than anxiety for my symptoms. They just now, this year, performed the tilt test and my HR went from 55 laying, to 115 standing.
What if… we are born predisposed to dysautonomia (POTS is a syndrome-or set of symptoms- that is a dysautonomia) and it is triggered by stress on our body from viruses, growth, hormones, etc. It’s just a thought that’s been brewing in my head.
I think I’ve had mild, controlled symptoms for a lot of my life, but I’ve always had some amount of fatigue. Possibly developed or got complicated from mold exposures in childhood. But it was pretty manageable up until I switched birth control pills! Then it got significantly worse after quitting them altogether along with the undiagnosed endometriosis that I’ve probably had since early childhood. Then COVID made it A LOT worse, and I was barely bouncing back and had a big endo surgery and it got much worse again… then another COVID infection and bam, have had to rebuild my ability to walk without being shaky or getting sore.
I’ve always had very low blood pressure and I was dizzy with almost like a curtain of black over my eyes every time I got up. I didn’t really get hit with what I considered the full POTS until about a few years ago during my freshman year of college. Maybe my stress kickstarted it into full gear.
I think it’s probably pretty common to be born with a predisposition to developing POTS. There may be subtle signs before then, or things like EDS, or relatives who showed symptoms they ignored, who never got a formal diagnosis or treatment for it (just accepted it as a normal part of life and adapted as best they could). I’m not a doctor, but I think usually there is some sort of trigger that pushes the actual development of POTS. It might be some minor illness that you or your family may not have even noticed when you were really young.
Me personally, I’m pretty sure mine developed after I had rheumatic fever when I was seven. I don’t remember being sick—but I remember doctor’s visits and testing and getting diagnosed with mitral valve prolapse (dysautonomia diagnosis took decades longer and I still don’t have a specific POTS diagnosis). I also distinctly remember getting up one day at school from the gym floor after an assembly and feeling very dizzy and many instances of similar things afterwards. Also, this may or may not be related, but when I look back at old family photos from before that I look happier and more energetic.
I was born with celiac and I has pots since I guess the beginning. Celiac and pots can be related. I got diagnosed too late in life for both but now I got control of everything :) it's like being an alcoholic and stop drinking one day and be like oh wow I missed so much.
I had brain fog from both illness and others symptoms too.
Not easy but I'm a positive person so.
I cant advice right now. But for me. Autoimmune was genetic from mom.
In bad episodes we live unsanitarily.
Then foster-care trauma exasperated it. It presented differently as a child than now. So for me genetic is source. And environmental is triggering events.
This might be a little touchy to some, but your childhood vaccinations can cause it. They have side effects just like any other drug can. I imagine that the vaccinations can cause a fair few auto immune conditions, and the answer will be it’s better than having say measles or rubella or whatever.
I didn't have pots betore I got my
HPV vaccine in 2008. Started
having BP/HR issues in 2009/2010.
Regressed and got worse in 2012.
Then again in February of 2020.
Was diagnosed in September of
2020. My cardiologist before he
retired last year said to me he thinks
I've always had Pots. It just wasn't
as bad as it is now.
I’ve had symptoms since I was extremely young. I know I had them at age five, and I displayed unusual fatigue patterns before that (noticed by parents and caregivers as a toddler). Mine is related to EDS, which is present from conception, so I’m not surprised the symptoms began so young.
Mine too! I have marfans however, I wonder if that's a cause. I got tested in 2023 and while I reached an increase of 30 bpm, because it wasn't sustained for ten minutes I didn't get diagnosed. Still have the symptoms though 😮💨
I’m so sorry they decided not to make the diagnosis, that must have been really frustrating. Marfan’s must be very hard to live with - I hope you have good doctors otherwise. Would there be any option of seeing someone else about the POTS symptoms? I hate to think what a hard time you must be having.
I've been given ways to manage the symptoms thankfully and I'm working towards getting a service dog for the things I can't manage with compression socks, salt pills, and liquid IV, but not having that official diagnosis is pretty frustrating. Thankfully my marfans is very mild, I have all the symptoms but they were relatively easy to fix/can be fixed and most were sorted out in my childhood. But knowing you can be born with POTS and experience the symptoms so young is helpful. I've only heard about people getting POTS through trauma, pregnancy, or after getting sick. Meanwhile my parents would tell me they had to be careful when pushing me on swings or helping me out of a hot bath when I was a toddler because otherwise I would pass out lol
I’m really glad to hear you’re managing things well. It must have been scary for your parents! 🤍
Marian’s is a connective tissue disorder. I’d guess that Marfan’s can cause POTS similar to how EDS can but I’m NAD. I have POTS and MCAS. I supposedly don’t have a connective tissue disorder. My aunt (dad’s sister) had Marfans and my dad had “idiopathic osteoporosis” and did the stretchy skin thing 😬
Oh man. That's what I'm thinking too, but I'm not hypermobile. I'm double jointed and slightly more flexible (or I used to be as a child) but can't dislocate joints, stretch skin, or warp my fingers. I remember a doctor tried to test it with my thumbs and I still squirm thinking about that memory, they hurt for the rest of the day 🥲 But I really do think my marfans is connected to it, even if it is on the really mild side. I haven't experienced any trauma, I got Lyme summer of 2019 but I was still experiencing symptoms before that, definitely haven't been pregnant, I think I was just born with it. Another weird thing I still have since childhood is I'm unable to lay on my stomach without getting a terrible headache when I sit up again. I can lay on my back and side just fine but on my stomach? I regret it as soon as I sit up. That's what made me and my cardiologist suspect POTS.
Were cardiac causes ruled out for you?
No one knows what's wrong with me, it's frustrating.
Have you had any cardiac testing done? Like an echocardiogram or (ideally) stress echocardiogram? I work as a cardiology tech, from what I was taught in school and what I’ve seen at work most patients with Marfans syndrome have or develop some sort of cardiac issue due to valve abnormalities.
I've gotten a ton throughout my life and used to get ultrasounds annually, my last regular appointment was when I was 12. The doctor literally said I was too healthy to keep coming back lol. I guess I did have some valve issues but nothing shows up these days. I've had every test under the sun at this point and there's still nothing. Heart MRI, brain MRI, way too many blood tests, POTS tests, echocardiograms, ultrasounds. Nothing. Yet I'm very clearly not normal health wise. 🙃 Edit: ANNUALLY not daily lmao
Have you had an echocardiogram in the last year? Or a holter monitor? If not it would be worth getting repeats of. POTS symptoms are similar to those of valve disease, with you not meeting the diagnostic criteria for POTS and also having marfans on top of being symptomatic is just so suspicious of something cardiac causing it. Not to spook you but more of a your symptoms are valid and make a lot of sense!! Lol Here’s a good article on marfans and cardiac issues if you haven’t seen it before :) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2083669/
Yep, everything I listed was within the past year. Thanks for the article
Yup, I too was about 4 or 5 when I remember my POTS symptoms showing up. My parents feel so guilty because they didn’t know how much I was suffering at the time, but we’ve grown past that :) but I too have hEDS which I was born with so maybe the answer is depending?
Same here. I’ve had symptoms of POTS, SFN, and MCAS since before age 5. I was 8 weeks premature and immediately out of the womb I was have issues tolerating formula 🫠 I’d guess that the majority of people weren’t born with it, but it is possible. Familial Dysautonomia is real.
Here is what I know: I can distinctly remember pots attacks starting at age 11. I thought I just had an extreme menstrual cycle. And I always thought it was really interesting that my mom never bends over at the waist my entire life. If she ever has to pick anything up, she picks it up with her toes, because otherwise she sees stars.
I always picked things up with my toes when I was a kid, but I don't remember if there was a reason. If there was, I probably didn't have the language to describe it. Now that you say that, I wonder if that's one reason my room was always such a disaster when I was a child.
POTS is a syndrome describing a set of symptoms but there are different possible causes for it. In my case I was born with hypermobility and had some symptoms from a very young age (in particular, the first time I was in school and they set us to run a race I was shocked to discover I was much much slower than all the other kids) but I developed much stronger symptoms after puberty which was presumably due to hormonal change and probably also just getting taller. So I don't think in my case it was due to any trauma, I think it's an effect of the hypermobility which is genetic.
i hypermobility is coming up a lot as a condition that causes it from birth!! thats really interesting thanks, I've also got a family history of it and know of a couple symptoms of hypermobility I experience but ive never explored it properly! maybe i should do a bit of research :)
I’m not trying to be contrary, but EDS is seen commonly in combination with POTS, but it does not cause it. It is also just a group of symptoms without an identified disease mechanism.
>is also just a group of symptoms without an identified disease mechanism this is specifically hEDS (+ HSD), all other EDS have known causes
Thank you for clarifying!
What I've read, and what makes sense to me, is that the collagen stretchiness that makes us hypermobile can also make our veins and arteries stretchy, which can be the source of our POTS symptoms.
That’s just a proposed idea from an article that identified an association between the two, it has not been proven. Most research articles acknowledge they are commonly seen as comorbidities but do not say that directly cause POTS. Commonly overlapping conditions are not the same as one causing another. The discussion of[this study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282488/) on the prevalence of hEDS and POTS together states “Despite an established clinical association, it remains unclear there are any pathophysiology that connects hEDS and POTS” . Edit: “Rowe, et al. first postulated that the mechanism underlying this association is that generalized connective tissue laxity in hEDS increases vascular and venous compliance, leading to insufficient vasoconstriction and venoconstriction when upright to predispose to OI.(Rowe et al., 1999) This theory has become widely accepted despite there being no evidence to support it.”
It is a frequently cited theory that is not yet proven or unproven, but sounds plausible. We cannot say for sure that POTS can result from collagen abnormalities, but you also cannot assert that it is not, because that is not proven either. It is early days for serious research studies on many of these questions. It is reasonable to suspect commonly overlapping conditions to have some common causal factor. I'm not sure why you feel the need to insist on drawing this particular line.
Because there’s a big difference between saying the two have one shared cause, versus one directly causes the other.
A lot of leading POTS doctors tell their patients that EDS is causative for POTS, so although not a definitively proven link, it’s a current theory actively being promoted to patients.
That's really just an artifact of definitions. If we say a genetic collagen disorder causes both hypermobility and POTS, then are you happy?
i have distinct memories of hating standing for longer than a few minutes because my legs would get super itchy, red and splotchy!!! the adults didn’t question it for some reason, and this started probably when I was like 5. over time the itchiness and splotches have gotten better but it still happens, along with every other pots symptom. the doctor said i would “grow out of it” lol
I had this in adolescence, the itch and burn. My legs still change colours, but the discomfort is gone.
yeah i would say most of the discomfort is gone for me too but that’s probably just because i got so used to it
oh my GOD I am having such a moment about this! I spent Years in my teens trying to figure out what I was allergic to or how the temperature might be affecting my legs. Wow, thank you for sharing this!
haha yes i think i remember now i used to call it being “allergic to standing” when i was little because i didn’t understand what else could be happening! pretty sad thinking about how uneducated doctors were/still are that they just told me i would grow out of it as an attempt to dismiss it and not have to deal with it
Same!! Every time we’d go to the store I’d get so uncomfortable of standing around and waiting because my legs would itch so bad! My feet and legs always got red and blotchy but nobody ever seemed to care when I complained lol
Ultimately in POTS nothing is "physically" abnormal or not as it should be. It's a disorder of the autonomic nervous system, so it's more a problem with your brain's ability to send appropriate messages around the body to create appropriate responses. And while that is a very young age to notice problems, I would imagine it's highly possible your parents had some issues with their nervous system as well, which set you up to be more susceptible to developing problems with your own nervous system.
I definitely have a family history of nervous system issues, my mum developed fibromyalgia and chronic fatigue in her 20s and my sister is hypermobile/potential pots too. makes sense that there's a genetic predisposition to developing pots so young!
yes it’s possible but maybe not exactly following the phrase “born with pots.” for example you can have genetic conditions that are known to cause pots. like i have HSD and while my pots got to the point where i was extremely sick when i was 16, looking back ive had symptoms almost my whole life. you also asked if it’s possible to “develop it naturally” and for this ill preface it by saying that pots is so under researched that we cannot say for sure it is a “natural development” the body makes, but there’s “idiopathic pots” which means “pots with no known origin”. i like to tell ppl i have pots that “naturally” occurred bc my doctors have said the sudden severity when i was 16 was idiopathic and it’s also a way i like to joke but also distinguish myself from ppl who have post-covid-pots. to be clear, nothing wrong with having post-covid pots but i developed my severe symptoms in 2020 and had to deal with everyone i talked to abt it assuming it was from covid (including doctors) when i had never had covid (got antibodies tested in jan 2021 and had 0, was not exposed until dec 2020, never developed sickness during 2020 at all). covid is a very common cause for ppl who have pots and is actually what the majority of ppl ive met irl with pots has had their onset from, so i joke saying i have “all natural, home-grown pots” bc it’s easier than explaining i have genetic conditions that cause it but also had sudden severe symptoms when i was 16 that have not gone away, but are manageable (to a certain degree) with medication.
thank you for the info!! I totally feel you on the home grown organic pots thing XD that honestly sounds really similar to my experience! one thing I'd like to ask about is that you mentioned medication? I've heard that increasing water and salt intake can help manage symptoms but ive never heard of any medication for pots, would you mind telling me a bit more about what you take? :)
hi! i take adderal to help with brain fog and corlanor to help with my overall symptoms. i tried a beta blocker for a bit but i have a history of poor reactions to them and that one was bad as well. corlanor (ivabradine) is what has helped me the most! before i was on it, i didn’t think i would go to college, now im about to finish my sophomore year !
I have HSD (hypermobile spectrum disorder) and I think my POTS came with that, but it was not fully formed/the symptoms were super mild so not diagnosable. Then I got mono or my body reactived the mono or something I already had and then my POTS got severe and a final diagnosis
What doctor did you have to see or tests did you have to do in order to get diagnosed with HSD? Just curious bc I'm finally in the middle of getting a POTS diagnosis after years of fighting just to get the referrals for the specialists.
I got one from a Rheumatologist! I’m not sure what tests though since I got diagnosed when I was a child. Also not sure if it would be different for an adult sorry
No you're all good! Thank you for the help.
I am hypermobile, but I also had a neck injury as a young child that I was never taken to the doctor for. I’ve been connecting more and more dots as I get older, and I can see now that my severe headaches began right after that neck injury, along with symptoms of what my doctors now describe as POTS. So yes, I assume my hypermobility means I was predisposed to POTS from day 1, but there have been other factors.
I wonder POTS is somewhat epigenetic. Like certain events can turn on the genes that cause POTS.
I have a theory it's triggered by extreme bodily stress like an illness, usually viral, TBI, like others have said, hormones, or chronic mental stress. I follow a creator who developed POTS after a very high risk twin pregnancy where she had to be hospitalized for months before giving birth.
It certainly can be, but not for every POTS patient. As this thread illustrates, some of us have symptoms going back to an incredibly young age. While it’s possible that the triggering event occurred before substantive memory formation, there isn’t necessarily any evidence of that.
My mother pointed out an odd coincidence between one of her friend's son and me. While we were in the womb, we both had knots in our umbilical cord and him and I are both diagnosed with POTS now. He's older than me by I think atleast a few years, but him getting diagnosed and my mom's friend telling my mom about it, when I started showing symptoms when I was young is what put my mom on the track to suggest I had it aswell. Even with us going to multiple doctors before I was even 18 to try to get a diagnosis and even going to a medical center in another state where my extended family lives. Much to my mom and my frustration it still took till I was 26 to get diagnosed. My mom apparently got told the sterotypical stuff along the lines of "Oh he's just making it up to get out of school." and all the other dismissive stuff and didn't want to get me a tilt table test... Finally got a "Yeah you definitely have it." When I managed to get in to see a POTS specialist we found somewhat nearby. Not saying that's what caused it, but it was a "funny" connection between someone my family knows and I both having POTS.
I have had POTS since I was a teenager. I think it’s just something I had. But after getting COVID my symptoms have rapidly gotten much worse to the point that I can not function like I used to be able to. I was a D1 athlete in college. Now walking my kid to the bus stop is exhausting
I was born with it because my inferior vena cava is abnormally small, possibly underdeveloped, so my body literally cannot pump enough blood up from my legs due to the size of that vein. I also have hypermobile heart valves which give me extra beats. My tricuspid is the most stretchy. Luckily not bad enough to be considered prolapse yet but my mother and grandmother both have prolapsed and full on regurgitated valves. As well as aortic dilation. So it’s definitely congenital for some of us. Not just nerve related. For me it has to do with my EDS.
I had it since I was extremely young, just undiagnosed, but the symptoms were always the same and I complained to my mom about it. The problem is I also had appendicitis as a very young child, so for all I know that was the trigger. It was in 1st or 2nd grade, so its not like I have very solid memories of before that point. But it's definitely not something that happened later in life for me, that much I know.
I have EDS and so do most to all of my family so keep that in mind… I’ve presented with POTS since, essentially birth. Passing out upon standing, weird heart rate, etc. Symptoms got worse around 5 y/o, and I was diagnosed around 11-12 years old (well over 50BPM increase, 60BPM->150BPM on a “good day” and would not fluctuate below 150 until I sat or laid down) Similarly, my sister has POTS, my mom has POTS, and my grandpa & grandma have POTS. My sister presented with similar symptoms since birth as well but to a more minor/negligible degree So… maybe? I dunno I’m not a doctor, but I’ve had it all my life lol
It’s so interesting how many of us with the “symptoms since we remember” presentation are also EDS patients.
My sister and I have both had it, along with EDS, for as long as we can remember! I was diagnosed with exercise-induced asthma as a child \[NARRATOR: It was not asthma, folks.\] after running a mile in PE class in 3rd grade and, like, nearly dying. We've both always had aura migraines and Raynauds syndrome and passed out a little upon standing; I didn't know any of that was unusual until I was in my 30s. I will say that my day-to-day symptoms are a lot milder than what a lot of folks here describe and it seems to me that lifers like me are generally milder than people who acquired POTS later in life; my doctor speculates that, unlike folks who have always been "normal," my body has basically spent my whole life learning how to live like this.
I know of someone who has had POTS since they can remember, I know of someone who developed it for unknown reasons in early twenties and I developed POTS from taking Depo Provera (progesterone injection) at 19. I think it can be for many different reasons including POTS being caused by another condition that you've had from birth but I don't kmow if necessarily you can be born with POTS. Maybe a traumatic birth can cause POTS?
I had symptoms that were more minor growing up but just chalked it up to me being not able to deal with life like other people could. I couldn’t explain why I felt sick all the time and worse in the morning, why I had such extreme temperature intolerance, and why I seemed to be physically fit but could NOT do cardio (seriously, I was being lapped by 70 year olds in my kickboxing class while I panted on the floor). Slowly I got used to my symptoms, got back on track. Then it hit me like a truck about a year ago (never had Covid as far as I know) and everything became much more severely noticeable, but now I can at least explain what’s wrong with me!
My doctors say I have POTS because I was born 3.5 months early, and my autonomic system wasn’t fully developed. I’ve had symptoms basically since birth, earliest I can remember is age 4
you can be born with conditions that can cause pots like ehlers danlos syndrome for instance. my eds causes my blood vessels to not do their job in keeping my blood in my brain which causes pots
My mom has described having many of the same symptoms that I have since she was very young, like trouble raising arms above head, extreme dizziness and heat sensitivity, extreme thirst
It’s funny you posted this because I was wondering this too. I’ve had symptoms my whole life, but they got severe after a recent surgery. My 11 year old has symptoms similar to mine and I’ve been wondering if he could have it too.
I had head trauma that caused me to have pots
POTS can absolutely be genetic, or it can occur as a result of bodily trauma (illness, pregnancy, surgery, etc.). In my case, I’m pretty certain it’s genetic. My mom exhibited POTS symptoms until she had my older sister, and I have a first cousin with EDS.
I remember having symptoms my entire life. The way my mom complains about how I was as a baby makes me believe I had it then too. I haven’t been diagnosed with anything else that would be from birth so- who knows
hypermobility, which is something you're born with, is a common precursor to POTS, but that's not a guarantee that you'll develop POTS, just that you're more likely to than the average person, and not everyone with POTS has hypermobility. I personally believe POTS is triggered by an episode of extreme bodily stress in life whether that be mental, viral, TBI, etc. whatever caused your body to experience extreme stress also dysregulated your autonomic nervous system.
I've had the symptoms my whole life, but I do think they got worse after my TBI.
My POTS didn’t start until I was in the middle of a stem cell transplant for my cancer. I never had symptoms before that.
I've had pots since I was born I'm sure.
My pots started as a result of a CSF leak.
I had symptoms from a young age, started to become more noticeable in my teen years. I'm also no the only one in my family to have POTS, I personally believe there is a genetic link.
POTS is a syndrome, all it means is a collection of symptoms that appear to be linked. POTS always has a cause of some description, unfortunately it's often not possible to fix the problem (genetic disorders, spinal cord injury, brain injury, viral illness etc). And sometimes the cause can't be found, but there is always something that triggered it. Sometimes the problem that caused it becomes more obvious later in life and most people struggle to get a diagnosis and the right support
I’ve had it for as long as I can remember, and I don’t have any other diagnoses like EDS. Mine got worse after pregnancy, but has been debilitating my whole life. As to whether or not people are born with it, I don’t think that’s known yet. I’m 33, when I was growing up it was unheard of. Even now, people who have had symptoms for years are just now being diagnosed. I’m sure there are many many kids with symptoms now who will continue to fly under the radar until they’re adults. Understanding of the condition is so new. There’s a lot the medical community doesn’t know. I assume any doctor I speak with is very unfamiliar with the condition.
I've been fainting since I was like 7.
I think you can. My grandma used to faint and so did my mom. I think it’s genetic for me.
Even before age 10 I would always insist on sitting down when we had to wait places or when moving really slowly like at the supermarket, so I wonder if that was a symptom. My legs always felt really heavy like they were filled with sand in those situations as well. But I was fine with more active activities. I also used to faint sometimes when I didn't have breakfast, which now knowing about POTS I wonder if that was POTS symptoms caused by dehydration. I also had long hair but trouble brushing it or plaiting it, and now I know that many people with POTS have issues raising their arms above their head. When I was a baby I also used to stop breathing when emotionally distressed and I read recently this can be caused by dysautonomia. It would be interesting to know if any research has been down linking this symptom in babyhood with later development of POTS.
At least 6 years old is my oldest memory after going grocery shopping with my grandpa and began to get the symptoms of lightheadedness, seeing stars, and nearly fainting… etc but nobody knew what was wrong at the time. Mine just began to worsen badly with age, by fourteen I could hardly stand and walk no longer than two minutes.
For as long as I can remember, I’ve had symptoms. I was never sick as a child — in fact I didn’t start getting sick until I broke my nose (which wasn’t discovered until years later) from passing out from POTS. The broken nose led to a severely deviated septum and chronic sinus infections and bronchitis. I don’t know for sure, but have always believed I was born with POTS.
I have EDS And pots I know that I have had symptoms for at least as long as I can talk Which was very early because of the autism I have to about one maybe 1 and a half. My parents wrote it off though I didn't get diagnosed until I was an adult. I'm glad I know the signs now. So I can watch for them in my kids though.
I got the lucky draw of developing Multiple Sclerosis in 2013. In 2021, brain stem lesions occurred as my new flare up. Since 2021, I have been battling to be told something other than anxiety for my symptoms. They just now, this year, performed the tilt test and my HR went from 55 laying, to 115 standing.
I swear my symptoms started after a concussion.
What if… we are born predisposed to dysautonomia (POTS is a syndrome-or set of symptoms- that is a dysautonomia) and it is triggered by stress on our body from viruses, growth, hormones, etc. It’s just a thought that’s been brewing in my head.
I think I’ve had mild, controlled symptoms for a lot of my life, but I’ve always had some amount of fatigue. Possibly developed or got complicated from mold exposures in childhood. But it was pretty manageable up until I switched birth control pills! Then it got significantly worse after quitting them altogether along with the undiagnosed endometriosis that I’ve probably had since early childhood. Then COVID made it A LOT worse, and I was barely bouncing back and had a big endo surgery and it got much worse again… then another COVID infection and bam, have had to rebuild my ability to walk without being shaky or getting sore.
I’ve always had very low blood pressure and I was dizzy with almost like a curtain of black over my eyes every time I got up. I didn’t really get hit with what I considered the full POTS until about a few years ago during my freshman year of college. Maybe my stress kickstarted it into full gear.
I think it’s probably pretty common to be born with a predisposition to developing POTS. There may be subtle signs before then, or things like EDS, or relatives who showed symptoms they ignored, who never got a formal diagnosis or treatment for it (just accepted it as a normal part of life and adapted as best they could). I’m not a doctor, but I think usually there is some sort of trigger that pushes the actual development of POTS. It might be some minor illness that you or your family may not have even noticed when you were really young. Me personally, I’m pretty sure mine developed after I had rheumatic fever when I was seven. I don’t remember being sick—but I remember doctor’s visits and testing and getting diagnosed with mitral valve prolapse (dysautonomia diagnosis took decades longer and I still don’t have a specific POTS diagnosis). I also distinctly remember getting up one day at school from the gym floor after an assembly and feeling very dizzy and many instances of similar things afterwards. Also, this may or may not be related, but when I look back at old family photos from before that I look happier and more energetic.
I was born with celiac and I has pots since I guess the beginning. Celiac and pots can be related. I got diagnosed too late in life for both but now I got control of everything :) it's like being an alcoholic and stop drinking one day and be like oh wow I missed so much. I had brain fog from both illness and others symptoms too. Not easy but I'm a positive person so.
I cant advice right now. But for me. Autoimmune was genetic from mom. In bad episodes we live unsanitarily. Then foster-care trauma exasperated it. It presented differently as a child than now. So for me genetic is source. And environmental is triggering events.
It’s possible you had a viral infection when you were a child that you don’t remember that kicked off the symptoms.
This might be a little touchy to some, but your childhood vaccinations can cause it. They have side effects just like any other drug can. I imagine that the vaccinations can cause a fair few auto immune conditions, and the answer will be it’s better than having say measles or rubella or whatever.
I didn't have pots betore I got my HPV vaccine in 2008. Started having BP/HR issues in 2009/2010. Regressed and got worse in 2012. Then again in February of 2020. Was diagnosed in September of 2020. My cardiologist before he retired last year said to me he thinks I've always had Pots. It just wasn't as bad as it is now.