3 things:
1. A lot of the symptoms presenting can point to other more life threatening causes so those need to be examined and ruled out first.
2. Symptoms don’t always present… like your blood pressure can be real low but because of white coat syndrome, it may seem fine in the office. People are often nervous at the dr office so they may blame higher heart rates on that. Also, we’re not usually in the heat, just standing, or climbing a flight of stairs where our symptoms can get worse and be noticeable.
3. Some doctors don’t really think it’s a thing and believe it’s just like undiagnosed anxiety or people who are just out of shape… sad…
I've had a nurse tell me before "there's no need to feel nervous" after checking my vitals. I was like "oh I'm not nervous at all, I just have POTS." My HR wasn't even that high (for pots) at the time, like 108.
Also I had low BP and presyncope for years pre dx but when I asked about it they always said low BP is good. Not when it might make you faint!! But they are so used to high BP that they miss when low BP could be a sign of a problem
I had the same thing happen standing getting hooked up to the machines for my stress test 🤣 my hr was 130 BPM and he was like "no need to be nervous I'm a cool guy" and I was like "I'm literally chillin, I think you're cool too. This is just literally the reason I'm here"
Exactly. I just went to ER this week because I’ve been fainting every time I go up the stairs and after I feel extremely lightheaded for at least an hour. Also extreme chest pain 24/7. The doc mentioned anxiety 5 times. Finally I broke down and told him I would not be in the ER for just anxiety and I’ve been told that for a year. He sat down next to me and said, “do you have anyone to talk to?” My dad just about punched him. My TTT is next week and I’m begging the good graces that I can get some freaking medication. The cardiologist that ordered the test also said that POTS isn’t really a thing, they’re still trying to figure out what it really is? Wtf I have no hope anymore. I’m only 28 and I don’t even think I’ll make it to 30. I’m completely bedridden. Every time I go to the bathroom I start losing consciousness within 3 min. This is not how I want to live my life anymore. I live in UT but go back and forth to the Bay Area if anyone knows of any good doctors.
Sweetie please do everything you can to reduce POTS symptoms. Eat no more bread, potatoes, pasta, processed foods and drink a lot of water and make sure you eat a lot of salt. Avoid sugar. Add light exercise everyday to your routine. Good luck
Drink 4-6 litres of water a day, 8-10 grams of salt/day, and look into excercises you can do laying down /seated to strengthen your legs and core. These are things you can start doing now to help your symptoms. Pots itself is a syndrome, a collection of symptoms. It is real but it’s the pots itself that they don’t have know a root cause for only theories
Yeah it’s a mess of symptoms that need further analysis so I can understand why specialists can be vague. It’s not reassuring though.
Do what you can to do stuff when you can and slowly build what you do. I got stuck in bed for a few months as I had a flare (which was when I finally got diagnosed) now year later, I can walk around and do stuff. I do get exhausted and have bad days. And driving is too daunting. But there are good days when I do enjoy life.
I've had your ER experience repeatedly, as have others.💔
Do the things you are reading on this sub about water and sodium intake and compression stockings. Do them. A ridiculous amount of sodium and water. This is going to be hard for you, I understand. I've been bedridden or mostly housebound for 2 years.
FIVE DAYS AGO. I started compression stockings, sodium, and water as recommended all over this sub. I rode along with my husband to do an errand. I waited while he went in. I helped him in the yard a little bit. I've been waiting for the crash to come and it has not...yet. I am getting tired, but I'm sure I deserve it.
My doctor is wonderful. Finally a good one. So many symptoms and labs and we've been ruling out things.
💖Thank you to everyone here💖
#2 especially. I’m pretty sure I’ve had POTS since my teenage years but the past couple years were the first time the symptoms were really bad. Plus the fact that I had a lot of other medical issues that were taking the forefront of my doctor visits AND a lot of POTS symptoms are the same as those issues.
This is strange to me but maybe it was because I was already seeing a psychiatrist for my bipolar? That might’ve helped them to not believe it was anxiety
Unfortunately, a psych diagnosis can be kryptonite for a POTS diagnosis. I'm glad they didn't blame it on that!
They tried to blame everything on my past depression diagnosis, despite me telling them it had been fully controlled by medication for years and that my exhaustion wasn't depression and that *I knew the effing difference*. 🙄🤬
Definitely this, but also doctors doing their due diligence have to rule out several other more serious cardiac issues first. A lot of people these days walk into doctors offices searching specifically for a POTS dx on the basis of sx they read about online that have a massive overlap with other conditions and thennget frustrated when they don't get it in one or two visits.
Lots of doctors are also ill-informed, even if they're aware it's a real condition, and that can slow down dx and treatment.
I agree OP got very lucky. When I was diagnosed around 10 years ago, inwas considered lucky to have a dx in 9 months. It used to be standard for people to not get answers for several years.
When I got other cardiac issues ruled out I also just got told I am probably out of shape and my physio for eds should help my presyncope too. I had worked as a waitress at a damn busy place half a year earlier, and worked at a busy bar when the interaction took place. And walked almost everywhere.
They still needed to rule those things out. Jumping to POTS is unreasonable considering the massive overlap in sx with so many other conditions. It sucks they didn't take your concerns seriously.
I think the best route is for people to search for the *correct* diagnosis rather than a specific one.
very good points! I wouldn't be surprised if doctors are more hesitant to diagnose now specifically because of those types of people who either come in looking for that diagnosis or self diagnose based on internet information (which often is either blatantly false or is true but doesn't include the necessary nuances), especially in the case of teenagers who sometimes *literally are just dehydrated because they drink more coffee/soda/energy drinks than water.*
part of the medical "code" is to start with the least invasive treatment. that extends to diagnosis as well. you start by ruling out the more common and easily treatable causes and then work from there. if a patient comes in with GI symptoms that are triggered by food, you don't jump immediately to "it's probably cancer, let's get you a colonoscopy." they generally start by having you do a food log and use blood tests and stool samples to check for things like celiac, ulcerative colitis, and parasites. *then* they move on to more invasive testing.
I think sometimes people also forget that doctors (at least in the US) have to justify to insurance why they are testing for certain things. insurance companies do not want to pay for stuff they don't have to! so as frustrating as it is as a patient, unless you can come in and tell them what you have already ruled out and how you tested it, they need to make you do things like drink more water so they can prove it's not a simple case of dehydration
Yes, that's an excellent point about insurance. It sucks big time, but that's how it's done. I've been through that song and dance myself when I was dealing with my sleep apnea diagnosis and insurance didn't want to cover an MRI because they didn't it as medically necessary despite me being in the ER multiple times a week for a few months.
A lot of people don't recognize that their symptoms are orthostatic (unless you knew about POTS, you wouldn't consider this variable for quite a while), so they might only report super vague symptoms like fatigue or brain fog or heart palpitations. Routine blood work won't show anything. Basic cardiovascular screening like a heart monitor, EKG, ultrasound also won't show POTS. Once these come back normal, most doctors aren't even educated about POTS enough to do a NASA lean test, and most certainly don't have a tilt table for a proper tilt table test.
Mainly though, misogyny is a big factor in the difficulty of getting a diagnosis. I remember mentioning to a cardiologist in 2018 that I was passing out upon standing up(I was concerned about POTS), and he told me that it was normal for young women to faint like that. *Eye roll* Unfortunately, I was only 19 and was impressionable as hell. I believed him because my mom and sister both experienced the same symptoms. I ruled out POTS from my list of potential diagnosis for several years until every other avenue of testing was a dead end. You are SO lucky to have been believed and properly tested, though there are lots of conditions that need to be ruled out completely before POTS is officially diagnosed.
The amount of wild shit that people tell girls and women is "normal" is ridiculous. It concerns me that so many guys seem to be going through life believing that hellish misery is fully normal for women and girls. Crippling pain in your abdomen? Passing out when you stand? You bloat like you swallowed a yoga ball whole when you're on your period? That's just another Tuesday, isn't it?
Had to go to the ER following the second COVID vax because I spontaneously began bleeding the day after I got it. I went there said my body does not react well to COVID and I finished my period a week and a half ago. It was bright red and did not look like my period at all. The ER doctor on call was a man and was like oh its Menorrhagia, which is heavy menstrual bleeding. I'm like this is not regular to my cycle whatsoever. Like dude, I HAVE heavy painful periods this is not that. Had an ultrasound, maybe a burst cyst and discharged me. I remember just being so mad I was just sobbing with rage they wouldn't take it seriously.
I went to the ER for bleeding that wouldn't stop, was told by the nurses that it might be a ruptured cyst plus ovarian torsion caused by the rupture. The Gynecologist that saw me the next morning was male, and he told me it was just my period. I know my period. It was NOT that. It was waaaay too much blood, and too bright red. I did not follow up with him later that week. My ovary corrected itself later thay same day, and what do you know... The bleeding stopped! *eye roll*
That's absolutely insane! I've never spoke to another person whose had ovarian torsion. Not the time I'm speaking of, though maybe in hindsight that's what it was again, but it happened to me when I was 13. I thought it was really bad period pains but then woke up in the middle of the night, crawled to the bathroom to throw up the pain was so bad. Turns out my fallopian tube wrapped around itself not one, not two but three times. I had to have emergency surgery to remove that portion cause the blood supply was cut off, it was laproscopic and I saw the pics after so gross it was purple. Do you know what caused yours? No doctor has ever been able to tell me why it happened
>I ruled out POTS from my list of potential diagnosis for several years
Ditto, friend. I am so sorry you went through that. ❤️
I never clocked that my heart was doing anything wonky, so never mentioned it to doctors. In my case, nobody considered anything else, they just ran with my weight and history of depression. I stopped trying for medical help for years and years in the middle of the 20 years it took to get diagnosed. I just couldn't being dismissed one more time.
I grew up on a special forces military base, so the men were always deployed. I totally thought it was normal for girls and women to just always feel dizzy and lightheaded when I stood. It definitely perpetuated my belief that men are just tougher than women. Decades later, tons of girls from this base have been diagnosed with POTS and other autoimmune diseases, and also it turns out this particular base not only had lead pipes and lead paint, but was used as ground zero for Agent Orange (and other) testing lol.
I was “lucky” enough to get diagnosed 6 months after developing POTS from long covid. But around the 3 month mark, I had asked my cardiac nurse practitioner to get me diagnosed so that I could get accommodations for future jobs. She said “Well, there aren’t really accommodations for POTS anyways so there’s no point in getting a diagnosis since we’re already treating you with Metoprolol.” Luckily, I saw an electrophysiologist who gave me a poor man’s TTT. But my provider’s comment about a POTS diagnosis not being necessary was incredibly ignorant, and there’s plenty of providers who think the same way
Because it’s hard and can take years (on average it takes 7 years). From when my symptoms started until dx it was 8 years for me. During those years we did extensive testing to rule every other possibility out.
Most cardiologists aren’t knowledgeable about POTS. The fact yours was is great but not the norm. Moreover if all you did was a poor man tilt test in the doctor’s office then you have not fulfilled all of the criteria for a POTS dx as it’s a dx of exclusion meaning they have to exclude all other possible causes which can take a long time (in my case years).
EDS also has a specific dx criteria (in fact many! As there’s many different kinds). A heart valve not closing all the way is certainly a sign for some types but without further testing to eliminate other causes of symptoms, possibly genetic testing based on the type, and testing like the Beighton score an EDS dx could not be given. If you’ve had testing like the Beighton score and meet the criteria for hEDS that’s great! I’m happy your cardiologist was so helpful. I’d be a little suspicious if they didn’t go through the criteria with you beyond finding the heart valve on your echo.
Yeah this is the problem. I live in a major metro area (San Diego) and my first cardio asked ‘what is POTS? I’ll have to google it. Now I have a POTS expert.
My allergist who is phenomenal also told me I probably needed to go out of network because most of the doctors here ‘don’t believe in it.’ I am already diagnosed.
I will say every time I’ve been hospitalized (MCAS) my drs understood POTS. And it was originally an ER nurse that pointed out I have it. I thought she was asking me about weed, I didn’t know what POTS was. 🤷♀️
Yeah I live in a major city where there are only two Dysautonomia experts in the province both with 2yr+ long waiting lists if they’ve even reopened them yet. I saw so many docs in those 8 years and did so so many tests.
Yeah I simplified a bit, they did a full connective tissue panel once they saw the heart valve and found I had EDS and I was a carrier for brittle bone disease
Heart abnormalities like that are almost exclusively found amongst those with connective tissue disorders. Same thing with pectus deformities. Knowing what kind it is can be helpful to the patient, but it won't change the treatment options so a lot of doctors just do not find the need to diagnose exactly which one it is.
I have heart valves that don’t close and am dxed with HSD. There are many types of CTDs including EDS but it’s certainly not the only type :). Likewise, I’m a heart disease survivor at 21 but vast majority of those with my heart disease don’t have a CTD (though it being linked to EDS is in part how I was able to secure testing and eventually a dx). Yes it can be found in CTDs but knowing what kind of EDS can be super important due to additional risks (such as VEDS) and treatment based on the type can occur (for example, my EDS clinic prioritizes certain types to get earlier treatment, and along with us being treated by symptom focus which is so important!). /g
Plenty of people have brought up that some doctors just have no knowledge of it - so i'll touch the other side of it.
1. POTS is a syndrome, it's a manifestation of Dysautonomia. Everyone who has POTS has dysautonomia, which can cause a wide range of non specific symptoms that may distract from focusing on the POTs specific ones.
2. Yes, there are specific measurements for it, however, plenty of stuff can cause those symptoms, some of which are deadly. You have to rule those out, and that can take a lot of time even with a doctor who is on top of things.
Even after having a doctor suspect some form of dysautonomia, which took a long time on its own - i went through a battery of different tests pretty much daily for about 2 months. I was lucky enough to be in college at the time, i could take the time to do that. If i was someone with a job or a child to take care of, those tests would have taken a lot longer to do.
I couldn't even get a referral to a cardiologist until I was 18. I had been symptomatic since I was a toddler and the doctors just kept saying it was anxiety or hormones. I had to really advocate for myself to get a referral.
When I got there the cardiologist did supine ecg and then told me there's nothing wrong with me, I'm perfectly healthy, I should be grateful because he has to tell people they're dying all the time, and I *"need to grow up and get on some antidepressants".*
Needless to say I didn't pursue any more testing until I was in my twenties. The Dr I saw tried to test my iron AGAIN and I fucking exploded at him and pushed to be referred to the syncope clinic that a different doctor had briefly mentioned.
My tilt was immediately obvious and the specialist said "Oop, yep. Textbook POTS".
THIS. My symptoms are literally all over the place and most of the things wrong with me are diagnosed by ruling everything out first. Also I have a hard time finding a doctor who will look at the whole picture, like take everything I've had done and assess from there. I've been fighting a long term disability insurance case and one of the things I did was sit down with my medical records from the last four years and highlight everything that stands out. I was in tears by the end of it because I was like how can no one see there's something seriously wrong with my autonomic nervous system. Like it's all right here. Luckily I'm seeing an autonomic neurologist in October I've waited a year to see and I live in MA so it's in Boston.
You might be surprised, but there are a LOT of ignorant doctors out there who either misunderstand POTS criteria or don’t “believe” in POTS. They refuse to read up to date medical studies and literature about it or refuse to change their deep seated biases against POTS when they do encounter the literature.
The first cardiologist I was referred to was one of these doctors. Fortunately for me, when I called to schedule my appointment the nice front desk employees strongly recommended that I ask my doctor to change the referral to a different doctor in the practice. The second cardiologist was very helpful and thorough. It took months to schedule all the tests, but well worth the wait.
I understand why we get referred to a cardiologist at first to rule out underlying heart conditions but I almost wish we didn't. Along with myself, I've seen so many people on here have horrible experiences with them. I had to wear a two week hear monitor, an EKG, a stress test AND a stress test with EKG after he had concerns after the first one. During the second one my HR got to a high of 214 BPM in less than 10 minutes and I got pre-syncope. He said that was "normal", that's well over a max HR for a 26 YO at the time. He verbally diagnosed me with POTS but when I asked him to write me a letter confirming it for my long term disability insurance case he refused. He said he wouldn't even begin to consider me disabled until I did cardiac rehab and went to a long covid clinic for "experimental therapies". It's not even SSDI, I'd just be covered for 2 years until I had to be re-evaluated. Not even trying to claim I'm disabled for life just trying to get paid during the YEAR long wait to see my autonomic neurologist.
Yes, even if you’re fortunate enough to encounter a doctor who can accurately diagnose POTS, many of them really underestimate or downplay the impact it can have on our lives and our ability to function. It’s really frustrating. I’m sorry that your doctor isn’t being more understanding and helpful.
In my case, in Canada, none of the doctors I spoke to had heard of POTS. So it’s hard for them to diagnose a condition they don’t know about.
Once I found out about it and suggested I might have it, some medical professionals felt threatened. They didn’t know about the condition and essentially dismissed it rather than acknowledge a gap in their knowledge to a patient.
From reading through this sub, about 50% of the people here actually have pots and 50% are just searching in the dark (which sucks, many of us have been there)
But from what I’m reading, a large amount of people aren’t presenting with POTS symptoms, but wanting a POTS diagnosis, and not getting it.
I am completely excluding the people with actual POTS who are being completely ignored by the medical profession and need a second opinion.
I read dozens of symptoms here that have nothing to do with POTS and a lot of frustration.
I can completely understand the frustration of knowing something is wrong with you, but not having a name. It's really hard to go into remission if you don't know how to control it.
>from what I’m reading, a large amount of people aren’t presenting with POTS symptoms, but wanting a POTS diagnosis, and not getting it.
Bingo. It's the new trend amongst teenagers needing to be special. Having a disorder is like a badge. They're doing it with mental disorders as well; DID, autism, and Tourettes are the most common ones. If they don't get the diagnosis, they claim misogyny or ableism. It's incredibly frustrating for actual disabled people who can't get help *that they actually need* due to these people clogging up the system with their nonsense.
Oh god…. Celiacs too. Those poor celiacs seriously. I can’t imagine how much digestive distress has happened to people with that condition- because no one believes wheat actually destroys their intestines and they’re treated like attention seekers and not taken seriously.
Yeah, when in doubt, just keep trying with medical doctors. Falling into the “self-diagnosing” route is dangerous for everyone regardless of whether you actually have POTS or not.
I went to the cardiologist and he refused to even take my heart rate. He felt it with a stethoscope, said “yeah you’re heart rate’s going up a lot. do you feel it?” and then told me I didn’t have POTS but anxiety and sent me on my way.
I’m on anxiety medication. I think you got a lucky doctor. My primary care believed me immediately and gave me a poor man’s TTT referring me to cardiology but this cardiologist did not believe me one bit.
My first doctor I went to about it said I had anxiety, but also because I was newly married and might get pregnant he didn't want to prescribe me anything for anxiety.
I switched doctors, because yikes. My next doctor thought it was anxiety, but was at least not condescending or misogynistic. I kind of gave up at that point and just lived with being miserable and having more and more of my life chipped away at, doing what I could on my own to manage what looked to me like textbook POTS.
At the start of this year, our insurance changed and I had to switch doctors. My very first appointment with my new PCP, he asked if I've ever heard of POTS, did an EKG, and got me a referral for a cardiologist.
So much of it is just the luck of finding a doctor who is educated on POTS and listens.
Being told you’re ’just anxious’ ‘stress less’ for many years = you believe you’re crazy. And you think you’re a hypochondriac and don’t talk about how bad you feel inside actually.
Then you feel so crap and see a new dr who actually believes you and runs tests and refers you to cardiology.
Then the ‘specialist’ who ran my TTT was GOOGLING POTS diagnosis criteria during my test and said I was fine. Sigh. I was not.
Grateful for a good GP and cardiologist, cardiologist saw the TTT results and disguised me immediately in my follow up appointment.
It did take about 10 months due to wait times from the new GP to diagnosis, but symptoms all my life (43).
Money is another big factor, all these tests varied from free (Medicare Australia) to $$$ appointments, it feels like a luxury I got to do this over the last year - we had to budget for it.
I was an athlete when I was younger, so there was no doctor on the planet who could convince me that I was imagining my symptoms, because I very well know the difference between exercise fatigue and recovery and being dizzy 24/7 non-stop. That’s how I knew to keep seeking treatment and help because I wanted to improve my condition which was rapidly deteriorating.
It's not as well known. Which is why I think its extremely bittersweet that covid happened because Covid caused a huge increase in POTS patients. I honestly think that is why I was finally diagnosed after 6 years of "anxiety" thrown around on my chart I got severe enough after the Covid situation that it forced me to go back to the doctors over and over again like I used to but this time they had enough knowledge about POTs that I actually was diagnosed instead of "anxiety"
Yeah I certainly did not see that coming. Never would have imagined that Covid would somehow benefit us by bringing awareness to POTS.
I was diagnosed prior to COVID, but in a way I’m grateful that more funding is being drawn up for POTS research and a few more physicians are aware of it now.
In Canada a lot of us don't have family doctors so we are going to walk-ins for help or if we do have family doctors it's a 10 min appointment with very little help or acknowledgement of symptoms. There's no way I'll ever get a proper diagnosis for the majority of my issues and life will just get harder from here. It also doesn't help that I've had major traumas happen in hospitals so I have to be medicated to actually go into one. Sorry, it's been a hard day for my brain. I'm sure it's not as bad in some places, it's just very hard to be taken seriously here. Everyone thinks socialized medicine is great until you have anything chronic and then they suggest MAID if you get too cranky.
Lot of the reasons already mentioned, but there's also the fact that it's become the Hot New Thing to fake having. This results in two things: 1) there's a lot of people on the internet (and these subs...) talking about how they ~just know~ they have POTS and just cant get diagnosed 2) doctors are more wary of diagnosing people
I've had my diagnosis for years, and I'm *still* interrogated at the doctor's or the ER when I mention that I don't know how the POTS might be affecting my presenting issue. I've gotten side-eye, glares, refusal for treatment, and flat out gossip from nurses half out of earshot ("yeah *everyone's* got POTS and EDS these days 🙄").
And I've seen *hundreds* of the "caught my fainting on camera!" tiktoks of people (usually teenagers) doing a viral dance (the "stand up sit down" one is popular for this genre) and pretending to pass out halfway through it. So I definitely understand the reluctance to believe me when every teenager in the tri state area claims to have POTS.
Personally, I think the trend of faking POTS goes right along with the trends of faking DID and Tourettes and autism. It's something fairly easy to fake, and there's no way to point out their presentation is fake without being labeled as ableist. It's the new teenager need to be special, but now it's not a harmless "pretending to be a wolf girl" thing, it's directly harming disabled people and preventing them from being able to get care.
You, my incredibly lucky friend, are the very very rare exception, not the rule. Very happy for you though that you got prompt diagnoses and care!
Most providers weren't trained in these areas so in their minds it's either not real, very rare, or outside of their scope of practice.
in addition to the big problem of medical gaslighting, even if your doctor prescribes a TTT not everywhere has the facility for it.
my first cardiologist got me a stress test, echo, and holter, but gave me a different number to call for the tilt test. that number said they didn’t offer them either and had me call somewhere else which never got back to me. i ended up doing the test in a different state, which wasn’t in network for insurance and was extremely expensive. that said, cost is a huge factor as well.
My rheumatologist believed me and ordered a tilt table test. My new cardiologist said she didn't think i needed it and said, "Let's not complicate things." Lady, I've got news for you, I have lupus. Life is already complicated.
Doctors can be resistant to diagnosing POTS.
My doctors for the longest time told me I just wanted something wrong with me. My mom believed that too for a bit. Then they moved to the assumption that it was just anxiety, which proved to be wrong. I was even told to go on anxiety meds at the ER after one of the worst flare up’s of my life (we didn’t have a diagnosis or answer just yet) I just got officially diagnosed with POTs back in the end of April after years and years of being gaslit by doctors.
There’s a lot of bad doctors that ignore symptoms, but I feel there’s some acknowledge there are perfectly good reasons doctors will not diagnose that quickly.
Firstly, many doctors do not feel they are familiar enough with conditions like POTS and EDS to give a proper diagnosis. This is perfectly reasonable, a good doctor should not be giving out diagnosis on conditions they are not familiar with. I wouldn’t expect a hematologist to diagnose me with acid reflux!
The current medical standards state that doctors need a TTT to officially diagnose POTS. (But that’s not to say anyone who was diagnosed another way isn’t valid!) Well informed doctors can often tell from a clinical evaluation whether you have POTS or not, I had two doctors who both told me that. However, they were not willing to give a definitive diagnosis of POTS until my tilt table test, I got a general “dysautonomia” diagnosis. The thing is, most doctors don’t have access to a tilt table test. It’s not really an easy test to get done, which is part of why it’s rarely diagnosed. You can have as good of a doctor as you want, but without the testing, it’s hard to diagnose.
First, before my next point, I’d like to say your diagnosis is absolutely valid. But, with that being said, the way your describe your EDS diagnosis isn’t really how EDS is diagnosed. Most of the subtypes are diagnosed via genetic testing, which is not a 15 minute evaluation. It’s a quick test, but it takes a while to get back. hEDS, which is what I assume you have based on the description of your diagnosis, is diagnosed via clinical criteria. (It seems there’s some debate on if cEDS and vEDS can be clinically diagnosed as well, but that’s not important here, so I’m ignoring it for now) While obviously your heart condition is indicative of hEDS, it alone cannot led to an hEDS diagnosis. One symptom (or cormorbidity depending on the condition you’re describing) is not enough for a diagnosis, you need to complete the full diagnostic criteria. I would hope and assume your doctor went through that with you, even if you didn’t realize it and thought she was simply asking questions. Although, to be fair, it doesn’t take forever to go through the diagnostic criteria either, so it can easily fit into the time frame you mentioned. You don’t specifically mention going through the diagnostic criteria in the post, so I feel it’s worth mentioning for the off chance you are under the impression the echocardiogram alone was enough to get you your diagnosis. I assume a clinical evaluation along the diagnostic criteria was also done! If you already knew this and just didn’t include this in the post, sorry! Just making sure!
While bias, malpractice, and other barriers are major factors in the lack of EDS and POTS diagnosis, there’s a lot more that should be considered. I would not consider a tilt table test “basic testing,” it’s a specialized test with specialized equipment not found in your average doctors office. It is fair for doctors not as familiar with POTS or EDS to not want to diagnose and they are aware of their limitations and are working to NOT patrol coats in malpractice and misdiagnosing. (Although, obviously, a doctor saying “I don’t know” is very different from a doctor saying “no, it’s just anxiety” One is responsibility, one is medical gaslighting!)
I'm really happy your doctors were so on top of things! And sometimes, yeah, doctors just refuse to do testing (for any stupid reason, a common one is "you're deconditioned, not disabled, just work out lol") or they just don't consider it. I passed out several times in middle school and highschool. every time I was blood tested for anemia, the test came back negative, and I was sent on my way. they just didn't bother to follow up, and since they're the doctors who went to medical school for fifty years I believed them (sorry, a bit bitter lol). for many years in highschool i was told I needed to train my heart up and do more cardio, and the other physical symptoms were anxiety. POTs is not a lot of doctors first thoughts. I was never tested for BP and HR in different positions until I had my tilt table test.
My tilt table was scheduled a reasonable time out but I know a lot of people had to wait like three years ... You're right, it's absolutely ridiculous. We deserve better treatment. admittedly doctors are horribly overworked so it's not surprising, but... It's still disappointing.
The first cardiologist I saw didn't understand POTS and she seemed sure that nothing was wrong with me. She tried to tell me that I didn't have it because my blood pressure didn't drop when standing. She was confusing it with orthostatic hypotension. Then she said she wouldn't send me for a tilt table test because "there isn't any treatment anyway." I had to go join a research study on POTS in order to get a tilt table test and medication.
So basically, the cardiologist was clueless about POTS and was very dismissive in general. The typical cardiology patient is over 65 years old and has had a heart attack. I think they see a younger person walk in and they already have decided that there is nothing wrong with them.
In my experience, it’s because doctors want to rule out a lot of other things that cause similar symptoms. It’s very time consuming and expensive and can be discouraging. I ended up having an unnecessary heart surgery in my path to diagnosis (which hasn’t happened yet!)
My first ND who thought I had POTS shrugged and said it was too hard to test so she didn't and her clinic was unstable and then covid happened.
Every other doctor didn't believe me, in 2 diff states, until the third state (Oregon), I went to an ND who just...kinda assumed I had it and then realized I'd never been tested and got me tested ASAP.
Yeah straight up they refuse to do the tilt table test for me. Though to be fair they seemed to think it was probably pots just wouldn't diagnose without the test and didn't want to do the test.
I got beta blockers though so I didn't bother to fight them on getting the official diagnosis because I guess it doesn't matter as long as they treat me for it?
Just seemed weird they were more willing to give me medicine than a test.
It took five years for me to be diagnosed. A lot of doctors are not aware of POTS, nor do many of them know how to treat it. Often times, especially if you’re a woman, you’ll get brushed off, your symptoms minimized, or you’ll be told that it’s all in your head and nothing is wrong with you medically. My blood pressure is was low, and so on paper I looked fine. Unless they can identify another underlying condition, often your bloodwork will look solid and healthy. The tilt table test was so rarely used at the large hospital we have that interns and people were sitting or standing and watching mine as they evaluated my heart rate, etc.
There’s tons of factors, as everyone has mentioned, but as someone who works in a hospital, I feel like it’s mostly lack of knowledge. Almost every coworker I’ve spoken to about pots has either never heard of it or has only heard it mentioned without any understanding of what it truly is. For me I was lucky because the first cardiologist happened to know what pots was and happened to know of a doctor board certified in autonomic disorders. But not everyone is lucky enough to have professionals in their area with that kind of knowledge and/or certifications.
Also, on my unit I’ve only ever seen 2 patients who have had pots out of the thousands we take care of. Which could be due to a lot of things like the rarity of the disorder and people who have it but are undiagnosed
The other reason you may have been diagnosed immediately is because of how young you are. POTS sometimes manifests in growing adolescents, for example if you got a lot taller over a short amount of time. I was told that if you get it while young, there’s a good chance you’ll eventually outgrow it and you’ll get better. However, if you get it when you’re older chances are it’s more permanent, especially if the symptoms stay for a long period of time.
I’ve had POTS since I was 11 and after 8 years of testing was dxed at 19. I saw more docs than I can count and did extensive testing. In that time other diagnoses I was given by incompetent doctors were:
- your head is too far away from your heart that’s why you faint! (I was 5”2 at the time)
- you have teenage girl syndrome who faints (a LOT of docs said this one!!)
Being young does not make the dx process easier by any means. OP is very very lucky to be an outlier and to have been sent to an amazing cardiologist but generally in my own experience and those where I live and others who are in POTS groups with me is not the norm. I was told I’d age out of POTS by the time I’m 25. At 21 a decade in, still going strong…
I'm diagnosed with hEDS.
Dr. suspected OH/POTS and sent me for a tilt table test
Passed out within 5 sec of upright
Cardiologist ruled inconclusive.
Yes, it's hard to get a diagnosis sometimes because some Drs simply refuse to give the diagnosis. Thankfully my rheumatologist said f that, you have pots
I had to beg for a heart monitor. Then I had to beg for the results, three months later. My doctor is a man, and he said “the times you pressed the button on the heart monitor actually corresponds to times when you had a higher heart rate.” Basically admitting that he didn’t believe me until he had proof lol. Then he said he’d heard of POTS, but it’s rare and I am probably dehydrated or my blood pressure meds need to be adjusted, as if I didn’t think of those things a year and a half ago.
All these symptoms started 18 months ago after I had part of my colon removed from diverticulitis. He recommended me for the surgery lol. I don’t know what else to do anymore. You are blessed to have found help.
Part of it is also just resources. I live in one of the cities with some of the best in the world medical research facilities and lots of shiny equipment. But, that also means people are flying in to get medical care because it doesn’t exist where they are. My cardiologist appt took 9 months and that was fast for her. The tilt table—which they have several of in the city—is scheduled for November because they’re just booked up out the nose.
It’s kinda like how an MRI can take a few weeks. It’s an injury, but getting into the schedule is hard. Seeing the dentist even takes a few months if you’re a new patient.
Granted, this is in the USA, where healthcare is like a big joke. So maybe it’s not so bad in other countries?
It took me fully losing consciousness and passing out (at work), losing 70 lbs because of nausea and vomiting, an EGD, gastric emptying study, heart echo, 14 days of heart rhythm monitoring, 2 head CTs, a chest CT, seeing a gastroenterologist, a cardiologist, neurologist, PCP, 5 ER visits, before an ER doc finally looked at me and said “have you ever heard of POTS?”…that was in November and I still don’t have an official diagnosis, haven’t had a tilt table test, the cardiologist did at least offer to start trying different medication treatments after the neurologist agreed with the ER doc is probably POTS or even another form for dysautonomia. The cardiologist also said a TTT wasn’t necessary because “we already know that you’re having the symptoms, all a TTT is going to do is tell us the same thing we know and make you feel terrible by exacerbating your symptoms that you’re already having on a daily basis.” With that being said, the 3 different medications he has tried for me since February have made me feel worse. I would still like to have the official diagnosis, mainly so I don’t feel crazy.
Oh this was after being told by the PCP and Cardiologist prior to that when I brought up POTS, “no I don’t think that’s what you have at all” 🤦♀️🤦♀️🤦♀️
You’re lucky 😂 I had my first pots episode at 8 and didn’t get diagnosed until I was 28. I spent years passing out and getting alll of the tests done until some random doctor at urgent care was like maybe you have pots? I think it really just depends on the doctor you see.
Because I’ve lived with it my entire like and didn’t know it wasn’t normal to black out every time you stood up. Or any other variety of symptoms. I was active and in shape. When my symptoms got a lot worse they said “stress” etc. they weren’t listening to me. They said “you just have IST” even though my symptoms were beyond that now. I feel lucky it only took 2 years and some medical trauma.
I despise going to the doctor now.
Wow, I had no idea. I got admitted to the ICU during my worst episode and after all the tests ruled everything else out they diagnosed me with POTS, I had no idea it was so difficult!
Untrue as a medical student the word can’t is properly placed due to legal reason. So can’t is properly said. If I’m blind by law I can’t plain and simple
I was diagnosed pretty quickly based on my reported symptoms, but I was also told that the POTS would resolve itself in about a year. That was 4 years ago and I still have symptomatic POTS.
You just got lucky, most cardiologists aren’t well educated on POTS. I saw 8 before I finally had one admit he didn’t know how to help me and referred me to the electrophysiologist who immediately diagnosed me. They all said I couldn’t have POTS for x nonsensical reason, that it entirely didn’t exist, that they didn’t “treat that kind of thing,” or hadn’t studied POTS. Even the cardiologist who did my tilt table test asked me, 17 at the time, what POTS was and what the diagnosis criteria was, then googled it in front of me to confirm before starting the test. I fainted so he diagnosed me with vasovagal syncope instead (he clearly had no understanding of the condition)
i’ve been waiting for a diagnosis for almost 4 years now. first year i was told it was “depression and anxiety” keep in mind i was fainting 3/4 times a day and could barely get out of bed. after threatening they referred me to a ent hospital. spent almost 2 years with the ent, they first thought it was vertigo (i also told them multiple times that i suspected pots but because i didn’t have a that much of a high hr they said it a low possibility ) and could only get a appointment every 6 months and most times they’d push it to 8/9. within those 2 years i was referred to a cardiologist but thanks to certain hospitals they didn’t book me in for a whole 2 years. was also referred for a brain scan at the end of those 2 years, which showed i had a arachnoid cyst but was told it shouldn’t cause this many problems and was told they suspected autonomic dysfunction. fast forward to the end of 2023 i was told id be booked in for a spinal tap (no idea how that correlates to pots) which got pushed back 9 months. then ended up seeing my new gp doctor (thank god for her) told her about my heart rate being at a dangerous level that started a year ago and that it gets really bad when i stand up and would go up to 200. she got me an appointment with a cardiologist within a week for a ecg,echo and holter monitor. she then told me “you most likely have pots but it’s going to be hard to diagnose because there isn’t a set test for it” but she said when i get the holter monitor i’ll get a definite answer which is by the end of july. she also referred me to get a tilt test but that may take some time. so yes it’s honestly so difficult even with our health care system as most of my appointments got pushed back month because i wasn’t “urgent” but truly it was because they were ordering unnecessary tests. i’m thankful for the doctors and nurses, but due to the healthcare system so many of us fall through the cracks because of us being less “urgent”. also another thing is pots research only started in the 80s which makes it recent meaning there is barely any research done towards diagnosing it and finding a cure of some sort. and medicine is all about money and they have said research into pots is unnecessary and a waste of money because not many people have it.
It’s been 5 years of being chronically ill and I still don’t have a diagnosis despite me having every single symptom of POTS including blacking out. I’ve had doctors tell me my symptoms aren’t real, it’s a “woman thing”, to get pregnant for the symptoms to go away, lose weight, and that I’m “just depressed.” Even a cardiologist just shrugged at my 130 resting heart rate and told me to find a way to stop being in chronic pain. I used to be a weightlifter 5 days a week and have a full life. I’m lucky I have access to healthcare period but I have sadly only met 2 doctors in 5 years that believe something is actually wrong. It’s the medical system.
Also doctors need to rule out a ton of stuff depending on what symptoms are being presented. POTS has an over lap of symptoms with other diseases so diagnosing it can be hard. This can also mean that a lot of the people on here think they have pots but have something else entirely. POTS has become a weird trend online and it’s annoying that people want it.
Doctors are just doing their job by being thorough and testing takes time. I see a lot of people complain about being ignored or judged but most of the time it doesn’t even sound like the doctor is doing anything. They’re just not giving them the diagnosis they want and that isn’t their job.
Exactly. POTS can often be the diagnosis of ruling everything else out. A part of why it takes so long is that so many things can cause our exact (or fairly close to it) laundry list of symptoms. Some of the things I had to rule out were: unstable angina, enlarged heart, hyperthyroidism, vasovagal syncope, and more
When I first started displaying symptoms and went to the cardiologist his first thought was POTS but he even told me that he would have to rule everything else out first. It was awhile before we could actually confirm a POTS diagnosis but he was still able to try and treat my symptoms in the mean time. It makes me wonder if people don’t understand how to speak to doctors about medication and treatment options. I’m not saying there aren’t bad doctors out there but I think it’s more of a communication issue. And the only issues I’ve had were with neurologists making me retake preventative medication after I told them it didn’t work for me.
>I’m not saying there aren’t bad doctors out there but I think it’s more of a communication issue
It definitely can be. It took me so long to get a diagnosis because of both: doctors dismissing me outright and a breakdown of communication
What have you found to be the best way to communicate? For me, I go in with an intent to discuss certain issues. I’ll write them down and bring tracking data for my symptoms or just wear a fitness tracker. Then I make it a point to say these are the issues I’m having .. this is what I’ve done for it … this is how it’s been presenting .. what can we do about it? How can we manage it?
Most of the time that there's a communication issue it's because I brought up a legitimate issue that I'm having, they dismissed it or decided to test for something completely different without explanation and I didn't catch it or stand up for myself.
I've learned to recap everything that's been said including what I came to them for and how they suggested I address it, and to just better stand up to people. I realized I'm much more comfortable speaking my mind when someone I trust is present, so I did have people come to my appointments with me for a while until I felt comfortable enough to speak up even when alone
For me, the issue was that my PCP wanted me to get tested, but I had to be referred to a cardiologist to get a TTT done and none of them believed me or listened to me. I only got tested because my PCP is able to order them herself now 🙃 (did not actually end up having POTS, but I did end up having vasovagal syncope)
dismissive doctors, in my case. I started having symptoms in middle school. I mentioned this to my pediatrician who told me it was normal and not a big deal and I should just get up slower. after I fainted for the first time, I saw a cardiologist who told me it was likely an adolescent thing and I would grow out of it but recommended the standard treatments anyways (increase water and salt intake, wear compression socks as needed, etc). eight years later I went to a new doctor for an unrelated issue and mentioned my symptoms while explaining my medical history. she was horrified and was like "nah we're sending you back to the cardiologist, that's not normal."
said cardiologist was an asshole and told me it was likely just my ADHD meds. when I told him that my symptoms started several years before I started those meds, he pivoted to "you're just dehydrated".....my dad is an endurance athlete and drilled the importance of hydration into me very early. I have been carrying a water bottle 24/7 since I was 10 and I refill that sucker multiple times a day. I am good about taking electrolytes as well. I knew that wasn't it but I was so frustrated and upset that I didn't say anything. (sidenote: bless my dad who encouraged me not to give up. he's had his own share of cardiologist visits (though in his case because he has a very low resting heart rate) and told me some specialists are just asses and won't listen to you. but there are good ones out there, you just need to find them.)
I moved states a year later and asked my new doctor (lovely man, bless him) to refer me for autonomic testing. ten years after developing symptoms I finally got diagnosed. I was able to do it but I had to advocate for it and get specific and say "this is the test I want and here is why." my current doctor (the one who referred me) originally didn't think I had POTS because my heart rate didn't jump particularly high when we did a poor man's tilt test but he, thankfully, saw the results of the official testing and realized he was wrong and is now very supportive of me getting the treatment I need to manage my symptoms
Honestly it depends what doctor you have and if they are willing to explore that avenue thankfully mine sent me to a cardiologist who specializes in it 😅 I’m still undoing diagnosis and should hopefully have results soon but I was basically told I have about an 80% percent chance of having it because I’m not only hyper mobile but I can’t regulate anything. I’m on the lover end but I’m pretty sure it’s getting worse because I’ve started fainting spells when I move too fast. I use iHealth to track my blood pressure and blood ox and that data gets sent to my cardiologist for him to review. It is very hard to get diagnosed by from my understanding older doctors but the new med students hitting the work force seem to be able to identify it quickly. Especially if you’re on the high end. Unfortunately I’ve likely had it since I was very very little. My doctors have all been older and I just recently started going to a younger doctor and she sent me in for 3 blood tests and then to a rheumatologist who then sent me to a cardiologist but it’s only been 4 months since this whole situation began so it’s different for everyone.
I think a big thing that is happening right now for people is they end up with doctors who are not up to date on medical information post covid. POTS used to be very rare. So as many people have said it often is getting misdiagnosed or ignored by medical professionals because POTS and other dysautonomic disorders weren’t something they were seeing frequently with patients that have some similar symptoms to dysautonomia. I have read that since covid, cardiologists, electrophysiologists & neurologists are seeing patients with dysautonomia multiple times a week whereas it used to be maybe 1 patient a week or sometimes even 1 a month.
On top of all of that, POTS is more prevalent in women and as with most things that affect more women than men, there’s a lot of gaslighting. 🤷🏻♀️
I had a very diligent primary care doctor that gave me any referrals I needed but it still took me over 3 years to figure out what was wrong with me and get a diagnosis. For a long time all I knew was that after I had covid in 2020, something was wrong.
Question mark on the "POTS used to be very rare". More like diagnosed POTS used to be very rare. You can find a lot of people (including me) who had probable POTS as far back as they can remember but only found out it was a specific medical thing due to the recent news. Honestly even *I* thought I was just lazy because I had such a strong preference for sitting over standing still and I'm OK if I'm moving so it wasn't that obvious.
My cardiologist didn’t diagnose it… And it’s so obvious it’s what I have. Each morning on the holter my heart rate went from 60 to 130 just after standing up.
They probably don’t diagnose it because POTS is a symptom, not a disease.
I was also so very lucky to be told on my first cardiology appointment - “This sounds like something called POTS”.
Also I’m diagnosed with severe anxiety, so I thought I might get brushed off.
I think something that ended up helping me is that I was already on beta blockers for anxiety. They saw I was having these reactions while on them, and were concerned.
But I’ve read horror stories on here and feel very thankful. I live in a major metropolitan area and love my doctor.
My PCP has been very willing to refer me to a specialist for the testing since I check all the boxes. My problem is that the nearest doctor who can test me is 3 hours away. That's a whole day I'd have to take off work. And I even live in a large city with a large college of medicine, and I have great insurance. Lots of hoops to jump through to get a formal diagnosis, when I really don't know how much a formal diagnosis "does." Can't get ADA accommodations, there's no meds to treat it....so I feel stuck.
Idk i havs a nice cardiologist i saw years ago a couple times. Went back to him to ask about pots and i left with the diagnosis and a ton of literature
As a women, my doctor loves to tell me it my anxiety and its just because Im a young women, or my favorite, its because of your period. NO ONE LISTENS. I am in pain, tired, lethargic, and sick everyday and the one person I should be trusting with my health does not take me seriously. They won't run tests, but when they do and it comes back abnormal, they just tell me I'm anxious. I'm tired and exausted, all I want is a doctor to listen to me.
I don’t understand why so many patients with suspected POTS are being told they need a tilt table test. That is typically only necessary if they are experiencing syncope or they have been diagnosed with POTS and treatments are having no impact. With so many more POTS patients than there were pre-covid you would think we would be managing that a little tighter. But no. The last person in my area trying to get diagnosed was told she could get scheduled for a TTT in 6 months (3 hour drive is closest option) and they won’t treat her before then. She has never experienced syncope. Sooooooo yeah i don’t get it.
Yep. My aunt actually had her TTT done today and passed out. They said she passed the TTT even though her HR went over 150. She's demanding a 2nd opinion and I informed her about POTS, which, given the FAILED TTT and her symptoms, I'm 100% positive she's got it.
Got a TTT. Heartrate difference was 25bpm in the first 10min, so 'negative'. BP wasn't measured at the moment I fainted so also 'negative' for OH.
So yeah, even if you can convince a cardio to do a TTT, they will not diagnose they don't want to.
Another cardio said "It's probably a BP drop, but since that wasn't measured it's probably psychogenic"
I’ve been passing out for 8 years, have gone to my doctor multiple times about high heart rates (like 190 bpm lol) and she STILL WILL NOT GIVE ME A REFERRAL!!!!! And I need a referral to a cardiologist if I want insurance to cover any of the costs.
I got lucky and got diagnosed on my symptoms alone by a doctor who knew what POTS was and believed it was real. She diagnosed me with POTS, and fibromyalgia and chronic fatigue syndrome at the same time. But I’ve been sick for so damn long.
I e been wondering that as well. As compared to others it didn’t take long for me to get my diagnosis. What took time was all of the tests and specialists needed to rule out other issues
I had a doctor refuse to believe it was a real thing after I received the diagnosis. It also depends on how severe it is. The doctors who did diagnose me think I might have had it for years and it only got worse with Long COVID (ie it wasn’t trigger by LC - just worsened). The same doctor who doesn’t believe it is a real thing has constantly dismissed my earlier visits to him as ‘stress’, ‘anxiety’ and ‘burnout’. My high heart rate was ‘just nerves’ etc.
It took me a very long time for them to even order tests for it. I started experiencing symptoms before the internet was common so I couldn't look it up and ask for testing and none of the specialists I saw were getting it. It took like 15 years to finally get a tilt table lol.
Took me many years to get diagnosed. I got tested for thyroid issues and had blood work done a gazillion times, even got sent to a neurologist, but never a cardiologist. Eventually, I heard about POTS online, spent months researching as much as I could abt it, and eventually scheduled a cardiologist appointment. I didn’t mention at first POTS, just explained my symptoms and medical history and begged the doctor to help me, saying I was tired of running in circles and getting nowhere. She promised she would help me (and she did, this doctor is an angel). After testing for some other things and ruling other things out, I brought up that I thought it might be POTS but that I trusted her, to which she agreed that might be it - eventually she was the first one to diagnose me, later I went to a specialist and got diagnosed a second time.
Point of my story: At no point in my years of searching for answers did I ever hear about POTS at all, and even when I was seeing a cardiologist, she didn’t even think about POTS as a possibility until I brought it up. And I’m a very clear cut POTS case - heart rate raises about 60bpm when I stand, I pass out (which isn’t a requirement to have POTS but is what most people think about when they think of POTS), etc etc. I’m basically a poster child, my case is so clear cut - someone just had to be looking for it. For me, I think the main issue is that POTS is just not in people’s minds or is something they consider, plus what some people have said in the comments about some doctors not thinking it’s real.
My doctors convinced me it was anxiety for several years until it got bad enough that I KNEW something was wrong and started harassing my doctors to look into it. (I do have anxiety but as soon as some doctors see that, they immediately blame everything on it)
That is great! My PCP has been amazing and so has the majority of my specialists, but its not universal.
My cardiologist left right about the time I had my Tilt Table Test and the rest of the practice would not touch me or my test. I had to threaten to get insurance involved because they paid for it and none of the cardiologist would interpret it. I got a non-POTS POTS diagnosis where the cardiologist basically is like "she reached POTS criteria, but I don't believe in POTS, so I am not going to diagnosis it as pots." Luckily my PCP helped me out with it and I see a legit autonomic specialist this week.
Also, about a decade ago I had the worse doctor. Unfortunately, I was internalizing a lot of abuse at that time so when she came along I took it from her. She would ignore my complaints and refuse to investigate them. When she did my pap smear she would put in a speculum that was too big and ignore me as I writhed around in pain on the exam table. I came in with joint pain (that I now know is from EDS) and was asked if I injured myself. When I said no she got angry, refused to see me, cancelled the visit and threw me out of the office. I was scared for years to see another doctor.
for me its because in the state i live in there is only one POTS specialist and he's booked clear until somewhere in 2025. and thats after all the other tests and bloodwork i did to make sure it wasnt anything else
It shouldn't take a POTS specialist to diagnose POTS, just like it doesn't take an oncologist to diagnose cancer. A PCP can do it with referrals for the necessary cardiac testing to rule out other possible causes.
https://www.cmaj.ca/content/194/10/e378#sec-10
for me, it took 7 years to get mine. i kind of chalked it up to doctor’s assuming my period was the problem and just wanting to put me on birth control without looking into my issues.
Mine insisted it was my adderall despite prrof it was not- I'm a biologist so tested no adderall, no change at all.
"Sure it isn't the stimmies? Not even a bit of mary Jane??"
i also got a lucky diagnosis in high school but the very structure of patient-doctor relationships encourages doctors to regard patients with skepticism. plus lots of them don’t believe in POTS
According to Dysautonomia International it takes an average of 5 years and 11 months for someone to be diagnosed with POTS in the US. https://www.dysautonomiainternational.org/page.php?ID=184#:~:text=The%20average%20diagnostic%20delay%20for,the%20first%20year%20of%20symptoms.
If you're a young female the doctors fob you off by saying it's just heavy periods and teenage tiredness (which isn't really a thing or a diagnosis but ok)
Becuase I have “anxiety” listed in my chart from 4 years ago and I’m a young female. I definitely can’t have POTS if I was on Lexapro for two years for anxiety, right? It’s a better idea to re-prescribe that good ole Lexapro (that doesn’t work for my non-anxiety symptoms!) instead of listening to your patient when she tells you this is *not* anxiety and it feels distinctly different from the anxiety she used to have. I’ve gotten the basic testing done to rule out worse conditions, but no doctor has yet to give me a tilt table test, which I have asked for. They just say it’s unnecessary because it’s “definitely just anxiety” 👍🏻👍🏻👍🏻
Sidenote: while I’m not officially diagnosed, I have all the symptoms and several of the comobird conditions. I’ve also done the poor man’s tilt table test multiple times and every time the “results” point to POTS. I can’t afford to see a specialist for now. Also, the treatments and lifestyle modifications that work for POTS work well for me, so all considered I’m pretty comfortable with the likelihood that I have POTS!
It's a lot easier now than it was even just 4 years ago, but there are still tons of doctors out there who refuse to do the testing, or who do it and say the results were normal when they weren't.
Medical misogyny, fatphobia, doctors don't know what POTS is, or if they sorta do know what it is, they invent imaginary criteria to rule it out (like fainting being a requirement, mixing up OH with POTS, assuming deconditioning is the same as merely being sedentary, assuming it's rarer than it is, assuming young patients will grow out of it, etc. We see all this and more here.).
Bc they are so uneducated about it and think it’s a 1 in a million super rare condition so they won’t even test for it. I just got told it was anxiety for years even while the doctors could see my heart rate while changing positions and saw so many symptoms but ignored me
Everything for me started 11 years ago when I was 15. Doctors didn’t know to even consider pots and me being a teenager just assumed I wasn’t drinking enough water. (Also got told I had an ear infection and that was why I was passing out).
Overtime, I got slightly “better” because I started subconsciously recognizing my symptoms and adjusting for them but also I was just getting used to them. If you’re in pain long enough, you forget it’s there. It didn’t help that my mother thought I was just being overdramatic, so I assumed that this must be how everyone feels.
Also a lot of symptoms I had, I didn’t even recognize as symptoms. Like I didn’t even realize that my Heartrate was beating hard because I was standing, I thought I was just lazy. I didn’t realize the craving for salt was symptom, or the temperature intolerance, or the dizziness. I had explained away each and every symptom and justified them.
It was my husband who pushed for me to get help. He insisted that the way I felt was wrong, that I shouldn’t be out of breath all the time, and struggling like I do. I ignored him for a long time, for a really long time.
The pots led to me getting deconditioned and when Covid hit the world (I’ve never had it) it got so much worse because I stopped leaving my house. My PCOS and sedentary life style led me to gaining *a lot* of weight.
When I finally decided to listen to my husband and get help, I was morbidly obese. The conversation turned from “You need more water” to “You need to lose weight”. “I won’t give you meds unless you lose weight”.
When I managed to lose 15lbs and saw the doctor again. He didn’t ask me if it made a difference, he came into the room and went. “You’ve done such a good job. See now don’t you feel *so* much better!”
I was confused, it caught me so off guard. I simply said “no” because I didn’t. The weight loss had made absolutely no change.
His response was “Really?! Not at all?”
He then moved on to tell me to lose more weight and come back. He also really really pushed weight loss surgery.
I eventually went to a different cardiologist. He ran a bunch of tests, and couldn’t figure out what was wrong. He was also the one who told me that he thought weight loss surgery would be a bad idea, that it might make things worse. Something about my weight stabilizing my blood pressure, I don’t know. But he ran a tilt table and it came back negative but I was also told over and over again that the tests were extremely unreliable. (I’m not sure why that test didn’t work for me. It was so weird.)
However, I’m not paying for another one and He can’t diagnose me without a positive one. So I’m in limbo. Being given meds like I have pots, doing the water, salt and socks but nothing on my chart.
Losing weight can def make it worse. Worst part for me was that gaining most of the weight back didn't make it better, although at least losing weight the second time didn't make it more worse. I don't have obvious loose skin or anything but I do wonder if there's some amount of permanent stretching making it harder for my body to keep blood up in my head.
Yeah, It makes sense tbh. I am planning on going to get weight loss surgery but I’m aware I could get worse and likely will. But at this point my weight is just making things 30x harder. Also it’s hurting my mental health badly.
(There is a part of me that hopes that when the weight is gone I’ll be taken seriously but I’m sure they will come up with a new excuse for the issues that don’t make sense)
NGL, I do get treated more seriously when I'm thinner. But it also makes me look slightly older so I look more like someone who's paying for things (aka customer, not just patient), and I'm in management now (...involuntarily...) so I'm used to people doing what I tell them.
It's maybe worthwhile to at least bring it up and see if there are any adjustments to the surgery taking POTS into consideration. (I have no idea if there is anything they would do differently, but maybe something with supporting smaller blood vessels? Idk.)
We’re very lucky compared to most other POTS patients. Good doctors are rare. Good doctors educated on POTS are even rarer. Doctors refuse to believe us due to the fact that POTS is not a widely known and/or acknowledged condition in the medical community, though it absolutely should be. It’s usually labeled as anxiety, especially in girls.
My cardiologist also immediately threw everything he had at me, and even called colleagues into the room to watch the monitor because he found it interesting (he’s a Harvard professor too, though). He checked for heart failure and everything. He even gave me an MRI to be sure he didn’t miss anything. I had a full cardiology team and a diagnosis within 2 visits.
He didn’t hesitate with starting me on medication, and he says that he won’t hesitate to use ibutilide if he has to, either. He means business.
Because half of the doctors around don’t know what POTS is or how to treat it. My cardiologist only sent me for testing because I openly said I need to be tested for this otherwise i want you to document you’re refusing to test me despite by consistent symptoms. I found out about POTS through my own research and treat myself that way too since the only advice I ever get is to drink water and wear compressions socks
I think it’s because most doctors are not trained in or educated about pots. There are a lot more cases now post-COVID and vaccines, so hopefully that is changing. Currently though I think most don’t know enough to pick it up in their patients. The ones that know a tiny bit, but not a lot can be even more dangerous because they may have misconceptions and are not properly trained.
Unfortunately from what I’ve seen, most MDs seem to think that anyone whose symptoms don’t fit neatly into a diagnosis they know well most be misreporting or experiencing something psychosomatic. In reality, the field of medicine is constantly evolving. We need to change our system!
3 things: 1. A lot of the symptoms presenting can point to other more life threatening causes so those need to be examined and ruled out first. 2. Symptoms don’t always present… like your blood pressure can be real low but because of white coat syndrome, it may seem fine in the office. People are often nervous at the dr office so they may blame higher heart rates on that. Also, we’re not usually in the heat, just standing, or climbing a flight of stairs where our symptoms can get worse and be noticeable. 3. Some doctors don’t really think it’s a thing and believe it’s just like undiagnosed anxiety or people who are just out of shape… sad…
I've had a nurse tell me before "there's no need to feel nervous" after checking my vitals. I was like "oh I'm not nervous at all, I just have POTS." My HR wasn't even that high (for pots) at the time, like 108. Also I had low BP and presyncope for years pre dx but when I asked about it they always said low BP is good. Not when it might make you faint!! But they are so used to high BP that they miss when low BP could be a sign of a problem
I had the same thing happen standing getting hooked up to the machines for my stress test 🤣 my hr was 130 BPM and he was like "no need to be nervous I'm a cool guy" and I was like "I'm literally chillin, I think you're cool too. This is just literally the reason I'm here"
"I'm chilling, my autonomic nervous system is not. That's kinda the point of this whole test thing."
Number 3 is probably the most common. Doctors can be so pretentious.
Exactly. I just went to ER this week because I’ve been fainting every time I go up the stairs and after I feel extremely lightheaded for at least an hour. Also extreme chest pain 24/7. The doc mentioned anxiety 5 times. Finally I broke down and told him I would not be in the ER for just anxiety and I’ve been told that for a year. He sat down next to me and said, “do you have anyone to talk to?” My dad just about punched him. My TTT is next week and I’m begging the good graces that I can get some freaking medication. The cardiologist that ordered the test also said that POTS isn’t really a thing, they’re still trying to figure out what it really is? Wtf I have no hope anymore. I’m only 28 and I don’t even think I’ll make it to 30. I’m completely bedridden. Every time I go to the bathroom I start losing consciousness within 3 min. This is not how I want to live my life anymore. I live in UT but go back and forth to the Bay Area if anyone knows of any good doctors.
Sweetie please do everything you can to reduce POTS symptoms. Eat no more bread, potatoes, pasta, processed foods and drink a lot of water and make sure you eat a lot of salt. Avoid sugar. Add light exercise everyday to your routine. Good luck
Drink 4-6 litres of water a day, 8-10 grams of salt/day, and look into excercises you can do laying down /seated to strengthen your legs and core. These are things you can start doing now to help your symptoms. Pots itself is a syndrome, a collection of symptoms. It is real but it’s the pots itself that they don’t have know a root cause for only theories
Yeah it’s a mess of symptoms that need further analysis so I can understand why specialists can be vague. It’s not reassuring though. Do what you can to do stuff when you can and slowly build what you do. I got stuck in bed for a few months as I had a flare (which was when I finally got diagnosed) now year later, I can walk around and do stuff. I do get exhausted and have bad days. And driving is too daunting. But there are good days when I do enjoy life.
I've had your ER experience repeatedly, as have others.💔 Do the things you are reading on this sub about water and sodium intake and compression stockings. Do them. A ridiculous amount of sodium and water. This is going to be hard for you, I understand. I've been bedridden or mostly housebound for 2 years. FIVE DAYS AGO. I started compression stockings, sodium, and water as recommended all over this sub. I rode along with my husband to do an errand. I waited while he went in. I helped him in the yard a little bit. I've been waiting for the crash to come and it has not...yet. I am getting tired, but I'm sure I deserve it. My doctor is wonderful. Finally a good one. So many symptoms and labs and we've been ruling out things. 💖Thank you to everyone here💖
#2 especially. I’m pretty sure I’ve had POTS since my teenage years but the past couple years were the first time the symptoms were really bad. Plus the fact that I had a lot of other medical issues that were taking the forefront of my doctor visits AND a lot of POTS symptoms are the same as those issues.
This is strange to me but maybe it was because I was already seeing a psychiatrist for my bipolar? That might’ve helped them to not believe it was anxiety
Unfortunately, a psych diagnosis can be kryptonite for a POTS diagnosis. I'm glad they didn't blame it on that! They tried to blame everything on my past depression diagnosis, despite me telling them it had been fully controlled by medication for years and that my exhaustion wasn't depression and that *I knew the effing difference*. 🙄🤬
This. A cardio told me "it's probably psychogenic" bc I'm diagnosed with a few things (not anxiety tho)
It's because a good portion of the medical community does not believe it is real. That's why. You luckily found one who did.
Definitely this, but also doctors doing their due diligence have to rule out several other more serious cardiac issues first. A lot of people these days walk into doctors offices searching specifically for a POTS dx on the basis of sx they read about online that have a massive overlap with other conditions and thennget frustrated when they don't get it in one or two visits. Lots of doctors are also ill-informed, even if they're aware it's a real condition, and that can slow down dx and treatment. I agree OP got very lucky. When I was diagnosed around 10 years ago, inwas considered lucky to have a dx in 9 months. It used to be standard for people to not get answers for several years.
When I got other cardiac issues ruled out I also just got told I am probably out of shape and my physio for eds should help my presyncope too. I had worked as a waitress at a damn busy place half a year earlier, and worked at a busy bar when the interaction took place. And walked almost everywhere.
They still needed to rule those things out. Jumping to POTS is unreasonable considering the massive overlap in sx with so many other conditions. It sucks they didn't take your concerns seriously. I think the best route is for people to search for the *correct* diagnosis rather than a specific one.
very good points! I wouldn't be surprised if doctors are more hesitant to diagnose now specifically because of those types of people who either come in looking for that diagnosis or self diagnose based on internet information (which often is either blatantly false or is true but doesn't include the necessary nuances), especially in the case of teenagers who sometimes *literally are just dehydrated because they drink more coffee/soda/energy drinks than water.* part of the medical "code" is to start with the least invasive treatment. that extends to diagnosis as well. you start by ruling out the more common and easily treatable causes and then work from there. if a patient comes in with GI symptoms that are triggered by food, you don't jump immediately to "it's probably cancer, let's get you a colonoscopy." they generally start by having you do a food log and use blood tests and stool samples to check for things like celiac, ulcerative colitis, and parasites. *then* they move on to more invasive testing. I think sometimes people also forget that doctors (at least in the US) have to justify to insurance why they are testing for certain things. insurance companies do not want to pay for stuff they don't have to! so as frustrating as it is as a patient, unless you can come in and tell them what you have already ruled out and how you tested it, they need to make you do things like drink more water so they can prove it's not a simple case of dehydration
Yes, that's an excellent point about insurance. It sucks big time, but that's how it's done. I've been through that song and dance myself when I was dealing with my sleep apnea diagnosis and insurance didn't want to cover an MRI because they didn't it as medically necessary despite me being in the ER multiple times a week for a few months.
A lot of people don't recognize that their symptoms are orthostatic (unless you knew about POTS, you wouldn't consider this variable for quite a while), so they might only report super vague symptoms like fatigue or brain fog or heart palpitations. Routine blood work won't show anything. Basic cardiovascular screening like a heart monitor, EKG, ultrasound also won't show POTS. Once these come back normal, most doctors aren't even educated about POTS enough to do a NASA lean test, and most certainly don't have a tilt table for a proper tilt table test. Mainly though, misogyny is a big factor in the difficulty of getting a diagnosis. I remember mentioning to a cardiologist in 2018 that I was passing out upon standing up(I was concerned about POTS), and he told me that it was normal for young women to faint like that. *Eye roll* Unfortunately, I was only 19 and was impressionable as hell. I believed him because my mom and sister both experienced the same symptoms. I ruled out POTS from my list of potential diagnosis for several years until every other avenue of testing was a dead end. You are SO lucky to have been believed and properly tested, though there are lots of conditions that need to be ruled out completely before POTS is officially diagnosed.
The amount of wild shit that people tell girls and women is "normal" is ridiculous. It concerns me that so many guys seem to be going through life believing that hellish misery is fully normal for women and girls. Crippling pain in your abdomen? Passing out when you stand? You bloat like you swallowed a yoga ball whole when you're on your period? That's just another Tuesday, isn't it?
Had to go to the ER following the second COVID vax because I spontaneously began bleeding the day after I got it. I went there said my body does not react well to COVID and I finished my period a week and a half ago. It was bright red and did not look like my period at all. The ER doctor on call was a man and was like oh its Menorrhagia, which is heavy menstrual bleeding. I'm like this is not regular to my cycle whatsoever. Like dude, I HAVE heavy painful periods this is not that. Had an ultrasound, maybe a burst cyst and discharged me. I remember just being so mad I was just sobbing with rage they wouldn't take it seriously.
I went to the ER for bleeding that wouldn't stop, was told by the nurses that it might be a ruptured cyst plus ovarian torsion caused by the rupture. The Gynecologist that saw me the next morning was male, and he told me it was just my period. I know my period. It was NOT that. It was waaaay too much blood, and too bright red. I did not follow up with him later that week. My ovary corrected itself later thay same day, and what do you know... The bleeding stopped! *eye roll*
That's absolutely insane! I've never spoke to another person whose had ovarian torsion. Not the time I'm speaking of, though maybe in hindsight that's what it was again, but it happened to me when I was 13. I thought it was really bad period pains but then woke up in the middle of the night, crawled to the bathroom to throw up the pain was so bad. Turns out my fallopian tube wrapped around itself not one, not two but three times. I had to have emergency surgery to remove that portion cause the blood supply was cut off, it was laproscopic and I saw the pics after so gross it was purple. Do you know what caused yours? No doctor has ever been able to tell me why it happened
Mine happened because of a sneeze! I sneezed hard, and that apparently caused the cyst to rupture, which in turn sent my ovary into torsion.
Yeah I can confirm this. Until I almost fainted at work, my complaint was "my heart beats too fast"
>I ruled out POTS from my list of potential diagnosis for several years Ditto, friend. I am so sorry you went through that. ❤️ I never clocked that my heart was doing anything wonky, so never mentioned it to doctors. In my case, nobody considered anything else, they just ran with my weight and history of depression. I stopped trying for medical help for years and years in the middle of the 20 years it took to get diagnosed. I just couldn't being dismissed one more time.
Yeah the first few times I fainted they said I was dehydrated, then they said I was iron deficient. After I had treated both they figured it out
sounds like you didnt get your dx fast then
I grew up on a special forces military base, so the men were always deployed. I totally thought it was normal for girls and women to just always feel dizzy and lightheaded when I stood. It definitely perpetuated my belief that men are just tougher than women. Decades later, tons of girls from this base have been diagnosed with POTS and other autoimmune diseases, and also it turns out this particular base not only had lead pipes and lead paint, but was used as ground zero for Agent Orange (and other) testing lol.
I was “lucky” enough to get diagnosed 6 months after developing POTS from long covid. But around the 3 month mark, I had asked my cardiac nurse practitioner to get me diagnosed so that I could get accommodations for future jobs. She said “Well, there aren’t really accommodations for POTS anyways so there’s no point in getting a diagnosis since we’re already treating you with Metoprolol.” Luckily, I saw an electrophysiologist who gave me a poor man’s TTT. But my provider’s comment about a POTS diagnosis not being necessary was incredibly ignorant, and there’s plenty of providers who think the same way
I can't believe she said that there are no accommodations for POTS! The ignorance... 🤯
Because it’s hard and can take years (on average it takes 7 years). From when my symptoms started until dx it was 8 years for me. During those years we did extensive testing to rule every other possibility out. Most cardiologists aren’t knowledgeable about POTS. The fact yours was is great but not the norm. Moreover if all you did was a poor man tilt test in the doctor’s office then you have not fulfilled all of the criteria for a POTS dx as it’s a dx of exclusion meaning they have to exclude all other possible causes which can take a long time (in my case years). EDS also has a specific dx criteria (in fact many! As there’s many different kinds). A heart valve not closing all the way is certainly a sign for some types but without further testing to eliminate other causes of symptoms, possibly genetic testing based on the type, and testing like the Beighton score an EDS dx could not be given. If you’ve had testing like the Beighton score and meet the criteria for hEDS that’s great! I’m happy your cardiologist was so helpful. I’d be a little suspicious if they didn’t go through the criteria with you beyond finding the heart valve on your echo.
Yeah this is the problem. I live in a major metro area (San Diego) and my first cardio asked ‘what is POTS? I’ll have to google it. Now I have a POTS expert. My allergist who is phenomenal also told me I probably needed to go out of network because most of the doctors here ‘don’t believe in it.’ I am already diagnosed. I will say every time I’ve been hospitalized (MCAS) my drs understood POTS. And it was originally an ER nurse that pointed out I have it. I thought she was asking me about weed, I didn’t know what POTS was. 🤷♀️
Yeah I live in a major city where there are only two Dysautonomia experts in the province both with 2yr+ long waiting lists if they’ve even reopened them yet. I saw so many docs in those 8 years and did so so many tests.
Me too. Me too. It’s a slog.
Yeah I simplified a bit, they did a full connective tissue panel once they saw the heart valve and found I had EDS and I was a carrier for brittle bone disease
Happy to hear they went through it carefully!
Heart abnormalities like that are almost exclusively found amongst those with connective tissue disorders. Same thing with pectus deformities. Knowing what kind it is can be helpful to the patient, but it won't change the treatment options so a lot of doctors just do not find the need to diagnose exactly which one it is.
I have heart valves that don’t close and am dxed with HSD. There are many types of CTDs including EDS but it’s certainly not the only type :). Likewise, I’m a heart disease survivor at 21 but vast majority of those with my heart disease don’t have a CTD (though it being linked to EDS is in part how I was able to secure testing and eventually a dx). Yes it can be found in CTDs but knowing what kind of EDS can be super important due to additional risks (such as VEDS) and treatment based on the type can occur (for example, my EDS clinic prioritizes certain types to get earlier treatment, and along with us being treated by symptom focus which is so important!). /g
Plenty of people have brought up that some doctors just have no knowledge of it - so i'll touch the other side of it. 1. POTS is a syndrome, it's a manifestation of Dysautonomia. Everyone who has POTS has dysautonomia, which can cause a wide range of non specific symptoms that may distract from focusing on the POTs specific ones. 2. Yes, there are specific measurements for it, however, plenty of stuff can cause those symptoms, some of which are deadly. You have to rule those out, and that can take a lot of time even with a doctor who is on top of things. Even after having a doctor suspect some form of dysautonomia, which took a long time on its own - i went through a battery of different tests pretty much daily for about 2 months. I was lucky enough to be in college at the time, i could take the time to do that. If i was someone with a job or a child to take care of, those tests would have taken a lot longer to do.
I couldn't even get a referral to a cardiologist until I was 18. I had been symptomatic since I was a toddler and the doctors just kept saying it was anxiety or hormones. I had to really advocate for myself to get a referral. When I got there the cardiologist did supine ecg and then told me there's nothing wrong with me, I'm perfectly healthy, I should be grateful because he has to tell people they're dying all the time, and I *"need to grow up and get on some antidepressants".* Needless to say I didn't pursue any more testing until I was in my twenties. The Dr I saw tried to test my iron AGAIN and I fucking exploded at him and pushed to be referred to the syncope clinic that a different doctor had briefly mentioned. My tilt was immediately obvious and the specialist said "Oop, yep. Textbook POTS".
THIS. My symptoms are literally all over the place and most of the things wrong with me are diagnosed by ruling everything out first. Also I have a hard time finding a doctor who will look at the whole picture, like take everything I've had done and assess from there. I've been fighting a long term disability insurance case and one of the things I did was sit down with my medical records from the last four years and highlight everything that stands out. I was in tears by the end of it because I was like how can no one see there's something seriously wrong with my autonomic nervous system. Like it's all right here. Luckily I'm seeing an autonomic neurologist in October I've waited a year to see and I live in MA so it's in Boston.
You might be surprised, but there are a LOT of ignorant doctors out there who either misunderstand POTS criteria or don’t “believe” in POTS. They refuse to read up to date medical studies and literature about it or refuse to change their deep seated biases against POTS when they do encounter the literature. The first cardiologist I was referred to was one of these doctors. Fortunately for me, when I called to schedule my appointment the nice front desk employees strongly recommended that I ask my doctor to change the referral to a different doctor in the practice. The second cardiologist was very helpful and thorough. It took months to schedule all the tests, but well worth the wait.
I understand why we get referred to a cardiologist at first to rule out underlying heart conditions but I almost wish we didn't. Along with myself, I've seen so many people on here have horrible experiences with them. I had to wear a two week hear monitor, an EKG, a stress test AND a stress test with EKG after he had concerns after the first one. During the second one my HR got to a high of 214 BPM in less than 10 minutes and I got pre-syncope. He said that was "normal", that's well over a max HR for a 26 YO at the time. He verbally diagnosed me with POTS but when I asked him to write me a letter confirming it for my long term disability insurance case he refused. He said he wouldn't even begin to consider me disabled until I did cardiac rehab and went to a long covid clinic for "experimental therapies". It's not even SSDI, I'd just be covered for 2 years until I had to be re-evaluated. Not even trying to claim I'm disabled for life just trying to get paid during the YEAR long wait to see my autonomic neurologist.
Yes, even if you’re fortunate enough to encounter a doctor who can accurately diagnose POTS, many of them really underestimate or downplay the impact it can have on our lives and our ability to function. It’s really frustrating. I’m sorry that your doctor isn’t being more understanding and helpful.
In my case, in Canada, none of the doctors I spoke to had heard of POTS. So it’s hard for them to diagnose a condition they don’t know about. Once I found out about it and suggested I might have it, some medical professionals felt threatened. They didn’t know about the condition and essentially dismissed it rather than acknowledge a gap in their knowledge to a patient.
A) a lot of docs have no idea what it is B) they put it down to stress and/or anxiety C) "You're too young to be sick"
From reading through this sub, about 50% of the people here actually have pots and 50% are just searching in the dark (which sucks, many of us have been there) But from what I’m reading, a large amount of people aren’t presenting with POTS symptoms, but wanting a POTS diagnosis, and not getting it. I am completely excluding the people with actual POTS who are being completely ignored by the medical profession and need a second opinion. I read dozens of symptoms here that have nothing to do with POTS and a lot of frustration.
I can completely understand the frustration of knowing something is wrong with you, but not having a name. It's really hard to go into remission if you don't know how to control it.
>from what I’m reading, a large amount of people aren’t presenting with POTS symptoms, but wanting a POTS diagnosis, and not getting it. Bingo. It's the new trend amongst teenagers needing to be special. Having a disorder is like a badge. They're doing it with mental disorders as well; DID, autism, and Tourettes are the most common ones. If they don't get the diagnosis, they claim misogyny or ableism. It's incredibly frustrating for actual disabled people who can't get help *that they actually need* due to these people clogging up the system with their nonsense.
Oh god…. Celiacs too. Those poor celiacs seriously. I can’t imagine how much digestive distress has happened to people with that condition- because no one believes wheat actually destroys their intestines and they’re treated like attention seekers and not taken seriously.
Yeah, when in doubt, just keep trying with medical doctors. Falling into the “self-diagnosing” route is dangerous for everyone regardless of whether you actually have POTS or not.
I went to the cardiologist and he refused to even take my heart rate. He felt it with a stethoscope, said “yeah you’re heart rate’s going up a lot. do you feel it?” and then told me I didn’t have POTS but anxiety and sent me on my way.
Maybe because I was already seeing someone for bipolar then??
I’m on anxiety medication. I think you got a lucky doctor. My primary care believed me immediately and gave me a poor man’s TTT referring me to cardiology but this cardiologist did not believe me one bit.
My first doctor I went to about it said I had anxiety, but also because I was newly married and might get pregnant he didn't want to prescribe me anything for anxiety. I switched doctors, because yikes. My next doctor thought it was anxiety, but was at least not condescending or misogynistic. I kind of gave up at that point and just lived with being miserable and having more and more of my life chipped away at, doing what I could on my own to manage what looked to me like textbook POTS. At the start of this year, our insurance changed and I had to switch doctors. My very first appointment with my new PCP, he asked if I've ever heard of POTS, did an EKG, and got me a referral for a cardiologist. So much of it is just the luck of finding a doctor who is educated on POTS and listens.
Being told you’re ’just anxious’ ‘stress less’ for many years = you believe you’re crazy. And you think you’re a hypochondriac and don’t talk about how bad you feel inside actually. Then you feel so crap and see a new dr who actually believes you and runs tests and refers you to cardiology. Then the ‘specialist’ who ran my TTT was GOOGLING POTS diagnosis criteria during my test and said I was fine. Sigh. I was not. Grateful for a good GP and cardiologist, cardiologist saw the TTT results and disguised me immediately in my follow up appointment. It did take about 10 months due to wait times from the new GP to diagnosis, but symptoms all my life (43). Money is another big factor, all these tests varied from free (Medicare Australia) to $$$ appointments, it feels like a luxury I got to do this over the last year - we had to budget for it.
I was an athlete when I was younger, so there was no doctor on the planet who could convince me that I was imagining my symptoms, because I very well know the difference between exercise fatigue and recovery and being dizzy 24/7 non-stop. That’s how I knew to keep seeking treatment and help because I wanted to improve my condition which was rapidly deteriorating.
It's not as well known. Which is why I think its extremely bittersweet that covid happened because Covid caused a huge increase in POTS patients. I honestly think that is why I was finally diagnosed after 6 years of "anxiety" thrown around on my chart I got severe enough after the Covid situation that it forced me to go back to the doctors over and over again like I used to but this time they had enough knowledge about POTs that I actually was diagnosed instead of "anxiety"
Yeah I certainly did not see that coming. Never would have imagined that Covid would somehow benefit us by bringing awareness to POTS. I was diagnosed prior to COVID, but in a way I’m grateful that more funding is being drawn up for POTS research and a few more physicians are aware of it now.
In Canada a lot of us don't have family doctors so we are going to walk-ins for help or if we do have family doctors it's a 10 min appointment with very little help or acknowledgement of symptoms. There's no way I'll ever get a proper diagnosis for the majority of my issues and life will just get harder from here. It also doesn't help that I've had major traumas happen in hospitals so I have to be medicated to actually go into one. Sorry, it's been a hard day for my brain. I'm sure it's not as bad in some places, it's just very hard to be taken seriously here. Everyone thinks socialized medicine is great until you have anything chronic and then they suggest MAID if you get too cranky.
Lot of the reasons already mentioned, but there's also the fact that it's become the Hot New Thing to fake having. This results in two things: 1) there's a lot of people on the internet (and these subs...) talking about how they ~just know~ they have POTS and just cant get diagnosed 2) doctors are more wary of diagnosing people I've had my diagnosis for years, and I'm *still* interrogated at the doctor's or the ER when I mention that I don't know how the POTS might be affecting my presenting issue. I've gotten side-eye, glares, refusal for treatment, and flat out gossip from nurses half out of earshot ("yeah *everyone's* got POTS and EDS these days 🙄"). And I've seen *hundreds* of the "caught my fainting on camera!" tiktoks of people (usually teenagers) doing a viral dance (the "stand up sit down" one is popular for this genre) and pretending to pass out halfway through it. So I definitely understand the reluctance to believe me when every teenager in the tri state area claims to have POTS. Personally, I think the trend of faking POTS goes right along with the trends of faking DID and Tourettes and autism. It's something fairly easy to fake, and there's no way to point out their presentation is fake without being labeled as ableist. It's the new teenager need to be special, but now it's not a harmless "pretending to be a wolf girl" thing, it's directly harming disabled people and preventing them from being able to get care.
You, my incredibly lucky friend, are the very very rare exception, not the rule. Very happy for you though that you got prompt diagnoses and care! Most providers weren't trained in these areas so in their minds it's either not real, very rare, or outside of their scope of practice.
in addition to the big problem of medical gaslighting, even if your doctor prescribes a TTT not everywhere has the facility for it. my first cardiologist got me a stress test, echo, and holter, but gave me a different number to call for the tilt test. that number said they didn’t offer them either and had me call somewhere else which never got back to me. i ended up doing the test in a different state, which wasn’t in network for insurance and was extremely expensive. that said, cost is a huge factor as well.
You don't need a formal TTT for a POTS diagnosis. https://www.cmaj.ca/content/194/10/e378#sec-10
My rheumatologist believed me and ordered a tilt table test. My new cardiologist said she didn't think i needed it and said, "Let's not complicate things." Lady, I've got news for you, I have lupus. Life is already complicated. Doctors can be resistant to diagnosing POTS.
My doctors for the longest time told me I just wanted something wrong with me. My mom believed that too for a bit. Then they moved to the assumption that it was just anxiety, which proved to be wrong. I was even told to go on anxiety meds at the ER after one of the worst flare up’s of my life (we didn’t have a diagnosis or answer just yet) I just got officially diagnosed with POTs back in the end of April after years and years of being gaslit by doctors.
My chart has anxiety, ADHD, and autism listed. I don't think they listened to a word I said because of that.
Same but chronic depression and PTSD instead of anxiety.
There’s a lot of bad doctors that ignore symptoms, but I feel there’s some acknowledge there are perfectly good reasons doctors will not diagnose that quickly. Firstly, many doctors do not feel they are familiar enough with conditions like POTS and EDS to give a proper diagnosis. This is perfectly reasonable, a good doctor should not be giving out diagnosis on conditions they are not familiar with. I wouldn’t expect a hematologist to diagnose me with acid reflux! The current medical standards state that doctors need a TTT to officially diagnose POTS. (But that’s not to say anyone who was diagnosed another way isn’t valid!) Well informed doctors can often tell from a clinical evaluation whether you have POTS or not, I had two doctors who both told me that. However, they were not willing to give a definitive diagnosis of POTS until my tilt table test, I got a general “dysautonomia” diagnosis. The thing is, most doctors don’t have access to a tilt table test. It’s not really an easy test to get done, which is part of why it’s rarely diagnosed. You can have as good of a doctor as you want, but without the testing, it’s hard to diagnose. First, before my next point, I’d like to say your diagnosis is absolutely valid. But, with that being said, the way your describe your EDS diagnosis isn’t really how EDS is diagnosed. Most of the subtypes are diagnosed via genetic testing, which is not a 15 minute evaluation. It’s a quick test, but it takes a while to get back. hEDS, which is what I assume you have based on the description of your diagnosis, is diagnosed via clinical criteria. (It seems there’s some debate on if cEDS and vEDS can be clinically diagnosed as well, but that’s not important here, so I’m ignoring it for now) While obviously your heart condition is indicative of hEDS, it alone cannot led to an hEDS diagnosis. One symptom (or cormorbidity depending on the condition you’re describing) is not enough for a diagnosis, you need to complete the full diagnostic criteria. I would hope and assume your doctor went through that with you, even if you didn’t realize it and thought she was simply asking questions. Although, to be fair, it doesn’t take forever to go through the diagnostic criteria either, so it can easily fit into the time frame you mentioned. You don’t specifically mention going through the diagnostic criteria in the post, so I feel it’s worth mentioning for the off chance you are under the impression the echocardiogram alone was enough to get you your diagnosis. I assume a clinical evaluation along the diagnostic criteria was also done! If you already knew this and just didn’t include this in the post, sorry! Just making sure! While bias, malpractice, and other barriers are major factors in the lack of EDS and POTS diagnosis, there’s a lot more that should be considered. I would not consider a tilt table test “basic testing,” it’s a specialized test with specialized equipment not found in your average doctors office. It is fair for doctors not as familiar with POTS or EDS to not want to diagnose and they are aware of their limitations and are working to NOT patrol coats in malpractice and misdiagnosing. (Although, obviously, a doctor saying “I don’t know” is very different from a doctor saying “no, it’s just anxiety” One is responsibility, one is medical gaslighting!)
I'm really happy your doctors were so on top of things! And sometimes, yeah, doctors just refuse to do testing (for any stupid reason, a common one is "you're deconditioned, not disabled, just work out lol") or they just don't consider it. I passed out several times in middle school and highschool. every time I was blood tested for anemia, the test came back negative, and I was sent on my way. they just didn't bother to follow up, and since they're the doctors who went to medical school for fifty years I believed them (sorry, a bit bitter lol). for many years in highschool i was told I needed to train my heart up and do more cardio, and the other physical symptoms were anxiety. POTs is not a lot of doctors first thoughts. I was never tested for BP and HR in different positions until I had my tilt table test. My tilt table was scheduled a reasonable time out but I know a lot of people had to wait like three years ... You're right, it's absolutely ridiculous. We deserve better treatment. admittedly doctors are horribly overworked so it's not surprising, but... It's still disappointing.
The first cardiologist I saw didn't understand POTS and she seemed sure that nothing was wrong with me. She tried to tell me that I didn't have it because my blood pressure didn't drop when standing. She was confusing it with orthostatic hypotension. Then she said she wouldn't send me for a tilt table test because "there isn't any treatment anyway." I had to go join a research study on POTS in order to get a tilt table test and medication. So basically, the cardiologist was clueless about POTS and was very dismissive in general. The typical cardiology patient is over 65 years old and has had a heart attack. I think they see a younger person walk in and they already have decided that there is nothing wrong with them.
In my experience, it’s because doctors want to rule out a lot of other things that cause similar symptoms. It’s very time consuming and expensive and can be discouraging. I ended up having an unnecessary heart surgery in my path to diagnosis (which hasn’t happened yet!)
My first ND who thought I had POTS shrugged and said it was too hard to test so she didn't and her clinic was unstable and then covid happened. Every other doctor didn't believe me, in 2 diff states, until the third state (Oregon), I went to an ND who just...kinda assumed I had it and then realized I'd never been tested and got me tested ASAP.
Yeah straight up they refuse to do the tilt table test for me. Though to be fair they seemed to think it was probably pots just wouldn't diagnose without the test and didn't want to do the test. I got beta blockers though so I didn't bother to fight them on getting the official diagnosis because I guess it doesn't matter as long as they treat me for it? Just seemed weird they were more willing to give me medicine than a test.
It’s possible maybe insurance didn’t cover it, but covered medication instead?
In my experience, yes, my doctor refused testing
I always ask people to name and shame - so please name and celebrate! We need to know the Dr’s that can help too
It took five years for me to be diagnosed. A lot of doctors are not aware of POTS, nor do many of them know how to treat it. Often times, especially if you’re a woman, you’ll get brushed off, your symptoms minimized, or you’ll be told that it’s all in your head and nothing is wrong with you medically. My blood pressure is was low, and so on paper I looked fine. Unless they can identify another underlying condition, often your bloodwork will look solid and healthy. The tilt table test was so rarely used at the large hospital we have that interns and people were sitting or standing and watching mine as they evaluated my heart rate, etc.
There’s tons of factors, as everyone has mentioned, but as someone who works in a hospital, I feel like it’s mostly lack of knowledge. Almost every coworker I’ve spoken to about pots has either never heard of it or has only heard it mentioned without any understanding of what it truly is. For me I was lucky because the first cardiologist happened to know what pots was and happened to know of a doctor board certified in autonomic disorders. But not everyone is lucky enough to have professionals in their area with that kind of knowledge and/or certifications. Also, on my unit I’ve only ever seen 2 patients who have had pots out of the thousands we take care of. Which could be due to a lot of things like the rarity of the disorder and people who have it but are undiagnosed
The other reason you may have been diagnosed immediately is because of how young you are. POTS sometimes manifests in growing adolescents, for example if you got a lot taller over a short amount of time. I was told that if you get it while young, there’s a good chance you’ll eventually outgrow it and you’ll get better. However, if you get it when you’re older chances are it’s more permanent, especially if the symptoms stay for a long period of time.
I’ve had POTS since I was 11 and after 8 years of testing was dxed at 19. I saw more docs than I can count and did extensive testing. In that time other diagnoses I was given by incompetent doctors were: - your head is too far away from your heart that’s why you faint! (I was 5”2 at the time) - you have teenage girl syndrome who faints (a LOT of docs said this one!!) Being young does not make the dx process easier by any means. OP is very very lucky to be an outlier and to have been sent to an amazing cardiologist but generally in my own experience and those where I live and others who are in POTS groups with me is not the norm. I was told I’d age out of POTS by the time I’m 25. At 21 a decade in, still going strong…
Because most think it’s fake. You just got lucky.
I'm diagnosed with hEDS. Dr. suspected OH/POTS and sent me for a tilt table test Passed out within 5 sec of upright Cardiologist ruled inconclusive. Yes, it's hard to get a diagnosis sometimes because some Drs simply refuse to give the diagnosis. Thankfully my rheumatologist said f that, you have pots
I had to beg for a heart monitor. Then I had to beg for the results, three months later. My doctor is a man, and he said “the times you pressed the button on the heart monitor actually corresponds to times when you had a higher heart rate.” Basically admitting that he didn’t believe me until he had proof lol. Then he said he’d heard of POTS, but it’s rare and I am probably dehydrated or my blood pressure meds need to be adjusted, as if I didn’t think of those things a year and a half ago. All these symptoms started 18 months ago after I had part of my colon removed from diverticulitis. He recommended me for the surgery lol. I don’t know what else to do anymore. You are blessed to have found help.
Part of it is also just resources. I live in one of the cities with some of the best in the world medical research facilities and lots of shiny equipment. But, that also means people are flying in to get medical care because it doesn’t exist where they are. My cardiologist appt took 9 months and that was fast for her. The tilt table—which they have several of in the city—is scheduled for November because they’re just booked up out the nose. It’s kinda like how an MRI can take a few weeks. It’s an injury, but getting into the schedule is hard. Seeing the dentist even takes a few months if you’re a new patient. Granted, this is in the USA, where healthcare is like a big joke. So maybe it’s not so bad in other countries?
It took me fully losing consciousness and passing out (at work), losing 70 lbs because of nausea and vomiting, an EGD, gastric emptying study, heart echo, 14 days of heart rhythm monitoring, 2 head CTs, a chest CT, seeing a gastroenterologist, a cardiologist, neurologist, PCP, 5 ER visits, before an ER doc finally looked at me and said “have you ever heard of POTS?”…that was in November and I still don’t have an official diagnosis, haven’t had a tilt table test, the cardiologist did at least offer to start trying different medication treatments after the neurologist agreed with the ER doc is probably POTS or even another form for dysautonomia. The cardiologist also said a TTT wasn’t necessary because “we already know that you’re having the symptoms, all a TTT is going to do is tell us the same thing we know and make you feel terrible by exacerbating your symptoms that you’re already having on a daily basis.” With that being said, the 3 different medications he has tried for me since February have made me feel worse. I would still like to have the official diagnosis, mainly so I don’t feel crazy.
Oh this was after being told by the PCP and Cardiologist prior to that when I brought up POTS, “no I don’t think that’s what you have at all” 🤦♀️🤦♀️🤦♀️
You’re lucky 😂 I had my first pots episode at 8 and didn’t get diagnosed until I was 28. I spent years passing out and getting alll of the tests done until some random doctor at urgent care was like maybe you have pots? I think it really just depends on the doctor you see.
Because I’ve lived with it my entire like and didn’t know it wasn’t normal to black out every time you stood up. Or any other variety of symptoms. I was active and in shape. When my symptoms got a lot worse they said “stress” etc. they weren’t listening to me. They said “you just have IST” even though my symptoms were beyond that now. I feel lucky it only took 2 years and some medical trauma. I despise going to the doctor now.
Wow, I had no idea. I got admitted to the ICU during my worst episode and after all the tests ruled everything else out they diagnosed me with POTS, I had no idea it was so difficult!
Unfortunately a tilt table test is not basic testing. And most doctors can’t or won’t diagnose it without that quantifiable evidence
It's won't, not can't. https://www.cmaj.ca/content/194/10/e378#sec-10
Untrue as a medical student the word can’t is properly placed due to legal reason. So can’t is properly said. If I’m blind by law I can’t plain and simple
Only 30% of POTS pass out. If you don't pass out, they don't take you as serious.
I was diagnosed pretty quickly based on my reported symptoms, but I was also told that the POTS would resolve itself in about a year. That was 4 years ago and I still have symptomatic POTS.
You just got lucky, most cardiologists aren’t well educated on POTS. I saw 8 before I finally had one admit he didn’t know how to help me and referred me to the electrophysiologist who immediately diagnosed me. They all said I couldn’t have POTS for x nonsensical reason, that it entirely didn’t exist, that they didn’t “treat that kind of thing,” or hadn’t studied POTS. Even the cardiologist who did my tilt table test asked me, 17 at the time, what POTS was and what the diagnosis criteria was, then googled it in front of me to confirm before starting the test. I fainted so he diagnosed me with vasovagal syncope instead (he clearly had no understanding of the condition)
i’ve been waiting for a diagnosis for almost 4 years now. first year i was told it was “depression and anxiety” keep in mind i was fainting 3/4 times a day and could barely get out of bed. after threatening they referred me to a ent hospital. spent almost 2 years with the ent, they first thought it was vertigo (i also told them multiple times that i suspected pots but because i didn’t have a that much of a high hr they said it a low possibility ) and could only get a appointment every 6 months and most times they’d push it to 8/9. within those 2 years i was referred to a cardiologist but thanks to certain hospitals they didn’t book me in for a whole 2 years. was also referred for a brain scan at the end of those 2 years, which showed i had a arachnoid cyst but was told it shouldn’t cause this many problems and was told they suspected autonomic dysfunction. fast forward to the end of 2023 i was told id be booked in for a spinal tap (no idea how that correlates to pots) which got pushed back 9 months. then ended up seeing my new gp doctor (thank god for her) told her about my heart rate being at a dangerous level that started a year ago and that it gets really bad when i stand up and would go up to 200. she got me an appointment with a cardiologist within a week for a ecg,echo and holter monitor. she then told me “you most likely have pots but it’s going to be hard to diagnose because there isn’t a set test for it” but she said when i get the holter monitor i’ll get a definite answer which is by the end of july. she also referred me to get a tilt test but that may take some time. so yes it’s honestly so difficult even with our health care system as most of my appointments got pushed back month because i wasn’t “urgent” but truly it was because they were ordering unnecessary tests. i’m thankful for the doctors and nurses, but due to the healthcare system so many of us fall through the cracks because of us being less “urgent”. also another thing is pots research only started in the 80s which makes it recent meaning there is barely any research done towards diagnosing it and finding a cure of some sort. and medicine is all about money and they have said research into pots is unnecessary and a waste of money because not many people have it.
It’s been 5 years of being chronically ill and I still don’t have a diagnosis despite me having every single symptom of POTS including blacking out. I’ve had doctors tell me my symptoms aren’t real, it’s a “woman thing”, to get pregnant for the symptoms to go away, lose weight, and that I’m “just depressed.” Even a cardiologist just shrugged at my 130 resting heart rate and told me to find a way to stop being in chronic pain. I used to be a weightlifter 5 days a week and have a full life. I’m lucky I have access to healthcare period but I have sadly only met 2 doctors in 5 years that believe something is actually wrong. It’s the medical system.
Also doctors need to rule out a ton of stuff depending on what symptoms are being presented. POTS has an over lap of symptoms with other diseases so diagnosing it can be hard. This can also mean that a lot of the people on here think they have pots but have something else entirely. POTS has become a weird trend online and it’s annoying that people want it. Doctors are just doing their job by being thorough and testing takes time. I see a lot of people complain about being ignored or judged but most of the time it doesn’t even sound like the doctor is doing anything. They’re just not giving them the diagnosis they want and that isn’t their job.
Exactly. POTS can often be the diagnosis of ruling everything else out. A part of why it takes so long is that so many things can cause our exact (or fairly close to it) laundry list of symptoms. Some of the things I had to rule out were: unstable angina, enlarged heart, hyperthyroidism, vasovagal syncope, and more
When I first started displaying symptoms and went to the cardiologist his first thought was POTS but he even told me that he would have to rule everything else out first. It was awhile before we could actually confirm a POTS diagnosis but he was still able to try and treat my symptoms in the mean time. It makes me wonder if people don’t understand how to speak to doctors about medication and treatment options. I’m not saying there aren’t bad doctors out there but I think it’s more of a communication issue. And the only issues I’ve had were with neurologists making me retake preventative medication after I told them it didn’t work for me.
>I’m not saying there aren’t bad doctors out there but I think it’s more of a communication issue It definitely can be. It took me so long to get a diagnosis because of both: doctors dismissing me outright and a breakdown of communication
What have you found to be the best way to communicate? For me, I go in with an intent to discuss certain issues. I’ll write them down and bring tracking data for my symptoms or just wear a fitness tracker. Then I make it a point to say these are the issues I’m having .. this is what I’ve done for it … this is how it’s been presenting .. what can we do about it? How can we manage it?
Most of the time that there's a communication issue it's because I brought up a legitimate issue that I'm having, they dismissed it or decided to test for something completely different without explanation and I didn't catch it or stand up for myself. I've learned to recap everything that's been said including what I came to them for and how they suggested I address it, and to just better stand up to people. I realized I'm much more comfortable speaking my mind when someone I trust is present, so I did have people come to my appointments with me for a while until I felt comfortable enough to speak up even when alone
For me, the issue was that my PCP wanted me to get tested, but I had to be referred to a cardiologist to get a TTT done and none of them believed me or listened to me. I only got tested because my PCP is able to order them herself now 🙃 (did not actually end up having POTS, but I did end up having vasovagal syncope)
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Sigh. Are you in the US?
my first cardiologist only tested me because i asked, and when i asked, he told me "fatigue isn't a symptom of POTS" 🙃
My neurologist had to test me 5 different times before my symptoms finally showed up.
the medical field is unfortunately full of negligence, especially when it comes to illnesses like ours
dismissive doctors, in my case. I started having symptoms in middle school. I mentioned this to my pediatrician who told me it was normal and not a big deal and I should just get up slower. after I fainted for the first time, I saw a cardiologist who told me it was likely an adolescent thing and I would grow out of it but recommended the standard treatments anyways (increase water and salt intake, wear compression socks as needed, etc). eight years later I went to a new doctor for an unrelated issue and mentioned my symptoms while explaining my medical history. she was horrified and was like "nah we're sending you back to the cardiologist, that's not normal." said cardiologist was an asshole and told me it was likely just my ADHD meds. when I told him that my symptoms started several years before I started those meds, he pivoted to "you're just dehydrated".....my dad is an endurance athlete and drilled the importance of hydration into me very early. I have been carrying a water bottle 24/7 since I was 10 and I refill that sucker multiple times a day. I am good about taking electrolytes as well. I knew that wasn't it but I was so frustrated and upset that I didn't say anything. (sidenote: bless my dad who encouraged me not to give up. he's had his own share of cardiologist visits (though in his case because he has a very low resting heart rate) and told me some specialists are just asses and won't listen to you. but there are good ones out there, you just need to find them.) I moved states a year later and asked my new doctor (lovely man, bless him) to refer me for autonomic testing. ten years after developing symptoms I finally got diagnosed. I was able to do it but I had to advocate for it and get specific and say "this is the test I want and here is why." my current doctor (the one who referred me) originally didn't think I had POTS because my heart rate didn't jump particularly high when we did a poor man's tilt test but he, thankfully, saw the results of the official testing and realized he was wrong and is now very supportive of me getting the treatment I need to manage my symptoms
Honestly it depends what doctor you have and if they are willing to explore that avenue thankfully mine sent me to a cardiologist who specializes in it 😅 I’m still undoing diagnosis and should hopefully have results soon but I was basically told I have about an 80% percent chance of having it because I’m not only hyper mobile but I can’t regulate anything. I’m on the lover end but I’m pretty sure it’s getting worse because I’ve started fainting spells when I move too fast. I use iHealth to track my blood pressure and blood ox and that data gets sent to my cardiologist for him to review. It is very hard to get diagnosed by from my understanding older doctors but the new med students hitting the work force seem to be able to identify it quickly. Especially if you’re on the high end. Unfortunately I’ve likely had it since I was very very little. My doctors have all been older and I just recently started going to a younger doctor and she sent me in for 3 blood tests and then to a rheumatologist who then sent me to a cardiologist but it’s only been 4 months since this whole situation began so it’s different for everyone.
I think a big thing that is happening right now for people is they end up with doctors who are not up to date on medical information post covid. POTS used to be very rare. So as many people have said it often is getting misdiagnosed or ignored by medical professionals because POTS and other dysautonomic disorders weren’t something they were seeing frequently with patients that have some similar symptoms to dysautonomia. I have read that since covid, cardiologists, electrophysiologists & neurologists are seeing patients with dysautonomia multiple times a week whereas it used to be maybe 1 patient a week or sometimes even 1 a month. On top of all of that, POTS is more prevalent in women and as with most things that affect more women than men, there’s a lot of gaslighting. 🤷🏻♀️ I had a very diligent primary care doctor that gave me any referrals I needed but it still took me over 3 years to figure out what was wrong with me and get a diagnosis. For a long time all I knew was that after I had covid in 2020, something was wrong.
Question mark on the "POTS used to be very rare". More like diagnosed POTS used to be very rare. You can find a lot of people (including me) who had probable POTS as far back as they can remember but only found out it was a specific medical thing due to the recent news. Honestly even *I* thought I was just lazy because I had such a strong preference for sitting over standing still and I'm OK if I'm moving so it wasn't that obvious.
You’re absolutely right. It’s a very under diagnosed condition.
What’s stopping them? Ignorance, arrogance, unwillingness to look for something “unusual”. Idk. But it took until my 40s for diagnosis.
My cardiologist didn’t diagnose it… And it’s so obvious it’s what I have. Each morning on the holter my heart rate went from 60 to 130 just after standing up. They probably don’t diagnose it because POTS is a symptom, not a disease.
I was also so very lucky to be told on my first cardiology appointment - “This sounds like something called POTS”. Also I’m diagnosed with severe anxiety, so I thought I might get brushed off. I think something that ended up helping me is that I was already on beta blockers for anxiety. They saw I was having these reactions while on them, and were concerned. But I’ve read horror stories on here and feel very thankful. I live in a major metropolitan area and love my doctor.
My PCP has been very willing to refer me to a specialist for the testing since I check all the boxes. My problem is that the nearest doctor who can test me is 3 hours away. That's a whole day I'd have to take off work. And I even live in a large city with a large college of medicine, and I have great insurance. Lots of hoops to jump through to get a formal diagnosis, when I really don't know how much a formal diagnosis "does." Can't get ADA accommodations, there's no meds to treat it....so I feel stuck.
For me, even though I'm in a big city, it's been impossible to find someone who has a tilt table to do a test.
You don't need a formal tilt table test, just basic orthostatic testing, monitoring HR and BP https://www.cmaj.ca/content/194/10/e378#sec-10
Idk i havs a nice cardiologist i saw years ago a couple times. Went back to him to ask about pots and i left with the diagnosis and a ton of literature
As a women, my doctor loves to tell me it my anxiety and its just because Im a young women, or my favorite, its because of your period. NO ONE LISTENS. I am in pain, tired, lethargic, and sick everyday and the one person I should be trusting with my health does not take me seriously. They won't run tests, but when they do and it comes back abnormal, they just tell me I'm anxious. I'm tired and exausted, all I want is a doctor to listen to me.
I don’t understand why so many patients with suspected POTS are being told they need a tilt table test. That is typically only necessary if they are experiencing syncope or they have been diagnosed with POTS and treatments are having no impact. With so many more POTS patients than there were pre-covid you would think we would be managing that a little tighter. But no. The last person in my area trying to get diagnosed was told she could get scheduled for a TTT in 6 months (3 hour drive is closest option) and they won’t treat her before then. She has never experienced syncope. Sooooooo yeah i don’t get it.
Yep. My aunt actually had her TTT done today and passed out. They said she passed the TTT even though her HR went over 150. She's demanding a 2nd opinion and I informed her about POTS, which, given the FAILED TTT and her symptoms, I'm 100% positive she's got it.
There’s those who don’t believe and those who find the test taking way too much time and reducing the number of patients they could see in a day
Got a TTT. Heartrate difference was 25bpm in the first 10min, so 'negative'. BP wasn't measured at the moment I fainted so also 'negative' for OH. So yeah, even if you can convince a cardio to do a TTT, they will not diagnose they don't want to. Another cardio said "It's probably a BP drop, but since that wasn't measured it's probably psychogenic"
I’ve been passing out for 8 years, have gone to my doctor multiple times about high heart rates (like 190 bpm lol) and she STILL WILL NOT GIVE ME A REFERRAL!!!!! And I need a referral to a cardiologist if I want insurance to cover any of the costs.
I got lucky and got diagnosed on my symptoms alone by a doctor who knew what POTS was and believed it was real. She diagnosed me with POTS, and fibromyalgia and chronic fatigue syndrome at the same time. But I’ve been sick for so damn long.
I e been wondering that as well. As compared to others it didn’t take long for me to get my diagnosis. What took time was all of the tests and specialists needed to rule out other issues
I had a doctor refuse to believe it was a real thing after I received the diagnosis. It also depends on how severe it is. The doctors who did diagnose me think I might have had it for years and it only got worse with Long COVID (ie it wasn’t trigger by LC - just worsened). The same doctor who doesn’t believe it is a real thing has constantly dismissed my earlier visits to him as ‘stress’, ‘anxiety’ and ‘burnout’. My high heart rate was ‘just nerves’ etc.
It took me a very long time for them to even order tests for it. I started experiencing symptoms before the internet was common so I couldn't look it up and ask for testing and none of the specialists I saw were getting it. It took like 15 years to finally get a tilt table lol.
Took me many years to get diagnosed. I got tested for thyroid issues and had blood work done a gazillion times, even got sent to a neurologist, but never a cardiologist. Eventually, I heard about POTS online, spent months researching as much as I could abt it, and eventually scheduled a cardiologist appointment. I didn’t mention at first POTS, just explained my symptoms and medical history and begged the doctor to help me, saying I was tired of running in circles and getting nowhere. She promised she would help me (and she did, this doctor is an angel). After testing for some other things and ruling other things out, I brought up that I thought it might be POTS but that I trusted her, to which she agreed that might be it - eventually she was the first one to diagnose me, later I went to a specialist and got diagnosed a second time. Point of my story: At no point in my years of searching for answers did I ever hear about POTS at all, and even when I was seeing a cardiologist, she didn’t even think about POTS as a possibility until I brought it up. And I’m a very clear cut POTS case - heart rate raises about 60bpm when I stand, I pass out (which isn’t a requirement to have POTS but is what most people think about when they think of POTS), etc etc. I’m basically a poster child, my case is so clear cut - someone just had to be looking for it. For me, I think the main issue is that POTS is just not in people’s minds or is something they consider, plus what some people have said in the comments about some doctors not thinking it’s real.
My doctors convinced me it was anxiety for several years until it got bad enough that I KNEW something was wrong and started harassing my doctors to look into it. (I do have anxiety but as soon as some doctors see that, they immediately blame everything on it)
That is great! My PCP has been amazing and so has the majority of my specialists, but its not universal. My cardiologist left right about the time I had my Tilt Table Test and the rest of the practice would not touch me or my test. I had to threaten to get insurance involved because they paid for it and none of the cardiologist would interpret it. I got a non-POTS POTS diagnosis where the cardiologist basically is like "she reached POTS criteria, but I don't believe in POTS, so I am not going to diagnosis it as pots." Luckily my PCP helped me out with it and I see a legit autonomic specialist this week. Also, about a decade ago I had the worse doctor. Unfortunately, I was internalizing a lot of abuse at that time so when she came along I took it from her. She would ignore my complaints and refuse to investigate them. When she did my pap smear she would put in a speculum that was too big and ignore me as I writhed around in pain on the exam table. I came in with joint pain (that I now know is from EDS) and was asked if I injured myself. When I said no she got angry, refused to see me, cancelled the visit and threw me out of the office. I was scared for years to see another doctor.
for me its because in the state i live in there is only one POTS specialist and he's booked clear until somewhere in 2025. and thats after all the other tests and bloodwork i did to make sure it wasnt anything else
It shouldn't take a POTS specialist to diagnose POTS, just like it doesn't take an oncologist to diagnose cancer. A PCP can do it with referrals for the necessary cardiac testing to rule out other possible causes. https://www.cmaj.ca/content/194/10/e378#sec-10
for me, it took 7 years to get mine. i kind of chalked it up to doctor’s assuming my period was the problem and just wanting to put me on birth control without looking into my issues.
Mine insisted it was my adderall despite prrof it was not- I'm a biologist so tested no adderall, no change at all. "Sure it isn't the stimmies? Not even a bit of mary Jane??"
For 27 years I was "too young to have a heart problem" and "skinny girls just faint sometimes".
i also got a lucky diagnosis in high school but the very structure of patient-doctor relationships encourages doctors to regard patients with skepticism. plus lots of them don’t believe in POTS
According to Dysautonomia International it takes an average of 5 years and 11 months for someone to be diagnosed with POTS in the US. https://www.dysautonomiainternational.org/page.php?ID=184#:~:text=The%20average%20diagnostic%20delay%20for,the%20first%20year%20of%20symptoms.
If you're a young female the doctors fob you off by saying it's just heavy periods and teenage tiredness (which isn't really a thing or a diagnosis but ok)
My cardiologist told his staff POTS is all mental and there’s no real test.
Becuase I have “anxiety” listed in my chart from 4 years ago and I’m a young female. I definitely can’t have POTS if I was on Lexapro for two years for anxiety, right? It’s a better idea to re-prescribe that good ole Lexapro (that doesn’t work for my non-anxiety symptoms!) instead of listening to your patient when she tells you this is *not* anxiety and it feels distinctly different from the anxiety she used to have. I’ve gotten the basic testing done to rule out worse conditions, but no doctor has yet to give me a tilt table test, which I have asked for. They just say it’s unnecessary because it’s “definitely just anxiety” 👍🏻👍🏻👍🏻 Sidenote: while I’m not officially diagnosed, I have all the symptoms and several of the comobird conditions. I’ve also done the poor man’s tilt table test multiple times and every time the “results” point to POTS. I can’t afford to see a specialist for now. Also, the treatments and lifestyle modifications that work for POTS work well for me, so all considered I’m pretty comfortable with the likelihood that I have POTS!
It's a lot easier now than it was even just 4 years ago, but there are still tons of doctors out there who refuse to do the testing, or who do it and say the results were normal when they weren't.
Medical misogyny, fatphobia, doctors don't know what POTS is, or if they sorta do know what it is, they invent imaginary criteria to rule it out (like fainting being a requirement, mixing up OH with POTS, assuming deconditioning is the same as merely being sedentary, assuming it's rarer than it is, assuming young patients will grow out of it, etc. We see all this and more here.).
Bc they are so uneducated about it and think it’s a 1 in a million super rare condition so they won’t even test for it. I just got told it was anxiety for years even while the doctors could see my heart rate while changing positions and saw so many symptoms but ignored me
Everything for me started 11 years ago when I was 15. Doctors didn’t know to even consider pots and me being a teenager just assumed I wasn’t drinking enough water. (Also got told I had an ear infection and that was why I was passing out). Overtime, I got slightly “better” because I started subconsciously recognizing my symptoms and adjusting for them but also I was just getting used to them. If you’re in pain long enough, you forget it’s there. It didn’t help that my mother thought I was just being overdramatic, so I assumed that this must be how everyone feels. Also a lot of symptoms I had, I didn’t even recognize as symptoms. Like I didn’t even realize that my Heartrate was beating hard because I was standing, I thought I was just lazy. I didn’t realize the craving for salt was symptom, or the temperature intolerance, or the dizziness. I had explained away each and every symptom and justified them. It was my husband who pushed for me to get help. He insisted that the way I felt was wrong, that I shouldn’t be out of breath all the time, and struggling like I do. I ignored him for a long time, for a really long time. The pots led to me getting deconditioned and when Covid hit the world (I’ve never had it) it got so much worse because I stopped leaving my house. My PCOS and sedentary life style led me to gaining *a lot* of weight. When I finally decided to listen to my husband and get help, I was morbidly obese. The conversation turned from “You need more water” to “You need to lose weight”. “I won’t give you meds unless you lose weight”. When I managed to lose 15lbs and saw the doctor again. He didn’t ask me if it made a difference, he came into the room and went. “You’ve done such a good job. See now don’t you feel *so* much better!” I was confused, it caught me so off guard. I simply said “no” because I didn’t. The weight loss had made absolutely no change. His response was “Really?! Not at all?” He then moved on to tell me to lose more weight and come back. He also really really pushed weight loss surgery. I eventually went to a different cardiologist. He ran a bunch of tests, and couldn’t figure out what was wrong. He was also the one who told me that he thought weight loss surgery would be a bad idea, that it might make things worse. Something about my weight stabilizing my blood pressure, I don’t know. But he ran a tilt table and it came back negative but I was also told over and over again that the tests were extremely unreliable. (I’m not sure why that test didn’t work for me. It was so weird.) However, I’m not paying for another one and He can’t diagnose me without a positive one. So I’m in limbo. Being given meds like I have pots, doing the water, salt and socks but nothing on my chart.
Losing weight can def make it worse. Worst part for me was that gaining most of the weight back didn't make it better, although at least losing weight the second time didn't make it more worse. I don't have obvious loose skin or anything but I do wonder if there's some amount of permanent stretching making it harder for my body to keep blood up in my head.
Yeah, It makes sense tbh. I am planning on going to get weight loss surgery but I’m aware I could get worse and likely will. But at this point my weight is just making things 30x harder. Also it’s hurting my mental health badly. (There is a part of me that hopes that when the weight is gone I’ll be taken seriously but I’m sure they will come up with a new excuse for the issues that don’t make sense)
NGL, I do get treated more seriously when I'm thinner. But it also makes me look slightly older so I look more like someone who's paying for things (aka customer, not just patient), and I'm in management now (...involuntarily...) so I'm used to people doing what I tell them. It's maybe worthwhile to at least bring it up and see if there are any adjustments to the surgery taking POTS into consideration. (I have no idea if there is anything they would do differently, but maybe something with supporting smaller blood vessels? Idk.)
yep, & medical gaslighting. they often just attribute it to solely anxiety.
We’re very lucky compared to most other POTS patients. Good doctors are rare. Good doctors educated on POTS are even rarer. Doctors refuse to believe us due to the fact that POTS is not a widely known and/or acknowledged condition in the medical community, though it absolutely should be. It’s usually labeled as anxiety, especially in girls. My cardiologist also immediately threw everything he had at me, and even called colleagues into the room to watch the monitor because he found it interesting (he’s a Harvard professor too, though). He checked for heart failure and everything. He even gave me an MRI to be sure he didn’t miss anything. I had a full cardiology team and a diagnosis within 2 visits. He didn’t hesitate with starting me on medication, and he says that he won’t hesitate to use ibutilide if he has to, either. He means business.
Because half of the doctors around don’t know what POTS is or how to treat it. My cardiologist only sent me for testing because I openly said I need to be tested for this otherwise i want you to document you’re refusing to test me despite by consistent symptoms. I found out about POTS through my own research and treat myself that way too since the only advice I ever get is to drink water and wear compressions socks
I think it’s because most doctors are not trained in or educated about pots. There are a lot more cases now post-COVID and vaccines, so hopefully that is changing. Currently though I think most don’t know enough to pick it up in their patients. The ones that know a tiny bit, but not a lot can be even more dangerous because they may have misconceptions and are not properly trained. Unfortunately from what I’ve seen, most MDs seem to think that anyone whose symptoms don’t fit neatly into a diagnosis they know well most be misreporting or experiencing something psychosomatic. In reality, the field of medicine is constantly evolving. We need to change our system!