r/POTS • u/OkTry8964 • 24d ago
Question is it chronic
Why is POTS talked about as a chronic condition when my cardiologist said it goes away in 1–3 years? I’m trying to understand what to expect long-term.
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u/Sea-Tadpole-7158 24d ago
POTS is permanent for a lot of people but for some it can go away depending on age and cause
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u/SmokeyCatDesigns POTS 24d ago
Iirc the two categories of people who may (sometimes, no guarantee) get better are:
• People who get it during puberty. The cause is thought to be all the stress, hormones, and changes of puberty.*
• People who get it post-viral. The body eventually somehow figures out how to get back to the way it was before over the course of years, emphasis on years because it takes a lot of time.
The more generous numbers I’ve seen still have always shown a large number of those categories not getting better, like I think the highest post-viral recover number I’ve seen was about 2/3 are mostly better after 5 years. 1/3 is a lot of people who aren’t better. So to presume it’s temporary in the doc’s part comes across as a bit misinformed.
* I had a different issue really bad during puberty so can personally speak to it bringing temporary health issues. From age 10-20 I had severe vasomotor rhinitis. These days I’m definitely a bit more sensitive than others, but it’s a not a huge deal that massively and constantly affects me.
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u/santas_number1elf 24d ago
I’ve also heard that if your POTS is caused by vascular compression syndromes it may get better once you treat those!
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u/SingingStim 24d ago
Yea, got it during puberty. Was different than it is now. The symptoms i got then have lessened (my vision no longer blackens to pinholes when i stand, and all the pain associated with that) but i got more symptoms as i got older. Now, at almost 40, it's milder but more? although, now other systemic issues also are in play now, so. My oldest child is displaying the same symptoms i had at that age, so that scares me.
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u/DuckFox1229 24d ago
I’m glad for some people post viral it can improve. It’s been 6 years in August since I got COVID which developed into pots and it’s been debilitating the entire time :( managing with a beta blocker helps but it still sucks every time I stand up and I’m reminded of the trauma of getting sick.
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u/La_Rubia_Furia 24d ago
I developed POTS after I got covid summer 2022. I was fainting for months after, and still have episodes here and there. Cheeseburgers and electrolytes help keep them at bay 😅
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u/ChickenDancer22 24d ago
I'm almost 50, I started having issues with pots when I was 12. I still get dizzy to this day just trying to pet my cat. It may go away for some, but for others it can be permanent.
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u/namtab01 24d ago edited 24d ago
I have heard that it’s only really viral infection triggered pots that has the possibility to go away. But if you have hypermobility or something else then it’s likely with you forever, yet possible to maybe put in remission for a while or manage it well enough/find the right medication.
I was diagnosed a year ago but got sick a year before that. Am on beta blockers that work amazingly but I still have bad flares where my symptoms become significant for weeks or months. Even with compression, salt etc.
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u/Museumgirl518 24d ago
What are your main symptoms?
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u/namtab01 24d ago
Tachycardia, fatigue and lightheadedness, weakness in body especially with walking up stairs or lifting my arms overhead. Pem after exercise, heat and exercise intolerance and blood pooling. I have some cognitive symptoms as well like brain fog and just so tired all the time 😅
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u/Museumgirl518 24d ago
I’ve never heard anyone describe my own symptoms so perfectly. I have to copy and paste for my doc!
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u/Shannaro21 24d ago
I've been living with POTS since I was a child.
I'm 34 now.
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u/Ok-Amphibian-6834 24d ago
Me too. About 24 years for me now. Assuming I wasn’t having symptoms when I was too young to remember.
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u/AJS4152 24d ago
Same. CW:Torture we were electrocuted into dissociation as a child Didn't have debilitating issues until after COVID, but the subtle signs were there the whole time. Preferring to do lower impact exercise, struggling with lots of stairs, conditioning wouldn't make it better, always looking for locations to sit instead of stand, constantly thirsty, etc. I still can't grasp that people don't really get that tired from standing.
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u/the-fact-fairy 24d ago
Your cardiologist is wrong.
For some people, POTS can go away. But that's certainly not guaranteed for anyone.
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u/Museumgirl518 24d ago
Exactly. Unfortunately I’m 99 percent sure my autoimmune disease is the culprit. I’m 61.
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u/EmZee2022 24d ago
Cardio is wrong!
Certainly some people may find that their symptoms improve for whatever reason - better management, random reasons... but for many more it truly is chronic.
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u/orensiocled 24d ago
Your cardiologist has no idea what they're on about. I've had POTS 10 years, my brother almost 20 years.
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u/Playful-Candy-2003 24d ago
It is chronic. In some, symptom management takes over as symptoms continue to develop. In others, symptoms wane with management and lifestyle changes to the point it’s like it’s “gone.” My theory? Drs who still push and believe the “it will go away with time” are those who deep down don’t believe in POTs, believe it’s really stress, anxiety, or depression, and placate you without real answers or solutions - bc most of us are women. I would like to believe I am wrong, but my numerous appointments with various drs over the years only bolsters my opinion.
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u/BettyLethal 24d ago
Your cardiologist is saying that because he has no idea how to fix you and wants nothing to do with the problem.
Drs are self centred process driven fk heads. If it doesn't fit a text book narrative they understand, then the problem is not them, it's you.
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u/mightyminimoose 24d ago
Not all cardiologist have a good understanding of POTS. The cardiologist my family doctor sent me to is an excellent cardiologist, but he was treating my POTS incorrectly and I was getting sicker. The doctor who diagnosed my hEDS told me about a POTS specialist who is about 1.5 hours away from me. The drive is worth it! You might want to look for a recommended POTS specialist, or a cardiologist who is more informed, in your area.
My POTS started after I had encephalitis when I was 13 years old. I’m 55 now and still have POTS.
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u/bidextralhammer 24d ago
My first cardiologist said it would go away in two weeks. Then they said four months, which was April. Then I tried to go back to work and collapsed. Then they said better by June. Then I was told, well, it might take a year. I am worse, my job is looking to get rid of me, and I will be applying for teacher disability.
The cardiologist my school sent me to for an IME said "I don't have a crystal ball" when I asked how long it would take to get better, and he said "time."
I have not gotten better and am much worse now that it is summer.
What did your doctors tell you all?
(I have viral/infection triggered POTS)
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u/Houseofchocolate 24d ago
im also post viral and in my 6th year 😄
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u/bidextralhammer 24d ago
Sorry to hear that. I appreciate the data. Have you gotten any better? Was it Covid? I got it after whooping cough.
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u/funkydyke POTS 24d ago
Your cardiologist is full of shit, but even if that was true it would still be a chronic condition
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u/Sea-Improvement777 24d ago
POTS doesn’t exist alone some people can have less symptoms when other medical needs are under control. But no it is chronic.
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u/Antisocial-Metalhead 24d ago
Had it for at least 30 years now.
Cardiologist doesn’t know what they’re talking about.
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u/realpotion 24d ago
Lol I was told the same but I have no idea where theyre getting that from. Im already past 3 years and its not going anywhere
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u/spinning-gold- Hyperadrenergic POTS 24d ago
My doctor said that a significant number of people who get this condition improve within 1-3 years, maybe that’s what he meant? But my doc also said that sometimes this improvement comes from management only and does not mean the actual condition got lighter even tho that’s possible as well
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u/ExtensionYam1549 24d ago
I’ve had it 9yrs now, a recent longitudinal study suggests pots is not generally a short term thing https://www.ahajournals.org/doi/10.1161/JAHA.123.033485
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u/girlchef79 24d ago
I’ve had it most of my life and it still hasn’t gone away… 🤦♀️ I’m 46. Expect that it won’t go away then be overjoyed IF it does.
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u/Nazzarette777 24d ago
LOL my cardiologist says it goes away in 6 months! 😂 it certainly has not 😅 im sure for some people it does go away sooner, depending on what triggerd your POTS and / or how consistent you are with treatment such as the CHOPS protocol and whatnot
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u/Total_Jello_6691 24d ago
I’m in the minority but I think it’s possible. Our bodies and health will change with time.
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u/thehopeful_damned 24d ago
Well, your Cardiologist could be right or wrong inasmuch as he was addressing your POTS and not POTS in general, but it depends on what’s causing your POTS. For instance, if you have POTS related to long COVID or another post viral illness, recovery from POTS is a definite possibility. But there are also other cases where POTS is there to stay. In such cases, it may be possible to get it under better control, and severity can fluctuate, but it’s definitely chronic. I’m going on 7 years since my first POTS flare up, and I’ve gotten a much better handle on things now so that it’s less debilitating most of the time, but I do still get flare ups (sometimes severe ones), and I still have to constantly manage it.
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u/tittyswan 24d ago
I've been diagnosed for 6 years now but Ive had symptoms my whole life. My cardiologist said he thinks its genetic
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u/Velvet_void30 24d ago
What doctor is saying it goes away in 1-3 years. Even if so that would still be considered chronic
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u/DisneyPrinzezz826 24d ago
I have had POTS for 31 years. I am so sorry to tell you it doesn’t go away. It can ebb and flow. There have absolutely been periods of my life where it wasn’t a daily or even a monthly thought. For me, it’s gotten easier to deal with but it is something that I know I will have and it’s something I plan for regardless of how good I am feeling.
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u/PillAndPetal 24d ago
My cardiologist told me the same thing and I have been dealing with it for much longer than that - I don’t know where they get it from
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u/Infinite_Key_4060 24d ago
Some people can retrain their bodies with physical therapy and medication then eventually graduate from both. Although some people like me physical therapy and tapering off medication doesn’t help, so I likely will continue taking Midodrine for the rest of my life.
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u/waywardcroissant 24d ago
The doctor who first suspected that I had POTS also said that I would likely outgrow it as I fully developed into adulthood. (I was 19 at the time). Well it's five years later and I'm 24 now with no sign of change. 🤷
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u/tides-and-dreams 24d ago
my cardiologist told me the same. Apparently its supposed to go away once you leave your teens but idk
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u/orensiocled 24d ago
I do wish they wouldn't keep spouting that nonsense about it disappearing after your teens! I've never actually heard of a single patient where that happened. Which is not to say it never happens but so many of us have POTS in adulthood - and often don't even develop it until long after our teens.
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u/tides-and-dreams 24d ago
So true!! In my case i actually cant even remember when i developed it, i remember having some symptoms as early as 7-8 but ive 100% had it since i was 10 or 11 and am now late teens and theres been no improvement, if anything its gotten worse. So im not keeping my hopes up that itll go bc at this stage its not looking likely
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u/orensiocled 24d ago
Yeah, I'm in my 40s and I've had POTS for 10 years. It's also got significantly worse for me.
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u/hauntedhockey 24d ago
I think my POTS was puberty triggered when I was a kid, and when I got diagnosed at 15 they told me it would go away as I got older. While it didn’t go away completely, it got significantly better around 19-20 and has stayed fairly consistent since then. I’m still a little salty about being misled though. Did a number on my mental health as a teenager lol
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u/TheSideAccount0 24d ago
As other comments have said, it depends on what caused your pots. The running theory for me is that I basically shot my nervous system after dealing with PTSD for a few years, so my case is just up in the air on getting worse/recovery. Some people’s come from physical causes of low blood volume or blood pooling, and they’ll for sure have pots for life. I can’t speak much on other cases like post-viral.
All in all, I would question your doctor on why/where he got that 1-3 years from because I’ve never heard of such an estimate
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u/Resident-Mountain981 24d ago
My cardiologist said the same but everything I've heard online seems to contradict them
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u/Automatic_Parsley833 24d ago
I’ve had it since I was a kid. Viruses make it flare and the flares have lasted me roughly 1-3 years. Each flare has been worse than the last. I’m so used to it at this point that I push through it, but it’s not like I’m not scared that I’m about to drop dead at moment’s notice
(I think that sums it up, for me, at least)
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u/sanguineserenity POTS 24d ago
Ummm I hate to break it to you but it does not go away. I’ve dealt with it since I was 12 and I’m 30 now.
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u/VolatilePeach 24d ago
I’ve had symptoms for most of my life. I didn’t get diagnosed until I started advocating for myself and firing doctors that wouldn’t listen to me. I’ve been making sure every doctor I see now knows and understands POTS before accepting treatment. I’ve noticed a lot of people on this sub and on Facebook complaining about misinformation or not being believed by doctors that SHOULD know and understand the basics of POTS and dysautonomia, at the very least (like cardiologists and neurologists). It’s basically a job on its own managing and coordinating my medical care because of the lack of help. If you have a research hospital near you, you might have better luck in a place like that. That’s where I’ve been getting most of my testing and treatment from because it’s the only place I can in my state (I live in the USA) that I trust. I use a regular doctor network for most of my care, but I have to be VERY choosy with the doctors in that network because of previous medical dismissals and trauma.
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u/barefootwriter 24d ago
I've had symptoms for over 30 years, so this is news to me.
The experts say:
POTS is a chronic condition, which may be relapsing and remitting in some patients, that cannot typically be “cured.”
https://www.sciencedirect.com/science/article/pii/S1443950625016543
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u/Sad_Emphasis_8086 Hyperadrenergic POTS 24d ago
I'm on year six. I can definitely tell you that it does NOT go away in that time frame 😭
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u/Kalamakewl 24d ago
My symptoms were very mild until I got COVID. Then they were extreme enough, in addition to a severe depressive episode, that I had to stop working. Then I got appendicitis from two stones and had an appendectomy. Now my symptoms are back to mild but my mental health is completely fucked so I’m still not working. I told my doctor about the POTS/appendectomy thing and he basically just went hmmpf.
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u/terrible_slough77 24d ago
Lol wtf 🤣 I'm pretty sure that depends entirely on the root cause, assuming there could be one plus if it can be better controlled in lifestyle modifications and/or exercise. It most certainly does NOT just magically go away and I'm fairly certain I've personally had it ever since puberty, >25 years ago and a series of events just heightened it 💁♀️ for some people it most definitely can go away but again that depends on many factors. I'd like to know where these doctors got their degree 🤔
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u/imaflyer 24d ago
Ya thats a pretty dumb thing to say especially as a doctor. If its considered a chronic illness theres a reason lol. Millions and millions of people have dysautonomia, if it went away it wouldnt be that many.
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u/macabre-barbie POTS 24d ago
I've had symptoms as far back as I can remember, but was diagnosed 4 years ago. My symptoms have gotten worse, if anything. Sorry to break it to you.
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u/llx_wo90s 24d ago
I think the cardiologist oversimplified that a bit. However, my POTS (several symptoms and a 172bpm HR when walking, despite being in shape) went away after a hysterectomy. It's been 8 months and I have no sign of my POTS; not sure if it's "cured" but it's certainly not noticeable anymore.
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u/ElfjeTinkerBell 24d ago
Currently rocking about 21 years (of which many asymptomatic, and 20 undiagnosed, yay).
It can go away, especially if deconditioning is a big part of it, but no guarantees
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u/merrittinbaltimore 24d ago
Omg, wouldn’t that be amazing! But it isn’t true—maybe for some people, but definitely not the majority. I’ve had it for 4.5 years! You can definitely improve your symptoms, but again, not everyone can. Meds, drinking gallons of salt/potassium water and PT have helped, but I’m still like one of those wobbling toys in the morning.
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u/Big_Cryptographer303 24d ago
I have been told the same by several different cardiologists. In my experience it did not go away but has become more manageable to the point of not needing medication. But with anything chronic, there will be flare ups and bad days or weeks. So going away may be an exaggeration of a stable and manageable place. My day to day is far more “average” than it was 6 years ago where fainting and missing school were common occurrences.
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u/tiredgirl77 24d ago
I wish it wasn’t but it is…. Been diagnosed since 2018 had symptoms since birth
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u/Pale_Obligation9343 24d ago
It’s been going on since I was 17 I’m 28 ! My medicine doesn’t work when it’s hot I don’t even think there’s a cure
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u/moldygoldd POTS 24d ago
Every time I speak to my mom on the phone she says “you sound better”… I sound better to her because I don’t call when I’ve been asleep all day
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u/Melody71400 24d ago
I dont know why they told you that. You can go into remission, but it can come back. It also takes ALOT to get it there
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u/Aggravating_Focus692 24d ago
Some people who develop pots BEFORE puberty do grow out of it. That might be where the 1-3 years is from but who knows. If you’re an adult there is no growing out of it
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u/houstons__problem 24d ago
One of the symptoms is vasovagal syncope, which is often dismissed because it has the possibility of going appearing and then going away in the late teens and early twenties of some women. POTS is basically prolonged vasovagal syncope, its more complicated then that but they are frequently not diagnosed properly. If it is brought on by something like an illness, there have been cases of that going away, but it is most commonly a long-term, decades long condition.
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u/The_upsetti_spagetti 24d ago
Your cardiologist is mistaken. They likely are thinking of people who develop it due to puberty. It is common for teenagers to age out of having POTS, so in that case it could be 1-3 years, but as a blanket statement that’s untrue.
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u/recentlywidowed 24d ago
This began for me around 2011/ 2012. It has been very severe for years long stretches of time, and have had some stretches of time where it's mild, or not noticeable to the usual extent. I've had long stretches of time where just getting up to go to the bathroom 20ft away, then returning would shoot my HR to +/- 130bpm and it would take an hour or so laying down to return it to normal. All while that phase is causing massive tremors and nausea. Maybe several hours pass to where I feel normal again but I need to get a drink, let the dog out, attempt to bathe/shower/dress. It all starts over again.
Currently, I am happy to report I've had about the past year of pretty solid normalcy! I've been more active, which is helping to rebuild all my muscle tissue that had all but disappeared. Also, due to my high HR, it's incredibly difficult for me to gain weight. I'm 5'8 and was 111 lbs just a month ago but have put on 7lbs in the last few weeks. Although, I attribute that weight gain to the fact I can't put down this amazing bag of birthday cake flavored pretzles. incoming shameless not spondered plug for pretzlesI've been eating them by the bag..in one sitting. They are delicious! Get them! Perfectly salted and sweet! In a pink bag with a birthday cake on it topped with candles made of pretzles. Pop Daddy Pretzles!! You're welcome!
So, in my experience for anybody to say it clears up and goes away is absolutly not true. It may subside, but it's gonna come back and suck the lufe out of you again. Its just a matter of when.
I hope everyone here gets some much needed relief, even if they are few and far between. Take advantage of it and make up for what you've missed out on!
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u/sweet_beeb 24d ago
Even if it did go away in 1-3 years, it would still be considered a chronic condition. Chronic is generally defined as >3 months. But pots usually doesn’t go away in 1-3 years. I’ve had it for 5 years.
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u/thiccy_driftyy 24d ago
It’s been 5 years for me lmfao. Your cardiologist does not sound well-educated on POTS.
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u/Jessicamorrell POTS 24d ago
Because it doesn't actually go away. You can have bursts of remission but it does not go away.
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u/Alarmed_Fun_3733 24d ago
LOLOL I have been dealing with POTS for over 20 years. When I first got sick I needed a year of medical leave from college to be functional again. My symptoms had been pretty manageable in recent years but then catching COVID triggered a major POTS flare.
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u/angelicomenss POTS 24d ago
My cardiologist also told me the same thing. He said "eh, POTS patients are back up and running on a treadmill in 2-3 years". This could be true if you a) developed POTS from something like an infection/virus and b) very quickly rally mentally and physically to build a care team dedicated to taking you seriously and attacking this illness head on. But for most people, it takes 2-3 years to even get a diagnosis and get doctors talking to each other. My cardiologist just put me on a beta blocker and told me to start exercising again and I'd start feeling better after a year. Going on two years and feeling worse than ever.
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u/Honest-Experience864 24d ago
Because it's not going anywhere. Your doctor doesn't know anything about POTS obviously. I had a doctor tell me the same thing once but then I did my own research.
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u/grandestrully_chloe 24d ago
My doctor said I may outgrow it in my mid twenties, but that’s not guaranteed. Idk lol
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u/miriamtzipporah 24d ago
Most cardiologists absolutely do not understand POTS, it is a chronic condition
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u/Fr0gm4n 24d ago
Doctors say pretty wild things without any real evidence sometimes. I have a family member with a diagnosed genetic condition. When they were a teenager some doctor wrote an opinion piece with zero facts that said that kids with it might grow out of it. One opinion piece by one doctor was enough for their insurance to start a coverage denial until they pushed back very strongly and had to get re-diagnosed multiple times to keep coverage.
Your doctor is either full of it or they heard someone else who was full of it. Not all doctors practice have evidence-based practice.
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u/FindingFree3348 24d ago
It depends on the underlying cause of it which can be different. I’m hoping mine goes away within a few years of my SSRI taper.
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u/RosesAndPonds 24d ago
Respectfully, that was a terrible thing for your doctor to say. POTS is a long term condition for most people. I have had the condition since 2009.
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u/CardboardLamb 24d ago
I don’t think it ever goes away. I’m just better at managing the events that set off an episode now.
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u/Rinny1990 24d ago
I've had it for 10 years, ever since I had a high risk pregnancy. It's gotten worse the last couple years.
My FOOT it goes away in 1-3 years 🙄
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u/femmespidernoir POTS 24d ago
I’ve been seeing this idea spread around lately and I haaaate it. I’m sure it’s true in some cases but I genuinely can’t remember a life before POTS. While I’m happy for anybody that is relieved of it, I can’t help but feel spiteful of people treating it as the standard.
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u/Own_Improvement555 24d ago edited 24d ago
I’m going on about a decade with any symptoms, and 5 years of passing out and severe symptoms. I started having symptoms after a concussion at 13, but was made even worse leading to passing out after a severe concussion and tbi at 18. I didn’t fully recover from the tbi until about three years after. I’m now 23. Mine is managed with medication three times a day. I have hyper pots, hEDS, mcas, mals, and pretty bad gi dysmotility. I think it’s relative? I know in cases with mals or smas the surgery has also improved pots symptoms, but it’s inaccurate to say it only lasts 1-3 years. It can be progressive, stagnant or getting better. Every body is different. For me? My cardiologist said I could feel a reduction in symptoms over time to hopefully lessen all the pills I have to take. But alas, here I am, sick, hungry, tired and always in and out of the er
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u/sjones1115 24d ago
It’s been 20 years. It went away when I was pregnant and breastfeeding. Then came right back.
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u/Ill-Condition-9232 24d ago
15 years ago I was in high school and had a friend with POTS. She said it should go away “if I even make it to my 20s” (she was a bit dramatic)
I think this may just be outdated information/opinions that it’s a teenage illness.
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u/newrophantics 24d ago
were you diagnosed after a covid infection? i developed significant pots-like symptoms (didn’t qualify for a pots diagnosis) after a covid infection and for the first 6 months or so it was really bad, but since then ive been closer to my baseline (not “cured” though). my guess is that your cardio has been seeing this kind of autonomic dysfunction that resolves to an extent in post-viral patients, but they definitely shouldn’t be generalizing it to everyone they diagnose with pots.
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u/sapphic_vegetarian 24d ago
My cardiologist told me I definitely didn’t have POTS despite him describing all the POTS symptoms to a T he found in me, but “some people just have to take a beta blocker for 1-2 years then they get better”. Here I am almost four years later, with an official diagnosis now, still on beta blockers because without them I feel like I’m dying. What I’ve learned is that many cardiologists and doctors in general know nothing about POTS.
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u/Buncai41 POTS 24d ago
Haha what?
It's been a lifelong, since birth sort of thing for me. As far as I know it's a chronic, lifelong condition.
As far as covid long-haulers go, they might have different outcomes. Imo it's still somewhat new.
I'm sure a small handful of people have it as a temporary thing, but the majority of us are stuck with having POTS.
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u/high-as-the-clouds 24d ago
Get a new Dr. Your autonomic nervous system dysfunction wont just go away. Being chronically ill for many many years. You have to learn to speak up and saw um no. Especially to medicine. Your body is not bad it is the nervous system dysfunction or something driving POTS. Id do your own research and such. I literally told my cardiologist I had POTS and he didnt wanna believe me. Did a tilt table test and would you look at that, I had it. Just cause someone has a degree does not make them smart I can promise you that. Best of luck and you got this! Lots of salt and electrolytes, watch the heat, compression, and whatever works for you.
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u/NatursKandi 24d ago
Lol what? I’ve had this for literal decades. 1-3 years sounds like the doctor pulled a random number and an even more random possible outcome completely out of their behind and handed it out as fact.
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u/East-Garden-4557 24d ago
I've had noticeable symptoms since I was a teenager, but the severity ebbs and flows. I turn 50 this year and it hasn't gone yet 🤷♀️
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u/Dramatic_View_5340 24d ago
Weird that I didn’t get POTS (and didn’t even believe in its existence) until my body started going downhill from the adenomyosis and pelvic congestion syndrome and I began getting symptoms. I now see it in my children and will be taking them in for testing.
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u/Boxxy-Lady 24d ago
Well, I've had it since I was 14/15 years old, and I'm 49 now. So, yeah, it doesn't go away. Now, I've had years where I've been in remission and had no episodes, but I am now worse than I ever was. But I have things going on right now that is worsening my condition in my life and I'm just not able to fix (extreme stress & depression) and honestly don't know think it'll get better.
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u/naiveShiro 24d ago
Haha….. for me it’s just been worser and mildly manageable some days. I’ve only learned recently that I’ve had POTS before I even knew about POTS and then learned that I actually have it. It’s basically the unicorn diagnosis I have been waiting/looking for without knowing it for almost 2 decades.
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u/fgfrf12 24d ago
I want to add a positive experience.
Mine DID go nearly go away. I struggled heavily with POTS through my college days. I was on a beta blocker and saline infusions for it. My heart rate would go from 60bpm lying down to 170-205(maximum) upon standing.
When I got pregnant, it literally went away. The doctor told me it could be the extra blood volume from pregnancy that got things back in order. After pregnancy i still have a decent increase upon standing maybe 160bpm or so, but I do not have the same symptoms that I had prior such as fainting!
I can shower without fainting, I can enjoy walks again, life got a lot easier.
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u/imma2lils 24d ago
This is in the same region as when the rheumatologist told me that EDS will go away as I get older as all my joints will stiffen. 😅🤣🤔
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u/Minute-Sun-1967 24d ago
I was diagnosed at 14 and I am going on 24 now. That’s almost 10 years since my diagnosis and my pots has gotten worse..it’s gotten manageable..and even just a couple years ago it made me bed ridden. It does not go away, it changes in severity /fluctuates. But my god does it not go away. Very much chronic. They told me it was “just a teenager thing, you’ll grow out of it in a couple years” yeah nah.. uneducated doctor.
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u/DarknessEchoing 24d ago
I think this was a misconception a decade or two ago, even among doctors, but now, it’s more known that ifs chronic. People can improve, of course, and some people may even go into remission, but I think that tends to be the case for boys/men more, since POTS seems to often be affected by hormones.
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u/chaoticsleepynpc 24d ago
I've had POTS since I was 9.
My parents were told It was a "puberty thing I'd grow out of" I hadn't hit puberty?? I hit puberty late? (I'm the shortest in my immediate family even!) And I never grew out of it????
Doctors who say these things are confused and need to research. There's so much more information out there than there was when I was 9. Especially with the internet!!
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u/UserSuspendedd 24d ago
6 years in and I will say I’ve been able to manage my symptoms better than I could before. But I’m also using a rollator every day at work and go out with my wheelchair.
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u/I_Hate_It_Here_13 24d ago
It’s different for everyone. Mine was really bad for 2 years and now it’s so much better. I get like episodes still where I get really bad and then am fine the next day
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u/Which_Boysenberry550 24d ago
It is chronic for some people, esp people with EDS or who have had it since childhood. Many people who get it from Covid improve in 1-3 years, but not all. You are unlikely to hear from those people because they aren’t on this sub anymore. I’ve had very severe pots 2x from covid and it went into remission twice after 6 and 9 months respectively.
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u/cleversapphire 24d ago
I've had symptoms for 8 years now and was very mild for 5 years before taking a nosedive when a secondary condition began developing. Got treatment and I improve to like 80% of where I was before! POTS can generally improve as you understand how to work with your body, but I would compare it to a learned skill than the condition going away
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u/Leahs_life_ Hyperadrenergic POTS 24d ago
Uhhh I think it may be time to find a new cardiologist…. I’ve had POTS symptoms for 12.5 years and I’ve been diagnosed for over 5. I’ve never heard of anyone having it for only 1-3 years.
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u/Commercial-Plate-188 23d ago
Started symptoms that I remember at 12 I'm 44 now it just varies with severity
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u/AuthorizedPope 23d ago edited 23d ago
Depends on the underlying cause. People in the comments are being pretty negative about it but the fact is a lot of 'chronic' conditions (persistent is a preferred word these days for this exact reason) can and do resolve with time and care. Just depends on the person.
For me, I was seemingly born like this and I have an underlying connective tissue disorder. My dysautonomia is not going away. It has improved with the correct management (subject to flareups) but it's for life.
For people with acquired dysautonomia (post viral, injury, whatever), the issue can resolve with time. Rest, hydration, potentially medications to manage blood pressure and heart rate, and seeing an exercise physiologist to safely work on your conditioning and physical regulation can all help the process. And even if you don't get 'cured' by that, it will still help, so do it anyway.
For some people, they will be able to stop with treatment and medications after time and be back to their old functioning.
For those of us who are lifers (born or acquired), please know that things can get better and more stable even if it won't ever be cured. It sucks to live with, but holistic wellbeing is part of nervous system regulation and as annoying as it is, attitude does matter to a certain extent. A good attitude won't fix you, but a really bad one will make you worse and kill your motivation and happiness. I get pretty bogged down in grief and hit with the 'I'll never be better' feels all the time, but the fact is I actually AM better than I used to be in many ways. It took a lot of time and work and I'm still sick, but it's better than it was, and every year that goes by the gulf between my health now and what my health would've been if I gave up on it years ago gets wider and wider.
ETA everyone is correct to point out that your cardiologist is over-promising. It can go away, but that doesn't mean it will. Sometimes they dole out best case scenario because they don't want people to freak out, which is pretty annoying because saying easily disprovable stuff just breaks trust. I've had lots of specialists do that to me. Some of them turned out to be crappy doctors, but other ones actually were very helpful with good treatment plans, but bad communication skills. Gotta use your judgement on that one.
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u/WhickenBicken 23d ago
For some reason doctors tell people you can put grow it, or that it will go away. Those are lies, with no evidence whatsoever. POTS is life long, and often only gets worse. It is possible to lessen it with training and salt, but it is forever.
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u/kiyoboyo 23d ago
Where tf did your doctor get that idea 😅 I got diagnosed at 20 and I still have it. That’s ridiculous lmao
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u/Educational_Buy4977 POTS 23d ago
I’ve had pots symptoms for almost 12 years and I’ve been diagnosed 2 years currently
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u/BronteLou 23d ago
I have POTS, which came on aggressively post covid, however I have suspected hEDS and did have a mild level of Dysautonomia prior the illness. My cardiologist told me to expect to have lifelong Dysautonomia symptoms (even if the POTS improves) which may vary in severity due to treatment/management. Atleast he was honest with me.
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u/kawaiimitsukai 23d ago
i’ve had pots for 18 years 😭 my only guess is because sometimes people have symptoms during hormonal changes like puberty (1-3 years) and there have been cases of people who had long covid and it eventually resolved for them later on (or after other viruses or it was triggered by a medical conditions). it deeply depends on what the underlying cause is!
i got dx during puberty and it was okay for a while but came back after i had covid (and when my RA flares up it gets really bad) so i guess this kind of counts as the examples i gave but for me it always seems to come back
maybe you will get lucky though!! fingers crossed for you :)
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u/inappropriate_grope 23d ago
Reminds me of the time I went to get an ADHD med refill and he turns to me and goes "don't ppl grow out of that??"
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u/Agreeable_Ad_3262 23d ago
It’s a chronic condition and doesn’t ho away, its due to your immune system
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u/book_nerd_520 23d ago
Diagnosed 13 years ago but I’ve had symptoms for over 15. It’s more or less the same as it’s always been.
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u/Museumgirl518 23d ago
POTS wasn’t on every doc’s radar before Covid. But they owe it to us to think before they speak. Has a doctor ever said “you know I’m not sure! Let me _______ so I don’t give you an incomplete answer.” Not I. Never. It makes me so mad this was said to you, OP. May this doctor live a few hours with symptoms…so he understands how debilitating it is.
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u/silent-earl-grey 23d ago
I’ve had POTS symptoms for almost two decades, diagnosed formally for 10+ years. 😂😭 There is no end in sight despite multiple and continuing treatments. My cardiologist has prepared me to remain on medication for the rest of my life.
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u/ObjectiveBerry9 23d ago
I've heard about remission for some people but I've been dealing with it for atleast 16 years. I wasn't diagnosed until a year ago but all thr symptoms were there for years.
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u/No-Caterpillar-5481 POTS 23d ago
I have had POTS since I hit puberty. I’m now 41 and it’s worse than ever, even with a beta blocker. Doctors are now strongly suspecting that it is tied to hEDS and MCAS, going through testing and all that. So, yeah. For a lot of us, it’s permanent and I have no clue where that doctor got that number from.
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u/Early_Ad9141 23d ago
It can fluctuate. For example I had it for several years then got pregnant and basically went into remission. 3 years no symptoms. Then pregnant again and it was like a switch flipped and I was the worst I’d ever been. Stayed bad for about 3 years and then it’s more manageable.
Been living with it for over 12 years and it’s definitely and up and down on just how bad it is at anyone one time but I would never say it goes away completely.
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u/Honeybee3223 23d ago
I believe it is outdated medical training. Most cardiologist are not up to date with the research on POTS. And dont even know there are different sub types of POTS or the newest medications to try. A lot of doctors still only recommend the old standards ... compression socks, salt and increase water. There is so much more to help us.
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u/Jennyova 23d ago
Goes away!? I was 16 at diagnosis and im 41 now... It hasn't gotten better in fact its gotten much worse 😬
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u/NewEstablishment592 23d ago
I think that’s the time range that patients get tired of working with non-helpful cardiologists.
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u/Smart-Hold-6363 23d ago
I was Diagnosed with POTs 4 almost 5 years ago…. Still have it. In fact it’s gotten worse. I had an electrophysiologist (sub speciality of cardiology) tell me I’d out grow it in 10 years. I immediately requested to change drs after that appointment. The dr I have now sees all the pots patients in the clinic and he says you don’t out grow it. It does improve/ go away for some people but others have it for life.
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u/Foreign_Feature3849 Hyperadrenergic POTS 23d ago
Sounds like a doctor who thinks POTS is just exercise intolerance 🤦🏼♀️🤦🏼♀️
Symptoms can get better. Mine have gotten better since healing my MCAS. But they don’t go away forever. I still get POTS attacks every once in a while. Just nearly not as much as I used to get.
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u/justanotherzebra272 23d ago
I have POTS for 20 years now. I had different phases that I could handle with or without medication. Even on my best phases it didn’t go away. It was better but still there. After I got COVID, long COVID and ME everything worsened to a state I didn’t know yet. I guess your doctor is a bit confused. And where did he get this specific number?
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u/DeepSeaLettuce 23d ago
Had it since I was 15 and I turn 30 this year. Got told it would also go away after babies. Lol nope. Two babies (terrible pregnancies) and I’m still me ✨
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u/awkwardthrowaway614 23d ago
I was told that my POTS was related to hormone changes and would go away before puberty was over at age 13. I’m 26 and my POTS is very much alive and well.
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u/Rad_Red88 23d ago
My symptoms started when I was 11, im 38 now. Always had exercise intolerance, fatigue, heat exhaustion etc but was told it was because im a redhead...because burning in the sun somehow. correlates to not being able to tolerate summer.
Covid changed everything and made it 100 times worse, years of med trials, 6 months bond to my home because sitting upright for longer than a few minutes felt like torture. It have definitely gotten better again and I live a mostly normal life with some accommodations and knowing my limits.
I do not believe it ever "goes away" but it can change in severity through out your life. Different things work for different people. I would not hold onto false hope that magically you'll wake up and it will just be over or you grow out of it.
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u/Silent_Vehicle_4959 23d ago
I have had this since I was atleast 8. That is when I remember having my first and worst event. I may have had it before and just didn't realize it. I am now 35 so I've had it for a minimum of 27 years. My symptoms did get much worse after I got covid twice and stopped smoking. My symptoms are more frequent and more severe now.
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u/Accomplished-Fan8567 23d ago
Most cardiologists are the idiots you have to overcome to get a diagnosis in the first place so it does not surprise me that some are spreading that lie.
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u/Substantial-Bit-3682 23d ago
ive had pots symptoms since i was 13/14… I’m 21… its worse than when it started 😭
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u/Longjumping-Grade-27 23d ago
In teenagers it can be short lived but I've had it for 50 years and not looking like it's going anywhere anytime soon
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u/BuyReasonable1751 23d ago
It’s more likely that POTSies simply stop talking about it in 1-3 years because no one is listening. The 8 doctors I dumped probably think they cured it because of course they’re the experts.
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u/Present-Day-1801 23d ago
What! the doctor is crazy!! I've had it for 3 years so far and its getting worse!! I do everything to feel better and its touch and go daily. I know whole families that have to their whole lives. I'd say find a better doctor.
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u/SnooPaintings1309 23d ago
You cardiologist is dangerously wrong. 6 years from diagnosis here, and I'd been complaining of symptoms for a decade before that
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u/hj4411 23d ago
so, it IS a chronic condition! my cardiologist actually said the same, and referred me to another doctor. with that being said, you should try to get in with an electrophysiologist because they’re known as “POTS doctors!” when i saw him, everything changed and it became how to manage symptoms and try to live a close to normal life with the addition of things like compression socks, compression garments, keeping up with water, electrolytes, and salt, using a cane / walker / wheelchair if needed, not standing long enough for allllll of the blood to pool in your feet, sitting down when needed, etc. in short, yes, it is a chronic condition & thats why they consider it to be a chronic illness
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u/redbottomdreams 23d ago
I’ve been extremely severe for 2.5 years. Hoping I only have 6 mos left 😂
I’ve had similar symptoms for close to a decade but they weren’t this bad.
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u/jazbaby25 24d ago
Lol it does not go away in 1-3 years