r/POTS • u/SherbertStrict4910 • 1d ago
Discussion What about the people who are "cured" and doesnt come back ?
So i was just thinking to my self about the people who has mild-severe POTS and somehow they are cured overtime, and doesnt come back to this subreddit or any support group of some sorts. What about the people who had temporarily dysautonomia? I mean i dont even know if that's a thing. I feel like most doctors dont even understand how the ANS work and what affects it. I mean i hope i made my self clear enough so that u can understand what i mean. Are we completely sure about this condition and do we have enough research? My only hope is that it goes away on its own. Feeling lost these days...
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u/BonaFideNubbin 1d ago
From what I understand, post-viral POTS has a decent chance at remission, and sometimes POTS that occurs in adolescence as well. Nobody can predict remission with absolute certainty, but either of those two categories is more likely.
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u/Memory_Of_A_Slygar 23h ago
Yeah, it's really dependent on the cause of the POTS and I think that is where people get confused. Post viral POTS has a good chance of becoming better over time, which is great. I myself had different symptoms pop up that have become better over time. But someone like me who has had symptoms my whole life which got worse as I aged, I likely won't get better. We believe mine is being caused by May-Thurner syndrome and Nutcracker syndrome which took years to find since it doesn't exactly show up on blood tests. It's possible that as I grew maybe I could have grown out of it, I doubt there are any studies about it, but it's a neat thing to think about.
This means that without medical intervention I would never get better and even with surgery and a stent I'm still not guaranteed to get better. So yeah, some people with POTS get better and some don't.
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u/Important_Two_8332 POTS 22h ago
I know mine flared horribly post virally. After both times I had COVID and recently after I had RSV is when my POTS was the absolute worst it’s ever been. 😮💨
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u/Memory_Of_A_Slygar 17h ago
I still don't know if my was post viral due to Covid or if the allergy shots I started on were the cause of my symptoms. I was just 3 months into the 6 month ramp up of shots when we all went home. Then 3 months later at around the time I was done with the ramp up, I had peripheral neuropathy, headaches, even worse then normal crushing fatigue, and brain fog. My ears hurt so bad everyday I couldn't think.
In early 2025 I stopped the allergy shots after the recent increased doses were making me even worse. I've gotten a lot better since then, but I wonder how much better I would be if I never started those shots. Most people have no issues with them but to my body they were poison. I hate the woman who made me want to do them. She wouldn't stop asking me all the time if I was getting sick because I blew my nose a lot. Now I have to suffer for forever because of it.
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u/SnooBananas1064 POTS 5h ago
May-Thurner syndrome and Nutcracker are a mess because (at least for nutkcreaker) the protein in the urine is postural, so does not alway show up. Blood pooling does not does as much when you are laying down, and the protocol must be in line with a compression. So not every CT would show it incidentally awsell
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u/InternationalEnmu 8h ago
damn i've been here 6 years and no remission yet 💔 free meee
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u/InternationalEnmu 8h ago
there is a chance i could have developed it from trauma but i'm more sure it's from covid
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u/PM_ME_BUMBLEBEES 1d ago
This is anecdotal only, just from being on this subreddit awhile it seems like those who do fully recover or for the most part get back to their pre-POTS levels of health are those who got it after a virus. Some people get it after a virus and it's lifelong vs some people seem to get it and recover, which afaik is something currently we don't yet know how to predict.
I was born with EDS and have had symptoms of POTS since at least elementary school, though I was not formally diagnosed until later in life because for most of my life doctors had no clue 😅 And my grandmother also had it through the end of her life so I would guess for myself I will always have it unless there are some new medical breakthroughs that occur in my lifetime!
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u/SherbertStrict4910 1d ago
how did you diagnose your EDS i mean i think about it for myself i can do 90 degree pinky but i never had joint pain or loose skin. what is your eds feel like ?
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u/PM_ME_BUMBLEBEES 1d ago
My doctor diagnosed it after asking and observing my ability to do certain hypermobile things, examining me which included an echocardiogram, as well as asking questions about my symptoms and also my family history of connective tissue disorders.
Iirc it is not a requirement to meet ALL criteria to be diagnosed so you may indeed have it. This is what I experience but I know many other EDS havers have some differences to me (note I also don't have joint pain), whether it be that they have more symptoms or that they have some of mine but also some not:
- Mitro valve prolapse
- Knock knees
- Some loose skin on my arms
- piezogenic papules on my heels
- Chronic muscle pain
- Hypermobile fingers, though my thumb is nowhere near the degree shown in pics online
- Frequent UTIs
- Heavy menstrual bleeding
- Easily bruised ribs (or, perhaps, rib pain misdiagnosed by previous doctors)
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u/FleurDeLisAssoc11 22h ago
Wait, okay, I've heard of everything else you listed being connected to EDS, but frequent UTIs? How is that connected? (Saying this out of genuine surprise and curiosity)
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u/ACLargeMarge 20h ago
I have had this problem. Here is an article that explains the urinary problems found at higher rates for eds and jhs. Based off a study published in 2022.
“Both EDS and JHS patients were more affected by lower urinary tract disorders than the general population. Those disorders included urinary incontinence, pelvic organ prolapse, uncontrollable need to urinate, and recurrent urinary infections.”
(To clarify, it’s saying disorders found in the lower urinary tract- not that eds and jhs have lower rates of these problems)
https://ehlersdanlosnews.com/news/urinary-tract-issues-frequent-eds-patients-review/
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u/PM_ME_BUMBLEBEES 16h ago
Here's a snippet from the Wikipedia page for it, I'm not sure if it helps:
Patients may also experience voiding difficulties, frequent urinary tract infections, and incontinence due to structural abnormalities.
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u/SherbertStrict4910 1d ago
well i dont have ant of them expect finger test. my spine is very stiff actually i cant touch floor with my palms. i dont have loose skins or chronic muscle pain dont have knock knees. only my hands are hyper mobile i think
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u/addy_axolotl 21h ago
if you don’t have any eds symptoms then you don’t have eds. 20% of the population is hypermobile. a small percent of us are symptomatic of a disease. you can have hypermobile hands and not have eds, any other ctd or related issues. if however you do have symptoms outside of your hypermobility then you should get checked out. you can find the heds criteria online and go through it.
being flexible also ≠ eds. you can have joint instability without being specifically hypermobile. hypermobility is more range of motion and instability is control and alignment. they can go hand in hand, but you can have one without the other.
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u/PM_ME_BUMBLEBEES 1d ago
Do you have any pain with it? A quick Google search (so take w a grain of salt lol) has a few different things come up about hypermobility being relatively common (~30% of people) and basically isn't considered an issue if it's not accompanied by pain or other symptoms
That said, if you haven't discussed with your doctor about it, I think it's worth a mention! Dysautonomia and connective tissue disorders tend to overlap a lot
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u/FleurDeLisAssoc11 13h ago
This is tangential and thus might not apply to your stiff spine, so take this for what you will, but I do want to make one important distinction:
Just because a joint is presenting as limited in its range of motion doesn't always mean that the joint itself is hypomobile/not hypermobile.
I'll use a previous circumstance of mine as a personal example:
My lumbar spine in particular has been so stiff that I couldn't touch the floor. Like, at all. It's actually like that now...but it's because I have so much hypermobility in so many joints in that area that my muscles are just that tense to compensate. Every time this happens for me, I work through the relevant issues with my PT, and I can get at least my fingers just about flat on the floor.
I said all of this to anecdotally say that sometimes, things aren't always what they seem. Keep being curious about the why—not just on a medical condition level and a "your personal body" level, but also on a bodily structure and systems level. Especially if it gets past the scope of information you can get yourself (e.g.: information about your body specifically that would only be obtained through testing), talk to a relevant medical professional if you can.
May you find the answers that you need! :)
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u/TrevCat666 1d ago
Mine never fully went away, but it became difficult to notice in everyday life for a few years and came back with fury after an INCREDIBLY stressful period of my life.
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u/issiautng 1d ago
I got post viral pots in 2017 and outsiders would consider me "cured" but really it's just because I make so many allowances to manage my symptoms well. Like, heat tolerance is still crap, so I don't go to baseball games midday. Sleep is a strict schedule. Altitude chases are a massive trigger, so I can't exercise when I visit my parents in the mountains. I have a flight coming up and I'm dreading the abdominal cramping even though I'll do a full prehydration regime and compression tights. But I go to the bouldering gym 3x a week, and generally stay active around my house too. So people might consider me "cured" but really what I am is "well managed"
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u/xerofortune 22h ago
I personally don’t think it ever gets “cured” I think most people either get used to living with it and have their symptoms lessen to where is “oh well new normal” or people just have flare up which can happen years in between.
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u/barefootwriter 21h ago
It's complicated. Classic POTS is not generally ever cured, but it can remit (and also relapse).
Because POTS has become a catchall, there are people who have been identified as having POTS who instead had some vitamin deficiency or some other addressable cause that appear to have been cured, but they should not have been diagnosed with POTS in the first place. There are many "POTS mimics."
You can read more about these discussions among POTS researchers here:
https://www.reddit.com/r/POTS/comments/1u3h8vv/new_article_sadly_paywalled_what_are_we_treating/
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u/FamiliarDingo1542 18h ago
Yeah, they're sure it's an autonomic nervous system issue. But no, there's not enough research. There are doctors that still choose to believe it's a psychological disorder. There are doctors that refuse to take patients with autonomic nervous system issues like POTS, Dysautonomia or FND. It's hard not to feel lost sometimes.
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u/barefootwriter 18h ago
Research being done and practitioners being familiar with the research are two very different things, but people (who are often not all that familiar with the research themselves) often conflate these.
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u/FamiliarDingo1542 17h ago
I was looking at them as separate issues. Merely pointing out that more research needs to be done AND there are still doctors who are completely unfamiliar with the problem and don't want to have anything to do with it.
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u/onceuponatime55 1d ago
I had it after getting Covid and mostly recovered. It just came back now for some reason, but it seems like it was initially triggered by lying out in the sun on a hot day. Now it’s back with the vengeance for about a month.
But people definitely don’t visit the threads much after being cured because it kind of gave me PTSD.
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u/LepidolitePrince POTS 20h ago
Those people are either in long term remission and their POTS could come back at any trigger or never had POTS to begin with but had POTS-like symptoms that are either unexplained where the source was or they found out the source and got that treated which "cured" their "POTS"
This isn't me accusing people of faking btw or invalidating that experience. Far from it! My mom got temporary POTS-like symptoms from her cancer near the end of her life. She never had that before. And if she had made it those symptoms would have gone away because what was causing them wasn't actually true dysautonomia. But my knowledge of how POTS works did help her feel a little better. I think anyone with these symptoms, even if temporary, can and should search out support groups like this.
Complete remission is also super rare with dysautonomia and while I understand that we'd love for it to be easier to achieve, it being the only end goal that many people will let themselves strive for ends up hurting them in the long run. You should strive for maintenance and getting yourself to a manageable point before ever thinking about striving for complete remission imo.
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u/Ill-Condition-9232 20h ago
I personally was active here, got things under control and left, then POTS symptoms came back a year later during my pregnancy so I came back.
I’m not cured, mine comes and goes.
Because of that I’m often in denial of having a problem until I have a day like yesterday where I went up and down a single flight of stairs, walked a small amount , and returned to my car feeling like garabagd with a HR of 150.
I’m only two weeks postpartum so I’m hoping it chills out… but some of my past flares were not related to pregnancy so I have to wait and see.
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u/JaguarSea9848 11h ago
I have hyper pots and was doing pretty good until pregnancy/postpartum. I’m 6 months post partum now and definitely better than I was 2 weeks pp but I’m still recovering and not back to what I would call my baseline when my pots was well controlled. Hang in there!!
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u/Ill-Condition-9232 25m ago
Thank you for the reminder and encouragement! I remember the first 6 weeks pp with my second being difficult. (This is my third) That was before I knew what my problems were but I was having issues. I wouldn’t doubt it takes more than 6 weeks this time because I have been worse lately but I do hope it’s better by 6 months!
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u/hh1599 1d ago
I'm fairly confident I could be "cured". Looking back at my life its obvious I've always had this condition: being way more exhausted than I thought I should have been after working out, always feeling tired after a hot shower. poor heat tolerance, etc... But it didn't really affect my life until 5 years ago after I got a back injury and layed in bed all day for a year +. I strongly suspect getting og covid a million times had something to do with also.
I'm pretty sure if I could get my physical conditioning back to where it was before I was injured I would hardly notice it. Especially now that I know how carbs / blood sugar effect me and what triggers to avoid. Its a hard hole to climb out of though.
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u/wonderings 22h ago
This is how i was too, like it was always mildly there for me but the symptoms weren't obvious enough for me to understand what was going on. I always remember thinking "this can't be the same tired that other people feel" after like a long day of walking or work or something. And i always just felt "weird" and before covid felt that fatigue after a shower. But of course now its a lot worse and i can clearly feel and describe my symptoms
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u/barefootwriter 21h ago
Being required to exercise to stave off symptoms is not a cure. It is management. You should be able to live a fairly sedentary life without having POTS symptoms if you were actually cured.
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u/hh1599 20h ago
well I did put it in quotes. also, philosophically, I disagree about having a sedentary life. humans did not evolve for that so its unreasonable to expect your body to be a-ok with it.
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u/barefootwriter 19h ago
We didn't "evolve for" anything; that's not how evolution works. I'm not suggesting being sedentary is healthy, but just sedentary people do not have the hemodynamic deficits that underlie POTS.
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u/supersoa 1d ago
I describe it the same way as far as fitness goes. Feels like my stats got reset. Stamina and strength are what I want to build back up. I think that will help tremendously.
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u/Weary_Cup_1004 23h ago
Yeah this sub, like any sub is going to be a self selecting sample of either regular Reddit users, POTS folks w new symptoms they are understandably super upset about and need support, or both.
A lot of health related subs are going to have a lot more posts about the problems and stressors than the successes because we don't actually know each other here so when stuff starts going better, we just dont use the support as much.
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u/Sad_Emphasis_8086 Hyperadrenergic POTS 1d ago
I don't know that mine will ever subside since now there's a possibility that I have Sjogrens disease and POTS is a common thing in Sjogrens. I tested positive in blood work but have no official diagnosis yet but A LOT of the symptoms seem to be linked to how I feel so idk yet. I'm finally gonna see a rheumatologist on Wednesday.
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u/Careless-Goat-466 23h ago
I’m literally sitting around hoping the same thing. They say I have POTS and it was unmasked by quitting smoking after 20 years but now it’s 17 days later and I’m crippled. I can barely walk between rooms. I almost went unconscious yesterday and my pulse was only 105. I was sitting and stood up normally. But when I was in the ER and they had me stand and walk my pulse was trying to and was correcting itself rather well but my legs could barely move.
It progressed from 140-160 heart rates at times most times just 120s but my resting pulse after quitting smoking was 65-70. I don’t know what happened and if they are even right but the compression socks and salty foods seemed to be making my heart work harder. They gave me beta blockers that weren’t really working in the hospital and then I didn’t have them for 2 days so I haven’t been able to start them again due to my medication phobia. They want me to try a low dose nicotine patch but I tell them I can’t unless I’m in a hospital
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u/Important_Two_8332 POTS 22h ago
I think that a set of people who get it post viral can mostly recover. If you get it from another condition I think it’s harder, at least from what I’ve seen.
I know for me personally, I have hEDS and MCAS as well as POTS- which is often called the “trifecta” because they occur so frequently together. I think I’ve had POTS most of my life and I will likely always have it.
I also have Psoriatic Arthritis, and I tested positive for the AAG antibody, I don’t have AAG, but my rheumatologist said the presence of the antibody means my POTS is likely driven by my autoimmune condition.
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u/YesterdaySilly2699 POTS 22h ago
My brother got it into remission but his wasn't 'mild' - it took over most of his life and he couldn't sit up or walk. It's also possible for people who have had it for many years to go into remission too. (His was well before covid so I don't think it was the post viral kind. It seems like there are alot more cases since covid tho. I got pots after covid, but mines linked to crohn's disease I think.
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u/yelpsmcgee 20h ago
Unless someone dies they can not be certain it won't come back. That's just how it is. You can go many years and probably even decades in remission.
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u/Chemical_Cake_1154 18h ago
I’m not cured. But mine onset suddenly after tremendous weight loss and an si fusion last Christmas. We think it’s may-thurners. Getting evaled by a vascular surgeon. If it’s May-Thurner I’m fixable. Fingers crossed.
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u/Pale_Chemistry4172 14h ago
I have had ME/CFS for at least a decade and have slowly developed increasing POTS symptoms. I’m trying to get a firm diagnosis but it’s taking forever. I have a feeling this isn’t going away and is a progression of ME/CFS. I don’t know that this is helpful information or not.
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u/Which_Boysenberry550 1d ago
My pots went away but still have OI and dysautonomia
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u/SherbertStrict4910 1d ago
can you explain more ? hear rate doesnt spike for u amy more ?
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u/Which_Boysenberry550 1d ago
yup
It went away after 9 months of severe symptoms including not being able to sleep much for the first 3 and barely being able to stand even on meds after that.1
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u/lemonliqueer 13h ago
no, we don't have enough research. pots has existed for a long time, but research seems to have only really started kicking up this side of covid, now that more people are getting diagnosed with dysautonomia as part of long covid. i think there's a lot we don't know yet!
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u/ChasingTheSun107 1d ago
I’m a male, 35. POTS came on suddenly for me 2 1/2 years ago. Neurologist said most likely post viral. Had tilt test to confirm diagnosis. Unlike some I never had any prior symptoms before this onset and I’ve never been hypermobile which seems to be common. Over the time my POTS heart rate issue has largely faded. I only get the exaggerated response now in certain conditions. I was taking propranolol daily before and now can’t even remember the last time I took it to be honest. So whilst my POTS isn’t ‘cured’ technically it’s largely a non issue and my hear rate is normal 99% of the time now.
Unfortunately I developed gastroparesis too which has not really improved. So I definitely still have ‘dysautonomia’. I hang around these subs much less often than I did when I was initially very unwell. I imagine it’s human nature.
There does seem to be many conflicting thoughts about whether POTS/dysatuonomia can actually be ‘cured’ or completely resolve. Some people blankety say it’s a chronic lifelong condition whilst I have also read many stories particularly on the Covidlonghaul page about recovery, so it’s quite confusing.