Has Anyone Completely Gotten Over Pots?

[Lemons2lemonade]

I mean no medication, back to normal activity, working, no relapses?

[ramakentesh]

I have heard that people have, but i have never met or spoken to someone that has.

[Jan]

I have a friend who has gotten over it almost completely. Just has to be careful not to get over heated, but that is true of most people. . One doctor at the Mayo clinic said he knew people who were back to normal. Those people aren't going to be coming to a board like this.

[Lemons2lemonade]

Haha you're right Jan, its kind of an oxymoron Thank you for sharing the story of your friend- was beginning to wonder if they even existed. Does she.still take medication? Also, anyone else know of a "survivor"

[Clairefmartin]

I was totally symptom free for a few years. But it always came back. And during those years I was not on any forums or groups online - I was out living So they are not on here probably...

[Lemons2lemonade]

Cf- were you symptom free after being diagnosed?

[jangle]

Lemons, I think I read somewhere that most people with POTS do recover. Something like 50-80%. There was this study done recently, http://www.ncbi.nlm....pubmed/22190289

I only have access to the abstract, but I can go to campus and review it there tomorrow and see what percentages they were reporting.

You can get better!

CfMartin, also I'm curious, when you got better was it a light-switch type thing, or did you gradually acclimate out of POTS?

[Lemons2lemonade]

Jangle, I read that too but have never actually heard of.it.

[jangle]

We should start a thread about success stories? I'm sure there have been people on this forum who've gotten better and perhaps they've stopped coming back.

[ramakentesh]

ive been on this forum for 8 years. lots of people disappear over time so perhaps many do improve. I suspect a lot may improve to a state of almost normal functioning with occasional mild sympotms (im like that maybe 3/4 of the time in the last 8 years). Trust me you can live almost normally like that but for me for what ever reason i get relapses. I think im getting better at dealing with these though because I know that over time things will slowly improve.

[RichGotsPots]

I think the doctors over emphasize complete recovery because there is no one really tracking recovery rates and so they are trying to use positive reinforcement. I think people have normal to almost normal period but relapses happen from time to time. I had 3.5 years of almost normal life..

[RichGotsPots]

this is according to Dr. Grubb:

Prognosis and Impact of POTS

"At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed. Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy. Patients with the hyperadrenergic form of POTS usually require therapy indefinitely. The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder."

[potsgirl]

Rich and Jangle,

Thanks for posting articles on the prognosis of POTS. Jangle, if you do get the time to review that article in depth, please let us know your findings. I think we're all interesting in recovery rates!

[jangle]

I just got back from reading it.

31% of patients were asymptomatic after 8 years.

59% of patients were significantly improved after 7 years.

13% had no relief after 8 years.

So roughly 1 in 3 will have a complete remission, most will have a significant improvement, and it's rare to have no improvement.

[chipper]

From age 29 to 38 I was well because of exercise, but after exercise in a room that was too warm for me, life was never the same.

[jangle]

Tonight I'm feeling a strong remission. I seem to be like 80-90% better at night these past few days but I'm horrible during the day.

Looks like the goings good for me to find a girl named bella and have a hot multibillion dollar hollywood romance.

[MomtoGiuliana]

I would say this describes me: "relative absence of orthostatic symptoms along with the ability to perform the activities of daily living with minimal restriction." (note this is really not the same thing as complete recovery) 90% of the time. I get symptomatic on a monthly cycle and also have short relapses occasionally. Ever since becoming severely ill w POTS during pregnancy in 2002 I have never gone back to being as well as I was prior to pregnancy.

[Lemons2lemonade]

Haha yes it is jangle.

[jenglynn]

This may seem like a silly question... but when we are talking about P.O.T.S are we talking about Autonomic Dysfunction/Failure Neuropathy (immune mediated or not). but would remission be the same in that case?

Thanks,

Jen

[ramakentesh]

Since there isnt clear agreement of the primary mechanisms of POTS between research groups it tends to be hard to say,

Jangle - my remissions go like this:

Relapse - feel bad all the time

Start to feel better one every three nights'

Start to feel better most nights

Start to feel better most nights and some afternoons

Start to feel better for a small period in the morning, then bad in middle of day, ok at night

Eventually (usually a fair amount of time - months) I start to feel pretty good more than i feel pretty bad

I usually get to a point where I may have one bad day in every two to three weeks, although fatigue remains a problem

Then eventually I relapse ad start the cycle once again. It seems to be maybe 1/4 of the last 8 years pretty bad, 3/4 of the last 8 years functional but tired. Ive been in bands, travelled overseas, been in a soccer team all with POTS in what I call a somewhat remission - never fully gone but managable to some degree.

I dont really definitively know what my POTS is caused by. It came on out of the blue (id had a mild virus but nothing too bad and id just got back from a trip to China). My characteristics are slight elevation of BP on standing, although it is lower when i feel bad, ptosis occasionally, vitreous floaters, occasional pupil issues and vasoconstricted hands and feet when bad.

I came down with an autoimmune condition when I got POTS.

Hope this helps. Hope you do achieve a complete recovery and many must or they wouldnt say otherwise.

[ramakentesh]

i wish exercise protected me against relapse. Despite what some might say it doesnt in my case as I was running 5kms three nights a week the week this relapse came on.

[Clairefmartin]

I would say this describes me: "relative absence of orthostatic symptoms along with the ability to perform the activities of daily living with minimal restriction." (note this is really not the same thing as complete recovery) 90% of the time. I get symptomatic on a monthly cycle and also have short relapses occasionally. Ever since becoming severely ill w POTS during pregnancy in 2002 I have never gone back to being as well as I was prior to pregnancy.

This described me as well (before the horrid downfall of 2011 - still ongoing), and I was symptom free during my first pregnancy and while nursing. Second pregnancy took me down I relate with Rama as well, I always bounce back (usually), but this time is taking so much longer I'm really hunting for answers as to why I ave POTS.

Anyhoo, gread thread, thanks for all the articles and research everyone!

[Clairefmartin]

i wish exercise protected me against relapse. Despite what some might say it doesnt in my case as I was running 5kms three nights a week the week this relapse came on.

Did you see the new Levine article? http://hyper.ahajour.../58/2/167.short

I won't share my more descriptive thoughts and language on this, but I am shocked the AHA published it. Excercise can cure us all because we ALL have small hearts. Yeah right.

[ramakentesh]

because many patients do improve with exercise they tend to accept this as proof positivesupport for the deconditioning theory. Since there are a myriad of abnormalities that are measurable in POTS patients (low NET, high ANG II, QSART, MIBG etc) I dont think its that simple.

Also its important to note that there is a large volume of evidence that returning astronauts are not only deconditioned, but have increased nitric oxide activation upon return from microgravity. These findings are not often mentioned in the literature on deconditioning. Increased NO activiation has been found in some POTS patients and has also been shown to reduce cardiac size and stroke volume.

[ramakentesh]

Maybe you should write a rebuttal and get it published. LOL