Has anyone been cured?

[Guest thisblows]

Has anyone on here had the kind of POTS that spontaneously resolves itself or know of anyone who has? I don't think I have POTS cuz I passed the tilt table test, but am still worried. My neuro says that in 60-80% of the people who have this disease it resolves itself in a matter of months? Is this ture?

[MightyMouse]

Yes, there are people that have their symptoms resolve completely. I know a few.

I think your doctor's figure is a bit high though--I've heard the same figure from a few sources, but I've not seen research supporting exactly what percentage completely recover. I would say that there are some folks who never get better and even get worse, there are some folks who go through ups and downs with symptoms and have periods of near-normalcy, there are some folks who get lots better but still have symptoms, and then there are those who recover completely. Exactly what percentage? I couldn't say...

Michelle Sawicki, in putting together all your references, have you seen any figures that are research based?

Nina

[MomtoGiuliana]

What I have read in most patient literature about POTS is that for most patients, POTS symptoms eventually resolve to a "manageable level". My specialist doesn't paint such a rosey picture, but he did tell me that the MAJORITY of POTS patients he has seen, improve with treatment and time. Some stay the same or get worse. And, he said it is hard to predict, except that those for whom the condition arose spontaneously, without an obvious trigger like a virus or pregnancy, are more likely to stay the same or get worse than those who developed POTS in response to an obvious trigger. But even among those who develop it spontaneously, there are many examples of such patients recovering well--with only minor symptoms remaining.

I am curious too if there is any research out there on this--I haven't seen it myself.

[denabob]

I wonder if what alot of doctors are calling "manageable" is just the fact that after years we learn ways to cope better? We get tougher and tend to not complain to them as much because there's no use. I dont know if the symptoms are less severe or we're just use to them.

Kind of like having a constant pain........ when I had knee surgery I didn't realize just how much my knee still hurt until it stopped, I had built a tolerance to it! We adapt and go on with our lives in spite of the symptoms but if they went away we'd realize just how much we'd been dealing with them after all, Do you think?

Just my opinion I dont know anyone who made a complete recovery but then again you guys are about the only ones I know who have it to begin with!(besides me of course )

My specialist says that the best news he can give me is that POTS doesn't seem to be progressive. In combo with other dysautonomias that may not be true but alone it usually holds steady. The chance for complete "remission" is usually when it's onset is due to a virus or deconditioning. (from what I hear anyway)I unfortunately dont fall into either of those choices!

Bye!

Deanna

[Michelle Sawicki]

I've heard some of the same statistics at conferences and presentations. Like Nina, I thought they were high, but I do try to keep in mind that the people contacting me are likely to be the ones that did not get better. I'd like to see a long-term study on POTS patients. I don't know of one that's been done.

I do think there were some stats in one of the articles I've read. I'll try to find it and post what it said. One thing that must be taken into account is that some patients do get better only to become ill again at a later period in their life. (Sorry if that is depressing). I think only a long-term research study will yeild the true stats on how many POTS patients actually get better (and stay better).

Michelle

[scamelo]

If 60-80% of the people were cured in a few months, we would not be hearing from any of them and most likely they would not know they even had POTS. Most likely they would think they had a virus and are now over it.

I took almost 5 months to find what was wrong because I really pursued it and I have a very mild case, just those horrible internal jitters/current feeling that won't go away which is the worse. If I would have been getting better or cured say in 4 months, I would not have gone further to get diagnosed and would have thought it was a virus or something.

[Michelle Sawicki]

I haven't found the article I'm looking for, but I did come across this on Vanderbilt's site:

Long-Term Outlook for Patients

The majority of patients with OI have a relatively mild disorder which improves over succeeding weeks and months. Most patients will eventually be free of symptoms. However, in some patients, the symptoms are more severe, the duration of the illness may be longer, and the expected recovery may not occur. Overall, on follow-up, the majority of patients with OI have improved. More than half of the patients remained on treatment. Those patients with antecedent events, such as a viral infection, appeared to do better overall than those who developed the condition spontaneously.

From:

http://www.mc.vanderbilt.edu/gcrc/adc/oi.html

Michelle

[EarthMother]

Looking back, I'd say I was "cured" several times. When I was in my early 20's and "fell ill" the doctors were puzzled and said they could not explain why my blood pressure would drop when I stood up, or why I was having high heart rate on "mild excertion". But in a few months ... I was fine. I went on with all of my normal activities and then during the first trimester of my first pregnancy I was again "inconvenienced" by a bout of orthostatic intollerance. But again it went away on it's own. I attributed any odd symptoms I would have over the next few years to my Thyroid disease. It wasn't until my mid 30's that the crash was so severe and the recovery so slow and incomplete that a new diagnosis began to emerge. Then for me, with this latest "crash" last summer, I came to the diagnosis of POTS. New name, same symptoms and yes, they have improved since the fall, but I can't say they've gone away.

So I probably could believe that 60-80% of the people "diagnosed" are "cured" at any one time. However, if we did a longitudinal analysis and followed these people over 20 years, I suspect we'd find more shades of gray than any black or white answer to this complex disorder.

Good luck in your journey,

EM