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pots / remission possible?


denabob
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A Dr. once said that POTS/NCS symptoms could wax and wane in regard to their frequency and that some patients can actually experience a remission like state. Is this really possible? I know I sometimes feel worse than others and thanks to my meds even feel good sometimes but I still hope that someday this could get better. Also I've been told that this isnt a progressive disease and more than likely wont get worse as I get older. Any input on that? I'm only two years into this and only 6 months diagnosed so I will take all the advice I can get!Also that the only real risk is what I could get hurt on when I pass out and it shouldnt weaken my heart or cause other permanent damage.

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I'm sure you'll get better info than I'll provide. In all the research I have done, it appears that it is possible to actually get better once diagnosed with POTS. Everything I have read indicates that the best chance is if it was caused by a viral infection of some sort. My wife has had symptoms for going on 15 years now and there are many out here who have had them even longer. I don't see too many actual documented cases where this has happened though. It would be great if that was the case for even one person afflicted by this horrible syndrome.

I have also read where it is possible for the body to recover and get past NCS. I had not seen any documented cases where somebody actually achieved that freedom though.

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POTS can go into remission or resolve completely for a small subset of people. This may be the case for folks with sudden onset, such as a viral onset, where once the virus runs its course, the body is able to heal. It's not likely for those like myself, who've had symptoms since early childhood, likely from birth. Additionally, for some, symptoms can be progressive, but moreso for the subsets with a DX of Pure Autonomic Failure (PAF), Shy-Drager, etc. Some autonomic docs believe that women who go through menopause may experience an increase in symptoms--I was warned of this by Dr. Grubb at my first visit.

Nina

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What my doctor has told me (he studied POTS/NMH at Johns Hopkins and is known at least regionally for his care of POTS patients) is that, for many people, POTS becomes very manageable, with only minor symptoms, once treated properly. For some people, complete remissions occur. For some people it never gets better or gets progressively worse. He did say that onset that seems associated with a virus is most likely to resolve with a spontaneous remission. Because mine seemed brought on by pregnancy, he wasn't willing to predict the course mine would take.

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Thanks for your input! I guess alot of prayer and hope is what I have. We do the best with what life gives us and at least I know that there are others like me who could possibly benefit from something I have experienced that's reason enough I suppose. ( Of course I say that this week because I feel good- when I'm down it looks alot darker than that ;) )

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In myself, it seems to be a cumulative effect. I had very low BP during my first 2 pregnancies, then had mono, then had a bad fall flat on my bottom which herniated 4 discs in my neck. Shortly after my fall the HR issues began, and 14 years later, I can say it has progressively gotten worse. I think without all those other problems, I would not be as bad. My 19 yo son has flare ups of tachycardia at times when he is tired and the usually IBS an sleep disorders. I am hoping that his will not progress as mine has.

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