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Pots Relapse Poll


  

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Not all patients relapse in the literal sense - many patients have one long 3-5 year illness that fluctuates but eventually improves. others like me get better quicker, but relapse.

Ive noticed a pattern with my POTS. Relapses occur out of the blue - literally within ten minutes. the acute phase of a relapse is 3-4 months, followed by the gradual improvement period when I can start to exercise that lasts between 3-8 months. The longer the remission the better I get (26 months i was between 80% to periods of almost 100% well. i was running, I was working full time, in a band performing weekly, in a soccer team and then backpacked right through central america.

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I have had better periods in the 6 years I've had dysautonomia, but I don't think I was ever 75% better, and that was in the first two years. I've been unable to work for about 6 years, and I certainly have bad periods of time when I hardly ever leave the house. Just got out of a really bad period when I was fainting almost every time I stood up. I'm now on Midodrine, 7.5 mg, but it's not doing much for me and I've lost my appetite and about 10 pounds. Right now, I'm in limbo with my neuro from Mayo. We tried Mestinon, but I couldn' take it.

Grrr! I want to go back to work!

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I could'nt answer as I haven't got better yet and so haven't relapsed. Into 18 months of fairly consistent symptoms so hoping i will be lucky and get gradually better.

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  • 2 weeks later...

Thank you Emma I shouldve added, if you haven't gotten a remission how long have you been sufferring.

I'll also briefly say that I had my first flare in 2006, took me about 5 months to recoupe and go back to work. I took it really easy so was fine for about 3 years until I pushed myself and relapsed 3x throught 2011 until I finally had a huge flare that I'm have trouble recovering from, 8 months already with no end insight :(

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I've never really gotten 'better' - I've had better days, but I don't think that my POTS is the kind that goes into remission, honestly. I've had it for as long a I can remember...it's just a slow decline, pretty much.

But I wanted to point out that your results may be a bit skewed. :( The poll won't let me just answer 'no' on the first question and leave the other questions blank, even though they don't pertain to me because I've never 'recovered'. So the people who answer 'no' on the first question have to have answered the following 2...you might want to put an option in questions 2 and 3 to cover that, if you can edit polls. I can't remember if that's allowed. :D

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I'll have a week or two that are good, then I'll feel horrible for a few weeks. Then it repeats, back to a good week or two. That's the hardest part for me. To feel normal, almost like I could go out there and get a full time job, then the next week I can barely function. I do appreciate those good times, but I know that they aren't going to last. My cardio did say that I'll most likely have some good times then relapse because from what he has seen POTS seems to come in waves for some people...

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So far according to this poll many people have had multiple relapses over the years. Most people also have less than 6 month of recovery. I didn't add complete recovery as an option because I assumed most completely recovered people aren't on here that often anymore..

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