RichGotsPots Posted May 1, 2012 Report Share Posted May 1, 2012 thank you Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted May 1, 2012 Report Share Posted May 1, 2012 I'm trying to remember if I was 75% better...I was still having 1-2 pretty bad weeks every month but I at least did okay for 1-2 weeks each month. It was definitely a lot better than right now! It'll be interesting to see what others have to say. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 1, 2012 Report Share Posted May 1, 2012 The only time ever in my life when I felt not only better but great and normal was during pregnancy! ! ! (I am really serious) but I had only one pregnancy. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 1, 2012 Report Share Posted May 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 1, 2012 Report Share Posted May 1, 2012 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! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 1, 2012 Report Share Posted May 1, 2012 I am about 90%, 90% of the time. I have relapses and some can be pretty disabling, but they last about a week, or less. Quote Link to comment Share on other sites More sharing options...
E246 Posted May 1, 2012 Report Share Posted May 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 13, 2012 Author Report Share Posted May 13, 2012 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 Quote Link to comment Share on other sites More sharing options...
Libby Posted May 13, 2012 Report Share Posted May 13, 2012 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. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 13, 2012 Author Report Share Posted May 13, 2012 Thanks now there is an n/a option Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted May 14, 2012 Report Share Posted May 14, 2012 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... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 14, 2012 Author Report Share Posted May 14, 2012 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.. Quote Link to comment Share on other sites More sharing options...
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