Kay107 Posted September 2, 2012 Report Share Posted September 2, 2012 Hello,I am 29 and have had POTS since I was 8, but was not properly diagnosed until the age of 24. My main symptoms are syncope, near-syncope, and lack of energy. I go through periods of time where my symptoms are almost non-existant and then have flares of varying degrees. For the last two months I have experienced the worst flare I've had since 2007 (when a dr mistakenly diagnosed me with epilepsy and put me on Topamax). I tried Florinef for this flare but we had to discontinue it, and my dr. has prescribed Midodrine. I have not started taking it because I am leery of the side effects. While I don't like fainting and constant lightheadedness, I have learned to live with those things due to the long period of time it took to get a diagnosis. My dilemma is that I am an avid Crossfitter and this flare has really affected my energy level when it comes to the gym, and of course I do pass out after certain movements. This is the only time I feel really limited by my condition. For those of you who have taken Midodrine, would you say that the side effects are worth it in a situation like mine where my symptoms are mild enough that they really only hinder one area of my life? I am struggling with the question of whether I should just accept that I must slow down at the gym and lift less weight or take the Midodrine and risk the side effects. I feel kind of silly for asking but I really am in a quandry about it. Thanks for reading. Quote Link to comment Share on other sites More sharing options...
sarahm Posted September 2, 2012 Report Share Posted September 2, 2012 I am on midodrine and have only had very mild side effects. I occasionally get a tingly feeling on my head and less often chills. The feeling lasts maybe an hour. And now that I have been on it a while I very rarely feel any side effects at all. I would say give it a shot. Quote Link to comment Share on other sites More sharing options...
roxie Posted September 2, 2012 Report Share Posted September 2, 2012 I find the side effects mild, too. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted September 2, 2012 Report Share Posted September 2, 2012 I agree with both replies - and had very little side effects when I used it. After about 6 weeks my BP actually returned to normal and now I don't need it. I'm not totally POTs free but I believe coming out of this flare. Good luck Quote Link to comment Share on other sites More sharing options...
E Soskis Posted September 2, 2012 Report Share Posted September 2, 2012 You won't know if midodrine is beneficial or not until you try it. I've been on it for years and can't live without it. It has been a wonder drug for me and I keep it with me at all times. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted September 3, 2012 Report Share Posted September 3, 2012 I've been on midodrine for over a year and I haven't had much for side effects either. The only thing I got was the tingly scalp and goosebumps/chills. However those have gotten nearly non-existent for me. And actually...for me the tingly scalp thing was just always a sign that okay, my meds have kicked in. I love that I can go from sitting to standing without my vision blacking out every time! I hope it helps you out too! Quote Link to comment Share on other sites More sharing options...
Kay107 Posted September 3, 2012 Author Report Share Posted September 3, 2012 Thanks for your replies. I feel better about giving it a try Quote Link to comment Share on other sites More sharing options...
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