HCD77 Posted December 5, 2020 Report Share Posted December 5, 2020 I just started taking it today. Midodrine / Propranolol did not help that much.The side effects made me feel worse. I’m also suspected by neurologist of having MCAS that caused POTS. Now trying fludrocortisone to help symptoms. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted December 5, 2020 Report Share Posted December 5, 2020 Fludrocortisone helped me. I hope it helps you. It didn't 'cure' me, but it made things better. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 6, 2020 Report Share Posted December 6, 2020 Its helped a lot with me feeling faint when i stand up. I started in early september. It has made a big difference. However my right leg is a bit bigger than the other. Im not sure if thats related to florinef but i need to get that checked out. I have to make sure on my next doctor visit next week that my potassium levels arent too high from florinef. So just starting myself. I immediately got relief on the 2nd or 3rd day. I used to feel really lightheaded when i stood up. Rarely happens now. I still suffer with lots of other things though. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted December 6, 2020 Report Share Posted December 6, 2020 @Derek1987 You're kidding! My right leg is bigger too. I thought it was my imagination for a while, but now I am having trouble with pants being too tight on that leg, but not the left. I don't even know what kind of doctor to talk to and I feel like they would just tell me to lose weight... sure, I'll take a spin class then join a crossfit gym... Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted December 7, 2020 Report Share Posted December 7, 2020 On 12/5/2020 at 10:43 PM, Derek1987 said: However my right leg is a bit bigger than the other. Im not sure if thats related to florinef but i need to get that checked out. 18 hours ago, KiminOrlando said: @Derek1987 You're kidding! My right leg is bigger too. I thought it was my imagination for a while, but now I am having trouble with pants being too tight on that leg, but not the left. Wow, I am VERY interested in response to this right leg getting bigger thing. My right leg, actually my entire lower right quadrant has had significant edema for seven years. I've been to a number of specialists over it and nobody knows why. It start slight but over a year's time seven years ago, progressed to quite a bit of edema along the entire leg and upper pelvic area. the last time I saw someone over it was in Feb, before the covid shut down. It was a cardiologist (head of the dept) who I'd seen before for a procedure to rule out vessel blockage causing it. In Feb he said he didn't know what it was and that he'd never seen anything like it before. Some docs look at it and because it's only one leg, try to call it lymphedema (without any tests to support this) but I'm pretty sure it's not that. For one thing, it still pits, soft or hard depending on how long I've been upright. That would be very uncommon this far out for lymphedema. I am thin FWIW. I am very interested in hearing if anyone else here has this problem. Maybe I should start a new topic. Quote Link to comment Share on other sites More sharing options...
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