ramakentesh Posted July 2, 2009 Report Share Posted July 2, 2009 (edited) Hi guysJust wondering if anyone can fill me in on whether mestinon has helped them and what their symptoms are for POTS (pooling?, adrenal surges, etc). Edited July 7, 2009 by flop Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 2, 2009 Report Share Posted July 2, 2009 I think it's helping me - I was taking 60mg/twice a day and then tried the 180mg timed release. Boy was that too much! Really bad side effects for me so the EP told me to go off of it.After being off of it for a few days, I was feeling a lot worse! So I am back on 30mg/twice a day. The EP told me to go back up to 60mg/twice a day (and I want to, but have been a tad hesitant). I think I'll do this next Monday (I'll have been on the 30mg about two weeks then). I'll let you know if I feel a bit better being back where I was.I was diagnosed with POTS after a very horrible virus. My HR gets fast on standing, once in a while while sitting, and my BP varies. My BB keeps my HR in decent control, at least better than what it was. I do get quite a bit of fatigue. And sometimes I guess you'd call them adrenaline rushes...tired but can't sleep because I'm wound up if that makes sense (and when I'm working this is where Ambien comes in handy)?I'm not sure how to tell if I'm blood pooling, though. How do you tell? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 2, 2009 Author Report Share Posted July 2, 2009 Im guessing that pooling in the legs and hand would be fairly dramatic. Cold feet and hands may indicate the opposite, but not always - there can be pooling with reduced skin perfusion or otherwise. visual symptoms?? Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 2, 2009 Report Share Posted July 2, 2009 Im guessing that pooling in the legs and hand would be fairly dramatic. Cold feet and hands may indicate the opposite, but not always - there can be pooling with reduced skin perfusion or otherwise. visual symptoms??I guess I don't have major pooling then (so what does that mean, LOL). My hands would get super cold in winter weather (hence part of the move to SF)...so I don't think I'm circulating totally properly. I also get occasional dizzy spells. Visuals. Yes, on occasion I see spots. Especially when I get too hot standing (outside, shower, etc). I find it's primarily when I'm too dehydrated. It makes that worse. Quote Link to comment Share on other sites More sharing options...
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