andybonse Posted April 30, 2014 Report Share Posted April 30, 2014 Hello,Update, since my potassiu is lowish and i pee a lot, my doc doesnt want to up the florinef, he wants me to do a drink and urine count for a few days, and we may try desmopressin at somepoint.Back on Midodrine today, yay light headedness gone, I miss this lol feel a bit dizzy and weird on it, not sure if thats normal and goes away? a bit tight chested but not short of breath like i was without it.Hoping for improvements Quote Link to comment Share on other sites More sharing options...
corina Posted April 30, 2014 Report Share Posted April 30, 2014 Keeping my fingers crossed for you Andy! Quote Link to comment Share on other sites More sharing options...
andybonse Posted May 1, 2014 Author Report Share Posted May 1, 2014 Actually last dose gave my hands a tingly puns and needles feeling and i felt rubbish. :/ Quote Link to comment Share on other sites More sharing options...
Mermaid Posted May 1, 2014 Report Share Posted May 1, 2014 Try and stick with it for a while Andy - it might help for you - here's hoping.I'm back on it too, (really think it's our shared doctors favourite drug . The thinking is that it might help some of my other autonomic symptoms. I feel like, for me anyway, it's like eating Smarties, but will keep you posted. Re hands tingling, mine have tingling pain anyway, with or without Midodrine so can't comment on that. Sometimes I get a goosebumps feeling when it kicks in but really it's not unpleasant, quite a nice feeling really (Pots perversion?!) Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 1, 2014 Report Share Posted May 1, 2014 My son had to go off midodrine for a few weeks because it was not keeping up his blood pressure. He tried the other medication you named for about 4 weeks and then had to switch back to the midodrine. The midodrine has worked like a charm ever since. Quote Link to comment Share on other sites More sharing options...
andybonse Posted May 2, 2014 Author Report Share Posted May 2, 2014 Update, I am very happy, took a quarter this morning didnt feel terrible like i do usually everyday at that time, took a half a bit ago and im not light headed or dizzy at all so clear its amazing??? I can breath, walk, HR not high. not 100% but **** what a difference!?!?Maybe its working better this time as im on florinef, just a pain it wares off so fast Quote Link to comment Share on other sites More sharing options...
Raisin Posted May 3, 2014 Report Share Posted May 3, 2014 Yay Andy! Hope it continues to work for you! Quote Link to comment Share on other sites More sharing options...
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