Bigskyfam Posted February 5, 2014 Author Report Share Posted February 5, 2014 So glad I'm not alone. Scared to try florinef. Even more scared to try midodrine and BB . Wish my doc would listen more. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 5, 2014 Author Report Share Posted February 5, 2014 I want to investigate a bit more Quote Link to comment Share on other sites More sharing options...
Hope Posted February 6, 2014 Report Share Posted February 6, 2014 Meds after tilt table test. No subtype yet. I'm on the waiting list for Dr. Grubb though. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 6, 2014 Author Report Share Posted February 6, 2014 Dr grubb sounds like a popular guy. Did you have trial and error with meds? Quote Link to comment Share on other sites More sharing options...
Hope Posted March 3, 2014 Report Share Posted March 3, 2014 Bigskyfam, I'm so bad at keeping up with these posts, sorry! I did have some trial and error with meds. The first beta blocker gave me terrible headaches. Then I had to figure out how much midodrine to take in a day, because if I took the recommended amount it would give me chest pain. Any anti anxiety meds I've tried haven't worked out. Xanex makes me shake bad, like tremors. Ativan lowers my bp all the more. Zoloft gave me panic attacks. I have some other stuff in my drawer that was prescribed that I didn't even take, like Amantadine. That was from my neurologist and was suppose to help with fatigue, but it's a stimulant. I actually consulted my cardiologist on that and he told me not to take it as I am already tachy.Dr. Grubb does sound like a popular guy for dysautonomia, but I'm not even sure I want to make the trip. I seriously don't think he will be able to do more than anybody else that I've seen so far except possibly give me a more definite diagnosis. And I really do not want to do any more testing. I am currently about 75% better than I was 2 1/2 years ago and although I would like to be able to walk farther, ride my bike, work etc, I am currently happy with the progress I am making. I don't think this will ever go away for me. I think it's just about managing it the best I can. Quote Link to comment Share on other sites More sharing options...
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