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About autonomicreg

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  1. New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down.
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