fotofem

I am definitely having those issues with Midodrine!  I took it to mean that my BP was falling like a rock but suddenly I started to wonder if I have a huge tolerance problem.  I've increased my use of Fludrocortisone, no satisfaction yet.  It is disturbing that my cardiology docs say Shut up and take your medicine  when I ask What's my diagnosis?  What's wrong with the data I'm showing you?  And disturbing to be told these are the only 2 meds available even if you get an answer as to the cause from a Dysautonomia specialist.  "The treatment will still be the same."  -->For those of you who have seen such a specialist, is this really the only treatment they advise?  My next doc [at Stanford] has March 2020 as his first new patient appointment, and I don't know how I can make it to there.  What else should I be doing?

My low BP problem started abruptly suddenly when I had a (single lifetime) kidney infection.  I went from chronic "low normal" to needing Midodrine 2.5 and testing with a cuff during the day.  It has continued to head towards the 60's/xx and I might have had a long period of unconsciousness without Midodrine.   But now I am frightened by Fludrocortisone, seems to be a wild card but I need something to put a barrier, like a basement below which my body won't go.  I take Lyrica and Doxepin, and I'm going to try to cut back.

On 10/25/2019 at 7:43 PM, autonomicreg said:

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.