Hoshistorm Posted July 28, 2012 Report Share Posted July 28, 2012 Hello, my name is Chiara (Key-are-a). My doctor has said that she is sure I have dysautonomia. I have been having all of the symptoms. Last week Sat. I fainted twice and wound up in the ER. This week Monday, I fainted and chipped my right wrist bone. I am very annoyed. I have been feeling bad for quite some time. Many different doctors over the years have either said nothings was wrong, or that it was all in my head. I am relieved to finally have an answer, but I am nervous. A lot of the time my vitals do not show what is really going wrong. Next wed. I see the cardiologist for my Tilt Table Test. I am afraid that what has been happening will not show up with the test. What can I expect, also, what do they do if your TTT comes back negative? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 28, 2012 Report Share Posted July 28, 2012 Hi,Welcome to the board. Sorry to hear you're going thru this. I don't know what they do if your ttt is normal. But, if you haven't already it might help if you start tracking your bp and hr while standing, sitting and laying down.You can do your own poor man's tilt table test too. Watching your glucose can help you understand what's happening too. Hypoglycemia can be relatedto dysautonomia. These tools won't cure you but they certainly helped me understand what was happening. My hr and bp are within normal range all the time but I fail the ttt everytime. Tc .. D Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted July 28, 2012 Report Share Posted July 28, 2012 Hi Chaira! I am new to the group as well, but have dealt with this stuff most of my life. I am sorry that you are running into the idiot medical contingent that thinks that we are all making it up, or stressed out. I am glad that you are getting your TTT done. My vitals don't reflect how awful I feel more often than not. Hang in there. Hopefully you will get a result that will bring you answers and not more questions. Let us know how it goes! Becca Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted July 28, 2012 Report Share Posted July 28, 2012 I took my hr at home, sitting around with the pulseox and then stood up. It went from 60 to 136 regularly, and I repeated it several times. My doc tried to do a poor-mans tilt, but of course I wasn't super symptomatic (it was cold in there and he didn't do it long enough). I ended up videotaping the pulseox so he could see what happens with my cell phone. I took it in and he was like "oh yeah, you're right, that's weird". I was still nervous that I wouldn't be symptomatic on tilt and be sent home with one more xanax script for my anxiety, but my pulse difference was more than 80 at 10 minutes, so my symptoms definitely came through on tilt (took awhile, though; more than 2 minutes before it went from 56-99 and then 135). I think it's important to make sure they keep you on tilt long enough; not everyone responds right away, and I don't if it's cold. Also, like everyone said, it may not be POTS but still dysautonomia. Lots of stuff can cause vasovagal syncope. Quote Link to comment Share on other sites More sharing options...
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