Kham Posted August 25, 2013 Report Share Posted August 25, 2013 I am brand new to this board and am happy to have found a place where it seems like others will understand my struggles. Just last month I was diagnosed with Ehlers-Danlos Syndrome and some kind of Dysautonomia. (They don't know which kind yet, just know it's not POTS.) Anyway, I am currently on the medication merry-go-round. My bp is really low all the time and so is my heart rate. I am currently wearing a holter monitor so that docs can see if there are arrhythmias or whatever. My bp/pulse are so weird. I can have a reading of 112/65 (high for me) and a pulse of 47 while I am actively doing housework or something. Then, the minute I lay down to rest (because I'm constantly tired) my bp will go down to 94/52 and my pulse will go up to 65 or 70 and I can feel my heart beating out of my chest. It does that all night long while I sleep and drives me crazy. I don't know what to think. Everything is so opposite of the literature I read on what's supposed to be "normal". My numbers seem to be in the normal range...but I sure don't feel normal. I shouldn't be feeling my heart coming out of my chest at 70bpm. Sounds crazy I know. I am currently on Florinef to try and raise my bp. It makes me VERY CRABBY and I am not a fan so far. However, the one thing it does do is allow me to stand for longer periods of time without my bp bottoming out. Which is good since I own a dance studio. I teach little children tap, jazz & ballet. It has become very difficult to teach. My balance is shot (***** when teaching ballet) and my stamina is non-existent. I try to stay hydrated but I admittedly drink half-caff coffee a lot to try and get through my day. Any help, guidance, support would be much appreciated for a struggling newbie. This whole thing seems never ending and I am not sure how to get used to my new "normal". I am a shadow of the person I was just two years ago. I WANT MY OLD SELF BACK:( Not going down without a fight!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 25, 2013 Report Share Posted August 25, 2013 I am not sure what advice to give at this point but wanted to say welcome to the forum. This is a great site. Another great resource for EDS information is the Ehlers Danlos National Foundation site. Quote Link to comment Share on other sites More sharing options...
corina Posted August 25, 2013 Report Share Posted August 25, 2013 Hi Kham, welcome to the forum, though I'm sorry you have reason to be here! Hope you will find the answers to your questions, there are so many caring, understanding and helpful people around here! Quote Link to comment Share on other sites More sharing options...
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