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leeloe's Achievements


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  1. Hello everyone I am a long time reader of this forum. I'm always impressed by the knowledge that so many of you have, that I finally decided to sign up and see if anyone might have some input for me. I guess I should start off by saying I've been informally diagnosed with dysautonomia by an electrophysiologist. He put me on a beta blocker with no further testing. The beta blocker lowers my pressure and heart rate for a minute or so but it is quickly over ridden. However I can't seem to make this doctor understand this, because he can't be bothered to wait 5 minutes to check for himself. At 5 minutes of standing a heart rate of 145 and bp of 160/100 is not atypical. He insists I have orthostatic hypotension. He gave me florinef and it nearly blew the top of my head off from hypertension. Then he wanted to try midrodine (sp). I didn't bother filling the script. Now I'm labeled as noncompliant and requested to find another doctor. Does this mean I have Hyper pots? And is all Hyper pots caused by mast cell issues? There seems to be such confusing info regarding this. i know I feel worse on the beta blocker but it has stopped what i assumed were adrenaline rushes to my gut area on standing. But now I get dizzy and have headaches. I can only manage to be on my feet for approx. 2 minutes. I sit in the shower. I do notice my legs turn red in the shower but they don't seem to just regularly, though my legs are weak and my feet ache. I was diagnosed with fibromyalgia years ago. My entire digestive tract feels stiff, for lack of a better word, and standing just intensifies it. I have chronic constipation, major stomach bloat, and even esophageal spasms. All this is constant, maybe varying in intensity but never going away. I have a diagnosis of anxiety which I don't deny but I feel the health problems are the underlying issue. Having said that however, the last few years have been very traumatic for me and i do feel much worse. An ssri as been recommended by one doctor but another doctor said it would make me worse. I am frightened to start a drug that may make me worse that I won't be able to get off. I am just so lost, I don't know what to do. One other odd thing the docs have no idea about: If I drink Sprite or Kool-aid I have to pee almost immediately and its a large amount, and colorless. When I drink water it takes hours to come out and its a scant amount, dark and concentrated. Is there anyone here who shares my symptoms? All opinions and input are welcome. Thank you! Lee
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