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Thread: Severe dysautonomia.. pure failure.. cannot find help :(

  1. #1

    Question Severe dysautonomia.. pure failure.. cannot find help :(

    I was diagnosed with dysautonomia and have such severe symptms such as excessive sweating, feeling too hot or too cold, constant fainting spells, my breathing is either shallow,labored or stops at times.. even wide awake. I have heart palpitations and BP issues but inderal has helped some. I still faint alot, especially if I get up too fast or bend over. bending over also makes my breathing STOP totally. I can't find a doctor ANYWHERE in minnesota ( even the U of M or mayo) that will help me, despite my nuerologists refferals and pleas to them. my heart is good aside from beating either too fast or too slow ( holter test confirmed this). Since I can't get help in minnesota ( and am more or less bedridden) I wanted to go to BIRMINGHAM AL to the autonomic disorders clinic but my family has forbidden it, despite my being 38 and mentally competant. mom says she will rent my room out if I go. can someone on this forum please help me?? where else IN MINNESOTA can I go for lifesaving help??? I was told I won't make it to my mid 40s if I don't get help. I am getting worse each yr.
    Knowledge is Power!

  2. #2


    I also have Severe GI issues such as constant diarhea,stomach emtyping too slow or too fast, never ending hunger,nausea,heartburn/GERD,abdominal pains severe enough to warrent percocet and lomotil daily. god PLEASE PLEASE help me or put me out of this misery.
    Knowledge is Power!

  3. #3
    Distinguished Community Member tic chick's Avatar
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    Oct 2006


    hey acc_gal !

    you have the very prestigious mayo clinic right in your own state. here is the url for their dysautonomia page:

    you can make an appointment right through the clinic site on the internet

    i just saw that you went to the mayo clinic. maybe another try with the right doctor?

    here is a list of doctors from the National Dysautonomia Research Foundation:

    acc_gal, yes you are 38. i think your mom might be bluffing because she might be scared of what will happen if you go alone. maybe try and engage her to go with you! tell her how you feel and that you want help! if she won't go, try and find a supportive family member to go with you. it would be a little vacation.

    you know you have a rare problem. you have to find a doc that has treated people like you. i really feel for you and i think you have to do what you have to do. tell your mom if you get help she would worry less about you and your probs.

    go for it. it is your life.

    take care of yourself and i care what happens to you because you are a person and you are intelligent and a fighter!

    Last edited by tic chick; 05-11-2013 at 09:19 PM.
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