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So Tired Of All This!


wibbleway
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I went to the heart doctor today and she again told me nothing new to try. My condition is getting worse and they believe it is going into Autonomic Failure but my blood pressure still raises sometimes when I stand and at other times is falls. My kidneys, eating, bowels, lungs are all not working well and it is frustrating. I keep hoping that the doctors will find something else wrong when in my heart I know it is just the autonomic problem. I asked her what would happen and she said they could just treat the symptoms to keep me comfortable as things go haywire. The people at Vanderbilt are wonderful and I thank God for this forum. No one else understands how we feel or how out of control our lives are. Anyway just needed to vent. Thanks for all your post. It always helps to know others out there understand. ;)

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hi cathy,

i am sorry you're feeling so down. but of course understand. it would be soooo much easier when they would find something "common" that could be treated easily, but unfortunately this dysautonomia isn't to treat yet.

does your doc allow you to try some meds? have you discussed it with her? although it doesn't help you, i know how you feel and i am very sorry that there's nothing (not much) that can be done.

wishing you all the best and take care,

corina ;)

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Corina,

Thank you for answering back. Yes, I have tried all the medicines out there. I went through every clinical trial at Vanderbilt also. I am so thankful for all the research being done and maybe one day they will be able to find the cause and cure. Meanwhile it helps to have others to talk to. Take care and thank you again for your support and encouragement.

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hiya,

sorry you seem stuck in a loop with your doctor; it can be very frustrating.

Are you able to do any type of exercise, even flat on the floor? Abdominal exercises help me a little bit with my bowels--although walking does the best for me, it's out of the question right now b/c we've had heat in the 90's for quite a while now. Sometimes riding my recumbent bike helps a little, but not as much as taking a walk. I suppose a treadmill would be a great thing for me but i used to have one and never used it. I know this doesn't address all your issues, but I figure a little improvement might at least help you not feel so 'stuck'.

Nina

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Hi cathy. I know and understand how frustrating it can be to be so sick and just keep hearing from the doctors that there is nothing they can do. Been dealing with this all my life in one form or another. Went to all different doctors where I live, and even traveled out of state quite a few time to specialists to get some answer. Even saw Dr Grubb. He is wonderful and explains alot about the condition but I still was left without a solution. I am on 2 different meds to control symptoms, but I really don't think there will ever be a cure. When you are dealing with an autonomic dysfunction there is just so much that can be done. Having people that can relate, and knowing that I am not alone has really helped me.

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