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dysautonomia

Posted: April 30th 2009

dancer21

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I was diagnosed with dysautonomia about 4 months ago. I get dizzy, light headed,low blood prezssure, and some other issues. on sunday i was dizzy and fell and broke my wrist. I have to be in a cast for at least 2 weeks but probably longer. I was just wondering if  any of you know of any thing that can help. I am on propanalol to try to regulate my heart rate but i do not think it helps much. I am going to see my cardiologist in 2weeks. Thanks in advance for the help!

Haley
beck7422's picture

Do you know how to meditate?

Submitted by beck7422 on Sat, 05/02/2009 - 3:43pm.

Do you know how to meditate? When I get dizzy, I take a deep breath, center myself, attempt to feel my body and where it is positioned in the room, and then use my memory of the room to move around. This often requires walking with my eyes closed to help deal with the dizziness and blurred vision. I also have a walking stick that helps me figure out where the ground really is versus where I think it is. I also use repetitive mantras to help me concentrate. A famous one you might recognize is "Left, Left, Left, Right, Left". It is from movies about the Army. :) The pacing is great for helping me figure out how to place my feet. I have some other mantras that I learned as a child in another languge that work even better for me.

I have never thought about

Submitted by dancer21 on Sat, 05/02/2009 - 8:28pm.

I have never thought about meditating but maybe ill try it. I think at this point I will try anything. Haley

Hi Haley. I can relate. I

Submitted by sarbata on Tue, 05/12/2009 - 4:18pm.

Hi Haley. I can relate. I have disautonomia, actually I have POTS. That is Postural Orthostatic Tachychardia Syndrome. That means when I stand, sometimes just sit, my blood pressure drops, and my heart races. My blood oxygen level drops too, but that might be unrelated. As I understand it, my heart has to work harder/beat faster in attempt to keep my blood pressure from getting to low. Its got to make sure the blood still gets to where its most important (the brain, organs). Have you ever passed out because of your disautonomia? I'm on a very low dose of a beta blocker, Bisoprolol Fumarate 5mg three times a day, to keep my heart rate from getting to high. It works. But if it does drop my BP in general. So I take Midodrine (aka Proamatine) to keep my BP up. I currently take 20mg three times a day and in the past required more. I've been taking it, at different doses for 6 years with no ill effects. I also run IV's daily for other reasons, and I think they raise BP. If your in a crisis situation, eating salty food then drinking a lot of water can help bring your bp up. I have seen an autonomic specialist in the past. But now, it is managed by my primary doc, cardiologist, & neurologist. Of course, I'm not able to walk. I should say it's managed enough that I can sit in my wheelchair, which has to tilt & recline because of my POTS. There are other meds, you have to have a doctor that knows and can help you try them to find the best fit. Best of luck to you, Sarah

How did the cardiologist

Submitted by smileyface on Fri, 07/31/2009 - 6:25pm.

How did the cardiologist visit go? I have POTS too...let me know if you need help in any way managing the dysautonomia. I'd be happy to help/direct you to knowledgeable doctors in your area...