Have you heard of Dysautonomia?

buggnat · Dec 29, 2004

I have never heard of dysautonomia. What is it?

edeverges · Dec 29, 2004

I was diagnosed with dysautonomia about 9 months ago, and I've found that most doctors have never heard of this condition. It tooke me over 2 year to get a correct diagnosis. There are about 115 people in America who are diagnosed with dysautonomia, so I wouldn't expect a lot of poeple to know about it.
I'm trying to promote awareness, so if you've heard of it, please let me know so I know there is some home!!
If you haven't heard of it, let me know and I will give you some info on it.

i only know what i have read. but i do hope that you have soneone who you care share your thoughts and feelings with and spend some time with and not have to worry about a lot of things by yourself. perhaps after nine months you have learned how to deal with this terible diagnosis better than i may realize. if there is anything i can do for you please let me know. i have attached the following information on dysautonomia so that others may better understand what you are going through.

NINDS Dysautonomia Information Page

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

kt_b · Dec 30, 2004

Wow!! You did a lot of research on this topic!! Here's a summary of some stuff I've found over the past several months.

You can also go to http://www.dynskids.org and there are many links. One link tells stories of some of the kids that are members of the support group.

Overview

Dysautonomia is a medical term used to describe a group of conditions that are caused by a malfunction of the Autonomic Nervous System (ANS). Each dysautonomia case is unique to that particular patient and symptoms for the various dysautonomia conditions can range from mild to debilitating and even life threatening.

http://www.dynakids.org/Documents/newsletter7.pdf

*I hope I can promote some awareness about this condition!!*

majsgt · Dec 5, 2007

I was diagnosed in the 70's. In fact there is a doctor in Birmingham, AL, Montclair Medical Center who specializes in Mitral Valve Prolapse with Dysautonomia patients. I had been improving dramatically under his care until deployment for Desert Storm and then........

At any rate, his primary recommendation for treatment is an aerobic exercise regimen which begins SLOWLY. Perhaps 5 minutes a day and increase gradually. But NEVER miss it. Also, fluid prescription, recommending Crystal Light with added salt. I cannot recall the precise intake recommedations but I know that there is a website under Baptist Montclair for the Mitral Valve Prolapse Center and it may well be on that.

At present I see a doc here in NW Florida who is big into medications. I am not So my meds are atenolol for SVT secondary to the

MVP and Klonopin for muscle fasiculations that interrupt my sleep.

I became very ill in 97 and am just now beginning to prepare to return to work in nursing;however, I attribute the severity of that illness to the toxicity of the marriage I was in. Emotional impact on dysautonomia cannot be underestimated.

I wish you the best. Dr. Watkins nurse practitioner did publish a book on MVP with Dysautonomia that might be helpful for you partiularly since you are early in your diagnosis. Walk. Drink tons of water, crystal light with salt added and don't give up. You can improve. Yours, Barbara S. :nono: :balloons: did not mean to insert the no no emoticon Sorry.

Laura77598 · Dec 5, 2007

My father was recently diagnosed with dysautonomia. He began having fainting spells for the first time in his life when he was about 65. This was related to his blood pressure changing quickly. Another term used with dysautonomia is P.O.T.S. or positional orthostatic? transition? syndrome? I'm sorry, I forget the EXACT acronym, but apparantly it has something to do with the change of blood pressure (falling to soon) when the patient changes positions suddenly. Blood pressure meds may help you as they have gone a long way in helping my dad. It has been about a year, and my dad has not had any fainting spells on his new BP medicine. Ask your cardio doc about the best way to keep your BP stable, because that has seemed to fix it for my dad.

My data is not as clinical in nature as the other posters, and I woulen't know how to advise you to go about treating it, but when my dad got a good BP medicine his episodes stopped.

Hope this helps.

Good Luck,

Laura

majsgt · Dec 6, 2007

For awhile there the most debiitating sx was crippling fatigue which led to an additional dx of fibromyalgia, then CFS (chronic fatigue syndrome) was added as well. Interestingly enough, all three dx were cnsidered wastebasket dxs - not real - psychological. I could get no help for the longest time. I got worse and worse but I do believe that a great deal of my sx were exacerbated by a toxic marriiage and toxic step family environment. Truly. If you get a chance read Christianne Northrups book Women's Wisdom Women's Bodies (or vice versa).

Yes POTS is part of it and while it, dysautonomia was once considered rare it is now found to be fairly common. I am terrified returning to nursing after so long and giving up the security of the disability check it took two years to get but........ I am determined to try. I am feeling better and able to function 8 to 10 hours straight therefore I think I am no longer in a disabled categorey despite still having the dx pinned to me. I have only fainted twice.

As I understood it the ANS misreads external signals and the translations can lead to to quite astonishing physical reactions. e.g. You stand up? The ANS says DANGER SHE IS GOING INTO SHOCK LETS POOL ALL BLOOD TO VITAL ORGANS and there you go you are flat on the floor. My specialist here in FL has dysautonomia. Write again if you have time. Barb