Monday, January 11, 2010

Vanderbilt Dysautonomia Clinic

Well, tomorrow I am off to Nashville, TN. They have one of the only Dysautonomia clinics in the country. For those of you who do not know what this means, Dysautonomia is the dysfunction of the Autonomic Nervous System (ANS). The ANS controls all the bodily functions that do not require conscious thought, such as heart rate and blood pressure and digestion. This is very common in ACM patients because the cerebeller tonsils crush the brain stem in Chiari.

I have been diagnosed with Inappropriate Sinus Tachycardia (IST), POTS, and slow motility in digestive track. I can't really exercise or take a lot of stimulus. My heart races if I watch an action movie, for cripes sake, and that is on heart pills!! I want to know if there is a medical reason other than Chiari. Perhaps there is a better treatment out there than the 6 different pills I take a day just to function like normal folk. I know a lot of you know what I mean. Chiari crushes the brain stem which is the keeper of all nervous system function. I still have peripheral neuropathy in my foot. Most likely, that will never go away. I would just like to be able to go on a walk without running out of breathe and feeling like my heart is going to beat out of my chest! I saw Avatar a couple of weeks ago. (Great movie, by the way.) I had to take a Xanex to watch it because the action excites my heart and sends it into what idiot doctors said for years was a panic attack. Man I am so glad I am past that stage of diagnosis!! If one more doctor told me that I was just a hysterical woman on her period and that I just needed to calm down while my heart rate was 180 from standing up, I would be typing this from prison -- LOL!

So anyway, I will write about my experience at Vanderbilt when I get back from TN. Wish me luck :)

Oh, and PS, I have had this appointment for over a year! That is how sought after they are and how difficult it is to get in. I have high hopes they will be able to help me. My lips to God's ears.

1 comment:

Anonymous said...

I suffer from almost exact same thing. I am scheduled for decompression w/ Dr. Di in Dec. My heart rate is regularly 170 with just standing or changing positions. Raising my arms really exaggerates symptoms. I have also been diagnosed w POTS from Cleveland clinic.

I really understand what you mean by saying you just want to do the everyday things.....

My first symptoms started when I was training to run 5ks so not even tolerating walking at times is frustrating.

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