Friday, February 5, 2010

How Do You Get Dysautonomia?

Wire Frame'd HeartImage by Bob.Fornal via Flickr

Today I want to talk a bit about how you get dysautonomia. Let's start with a tidbit from the National Dysautonomia Research Foundation:
Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.
I believe that I have been living with dysautonomia for at least 12 years, but it wasn't until 2007 that I was "officially" diagnosed with the disorder. Several doctors misdiagnosed me with panic or anxiety disorders before the true cause of my symptoms was identified (see my post from yesterday to get my take on this issue.)

Here is a list of factors that can lead to the development of dysautonomia, adapted from the dysautonomia article at Wikipedia:

  • Genetic factors - often results in the most severe cases of dysautonomia
  • Hereditary connective tissue diseases (i.e. Ehlers-Danlos Syndrome)
  • Exposure to chemicals (i.e. chemotherapy for cancer treatment)
  • Viral illness (Hepatitis C?)
  • Compression of important arteries and/or nerves (Thoracic Outlet Syndrome?)
  • Pregnancy
  • Diabetes and other autoimmune disorders
  • Parkinson's disease and other degenerative neurological diseases
  • Physical trauma or injury which damages the autonomic nervous system
  • Brain injury
As you can see, there are many causes of dysautonomia. My doctors hypothesize that the cause of my dysautonomia was the chemotherapy I received during my leukemia treatment 22 years ago. Because I am a first generation cancer survivor, which chemotherapy drug(s) caused the damage, the exact mechanism of how the damage happened or what part(s) of my autonomic nervous system where damaged is currently unknown. Research has only just begun in this area.

While my cancer treatment history is probably the primary reason I have dysautonomia, I have highlighted some of the other medical conditions I have that appear on this list. Seems I have three additional medical conditions that are risk factors for developing dysautonomia. I wonder how my chronic Hepatitis C infection, Thoracic Outlet Syndrome and Type 2 diabetes affect my dysautonomia. At the very least, being vigilant about keeping my blood sugar under tight control seems important to prevent my dysautonomia from getting worse. This is also one of the reasons I want to treat my Hepatitis C infection when antiviral drugs become available. As for Thoracic Outlet Syndrome, there doesn't seem to be much I can do about it: surgery to attempt to correct the problem isn't an option for me.

That said, I know from my undergraduate coursework in Kinesiology that repairing a damaged brain and nervous system is well beyond the scope of today's medical science. How things like menopause and aging will effect my dysautonomia symptoms is also unknown. All my doctors can do is treat my symptoms, but sometimes treating one symptom makes other symptoms worse or causes side-effects.

I also want to mention here that there is a prominent doctor and researcher from Mexico City, Dr. Manuel Martínez Lavín, who believes that dysautonomia is at the root of fibromyalgia. You can read more about his theory
here. I believe that Dr. Martínez Lavín is on to something and I am the perfect case study to prove his theory.

To end these series of posts on dysautonomia, my next blog entry will attempt to explain what the autonomic nervous system is and does. Stay tuned!

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Dennis Pyritz, RN said...

Happy New Year! I am working on improving my blogroll- Cancer Blogs - at Being Cancer Network where your own blog is presently listed. One of the things I want to do is to improve the 800 blog entries, making them more useful for readers.

Check to see if information is correct. Please let me know your specific cancer diagnosis - the medical term. Also the year you were diagnosed and anything else you think is relevant for the listing such as a transplant. If you have written a book or memoir, I can feature it in a special Cancer Book List section. Please include the name of your blog in the email so I can put the information in the correct listing.

It would also really, really help if you could let me know of any cancer blogs that are not on my list. Thanks in advance.

Cancer Blogs I & II has been a very popular (over 8000 visits) and valuable resource for folks. It allows people to view what others with a similar diagnoses have gone through. And it brings additional attention and traffic to survivor’s blogs. It is helping to build a strong, vibrant community of survivors.

Please consider adding Being Cancer Network to your blogroll if you have not already done so. I am now following you on Blogged.

Please see my January 10 post - New Year’s New Face - for additional changes in the website. Wishing you a happy and healthy new year.

Dennis Pyritz, RN
leukemia & transplant survivor


Shriram INC. said...

madam your blog made my day...it is quite refreshing to see the triumph of human faith over disease and fate. i guess that you have found a way of living life to the fullest despite all odds. take good care.