Central Vestibular Disorder/Mal de Debarquement Syndrome

I thought I could write weekly regarding my Vestibular Disorder but I found it really became quite the challenge.  I was diagnosed in 2011 with Central Vestibular Disorder even though I have had this disorder since 2009.  Now it’s been nearly 6 years and I’m still rocking, bobbing and swaying.  It has been very difficult with my short-term memory, cognitive functions and daily living with this disorder.  Imagine trying to navigate on a trampoline every day of your life.  You worry constantly about falling, more for the fear of getting hurt than the embarrassment of the fall.  I have problems with going to grocery stores because of the isles.  I don’t like crowds and loud noises.  They are all triggers to make the symptoms worse.  I use spell check to assist in spelling correctly the words I want to say.  Math is very difficult for me now.  I went to school for accounting and was a Medical Practice Manager for over 20 years.  Now I am a homebody and go out only when really necessary.  I do love to drive.  Driving makes all of the symptoms disappear.  But when I have to come to a stop, my head begins to bob and sway.

They say I may have Mal de Debarquement Syndrome, but there is no cure.  I refuse to accept that and will work to beat this Syndrome if at all possible.

Doctors need to be educated that we are not crazy.  We do want our lives back and this is REAL.  Look at how long it took me to get to a diagnosis.  Before 2011, I had been to a neurologist at Duke University Medical School, a psychiatrist and an ENT.  None of them could diagnose me.  It took another ENT willing to listen, a neurologist who BELIEVES ME and a great family support system to get me to where I am today.  Admittedly, it’s not much better but knowing the diagnosis is half the battle.

More later.