About Me

I am a 57 Year old Married Female with Central Vestibular Disorder/Mal de Debarquement Syndrome.  I was diagnosed in 2011 but have had this since 2008.  MdDS is a persistent and long-lasting disorder of perceived motion and related imbalance that most often develops after an ocean cruise or other type of travel or motion experience.  But, it may also develop spontaneously.  In my case I have cruised on 4 occasions.  My last 2 cruises I had my warning signs.  I developed MdDS for a period of about 6 months after each cruise.  The last 2 cruises were on rough seas.  But, it was after I had surgery in 2008 and getting up for the first time that the boat was sailing again and has not stopped since.  This is a debilitating disorder that affects not only me but my family and my personal life.  It is difficult to function on a daily basis.  Some days are better than others but some days are very rough.  I worked as a Medical Practice Manager for over 20 years and my background was also Accounting.  My cognitive function is poor, math skills are now poor and also my communication skills are not what they use to be.  I have a problem with my short-term memory.  Spell check is now my best friend.  Lighting must be low, no crowds and no or very low noises please.

This is not life threatening but is certainly life altering.  Doctors don’t know much about this disorder and only 3 doctors to my knowledge are doing research.  It is listed as a “Rare Disease”.  The last day of February is Rare Diseases Day and June is Mal de Debarquement Syndrome Awareness Month.

2 Responses

  1. Eric

    A relief to read a blog about someone suffering from the debilitating effects of vertigo. I was diagnosed with migranous vertigo in 2012. The onset of it was actually in 2009 while I was at work. Because of inadequacy in insurance (they kept wanting me to go to in network neurologist who did not know how to treat it) I was finally allowed to see the proper otoneurologist, the only specialist who knew how to treat it. Now fast forward to today. Three weeks ago the vertigo broke through the therapeutic level of the medication after having a migraine. It basically rendered me helpless. I had to take time off from work. Well, a insurance snafu denied me seeing the otoneurologist. I couldn’t go back to work until I could see him. I had been in contact with work keeping them informed that I couldn’t go to the Dr until the insurance approved it. I informed today that I have been terminated because of not being able to show up to work. Oh the irony. I work in surgery in a hospital.


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