Sharon’s Story written by Sharon for publication.

In January 2013, after a short 3 day cruise which consisted of one night of rough seas, I lost my life as I knew it.  Immediately following the cruise, I was excessively sleepy and tired with extreme headaches and nausea.  In addition to those feelings I also felt a constant sensation of movement which I described as being like a buoy on water.  Eventually diagnosed with Mal de Debarquement, as you may be very familiar.  Within two months of going on the cruise I had to quit my job. Unable to multitask, concentrate, look at a computer screen, or maintain the ability to perform simple tasks such as taking phone messages.  After seeing many medical professionals; doctors, neurologists, vestibular specialists, balance rehabilitation therapists, etc.  locally and away such as Duke Medical in Durham, NC and Wake Forest Baptist Medical in Winston-Salem, NC, and trying a variety of drugs, I began to lose hope of ever being rid of this horrible condition.  It affected every aspect of my life, from working, interacting with family, especially grandchildren, and interaction with friends.  A deep, dark depression took over.

In May of this year, 2017, my husband read a blog regarding the treatment of Mal de Debarquement with GyroStim.  He nor I had ever heard of this.  He quickly encouraged me to contact the Asheville Balance & Vestibular Center to inquire.  Jordan, GyroStim Tech, spoke with me regarding the treatment and noted during our conversation that an MdDS patient they had recently worked with in the GyroStim reported 90% improvement after just 1 week of treatment.  I quickly said I would gladly take a 90% improvement or anything close to that.  Not being terribly far from where we live it seemed like a viable option.  And boy was it.  I scheduled treatment for the last week of June.

Upon arriving for treatment, I was greeted by Jordan and shortly after by Dr. Kim Fox.  My balance was tested using a specialized piece of equipment called a Computerized Dynamic Posturography (CDP).   I did not score well, my score being a 62, well below the average for my age and gender (50 years old and female).  Following this test, Dr. Fox and Jordan administered the first GyroStim treatment involving multi-axis rotation movement while using a laser pointer to shoot at targets around the perimeter.  That first day was a somewhat simple exposure to the Gryostim and I felt quite better.  The 2nd day the GyroStim treatment intensified and I stopped buoying completely.  It made me incredibly tired as I slept between and after treatments.  Unfortunately, the next morning at breakfast the buoying returned.  I think it had to do with the loud environment.   The 3rd days treatments were more intense, and again the buoying ceased.  Headache, nausea and fatigue increased so much so that all I could do was sleep between and after treatments.  By the afternoon of the 3rd day of treatment I was an emotional wreck, literally unable to control the crying.  I did not want to return to the treatment, it stressed my brain completely.  My body and mind felt heavy, unhappy, unbelievably fatigued and stressed.  Dr. Fox showed compassion and concern for making sure that I was treated for every aspect of the Mal de Debarquement, and we made decisions to substitute GyroStim treatment in the afternoon to learn “grounding” techniques and relaxation exercises, and some other decisions regarding being medicated for treatment the next day as prescribed by my MD on an as needed basis.  Dr. Fox was spot on with her intuition as how to proceed.  On the 4th day I am happy to report that I was still not buoying, but wasn’t sure what I was feeling.  Like maybe there was some movement there, but mostly insignificant.  At that point, treatments became about trying to abate the headache, nausea and fatigue.  After the 4th days treatment Dr. Fox asked that we test the treatments a little and go out in public.  Hubby and I went to an ice cream shop early that afternoon.  I am happy to report I did very well.  After ice cream, I returned to the hotel and slept until dinner time.  Again, we ventured out to a restaurant with an outside eating area, and again I did very well.  Buoying did not return, not at all.  Still battling extreme fatigue, with some headache and nausea, we returned to the hotel where I again slept.  By the 5th day of treatment I wasn’t wanting to do GyroStim at all, but pushed through on Dr. Fox’s advice, to try and rid the headache, nausea and fatigue.  It did help, but did not completely alleviate these symptoms.  Having checked out of the hotel that morning, I slept in our vehicle until lunch time, had lunch in public and did just fine.  Meaning the buoying did not return.  Returned in the afternoon to the Asheville Balance and Vestibular Center.  No further GyroStim treatments were given.  My balance was retested on the CDP.  Much to everyone’s amazement my score jumped to 90, which I understand is very good. I couldn’t believe it. My scores were above normal for all areas of balance compared to women in my same age group considered to be “normal” (i.e. without any medical conditions).

I am happy to report it has been 18 days since the end of my treatments with Dr. Fox and there is still no buoying.  The headaches, nausea, and fatigue have gotten so much better.  I am beginning to feel more energized.  Still taking it slow though.  Maybe getting better is the same as when I first got sick.  My brain adjusting back to normal is going through the same trauma as when it first came down with Mal de Debarquement.  This is what it feels like to me.

About Cindy Beagle

I am a 56 year old who suffers with Central Vestibular Disorder and possibly Mal de Debarquement Syndrome (MdDS). Central Vestibular Disorder is a central nervous system disorder. MdDS otherwise known as disembarkment syndrome is a type of vertigo except I don't spin I ROCK. The Fatigue is overwhelming and there are many other symptoms but no cure.

4 Responses

  1. beatingthisillness

    I am so elated to read your story… So happy for your relief of symptoms.. Do you know if there are any treatments available in the Northern California Region.. ? Thank you so much for sharing your journey to overcoming our debilitating illness… Look forward to the information you can provide.. My e-mail address is teri.munyon@sbcglobal.net

    Like

  2. Marla

    Congratulations on finding some relief from the motion and improvement of your balance. I hope your headaches and nausea will go away very soon.

    Like

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