The Faces and Stories of MdDS

MARLA'S MdDS CASE HISTORY 

When and Where

On February 18, 2001, I disembarked from my first cruise after spending 7 fun filled days traveling to 5 southern Caribbean islands.  Little did I know that this celebration of my 50th birthday would result in a persistent sense of rocking, imbalance and fatigue.

Diagnosis 

It took approximately one month and three visits to three different doctors, an MRI to rule out MS or a brain tumor, and vestibular testing before I received a diagnosis of Mal de Debarquement Syndrome. I am a nurse and had never heard of this rare form of vestibular dysfunction.  While most people experience "landsickness" for a few days following a cruise, I have been land locked into this for over 4 years.

Symptoms 

In the beginning, it was impossible to walk a straight line, enter stores and buildings that were lighted with florescent lighting, or work an 8 hour shift in the OR. My ability to concentrate on tasks at hand became affected and I soon became a threat to the safety of my patients.  In the afternoon, I found that I could not speak without stammering nor could I remember the names of my co-workers.  I would go home and collapse on the couch until bedtime as the fatigue had sapped me of all strength.  Six weeks post cruise, I had to take a medical leave of absence when my balance had become so impaired that I fell backwards when applying a blood pressure cuff to my patient who was lying on the OR bed.

Treatment 

I have been through Vestibular Rehab on two separate occasions, each session lasting 4 to 5 months.  This has enabled me to learn to use my vision and signals sent to my brain relating to surface conditions.  Thus, my balance has improved although it will never be completely normal as long as I suffer from Mal de Debarquement.

On my search for a cure, I have traveled to various specialists in different cities.  I have been treated by an ENT, two neurologists and three neuro-otologists.  I have had multiple tests and trialed various medications and still there is no cure.

 General Comments 

I am currently working on a limited basis and the fatigue still remains one of the most prevalent symptoms.  The rocking level fluctuates from moment to moment.  Stress, fatigue, crowds, loud noises, looking upwards, rainy weather, and too much physical activity all increase my rocking sensation.

I mourn for the loss of my past life, all the activities I can no longer partake in, but I am thankful that I can continue living my life to the fullest of my capabilities.  I treasure my old friends that have lasted throughout my illness and thank God for all the new friends I have made in the MdDS support Group.

April 11, 2005

Last modified on June 21,  2010