Nancy Braun
Mal de Debarquement Syndrome
November 1, 2004
Nancy Braun
Submission Date: August 13, 2007
Event Date: November 1, 2004
Cruise Bruise: MdDS
Bruise Location: Guayaquil, Ecuador
Age: 63
Home Town: Wisconsin
Cruise Line: Unknown
Ship: Unknown
Details:
Mal de Debarquement Syndrome - a condition you don't want to have! It
is not life-threatening, but it will change your lifestyle drastically for the
worst. My story is a little bit different since I was not on a major cruise.
My husband and I, and 12 others, travelled around the Galapagoes Islands on a small boat for eight days. Within one hour of disembarkment we were on an airplane to Guayaquil, Ecuador for the first leg of our trip home.
While on a short trip of the city, I began to feel the sensation of rocking as
though I was in a rowboat. It only got worse as the day progressed.
Three flights later, we were finally home in Madison, Wi. and I was a basket
case! My symptoms levels were a 10 and remained that high for several months. I was passed from doctor to doctor before I found one that knew what I had. Unfortunately, he knows of no cure for MdDS and has six other patients just like me.
How has this syndrome affected me? I fatigue easily and have memory problems. I used to be a whiz at math, but now working with numbers makes me physically ill.
I can no longer work on a computer for any length of time without feeling sick to my stomach. Typing this letter is extremely difficult and I am constantly correcting errors. For the first six months of this syndrome, I could not do any reading. The words were jumping all over the place and the letters were mixed up.
Now I can read for a hour or so, whereas, in the past I could read the whole night thru. I am getting arthritis in my hips from constantly catching my balance. I could go on and on.
My husband is just finishing up a trip to Alaska and will spend three weeks in Africa this fall. I would not dare take one of these trips. I am happy with my symptom levels of 3-4 and don't want to take the risk of having them increase and never lowering again.
That's life with MdDS. Thank heavens for the internet support group because that is the only place where we can go and others understand this hidden disability that we have.
A support group for MdDS sufferers is HERE
More MdDS cases are here
Mal de Debarquement Syndrome (MdDS) is a rare balance disorder that most often develops following an ocean cruise, other type of water travel, or motion experience. MdDS persists for months to years. Common symptoms include a persistent sensation of motion such as rocking, swaying, and/or bobbing. This sensation of motion is often associated with fatigue, difficulty maintaining balance, and difficulty concentrating (impaired cognitive function).
Symptoms of MdDS include persistent sensation of motion, imbalance, fatigue, sensitivity to light, headaches, migraine headaches, dizziness, nausea, confusion, memory loss, ear pain, anxiety, and depression.
Symptoms are rated on a severity scale as follows:
1-2 Sensation of rocking/bobbing/swaying is almost imperceptible. Most often noticed while walking but may also be recognized while sitting, standing or lying down. Can usually perform routine daily functions without the need for rest periods.
3-4 Rocking/bobbing/swaying sensation is almost constant but can function fairly well with occasional rest periods. The sensation of rocking/bobbing/swaying may include the perception of movement along either a horizontal or vertical axis. The floor seems to move when walking (as if walking on a suspension bridge, water bed, or trampoline). Altered balance. Cannot remain standing in a fixed position with eyes closed.
5-6 Rocking/bobbing/swaying intensity is increased. Accompanied by difficulty in concentration and/or mental confusion (impaired cognitive function). Most routine tasks become difficult to accomplish. Require periods of rest. May stumble when walking.
7-8 Rocking/bobbing/swaying is more severe and noticeable while walking, standing, or sitting. Associated with considerable fatigue. Increased loss of concentration and/or mental confusion. Balance is affected (bump into objects when walking; clumsy in handling objects; may drop things).
9-10 Rocking/bobbing/swaying is extremely severe. Balance is very poor. Require support for walking and standing (have to hold onto walls). Significant mental confusion. Impaired ability to speak. Remain in bed most of the day.
Treatment
While there is no known cure for Mal de Debarquement Syndrome (MdDS), some success in managing symptoms has been realized with medications and vestibular rehabilitation.
Most anticholinergeric medications that work for other forms of dizziness and motion sickness, such as meclizine or scopolamine, are not effective in either treatment or prevention of MdDS.
