Marla Cruise
Mal de Debarquement Syndrome
RCCL Monarch Of The Seas - February 18, 2001
Marla Cruise
Submission Date: August 12, 2007
Event Date: February 18, 2001
Cruise Bruise: MdDS
Bruise Location: Caribbean
Age: 50
Home Town: Iowa
Cruise Line: RCCL
Ship: Monarch Of The Seas
Details:
This former cruise ship passenger came to us, to tell us there is a support group for Mal de Debarquement Syndrome, and let us know she was on a very large ship, and has been disabled by the disease for over six years, as of the date of this posting.
I took my first cruise from Feb. 11 - 18 in 2001 onboard the Royal Caribbean Monarch of the Seas.
While waiting in the San Juan Airport for my flight back to the States I noticed that I was feeling the motion of the ship. When I got home I removed the scopolamine patch I had worn during the cruise to
prevent nausea and went to bed.
When I woke up the next day the rocking sensation was terrible. After two weeks I finally saw a doctor and she said to wait a little longer.
One month later I saw my primary care physician and he ordered
tests to rule out MS or a brain tumor. These tests were normal so two weeks later I was seen by and ENT doctor and he performed more tests and determined that I had Mal de Debarquement syndrome.
I am on Disability now and have had to have a total knee operation in the last year due to the constant imbalance and dizziness I suffer from on a daily basis. I fatigue easily and have memory problems.
I am a member of a support group for people with MdDS and it is our goal to educate doctors and the general public about this rare syndrome. We are hoping to find a researcher who can help unravel the mystery that surrounds the cause and treatment for our condition.
We would like to see the cruise lines post a warning for their passengers too but doubt that this will ever happen.
Cruise Bruise has learned that while the number of MdDS sufferers is unknown, in recent years an international support group has formed, with 557 members in America and about 250 in the UK.
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.
