Terri Gibson
Mal de Debarquement Syndrome
RCCL Splendour of the Seas - February 13, 2006
Terri Gibson
Submission Date: August 16, 2007
Event Date: February 13, 2006
Cruise Bruise: MdDS
Bruise Location: Galveston, Texas
Age: 44
Home Town: Texas
Cruise Line: RCCL
Ship: Splendour of the Seas
Details:
I am a 44 year old female who has been suffering from Mal de Debarquement Syndrome since February 13, 2006 as a result of a 4 night cruise.
While at sea, we experienced 40 mph winds and 15 foot waves for about a 24 hour period. Ever since we have returned from that cruise, I feel like I am still "at sea". After seeing my family doctor, an ear, nose and throat doctor, a neurologist and a neurotologist and numerous tests, I was finally correctly diagnosed by a neurotologist with this rare balance disorder called Mal de Debarquement Syndrome (MdDS). By the way, all tests results are normal, and I am otherwise a perfectly healthy woman who has never even been in the hospital.
Basically, my brain has failed to readapt to being on solid ground. Having this syndrome has totally changed my quality of life. When I walk, I feel like I am walking on a trampoline. When I lay in bed, I feel like I am on the cruise ship just rocking from side to side. Standing in one place, I have to hold onto something to keep from losing my balance. When sitting still, I feel like I am on a boat rocking to and fro.
This syndrome affects my ability to concentrate, has affected my short term memory, my ability to multi-task and causes considerable fatigue. This has also affected my ability to work and has caused me to take medical leave from my job. When in a moving vehicle, the rocking actually stops. When stopped in traffic or at a traffic light, it starts back up. This syndrome has definitely changed my quality of life and all of this as a result of a 4 night vacation that was supposed to be relaxing.
By doing some research on the internet, I managed to locate others globally that have this rare syndrome as well. We communicate with each other via a Yahoo support group which has recently grown to over 500 members.
Basically, there is really no "cure" for this syndrome, so my doctor has been trying various drugs to see if anything will suppress the rocking motion and help with the other symptoms. With each of us that have this disorder, drug therapy can be different due to what our bodies can tolerate. Some medications suppress the vestibular system and cause a sedative effect. Anti-depressants are also used to treat for possible chemical imbalance and to help cope with this disorder.
There is a video from another Cruise Bruise story that explains this condition. The video is HERE
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.
