Betty Pecore
Mal de Debarquement Syndrome
Norwegian Cruise Lines - September 25, 2001
Betty Pecore
Submission Date: August 13, 2007
Event Date: September 25, 2001
Cruise Bruise: MdDS
Bruise Location: Seattle, WA
Age: 65
Home Town: Pennsylvania
Cruise Line: NCL
Ship: Unknown
Details:
In what seems to be a more common problem that previous thought, another MdDS victim has come to Cruise Bruise to tell her story. Word is passing among those in support groups, and one by one they are coming forward to tell the world, all the safety in the world will not protect a passenger or crew member from MdDS. To date, there is no way to tell if a person is likely to become afflicted with this condition, or not. Her story follows below.
I'm not sure of the name of the ship except that it was a Norwegian
Cruise line on a trip to Alaska. It was the first day that the Norwegian Cruiseline sailed after the September 11, 2001 attack on the WTC [world trade center].
I took Dramamine while on the ship as I can get seasick, but had no trouble until the cruise had ended. I noticed that I was rocking, and assumed it would go away. When it didn't, I went to my doctor who diagnosed a virus of the ear.
My symptoms worsened, so I went to the doctor again, who diagnosed me with loose crystals in the ear, and sent me to Rehab. I described my symptoms to my therapist, who immediately didagnosed me with Mal de Debarquement Syndrome resulting from my Alaskan cruise.
I had also gone to a local ENT [ear, nose and throat doctor], who sent me for an MRI [Magnetic resonance imaging]. I was due for more tests the following day, when the ENT called me and told me not to bother coming in as he had found the trouble; the MRI found a tumor in my cerebellum. He told me to get to a neurosurgeon immediately. He then called my PCP [primary care provider] who told me he would "keep me pain free". I was terrified that I had cancer.
I called a friend who was a neurosurgeon and he saw me quickly and diagnosed me with a non-malignant meningioma brain tumor. Then he put me through every test he knew of to prove it. All tests were negative. I then made an appointment with a balance specialist in Pittsburgh.
My symptoms were an 8 to 10 when I got to this doctor. He tested me in the morning and diagnosed me with "a classic case of MdDS" in the afternoon. He prescribed Clonazepam, .5 twice daily. The medication
immediately lowered my symptoms to a 2-4.
I was told that I should never travel again, and definitely not on any ship.
I was encouraged to walk, and to keep very busy, and also to maintain as much of my usual life as I could. I've tried hard to follow these recommendations, but the quality of my life has been strongly affected.
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.
