Jeanne Walsh
Mal de Debarquement Syndrome
June 14, 2005
Jeanne Walsh
Submission Date: August 19, 2007
Event Date: June 14, 2005
Cruise Bruise: MdDS
Bruise Location:
Age: 35
Home Town: Colorado
Cruise Line: Private Boat
Ship: N/A
Details:
It was June 2005 my family and I flew to Paris and back home to Colorado. I was fine until a couple hours after I got home I suddenly had to hold onto my kitchen island. For 3 weeks after that I felt like I had a couple of glasses of wine in me... 24/7.
I'm not really sure exactly long it lasted because one day I just realized "hey it's gone!!" Fast forward to July 14th of 2007 my family and I went on a neighbors lake boat. We had a great day, got on the boat around noon to about 6:00. We went out to dinner and then drove the 2 hours home.
Not until I came home, again in my kitchen I felt as if I would fall over. It has been 5 weeks and one day and this feeling of lack of balance is still with me. After googling "dizziness after boat or plane" I self diagnosed myself with mal de Debarquement.
I went to my GP a few days ago and he had never heard of this. He is sending me to a neurologist who can't see me for another month and a half. This is affecting my thinking as I can't focus on any task or pay attention to what anyone is saying.
I seem to forget things much easier, I get dates/times wrong and have been putting things where they don't belong. I will think to myself to go do a certain task and then seconds later can not remember what that task was.
I have been ignoring my children to where they've pretty much had to take care of themselves. I avoid all social functions because being around alot of people seem to make this worse and going into any store is sensory overload for me.
I seem to be okay when driving or riding passenger in a car. My brain must think it is back on water again and is quite happy being there. I've since had to hand off volunteering with my kids school because I don't feel that I can handle anything or give 100% to what is needed.
I know there are much worse things out there to have and I am thankful that I am otherwise healthy but I really want to get the word out to all the doctors out there who have never heard of this.
It is really frustrating going to the doctor and having to tell him what you have. I did not get this by going on a cruise and I am so dissapointed that I may never be able to go on one.
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.
