Lynn Sedge
Mal de Debarquement Syndrome
Cruise Down The Nile - March 30, 2005
Lynn Sedge
Submission Date: August 15, 2007
Event Date: March 30, 2005
Cruise Bruise: MdDS
Bruise Location: Luxor
Age: 54
Home Town: Rochester, Kent, England
Cruise Line: Unknown
Ship: Unknown
Details:
We had a week's holiday cruising on the Nile in Egypt and the journey
to Luxor started very early on the Wednesday morning, we drove to the airport and due to bad weather the flight was delayed so we arrived to board the boat much later than planned. We attended an arranged meeting with the company rep, had a meal and went to bed.
It was an early start, 5:45am, the next morning and we visited one site in the morning returned to the boat for lunch and were out again in the afternoon. This pattern was followed for the rest of the week, travelling on the main boat, on coaches to sites and smaller speed boats. We also took a balloon flight on the final morning before travelling home.
It was a very busy week and although I felt we were moving when we were actually moored a couple of times during that week I ignored it. I was enjoying the holiday, visiting the different temples, watching the scenery along the Nile and meeting new people. Although it was a very smooth journey it was very noisy on board as the engines were on all night and when docked we were surrounded by other boats also with their engines running and I found it very difficult to sleep.
When we arrived home I just thought I needed to gain my land legs but the feelings persisted and got worse. I saw an emergency doctor who thought I had vertigo and gave me some medication. This failed to do anything and I visited my GP who also believed it was vertigo, after six weeks and different types of motion sickness tablets he admitted defeat and contacted the ENT department in the local hospital.
The ENT consultant diagnosed Mal de Debarquement Syndrome saying there was no medication which would help but that Vestibular Rehabilitation Exercises might. I started doing these exercises and initially they would make the symptoms worse but gradually I found they did help. The only time I was free of any symptoms was when travelling in the car but afterwards I would feel worse for a while, especially if the journey was quite long. It was also hard for people to understand exactly how MdDS made me feel, that it was not just the visible imbalance but much more.
Looking at the scale (see below) I would say my symptoms were 7-8 as I was unable to stand without swaying and falling backwards - it felt as though I was being pulled backwards all the time and it was tiring just to walk, it appeared I was drunk as I never walked in a straight line and even sitting I swayed all the time.
When in bed it felt as though the bed was moving continuously which made it difficult to get to sleep. I was unable to read as nothing made sense and I would find myself re-reading paragraphs or pages, nor could I watch the television, follow conversations with more than one person, use the computer or do general housework as any sort of activity involving eye or head movement made me worse - although I did do housework as I could not sit on my backside all day doing nothing and I was determined I would not be beaten.
I could not tolerate any noisy, dark or small places. I had knee operations cancelled as they said it would mean giving me another balance problem but I finally had one operation a while ago which set me back as the general anaesthetic affected my balance. I had to take an official interruption to a degree which I had not long started; I got frustrated as I was unable to do as many things or do them as quick as I used to, in fact I feel my life was put 'on hold' for over two years and frequently wish I had never gone on the cruise.
It is only in the last two or three months that I have felt more �normal� and have been able to resume my degree. I still have times when I go to bed and it feels as though the bed is falling away or moving and occasionally I still walk into the door frame, turn too quickly or go from a light area into a dark one which will make me lose my balance but compared to the past two years these symptoms are tolerable.
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.
