In 1988, at the age of 49, I went on a five-day cruise. While on the ship, the director said to the group, "You're gonna laugh when you get home and feel like you're still on the boat." On my first day home I experienced this feeling, grabbed the counter, and laughed about it. Soon I began to feel this rocking motion four to five times a day. The feeling intensified and became more constant and persistent. When sitting in a parked car I felt like someone was rocking the car, in bed I felt like I was rocking in a boat, or going up and down on a ferris wheel.
After three months of this, I saw a doctor who prescribed Meclazine which didn't help. In six months time I then saw an ear specialist and three neurologists, had CAT scans and an MRI and other neurological tests. All had negative results. There were always hints by the doctors that I was imagining the symptoms or that the condition was stress-related.
Finally, I was advised to see a psychiatrist. I related my cruise ship story to the psychiatrist and was sent home with an anti-depressant. For two years various anti-depressants and other medications were prescribed, none helping to relieve me of this rocking motion. The psychiatrist suggested that I enter the psych ward. After much reluctance I consented to being admitted. The doctor decided that I was clinically depressed, so I was given a series of shock treatments. The boat feeling was finally gone, but unfortunately the reprieve lasted only eleven days. I then decided not to see any more doctors about the problm. I had consulted medical books about balance, vertigo, neurological conditions and found no articles on this condition. I didn't know where else to look. I tried hypnosis and chiropractors with no success either.
Seven and a half years after the cruise, I decided to see a neurologist again in hopes that someone might have some new ideas. After relating my cruise ship feeling, various medications were again prescribed. While I was seeing the neurologist, my daughter heard about a woman in her town who had returned from a cruise and was experiencing the same symptoms I was. I got the woman's phone number and called her. She mailed me an article entitled, "Mal de Debarquement - A Forgotten Entity" by Terrence Murphy. The article presented six cases of patients with a distinct syndrome of persistent sensations of imbalance. Common features included "onset following a period of motion exposure", "symptoms lasting months to years", and "sensations of motion experienced on return to stable land after adaptation to motion lasting from hours to days in normal individuals."
I read the article in disbelief. It was the same thing I had been saying for years! I felt some relief in recognition of the syndrome. I showed the article to the neurologist, who said it was her first awareness of the syndrome. I then spoke to an ear specialist who said he'd seen about six patients with MDD and had been unable to help any of them.
I then wrote to the National Order of Rare Disorders (NORD) now that I had a name for my problem. They gave me the address of Vestibular Disorders Association (VEDA). VEDA sent me an article entitled "Persistent Mal de Debarquement". VEDA's newsletter contained a request by a doctor for people with MDD to fill out a questionnaire for a study he was doing. Now in 1998, information is available on this doctor's website. An on-line support group started by another MDD patient also contains stories like mine and the long struggle to diagnose this bizarre condition.
I've had the feeling now for ten and a half years. I no longer laugh at the feeling. I just want to get off the boat.