In October of 1994 my husband and I went on a 7-day dream cruise to Bermuda. The dream cruise turned out to be the cruise from hell. We were hardly out of the harbor in New York City when I began noticing strange sensations. I was having trouble focusing my eyes and I had the feeling of a dull pressure in my head. I have to admit I felt so bad, I feared I was heading out into the middle of the ocean and I might be having a stroke. Before long, we were experiencing rough seas (24 ft. waves at the worst ) and I was so sick I didn't think I would make it to port.
At this point, many other people were sick and we were assured we would be fine once we neared the island and the waters calmed. That proved true for everyone except me. When we left the ship to sightsee, I discovered I couldn't walk a straight line and nothing seemed to be stationary. I walked into people, fell off curbs, and knocked things off shelves in the shops. I was horrified and dreaded the cruise back to New York. The seas were rough on the return and I wanted nothing more than to get back to my home where I was certain things would return to normal.
A week went by and I felt I was still sailing the high seas and couldn't keep any food down, so I went to my family doctor who prescribed meclizine. That only made me worse. He admitted he didn't know what to do, and referred me to an ENT. The ENT told me I was "just slow in getting my land legs back". He felt I would be good as new by Thanksgiving. I only got worse. I couldn't walk, read or watch television, and my memory was terrible. I was so frightened one night that I decided to recite the 23rd Psalm to calm myself, only to discover I couldn't remember it. That brought on my first panic attack and I was put on Klonopin. I spent a month in a zombie-like state, but the rocking, swaying, and vomiting continued.
I was then referred to a tertiary care center (Hershey Medical Center) where I was given an ENG and put on 2mg. valium 3 times a day and eventually on 5 mg. 3 times a day. They finally decided I was a candidate for Gentimycin injection treatment to destroy the balance mechanism in my ear, but didn't have the equipment to determine which ear was causing the problem. They referred me to the Balance Center at the University of Pennsylvania Hospital in Philadelphia. I was told I was going to the best doctor on the east coast. By this time I had lost more than 20 lbs. and was a physical and emotional wreck. I had extensive blood testing done for thyroid, lyme disease, lupus, etc., another ENG and hearing test, and an MRI to check for a brain tumor and MS. All came back negative.
That's when I was told it was all my "nerves". He seemed very unconcerned and I sometimes felt he was making a fool out of me, but I kept reminding myself he was supposed to be the best on the east coast. I was put on 1 mg. of ativan 3 times a day and the antidepressant Pamelor. It didn't help. It wasn't until I threw up in the doctor's office on one of my visits 4 months later that he admitted me to UPH. I was examined by neurologists, neuro-opthalmologists, and a phsychiatrist who could find nothing to explain my symptoms. I was given a platform postuography and an ECOG which finally led to a diagnosis of endolymphatic hydrops in both ears. I was told that since they hydrops was bilateral, I had no options such as surgery. My only hope was to follow a strict diet to balance my salt and sugar intake. If I followed the diet faithfully, the fluids in my ears would equalize and I would return to normal. I didn't have to return to the doctor as there was nothing else to be done. He advised me to also see a psychiatrist.
I had great hope and spent months on a strict regimen. Nothing changed and I continued with the rocking, swaying and all the other misery. I finally gave in and saw a psychiatrist who sent me to another ENT who then sent me to a neurologist who then sent me back to the psychiatrist and so the vicious cycle went on and on and my symptoms went on and on for 5 years.
Finally, in desperation I decided to go to Johns Hopkins Hospital in Baltimore, MD. in December of 1999. There I had another ENG and hearing test (both normal). The next day I saw Dr. Lloyd Minor who examined me in his office, reviewed my tests and told me "You do not have endolymphatic hydrops, you have Mal de Debarquement Syndrome". There was no doubt in his mind. He told me to go home and look up Dr. Timothy Hain and I would find all there was to know about MDD. When I did, I knew at once I finally had the correct diagnosis. My symptoms were real and I wasn't crazy after all.
I have an extreme case of MDD. I have a very strong rocking sensation combined with a feeling of constantly dropping in an elevator that leaves me almost constantly nauseous. I experience "g-forces" pressing inside my head and on the left side of my chest to the extent that I sometimes feel I can't breathe properly. I have no sense of stability. The floor moves, my surroundings move, and I feel like I will fall out of bed. I hold on to the bedpost every night to fall asleep (which is no easy task). I dread going to supermarkets, department stores, movie theatres, basically anywhere there are crowds or a lot of movement. I have great difficulty concentrating and making decisions. I have developed an anxiety and panic disorder sometimes accompanied with severe depression. I am presently taking 1mg of ativan morning and night and 300 mg of Serzone. I can get some relief by riding in the car, but when the car stops the symptoms return with a vengeance. If I try to take a walk, I feel so bad when I return I have to lie down. Stress and fatigue are my worst enemies.
To date I have taken 18 different medications over the last 5 years. Meclizine, Xanax, Valium (2mg), Valium (5mg), Klonopin, Pamelor, Tofranil, Zoloft, Remeron, Paxil, Effexor, Busbar, Dyazide, Phenergan, Serc, Elavil, Ativan, and Serzone. I can't recommend any of them to help MDD symptoms. Ativan and Serzone have helped with anxiety and depression.
Since developing MDD, my first grandchild was born. I was never able to rock her as an infant. I can't play many of the games I could with my own children. If I so much as try to push her on a swing, I get so sick I have to lie down. I get so frustrated. I want to walk into the church for my daughter's wedding without worrying about making a spectacle of myself as I so often do. I would love to be able to play the piano again. I dream of having a clear head, being self-confident, productive and relaxed.
Most of all, I pray for strength and courage for all MDD sufferers until a cure can be found.