Five years ago this past Labor Day (Sept 1, 1992) I went on a three day/two night sailing trip with friends down in the Gulf of Texas. Sailing was one of my favorite things to do in the whole world. I've been many times and stayed out in the Carribean for up to two weeks at a time. Indeed, it took a few days to get my "land legs" back but I did so every time.
I don't know exactly what went wrong on this particular trip except that we sailed at night which I had not done in the past. During one of those nights I happened to be asleep below when we experience great turbulence from a storm while also passing between two freighters at the same time. The rocking of the boat was such that I almost fell out of the bed. Because it was so very dark, I couldn't focus on anything stable -- couldn't see a horizon or anything fixed. The remainder of the trip I felt fine. When we returned home, I felt dizzy and commented on it to the others. No one else had this sensation. I worked in a doctors office and consulted one of them thinking perhaps I had an ear infection. That was negative but he gave me Antivert for the dizziness. This only made the condition worse and after three days of stumbling around and having to hold onto the counter just to talk with patients, one of the doctors became truly concerned and sent me to an ENT.
My visit with the ENT went as usual -- all the different testings, etc. I had an MRI and because of my medical training I knew they were looking for MS or a tumor. The MRI was normal. At this point, my ENT began to talk to me about MDD. Seems that he had had some experience with it while doing his residency on the California coast. He sadly told me that unfortunately this syndrome is difficult to treat and sometimes impossible. He referred me to two different Neurologists neither of which had heard of MDD. Each of them suggested that I was depressed and needed psychiatric counseling. I knew in my heart they were wrong but at that point I was willing to try anything.
One of them gave me Prozac which also made me worse and one of them sent my for biofeedback. Each of them referred me back to the ENT saying it was an ear problem. My diligent ENT consulted numerous neuro and ent specialist from coast to coast. The replys weren't encouraging. There were reports of patients who had MDD from one week to twenty years and counting.
The most highly regarded specialist encouraged my ENT to put me on Valium. Many years ago I was in an accident and broke my neck in two places. Yes, I'm truly blessed just to be alive. However, because of all the severe muscle spasms related to that injury, I was on Valium for years and I had built up quite a tolerance. We eventually worked up to 30 mg of Valium a day before I began to see marked improvement and I was on that dosage for months. The rocking gradually calmed down and we lowered the dosage to 10 mg a day. I became more functional. During all that time I had to continue to work as I was a single parent with a child in high school and one in college. I also lost both my parents during the first three years that I had MDD. Each time something very stressful happened, I began rocking badly again and would have to bump the medication up to 30 mg again for weeks to get back to square one.
Don't misunderstand, it never went away completely. I continued to have the sensation even on the lower dosage but I could tolerate it and sometimes forget that I had it until I tried to sit still, take a bath or shower.
Two years following the onset of MDD, I remarried and life became good again. I was still holding steady on 10 mg of Valium a day. However, a year ago, my husband experienced the word of the nineties, "downsizing", and we were faced with a stressful situation again. During that time, I experienced an anxiety attack and was once again put on Prozac. I was reluctant to take it as you might expect but the anxiety attacks brought chest pains that were unbearable so I gave in. Consequently, I was on Prozac and Valium at the same time. Both physicians were aware of this and concluded it would be ok.
It took quite some time for me to become accustomed to the Prozac -- it made me terribly tired but eventually I did. My MDD was the best ever!! I was elated!! After several months of this treatment, I began to lose my hair by the handsfull. I knew that stress caused this to happen and chalked it up to that. The problem became serious so I consulted a Dermatologist who told me that Prozac caused hair loss in some patients. Needless to say, I was anxious to get off that RX as soon as possible.
That's when everything went wrong again with regard to the MDD. My pcp physician put me on Serzone to replace the Prozac and it absolutely threw me back to square one with the rocking. I stopped taking Serzone after only two days and called the ENT and bumped back up to 30 mg of Valium a day. This time it isn't helping the way it did before. Even with our job situation worked out, a new home and life being otherwise great, I'm back on the boat.
It seems that as long as I stay out of the car, don't get in a hurry, omit alcohol, caffine and artificial sweetner especially Nutrasweet, I can tolerate the malady. Otherwise, the MDD rears its ugly head and sets me rocking.
I can't tell you what an impact it made on me to find you and others with this problem. My family and friends don't understand at all. In fact, sometimes, I feel as though they think I made all this up. When I read some of the stories from others who suffer with this madenning problem, I sat and wept for hours. I believe that it was a relief just to know that I wasn't truly going crazy and also, I felt such sorrow for those who share the common bond of MDD.
Here's hoping one day we'll all debark!!