I am a 40 year old woman who has had Mal de Debarquement Syndrome for just over one year.
It all started by going on a motor boat ride for approximately 2 hours. When I returned I felt the sensation of still being on the boat. I had had this sensation before but it always went away after a good nights sleep. This time it didn't.
I had all the typical symptoms of swaying (not vertigo) and confusion, fuzzy feeling in my head and when I layed still I was like the inside of my head was buzzing.
However, unlike some of the testimonies I have read in your article, I was lucky enough to be referred by my doctor to an ENT after a couple of months of trying things like Sudafed, Antivert, etc. The ENT immediately diagnosed me with MDD. I was so happy to hear that there was actually a name to what I was experiencing. He still put me through the tests but all came back negative.
He had learned about MDD in university and even though there is very little material on this syndrome, he found an article by Terrence P. Murphy, MD, FACS, Atlanta, Georgia entitled, "Mal de Debarquement Syndrome; A forgotten entity?" This article suggested that when the drug "Elavil" (Amitriptlene) was used, it, in his experience coincided with the conclusion of MDD.
The only problem was dosages were not mentioned in the article so my ENT suggestedthat I start taking this drug (which is non-addictive and very safe--it is a very old and commonly used antidepressant.) I started taking 3 - 25 mg. tablets a day and was discouraged because it had no effect on my MDD. But then I slowly started increasing the dosage - still nothing.
Until the magic number of 6 - 25 mg. tablets a day. Two - 3 times a day. Almost immediately my symptoms went away. I stayed at this dosage for several months. Then my ENT suggested that I start reducing my dosage slowly. So I started taking 5 - 25 mg. a day and after about 4 days my MDD was back so I went back to the 6 pills a day for about 3 weeks and tried again to go down to 5. This time it didn't come back. So I went down to 4 a day and my MDD was back again so I went back up to 5 for about 2 weeks and then back down to 4 again. Again it didn't come back. So I have carried on reducing my dosage and as of 2 days ago I have not taken any. But if it comes back, I was keeping it at bay a 1 pill a day so I would go back to 1 pill a day for awhile and then try stopping again.
Anyway, I am totally convinced that Elavil is the answer but you have to perservere and not be discouraged. You must slowly increase your dosage up to 6 pills a day.
It does not work overnight, but I am totally convinced that it does work. I hope that other sufferers will try this drug. It is also very inexpensive.
- After I got to the maximan dose of 150 mg. of Elavil per day, I noticed that the MDD symptoms were faltering after about 2 days. In other words, I was free from symptoms for short periods of time and then they would come back. After about 5 days they were completely gone.
- Side-effects - The most common side-effect that I am sure everyone gets as I did, is a dry mouth. You had mentioned that people who have tried Elavil had too my side-effects such as vertigo. For the first week my MDD symptoms were intensified but this went away as my body got used to it. So I don't know how long other Elavil users went on it for. The thing about this drug is that it builds up in your system--you cannot start it and then go off for a few days and then go back on. You can't miss a dose as the accumulation effect would be lost. I have looked up Elavil in the Pharmaceutical book and there is all kinds of potential side-effects but none are life-threatening. Anyway, all I had was a dry-mouth and the temporary increase of symptoms. Absolutely nothing else. As Elavil's primary use is for depression I have heard that it does not even "kick-in" on depressed patients for about 1 month. It has to have time to accumulate in your system to work.
- It took me quite awhile to build-up to the maximum dose simply because my ENT had no idea as to dosage amounts as pertaining to MDD. Therefore, it was a trial and error method. I have looked back on prescription dates and this is as best as I can recollect how I did it. Oct 31/96 to Nov 16th I took 75 mg. a day (1 25mg. pill 3 times a day). From Nov 16th I started to increase 1 pill every 7 to 10 days until I was up to 6 pills a day which was around Dec 5/96. Symtons were gone by Dec 10th. I kept on the maximum dose for about April 17th when my ENT encouraged me to start decreasing dosage by 1 pill a day every 2 weeks (I was reluctant to do this but I did anyway). My result going from 6 to 5 pills a day was return of MDD symptoms after about 4 days. So I went back up to 6 for about a month and tried again--this time it worked. I was keeping MDD at bay at 5 pills. I continued this method of back and forth dosages 1 at a time until just this month I was down to 1 a day, and now, I have been completely off for about a week. If my symptoms reappear I will go back to 1 a day for awhile and try again.
- My ENT's name is Dr. Brian D. Westerberg, MD, FRCSC, and I don't believe he is on the Internet. His phone number is (604)524-4931 and fax no. (604)521-9323.
I am only the 2nd person he has seen with MDD and I am the only one he has treated with Elavil and was treated on a totally experimental level so I don't know if he has reached any conclusions as to why this drug works. You can try to reach him if you like but you know how busy specialists are--I will say that he has a keen interest in MDD and wouldn't be surprised if he will communicate what he knows with you. I won't be seeing him again until November.
- All in all, I would definitely encourage other MDD sufferers to give this drug a try despite the side-effects. If they go into it knowing not to expect an overnight cure and to stick with it, I would really hope that it will work for them too. If I get this again (haven't been on a boat or plane since and am reluctant too although my ENT would like me to for experimental sake!) I would be tempted to start at 150 mg. a day and not to expect results until it has had time to build-up in my system.