This all began for me in June of 1999 when I went on a two hour dance cruise around Manhattan (with a bunch of friends I have made over the internet, incidentally lol). Two hours on the boat. That's all. I now use that cruise as a point of reference in the time line of my life. Pre-boat or Post-boat. I remember dates and things I have done in relation to that because I have not been myself since that night.
Anyway, I was on the boat dancing and having a great time. No trouble at all. The next day I was with this same bunch of people and I was asking them "does anyone STILL feel like they are on the boat??" Everyone laughed at me and thought I was merely hungover. I knew that was not the case because I did not have all that much to drink and my head was not aching.
A week goes by. I still feel like I am on the boat, rocking and swaying. After two weeks of this, I went to my doctor. My primary dr was out that day. I said "let someone else see me, anyone else" and this other dr looked at me for about five minutes, said I had BPV, put me on antivert and sent me to a neurologist.
Now, let me backtrack here and say that in September 1998, I think I actually did have BPV. I would feel dizzyness whenever I laid down on my right side. I went to this neurologist. She said it was BPV. She put me on antivert and the problem subsided within a week and never came back.
I know what i am feeling now is not BPV, because the dizzyness and unsteadyness happens all the time, not just on my right side. The sensations from last September to now are completely different. I tried to explain that to this neurologist when I saw her for this most recent problem in June. I feel that she misdiagnosed me. She put me on antivert, which I stayed on for two weeks (don't know how I got anything done, it wiped me out so). The antivert did not help my symptoms at all.
But the one good thing that she did do for me, and I give her credit for this (and only this lol) is that she referred me to a vestibular therapy program. I have been attending vestibular therapy twice a week for 40 min sessions since the end of June. My therapist is wonderful. It was from HER that I first ever heard of MDD. During our first meeting she evaluated me, listened to my account of my symptoms, and hadme do all sorts of balance tests (which I failed miserably.. i had NO balance TO test lol). Then he told me about this thing called Mal De Debarquement. She pulled a big book off the shelf and read a description of it and I was thinking "Oh my God. That sounds just like me." She told me how the vestibular therapy works. How she would try to retrain my brain to get adjusted to being on land again. She also warned me that the sessions would be very draining because she would be doing things to purposely make me dizzy. Well, she was right!! I am worn out after every single time. But, I think it has helped me and I am improving, at least in terms of regaining my balance.
Anyway, as the therapy was beginning, I also saw an ENT. By this time I had found the MDD website and was reading anything about MDD I could get my hands on. I printed out information on MDD and handed it to him. He looked at it for about one minute and handed it back to me saying "you don't have this. This happens after an extended boat trip. You were on that boat for two hours." And I said "I know that, but the symptoms fit me. It's not BPV." He looked at me and said "Do you want me to help you or not?" (on the wall behind him was a sign that says "if you remember who is the doctor and who is the patient, your care will be a success"). He ordered an ENG. The ENG was normal except for the optical part of the test, which I failed. The ENT says this test showed my inner ears were normal, but that what I had was "some type of central nervous system problem." That's when he ordered an MRI, which came back normal.
(UPDATE)On Dec. 1, 1999, I was seen by Dr. David Zee at Johns Hopkins Hospital in Baltimore, MD, a doctor who is familiar with MDD. He listened to me talk about all my symptoms and what I have been going through, then said "there is a name for this, ya know." And I said, "MDD?" And he said "Yes."
After six months of doctors and vestibular therapy, I finally had a diagnosis, and more importantly, a way of treating the symptoms. My vestibular therapist was the first to suggest I had MDD back in June 1999. Every doctor I saw after that, until Dr. Zee, had never heard of it.
As a result of my ENG test and my failing that one part, my therapist now tries to bombard me with as much visual stimulation as possible and it totally sets my dizzyness off even more, but she says it will help me cope with a lot of visual stimulation and help me adapt to those situations.
I went to another neurologist after I failed that part of the ENG. A great doctor whom I really like a lot, but unfortunately she could not give me any answers either, except to agree that it was not BPV. I gave her information on MDD and she did take a look at it. And said she just did not know what to advise me. She said if I wanted to try other drugs like Klonopin we could talk about that, but she said it had the potential to be addicting so I told her to forget about it for now. (I am rethinking that after reading all your posts). I am currenlty on no medications.
I once overheard my phsyical therapist talking to a colleague of hers that is at Johns Hopkins. She had called him specifically to ask if he could tell how I would react to flying (I was getting ready to take a trip and was worried about the effects of flying). She said to him, "this is that patient of mine with MDD I was telling you about." I know she thinks that is what I have and to hear her actually say it to someone else was like music to my ears. But why can't I get a doctor to tell me that??? I live very close to Johns Hopkins and am thinking about trying to get someone there to see me.
(UPDATE) After my Dr Zee visit, I am now taking half of a .5 mg tablet of Klonopin three times a day. Fortunately, I am one of the lucky ones who has not suffered any side effects from this drug and I feel like it has helped give me the life back that I once had. I am back to my kickboxing classes, have more energy and am not so bothered by visual stimuli as I was before starting on the Klonopin. I started the medicine in December. Dr. Zee said to expect to be on it for six months, then I will taper off of it. What happens after then, I can only pray and hope about.. that I will continue to feel the improvement. Some days I still feel unsteady, even with the medicine ( particularly in the mornings and when I am overtired and stressed out) but overall, the medicine has made a huge difference. I cannot thank him enough nor the support of this group.
So, that's my story. In the beginning I think I did suffer a bout of depression in trying to deal with all this. I had no spark, none of my wacky, crazy energy. (I am a 32-year-old single woman living alone who loves to do spontaneous things) I would have dear friends and family telling me "you are just not yoursefl anymore" as if anyone knew that better than me!! It would bring me to tears at times.
But I am slowly getting that "me" back. I am continuing with the therapy. It is helping. I have good days and bad days. I have found that my bad days, like many of you have said, are days filled with stress. But I have a stressfull, deadline-driven job and it cannot be avoided (I'm a newspaper reporter on the police beat) .
I also find that when I am in crowds of people it gets worse. Exercise helps. Getting plenty of sleep helps (something I am new at .. I don't stay up late chatting on line anymore.... ok ok not as much as I used to lol) Counting my blessings about my otherwise good health helps. And keeping my sense of humor helps.... A lot!!!
As for driving, that's when I feel my best. Maybe I will drive cross country to see you all in California?!! That would mean being symptom-free for quite a while : )).