My name is Jessica and I am 29 years old. I am from New York and I have had MdDS for 6 months. This is my story.
July 2013, I went on a family vacation to the Dominican Republic. The vacation started out great. The third day we were away, we decided to take a snorkel trip. This would turn out to be a life-changing decision. The trip was aboard an old pirate ship and was to be a 4-hour tour in the Atlantic. The moment we boarded the boat I felt something was terribly wrong. Something in my body was telling me to get off this boat, I was incredibly anxious, but I didn’t listen. I looked at my friends and family, and everyone seemed to be having a good time. So I took a deep breath and told myself to relax. I pressed on with the excursion and made the best of it. What I didn’t know was what was waiting for me onshore would be nothing less than a complete and utter nightmare.
I have been on many boats in my life. I have been aboard several week-long cruises. I have flown all over, been on every amusement park thrill-ride imaginable. I have experienced the extended length of time that it takes a normal person to regain their “land legs” after a trip aboard ship. As soon as I disembarked the ship, I felt that “sea leg” feeling, but just shook it off and told myself it would go away. The rest of the week I kept complaining about how “off” I felt and everyone just looked at me like I was crazy. I tried taking Dramamine thinking it might help reverse my “sea legs”. It did help me sleep, but did little for this sensation of rocking, swaying, and bobbing.
As soon as we returned home from our trip, I knew something wasn’t right. To top off my rocking, swaying and bobbing, I had a terrible cold. I went to my PCP who told me I was dehydrated and thought I might be fighting something, she prescribed me an antibiotic and told me to rest. By day 3 of the antibiotic none of my symptoms were improving and a co-worker suggested I see an ENT. I called that afternoon and was able to see the ENT that day. This was the first time I heard the words, Disembarkment Syndrome. I had never heard of this syndrome, although he assured me I need not worry, as the symptoms usually dissipate in about 2-3 weeks. He said if the symptoms did not go away within a month to call back for further testing. That was a huge relief to me. He scoped me and told me I had a sinus infection and prescribed a stronger antibiotic for the infection. I left his office feeling relieved, I wasn’t crazy.
I wish I could say things got easier from that moment, but somehow things just kept getting worse. My sinus infection had cleared up, but my rocking, swaying, and bobbing were still quite evident. I was also noticing weird sharp headaches, bouncing eye movements, a cloudy brain, and trouble finding words. I wasn’t sleeping, my anxiety was at an all-time high, and I was emotionally fragile. I couldn’t eat and had dropped around 15 pounds. My husband thought I was a lunatic and I was even questioning my own sanity. At this point I had done my research and knew that if my symptoms weren’t gone yet, I may be looking at a more long term situation.
I found a Neuro-Otologist at NYU who could diagnose Disembarkment Syndrome. I made an appointment and was able to see him quickly. He ran the typical battery of tests an ABR and VNG. Everything came back normal. He told me I would get better and recommended vestibular therapy. I went to a balance center 2 times a week for 2 months, did everything the vestibular therapist told me to. She was compassionate and supportive, and was as confounded by the diagnosis as I was. I was losing hope and vestibular therapy was doing little to help my symptoms. I even started having some seriously questionable thoughts. Thoughts that I never could imagine I would think at 29, newly married, and otherwise very healthy.
I made an appointment with a neurologist and he laughed when I told him my symptoms and diagnosis; he had never heard of such a diagnosis. He prescribed Klonopin and recommended I have an MRI/MRA of the brain. I had the tests done, and everything turned up normal. I was struggling with my job and my relationship from lack of sleep and extreme anxiety. I didn’t want to take the Klonopin but felt I had no other choice. The Klonopin did help. I was sleeping better every night, but my vestibular therapist was very against it and it was doing little to rid me of my symptoms. She believed it would make my symptoms last longer, the very last thing I wanted, but I was desperate. That’s when I stumbled upon an announcement on the MdDS Foundation website of a new research study. I really wasn’t sure what the study would entail, but by this point you could have told me you were going to electrocute me and I’d have been fine with that.
Dr. Mingjia Dai contacted me shortly after, regarding my inquiry into his study. We set up an appointment at his office, at Mount Sinai Hospital Center. I was hesitant to go, but my vestibular therapist encouraged me to at least see what it was all about. I did go see Dr. Dai, and I can honestly say it was the best decision I have made thus far.
Dr. Dai not only knew of MdDS but he actually understood how I felt. I felt I was talking to someone who knew what was wrong with me and thought they could help. I only sat for one treatment with Dr. Dai, and the entire appointment was not more than 45 minutes. He had me do a few exercises I had done in vestibular therapy. He asked me to stand still with my eyes closed and my arms crossed, wanting to know which way I felt my body rotating. I had never realized that my body had an internal rotation. When I closed my eyes, my body started moving forward then to the right, back and left. Dr. Dai then had me sit in a dark booth as he watched the nystagmus in my eyes, movement other doctors had missed.1 Then he started his treatment. He had me watch a pattern of light on a dark wall for three minutes as he moved my head in an opposing direction. As soon as it began, the treatment was over. I felt fine after the treatment with a level between a 2-3. However, I left with my head feeling fuller than I have ever experienced. As I drove home to Long Island, it felt like my head was going to pop off my shoulders and float away. Once home, I waited for the magic to happen. I panicked the next day when I still felt all of my symptoms ever present. Dr. Dai, amazingly, agreed to meet with me in his office on a Sunday to try another treatment. After an exam, Dr. Dai attributed the elevated symptoms to the driving and convinced me that they would subside in a month or so. As a result, he did not give me any further treatments. As he said, my symptoms would reduce over time.
I am now 4 months post treatment. When I met Dr. Dai my symptoms were a solid 5-6. I can confidently say my symptoms are at a steady 0-2. When I am at my worst, my symptoms are a 2. When I am at my best, I am practically symptom free. I do notice things that trigger my symptoms to a level 2, which include staring at a computer screen for too long or sitting in an idling car for extended periods of time. Prior to this diagnosis, you would find me at the gym or taking an exercise class, I always tried to keep myself physically active. I am not quite back to the gym, but at Dr. Dai’s urging, I have forced myself to walk. I try to walk 2-3 miles outside, a few times a week.
I know I am getting better every day, and I attribute this to Dr. Dai. It is so rare that we find people who even try to understand MdDS. There are so few treatments, and he is trying to find one that works. I truly believe Dr. Dai has helped me get my life back. I can’t say that I am 100% but I know that I am getting close.
Family vacation, July 2013
1 Bouncing vision and nystagmus are typically not associated with MdDS. To learn more about symptoms most frequently reported and the MdDS Symptom Severity Scale, please click here.
The MdDS Foundation encourages research and clinical studies such as the one mentioned here. By publishing this story, no endorsement by the MdDS Foundation is implied. For further information, please read our Medical Disclaimer