On May 12, 2014 I had the privilege of being able to see Dr. Timothy Hain. I had testing with Dr. Hain on May 12 and I then returned on May 13, 2014 to see Dr. Hain. Dr. Hain is a neuro-otologist who is well versed and has written many articles on MdDS. He is a very good physician with an exceptional bedside manner. He gave me a firm diagnosis of Mal de Debarquement Syndrome. Up until then I had been told I had Central Vestibular Disorder. MdDS is more definitive within the category of Central Vestibular Disorder. MdDS is a diagnosis by elimination. All testing is usually normal with no structural problems with the brain. The only test that was abnormal was my VNG which showed this disorder is central brain. I asked Dr. Hain many questions such as why I had lost the ability to organize and multi-task. His response was my brain was multi-tasking every second of every minute of every day and it just doesn’t have the capacity to do much more. The eyes and the brain are working very hard to balance my body. That explains why my eyes hurt so bad by the end of the day. It also explains why I have to take multiple breaks on computers.
Fatigue is a huge factor in this disorder. Dr. Hain explained that it was because of the brain again working hard to balance. I guess the brain even works at night because I can sleep all night and wake up exhausted. I listen to my body and take naps as needed.
This was Dr. Hain’s explanation regarding how most people get MdDS (not all). When one steps on a cruise ship they will feel motion of the boat. The ankles begin the adjustment process and ther brain is mapping the motion. When complete you are able to go and enjoy the cruise. When one steps off the boat, the ankles begin adjusting to land and the brain begins mapping the change for dry land. In theory, the brain will return to normal brain mapping for land. Some people don’t read adjust and the motion of the boat may be permanent. Sometimes one can go into remission but it may return. Mine is 6 years now and so far no hope of changing.
Now please understand people also get this with plane or train travel. Driving a car makes the rocking subside, but returns with each stop light or when you get to your destination. Also some people get this spontaneously. Mine began with cruise travel. I had 2 remissions and then out of the blue after neck surgery, it returned. There are only 2 or 3 doctors researching this disorder so awareness is essential.
June is MdDS Awareness Month. If you don’t have spinning vertigo, and you feel like you are on a boat with rocking, bobbing and swaying, you may have MdDS. The earlier diagnosed, Physical Therapy may help or may not. But if meds are began early, some patients have a greater chance of remission. But be aware it may return out of the blue or if you choose to go back on a cruise, plane or train. Talk to your doctor but go armed with literature from the Foundation or web site search. Most doctors will look at you as if you are crazy as most have never heard of MdDS. The Foundation’s web address is: http://www.MdDSFoundation.org. There is a lot of good information, but don’t be afraid to try whatever may work.