Mal De Debarquement and Vestibular Migraine
I am posting this because I am tired of being sloughed off by all the doctors that I have been to for this condition. I suppose it doesn’t matter anyway because they are just shooting in the dark, and they don’t know Jack. I am trying to get on the list for Mount Sinai as I am pretty much critical with this now.
I just found out today after a year and a half that my neurologist had only treated a few cases of what I have over a period of 38 years. Although, he has treated a couple of hundred with Vestibular Migraine alone, and that is a Hugh difference as the overlapping conditions that I have are quite complicated. There are only a select few places you can get treated for this condition, and it may be the Beh Center in Dallas, Texas, possibly Dr. Staab at the Mayo Clinic in Minnesota and of course Mount Sinai, NYC. Also, a Dr. Bath around the San Diego area in California was mentioned in a recent Good Housekeeping Article, and they want researchers to donate to MdDS because there are many sailors and marines who now have the condition from being at sea for long periods of time. It would be good if the doctors could know what we are going through, and then they may have a wake up call, but doubt they give a damn. I am currently 66 yrs and have had this for 2 yrs. and 3 months. I feel like if I were 85 or 90 that this Debarquement may very well kill me as I feel as though I am being beat all to hell. The gravitational pull and the rocking is Drastic and yes, I have tried all those drugs…magnesium, Klonopin, migraine preventatives…you name it, and also vestibular therapy.😖