Personal Stories

CAROLYN'S MdDS CASE HISTORY  May 3, 1998, was a life-changing day for me. We had driven one hour to our lake home in Wisconsin from Illinois, a trip we had taken for 30 years. I got out of the car and my head was noticeably different. I felt like my brain was rocking from one side of my head to the other.   It was Sunday so I immediately called an ENT on Monday morning and got an appointment. He diagnosed me with a form of vertigo which is common to most people and gave me Meclazine and Antivert. The sensation was worsening and the next symptom felt like the floor was falling out from under me when I was walking. It was horrible. Then it felt like a huge magnet was pulling me to one side, which later I learned is called G force.   After seeing another ENT, going through innumerable tests including hearing and an ENG, an MRI and seeing a neurologist, no one was able to explain to me what was wrong. I was a teacher of 600 women and oversaw a 250 children pre-school and I had lost my ability to concentrate and focus. This is called "brain fog".  I readily knew after about two months of total frustration, driving to see a special ENT at Loyola University hospital who said I had a psychological disorder along with my GP who didn't know what to do with me and said he didn't want to take my case, that I had to research on my own.   I spent 80 hours on the Internet putting vertigo into the search engine. It wasn't until I put vertigo and ROCKING into the search engine, that the MdDS web site came up and I began to yell to my husband, "I found it, I found it!!!!" What a huge relief. I had connections and was able to see Dr. Timothy Hain at the Northwestern University Hospital within a month and he conclusively diagnosed me with MdDS caused by spontaneous onset.    During the 6 months before, I had noticed that I was having difficulty speaking correctly and as fluently as I have done for 49 years before this. I had been teaching for over 20 years. It was a warning sign. I had been on three cruises previously and after each cruise, I noticed that it took me longer and longer to adapt to solid ground. I even ended up in the Emergency Room once because I felt so strange.  I had been boating on this lake for the past 30 years but I noticed the last year that I was experiencing longer and longer periods of land adaptation when everyone else seemed to be fine. I had no idea what was ahead for me at that time.   I did have to resign my career as a teacher (after 30 years of teaching) and am not one to give up. I serve as Worship Director at my church and sing on and direct our Worship Team. I am on Staff at my church and am able to function although with more difficulty on my bad days.  I have gone from every day with symptoms to every other day with symptoms after about four years of constant torment.   I am frightened of boats and all moving vehicles although I never hesitate to travel with the exception that I will not cruise again. I fly several times a year out of necessity.   Dr. Hain prescribed .5 mg of Klonopin twice daily and I am currently trying Diamox because this drug has helped another person on this site. I have tried Trileptal with some success. I did go into a remission for six months last year but after a trip to Wisconsin via airplane and car travel there, when I returned to Florida, the MdDS came back with a vengeance.  Disappointment is not an adequate word to describe how upset I was.   I do notice that anxiety heightens the symptoms and a simple car ride can also provoke the symptoms. This is something I cannot avoid. I am seeing a neurologist in Florida and he has prescribed Elavil, Tegretol, Tripletal, Diamox, and probably other drugs but nothing has cured me. I found that when I was working in a retail store where I had to constantly be on the run and twisting and turning, I was actually better.   Fluorescent lights, paddle fans, crowds, strobe lights, movie theatres, malls all heighten my symptoms. It is very disheartening but I do not give up. I also suffer from almost daily headaches and have a prescrption for them.   I thank God for this wonderful group of people who are trying to find a solution to our syndrome and hope to celebrate with all of them when we do.   I have had MdDS for seven years now...starting at age 50. It has changed my life dramtically and has altered the life of my family.   I refuse to stop and will not give up although some days are very stressful fighting the symptoms.   I hope this has been some help to someone out there and that an answer is coming quickly.   Carolyn 57 years old 7 years MdDS Florida .5 Klonopin 2 X daily June 6, 2005 back to Personal Stories