The Faces and Stories of MdDS

JOAN'S MdDS STORY

By - Joan M.   Age 65    June 2005

I open my eyes and yes it must be morning, the room is getting light. My back is to the clock and I am hesitant to turn because I don't want to waken the beast within my head.

Oh there it is ..... a jig that goes from side to side....oh what time today will it turn into a sway....side to side....and then to a bounce up and down, .....then to a lurching side to side.  Some days when I waken everything is still.... no beast there and I just want to stay in bed and savor the quietness but how my side aches from lying on my left side all night because I have found that if I lay there I am more likely to have no movement upon waking up. 

As I lay there, I think back to when this first appeared.  It was after a 6 hour drive in a Ford Bronco and I laid down but the bed was still moving as if I was still in the truck so I got up, did some chores and forgot about it. This was in 1981 and during the next 10 yrs, I flew many times to Florida and cannot remember unusual movements afterwards.  However, we purchased a fifth wheel trailer and started driving to Florida and do remember that after a day of riding, the movement of the truck was with me as I prepared supper but did not linger long.  In 1991, we purchased a boat and started reef fishing off Key Largo and I began to notice that once ashore after a day of fishing, I was pretty silly, movement wise, and by the winter of 92-93, it was interfering with nightly functions...I would not go because I was still in the boat.

Well time to get up and I ease slowly out of bed and stand cautiously to see how my balance is. Oh good, its OK which means I will be able to do the household chores for another day. As I get my clothes from the closet, I again notice the mess it is in and wonder...oh where is my sweet little girl who has grown into an adult with a daughter of her own. How I need your understanding and help to clean this mess.  What has happened to us ?  We use to be close, take  painting classes together, and when you gave birth to my beautiful granddaughter, I was there to help you out. I know I was obsessing about this movement in my head and how you got tired of hearing me tell you that the floor, chair , bed moved like I was in a boat.

You as everyone else thought I was imaging the whole thing and how that made me sad.  It was during these years that I began the quest to find out what was going on. I saw the local EENT who referred me to a visiting EENT from Toronto, who after reading the referral told me to go home and get the stress out of my life... I went home in tears. My next stop was to a psychiatrist who gave up on me after a few visits and stated in his report that all I wanted to discusss was the abnormal movements of head and body. I then decided maybe everyone was right and I would try and ignore everything.

Around 1995, I had a true vertigo attack, a throw back from a severe viral ear infection in 1987, however, it did get me to a specialist 3 hrs away,,, another EENT doctor who did not know what to make of my symptoms and referred me on to a neurologist and another EENT in the city of Halifax...4 hrs away...plus she ordered some tests.

To have these test required months of waiting, wondering and worrying...what was wrong...what was wrong...

The day I had the caloric testing day was indeed a happy one because it showed I was, in fact, dizzy... gee I am not imaging it...what a breakthrough that was for me.  In the mean time, I had my first of 3 MRI's and saw the neurologist. The day before I am to get the results of my MRI, I see my fourth ENT and he  half listens, has a room full of people waiting to see him, does head maneuvers to dislodge floaters to no avail and then proceeds to look at me and say "I think you have a brain tumor".  Well, I am thinking if I do, I would be dead because I would have had it for years so was not worried.  The next day, I get the results of my MRI which were negative as the next 2 were as well.  The only abnormal findings were downbeat nystagmus....poor balance and unsteady gait. The neurologist tells of other patients he has with the same symptoms and concludes it is a degeneration of the cerebellum...it progresses but slowly and doesn't kill you so he tells me and is most likely genetic.

Home I go to wait and see him in 6 months time. Oh goodness, it is time to make dinner as we call it at noon. So here I am holding onto anything I can because I walk like a drunk. I sit while I peel the vegetables, and then try to eat while feeling like I will be bounced off the chair. What I would give to sit quietly and eat just once.  Thankfully, after I clear up. it will be nap time. As I lay there waiting for all the movements to subside, I think of my second son, you have been so good to me.  It was you who listened to me without judgment and went on the internet and found a site that described my symptoms and it had a name... mal de debarquement... now, I am believing that there are other people who have the same thing as I do.  Maybe I am not crazy after all.

My next visit to the neurologist, I told of what I had found but he was not about to agree with that finding. In the meantime, my son had found a clinic in Virginia Beach so I asked for a referral which he agreed upon. So we were off to Virginia Beach where I had a day of tests and then saw Dr. Richard Prass who said I did have MdDS and ordered Klonopin and vestibular exercises.  I took a 2 day crash course in vestibular exercises and returned home, but I was unable to tolerate the Klonopin. The exercises did improve my balance and eye focusing. He also said that there was something wrong with my left ear and thought I may need an operation but upon investigating that avenue, I knew I would not be having it done.

I awaken from my nap and yes, the bobbing and rocking is still there. The rest of the day passes like most of the ones prior...filling in time waiting to go to bed.  So many things I used to enjoy are just not enjoyable now but the computer is a great distractor so I spend a lot of time there.

I could list all the things that I cannot do but would rather think of those that I can still do...I can do most of the housework....get meals.....do the laundry...and look after my personal needs but oh, what a job to go grocery shopping.  Well, bedtime is here. Relief for a few hours but I wonder what tomorrow will bring, perhaps a miracle.

Treatments I have tried include massage therapy, physiotherapy, psychotherapy, and one trip to a chiropractor.  Medications I have tried include Paxil, Klonopin, Elavil and others, which I forget but I could not tolerate any of these.  I do take Valium but it does not help alleviate the symptoms but does relax my back and neck muscles.

My conclusion after all these years is that there are 2 categories of MdDS

          1.    Transient and temporary

          2.    Long lasting and progressive

I fit into the second category probably due to a genetic factor.

In closing, I want to say that this site has given me sanity and a place where I do not feel alone knowing there are many friends here who will listen and comfort me.

Thank you God for giving me this much.

June 6, 2005

June 2010, I just reread the story and it was written in 2005 but you know not much has changed...made me almost cry that I am still in the same situation...very sad when you think about it...Joan

Last modified on July 17,  2010