Living with Mal de Debarquement Syndrome

Mdds 2June is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome over the next five weeks.

After my second concussion, I had major issues with vertigo. I had never known that there were so many different types! For me, it seemed to boil down to two different types of dizziness.

The first one was where the world was spinning around me.

The second one was what I called “sea legs”, as it felt like I was walking like a drunken sailor when I moved.

After 5 months, I was diagnosed with Secondary Endolymphatic Hydrops and following the treatment for that led to a dramatic decrease in my vertigo, mainly the spinning sensation.

However, I still struggled with feeling like the ground was stable underneath me and my head never seemed to know where it was in space.

Little did I know that this second type of vertigo was a part of the rare syndrome called Mal de Debarquement Syndrome (MdDS).

It would still take another 9 months to figure this out after my hydrops had been cleared up to discover and be diagnosed with MdDS.

After clearing up the SEH, my MdDS symptoms were as follows –

My head never knew where it was in space.
I could not stand still for the life of me; I would rock back and forth unless I stood with my legs widely stanced diagonally.
There was still no way I could ride in the back seat of a car. I was only truly comfortable (and I sometimes felt better than normal!) while driving.
Busy patterns made me nauseated
Lots of movement around me brought on the sea legs feeling
If I laid on my back, I would start to feel like I was rotating to one side, or occasionally, I felt like I was laying on a gently moving raft.
The only way I would feel stable laying down was if I laid on my stomach for at least 30 minutes. Then sometimes I could switch to laying on my side.

In December 2014, all of these symptoms clicked into place when my functional neurologist suggested that maybe I had Mal de Debarquement Syndrome. I had never heard of it (who has?) and immediately researched it at home. It made sense! It explained all of the above symptoms.

Although, it was frustrating to have the diagnosis take so long to get to, it was a relief to find out that I wasn’t crazy!