Living with Mal de Debarquement Syndrome: Beginning the treatment

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my third in the series. 

After my appointment with the functional neurologist, we arranged for me to come in for a one day intensive to work exclusively on the Mal d Debarquement Syndrome symptoms using a variation of Dr. Dai’s exercises.

Dr Z had begun using optokinetics on a large tv screen several months prior and had had mixed success with it, so he wasn’t really sure what to expect. Eric (an intern) was there to observe.

I sat down in front of the tv screen and prepared for the worst. He then attached an oximeter to make sure I wasn’t going to start having a panic attack. Once he had started the optokinetic program (bars in black and white going to the left), Dr Z stood behind me and moved my head gently from side to side a few times. It definitely made me feel uncomfortable, but I wasn’t dying.

Afterwards, I sat for a minute to feel things stabilize and then stood up and focused on a point to see how my balance was. AND IT WAS BETTER. We all burst into grins. It was the last piece to my puzzle! Dr Z and Eric hadn’t seen such a clear result from the exercise so they were excited, and yes, I was beyond thrilled!

The rest of the day, we repeated the exercise every hour or so until it was time to go home. Each time I felt a little better. Although, my goodness, it made me tired! So, so sleepy. But that’s common when you’re doing such intense exercises, so it was a good sign that things were changing.

I came in two more times that week and the next and I could slowly feel my stamina build. Each time I went a little longer before it felt like the MdDS was back to normal. By the end of two weeks, it had gotten to the point where instead of constantly swaying myself backwards, I just swayed in place. Which was a welcome improvement!