My name is Joddie. I am a 47 yr old wife, mother of 3 and grandmother of 3. In November of 2011, I drove from my home in Houston, Texas to Duncan, Oklahoma (a 6 hour drive) to visit a sick relative. Upon arriving in Oklahoma, I felt off, not my normal self. I thought that maybe the stress of the visit had me feeling down. The first night there, I felt as though I was sleeping with my feet above my head, and that was just the beginning. After 4 days I drove back to Houston and have never been the same.
Once I arrived home, I was grabbing walls and furniture to walk. It felt as though I was going to fall over at any second. I had to hold on to the shower walls just to try and shower.
Then came the doctor appointments. I started with the cardiologist, who then sent me to an ENT. The ENT had no clue as to what was wrong, even after doing an MRI. He then sent me to my GP who said he thought it was BPPV. After the Epley maneuver was performed and the symptoms did not go away, he said I needed to live at a higher elevation. Ok, so the husband and I packed up and moved to Arizona (which by the way made me have leave my children and grandchildren). Once there, I found a neurologist who sent me to the Werner Institute for balance disorders in Las Vegas. This was a full year after the initial onset. Within 5 minutes of being at the Werner Institute, a definite MdDS diagnosis was given.
I have tried every medication; some have had lasting side effects which to this day I still get, some have done nothing and some have helped a little.
I am no longer able to work in my profession, my days are a wait and see game. I cannot make plans for anything because I never know how I will wake up or how my day will go. It could start off great with minimal rocking and end up with me in bed by 10 am just trying to maintain.
It has now been 2 years 8 months and 7 days. This is my new normal, my family’s new normal, and it’s horrifying for all of us.
My disorder may be invisible, however, I refuse to be. I want people to know as much as possible about Mal de Debarquement and how those of us who have it are affected. I want them to know that it doesn’t just affect me, but that my entire family suffers because I do.
Knowledge is power. We have to keep searching for that cure, not just for ourselves, but for future sufferers of this rare, not so known disorder.
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