Several years ago, my family and I went on vacation in the mountains. The drive was about 8 hours long. Five days later, we took a 3-hour flight home. Now, I don’t know whether it was the drive or the flight, but I do know that when I got home, I began feeling different. I began feeling what I called “dizzy.” But it wasn’t the kind of dizzy you get when you spin in circles. It was like I was sitting in a sailboat, rocking back and forth.
Some days I felt like I was walking around in an elevator, and I couldn’t get off. I knew this imbalance was something I had never felt before, so I went to see a Doctor. She told me I had vertigo and sent me home with a medication. Two months later, symptoms began getting scary. I would lie down and feel like I was rocking, and there was nothing I could do to make it stop. I eventually got referred to an ENT who diagnosed me with a “vestibular disorder” and sent me to vestibular therapy. Since then, I’ve had every test in the book: ENG, hot and cold air in my ears, CT scan, MRI and many, many more.
Being at home with a newborn and not knowing what was wrong with me, I fell into depression as thoughts that I was going to die began to fill my head daily. The depression was not only because I had no idea what was wrong with me but also because I could not get my family and friends to understand the way I felt. I looked normal to everyone, so I rarely got sympathy, which made me angry and sad.
About two years had passed, when my husband finally said, “I don’t know what’s wrong with you but we’re going to find out together.” Instant relief. We did some research and made some phone calls to find a specialist who knew more about inner ear disorders. On my first visit, he told me I had MdDS and that there was no cure. He said maybe one day I’d go into remission. Since then, I am thankful to have a name for my illness.
I know that I may never be normal again, but God has created a new normal in my life. I have learned to accept my illness and wear it with pride. Even if people cannot tell from the outside, I am working hard to get through every single day, and after almost 7 years, I am still here. Still working, still living, still enjoying everyday. It’s not easy, but it is possible.
Mia
Age at onset: 24
Family vacation, 2007
Mia and her family own two cupcakeries in Texas, and they hosted a Rare Disease Day event at both their locations. Proceeds from the sale of two specially created, themed cupcakes were directed to the MdDS Foundation.
Let’s show our thanks by liking their Facebook page CC’s Cupcake Heaven.
Hi Mia I too had a baby an 4 weeks later lifted my head the hole room was spinning I could feel it in my breathe now every day I am lightheaded swaying as if on a boat with any head movement. I am so sorry has any sort of medication helped you I am desperate for something
I am sorry to say that I have tried two medications, neither of which were helpful. What I have found helpful is moving slower, (not rushing) trying to move my head less so that my eyes don’t have to work so hard and getting plenty of rest. Whenever I get too tired or stressed, my MdDS gets really bad. Good luck and I hope this helps!
I am so sorry;( I know it’s awful I have tried everything too
Bless you, my child! Especially for the fundraising efforts you and your family do!! One day we may be able to look back on this terribly debilitating syndrome and laugh. But not yet. Not yet!
Keep the faith, up the good work, and keep us all in your prayers!
Thanks for sharing Mia. You are doing a wonderful thing fundraising through your family business. Thank you for that!
Thank you for supporting research efforts and to Mia for sharing her life.