My name is Katie Miller, and I have had MdDS since 2002. I took two short, uneventful flights on a Friday and two similar flights back on the following Sunday. I woke up that Monday with the unnerving sensation of walking on mattresses, and it looked like the walls were moving. I had absolutely no idea what was going on.
I was a very healthy, active 29-year-old woman and this hit me out of the blue. I went through every test in the neurological and ENT book, and there was no explanation for my symptoms. We did find that I had a vascular loop behind my left ear, so I had brain surgery to correct that in the hopes that it would stop “the dizzies.” Unfortunately, that surgery had no effect, and I call it my gratuitous brain surgery.
I have had moments of remission and at one point was “dizzy free” for four years while taking amitriptyline at night. All the while, I still had no idea what was causing my dizziness. As the Internet widened, my husband continued searching for answers as we’d found that unless you can medicate or surgically attack a “disorder” most physicians aren’t interested. He stumbled upon this Foundation, and we finally had a name for what I was experiencing.
The relief was amazing. No, I wasn’t making it up. No, I wasn’t depressed. No, it’s not vertigo or migraines. Knowing that you are not alone and not crazy, is hugely comforting.
I have been to Mount Sinai four times in the past three years, and they have given me periods of relief. The dizzies seem to come back after an illness and/or emotional stress. Since those things are a part of life, I’m continuing to explore other treatments. In April, I’m heading to “Dizziland.” I’m hoping that as testing has developed over the years, we may find an additional underlying cause or trigger.
My best advice to my fellow dizzy friends is to NOT GIVE UP!!! I still fly, travel, and have run two (very slow) marathons. Do not let this damn disorder steal your light or your life. Sleep when you need to. Cry when you need to. Yell, scream, shake your fists and decide the dizzies will not beat you. Share with your support system and don’t be afraid to ask for help. We can do this and I believe in you. I refuse to let MdDS steal my joy.
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