Participant Page: Help Others With SCDS
Raised so far
Help Others With SCDS
I am raising money to help people with vestibular disorders, including SCDS which has greatly affected my life. The funds raised here will enable the Vestibular Disorder Association to continue providing information and supportive outreach programs to those of us who live with disequalibrium and dizziness.
...Semicircular Canal Dehiscence Syndrome was discovered in 1988 by Dr. Minor at John Hopkins Medical Center. It was also there that some of the first surgeries took place to treat the condition, a topic that I review and think about on a daily basis.
SCDS is basically the thinning or complete absence of the part of the temporal bone overlying the superior semicircular canal of the vestibular system. Some people with SCDS have mainly the dizzy symptoms. This include having various types of vertigo induced by noise, also known as the Tullio Effect. Noise, movement and even taking in a busy visual scene can all give the person with SCDS a feeling of becoming dizzy and disoriented. Other people with SCDS experience something called autophony, meaning they hear sounds within their own body. One news reporter referred to this as “Edgar Allen Poe-like symptoms” and he wasn’t too far off. With these symptoms you hear internal sounds such as your own heartbeat, the swooshing sound of your pulse, the sound of your eyeballs moving in their sockets, and the loud sound of your footsteps from within. And of course, the sound of your voice as it sounds from the inside of your head, which for me sounds like someone mumbling into a microphone. There are still others with SCDS that have low frequency hearing loss.
I am lucky enough to have dodged the hearing loss symptoms but have made up for it with plenty of vertigo and autophony.
What I’ve discovered is that when you have SCDS it can be a big scary world out there. There are noises everywhere, and the majority of them will bring a wave of dizziness, similar to the sensation of stepping off a Tilt-a-whirl at an amusement park. The noise doesn’t even have to be loud to create this affect. Sometimes it’s the low hum of people in conversation at a coffee shop or restaurant that slowly brings me to a point of mind-numbing dizziness. During the “before” diagnosis part of my life I tolerated these waves, actually ignored them really, assuming that I was worn down or overtired, and that the sensation would go away if I drank more coffee, like the good Seattlite I am. But now that I know the reality, I am learning from online resources such as the Vestibular Disorders Association on how to limit my exposure to a big loud dizzying world and find environments and a lifestyle that coincides with my condition.
To read more about the experience of living with Semicircular Canal Dehiscence, you can read my personal blog at http://onatiltawhirl.wordpress.com.