Vicki Appel, a pediatric nurse, went for a relaxing massage and ended up leaving in an ambulance, experiencing severe vertigo and vomiting. Little did she know that 10 years later she would be living her life with chronic and disabling vestibular dysfunction, but without a clear diagnosis.
“I have seen 7 doctors, had acupuncture, taken holistic herbs, and tried vestibular rehabilitation therapy. I have been told to “just live with it,” and I’ve been yelled at by a medical professional for letting others make money off my search for answers,” Vicki says.
“Vicki’s story is not unusual for vestibular patients,” says Cynthia Ryan, executive director of the Vestibular Disorders Association (VeDA). “During Balance Awareness Week, September 18-24, we extend our efforts to raise awareness and financial resources to further our mission – empowering patients to find hope and help along their often difficult and frustrating journey to get a diagnosis, and supporting them whether they do nor not.”
Vicki eventually found a neurologist who listened to her complaints and sent her for more testing to rule out other potential causes of her dizziness. The doctor helped her understand that her tests showed she has vestibular abnormalities, but that she could not be pigeonholed into one diagnosis. He was honest with her about the unknowns of her condition and her prognosis. Just being heard and respected allowed Vicki to begin to move forward in her life as a vestibular patient.
VeDA’s motto is Life Rebalanced. For Vicki, living this out has meant simplifying her life by cutting down on her work, only driving locally, and using a shopping cart for stability at the grocery store. In addition, she must avoid noisy and crowded environments because there is too much stimulation, which triggers her vestibular symptoms.
“Don’t get me wrong. I have my days where I want to punch a pillow, scream and cry out of frustration since I feel like I have no control over my body and it is playing a horrible trick on me. I have no say in when or where my next vestibular attack will come, but when it does happen I’ve learnt to ride it out using time, rest, and Valium, which helps quiet my symptoms.”
“I am not going to stop living my life but am working around the obstacles. I’m always hopeful that with more research, new tests, therapy or medicine will come along. Until that day comes, this is my new “normal” and I own it.”
VeDA celebrates the courage and determination of Vicki and millions of people like her suffering from vestibular disorders.
About VeDA: VeDA is the leading international organization people turn to for help with vestibular (inner ear and brain) disorders. They are an authoritative resource, publishing information that is clear, reliable, and scientifically objective. VeDA supports people with vestibular disorders by connecting them to health care specialists and support networks. VeDA promotes awareness for vestibular disorders through testimony and advocacy.
Balance Awareness Week (BAW) is VeDA’s signature annual event whose purpose is to raise public awareness about vestibular disorders and encourage people who have experienced symptoms like dizziness or vertigo to become informed about their condition and seek help from a vestibular specialist. By increasing awareness we reduce the time it takes patients to receive a diagnosis and put them on the road to recovery.