As we all know, being diagnosed with a vestibular disorder can come with a handful of mixed emotions and feelings. Relief from finally getting answers, frustration around not being able to do things “like I used to,” anger at the situation, anxiety (lots and lots of anxiety), and loneliness. It is out of this need for community that I started the Charleston Dizzy Group in January of 2018, along with my physical therapist. As a Licensed Professional Counselor, it seemed like a great way to give back to the vestibular community.
My vestibular journey began in 2014 with random bouts of car sickness on road trips. It morphed into a week-long headache accompanied by dizziness that never seemed to go away.
Trips to the general practitioner resulted in more questions than answers. Then the brain fog and confusion set in, causing me to mix up my children’s lunch boxes and think that the cereal box belonged in the garage, not the pantry. I forgot how to get to places—roads I drove on multiple times a day as I shuttled my kids to and from school. At the time, we had a red couch in our family room, and once when we were cleaning up, I held up a red pillow and said, “I know that I should know where this goes, but I can’t figure it out.” My family looked at me like I was joking. The red couch was right in front of me!
Thankfully, I admitted these weird “symptoms” to a friend, who is a physical therapist. She quickly got me to a vestibular physical therapist who knew exactly where I needed to go. Shortly thereafter, I was at MUSC in Charleston, SC, sitting on the exam table while Dr. Habib Rizk turned my head this way and that. Other tests followed, and soon I had the diagnoses of enlarged vestibular aqueducts, vestibular migraine, and, a little over a year later, persistent postural perceptual dizziness (PPPD).
I kept telling Dr. Rizk that as soon as I felt well enough, I wanted to start a support group. It was so important to me that others with vestibular disorders know they aren’t alone. Just talking with others who understand your symptoms goes a long way in the healing process. The Charleston Dizzy Group has been meeting faithfully since January 2018. We meet every other month, with our final meeting of this year scheduled for November 15, 2025. It is an honor for me to walk alongside these other vestibular warriors as we navigate the ups and downs of living dizzy.