"Tell the story of the mountain you climbed. Your words could become a page to someone else's survival guide."
I am excited to meet you and be a part of the VeDA family. Vestibular migraine has impacted my life in several ways.
My life before vestibular migraine was full of public speaking, writing for publication, photography and taking long walks with our dog. Photography provided me calmness and focus. Walking our dog was the highlight of my day.
My vestibular syptoms began April 7, 2021. I was walking our dog and was struck with the most terrifying and unique feeling I have ever experienced. The tunnel vision, and total loss of balance were my initial symptoms. I fell, face first, in the middle of the street. My husband immediately took me to the ER. I had no waiting time, they took me to a room once they reviewed my history and the course of events. After many scans, I was diagnosed with vestibular migraine. My discharge order was to follow up with my headache specialist (I also have intractable chronic daily migraine.) the next day. He validated the diagnosis of vestibular migraine and referred me to the vestibular specialist at the headache center where I am managed. With intense testing, history and physical and review of my vestibular attack, she validated my diagnosis.
Managing my symptoms has led to many medications, neuromodulation and physical therapy for my gait. None of the therapies have provided relief of vestibular attacks, their intensity or duration. Alice in Wonderland experience occurs several times a week, lasting a few hours to all day. I am walking with the assistance of a cane. The head and ear pain accompanying an attack are resistant to standard abortive medications.
There is a silver lining. Vestibular migraine has introduced me to fellow warriors. I also believe it is through my vestibular migraine that I am a more resilient, empowered, stronger, braver and more empathetic person. My advice to others beginning their journey includes educating yourself to be an active member in your care team and joining a VeDA support group. I guarantee you will feel camaraderie, learn from group members and share with fellow vestibular warriors “who get it”.
My goal is to make the invisible…visible.