It’s officially the Vestibular Disorder Association’s “Balance Awareness Week,” and we wanted to do our part in creating awareness. We asked Kayla McCain to stop by the blog to share her story on how she found balance with Vestibular Migraine.
When you think of migraine, most people associate the disease with head pain. However, migraine is more than just a headache. Prior to my diagnosis of vestibular migraine, I was completely unaware that there were other types of “migraine.”
I was ignorant around the disease and had no idea that symptoms included anything from dizziness, vertigo, nausea, light sensitivity, sound sensitivity, balance problems, brain fog, ringing in your ears (tinnitus), full body pain, anxiety, depression, muscle spasms, and so on. I also didn’t know that this disease could knock you down several days at a time.
I first felt symptoms of vestibular migraine on Halloween of 2016. I thought I was having a stroke but would later learn that I was having my first experience with a migraine attack. My whole body felt like it was melting, I couldn’t walk straight, and bright lights made me want to crawl into a dark hole. This went on for months, I saw several doctors, experienced several diagnoses until Dr. Beh at UTSW in Dallas, TX officially told me that I had vestibular migraine.
As I said before, I had a hard time believing that I had “migraine,” when I wasn’t having headaches. I was dizzy and light sensitive. That couldn’t be migraine, right? Unfortunately, vestibular migraine affects 1 percent of the population, but is still scarcely known as it is suffered. There is nothing more frightening when you can’t figure out why your body is suddenly not functioning correctly.
According to VeDA, approximately 50% of vestibular migraineurs go undiagnosed or mismanaged to this day. It’s also a task to find a doctor that can give a proper diagnosis so many people self-treat, which is what I did in the beginning. By self-treating is how I discovered that blue light blocking glasses were a key part of my relief toolkit.
Before my Migraine Shields, I couldn’t leave the house to go grocery shopping or out to eat because the lights were too much. I’m a social person so to be able to have a tool to help me with my “new normal,” was crucial.
It’s funny because I had to learn to find “balance” with my balance disorder. I still am bucketed under someone who is chronic, but I feel mostly “normal” because I have learned how to cope with vestibular migraine.
For me to have my best days with this illness, you will find me wearing my Migraine Shields daily coupled with a few preventative meds, self-care such as massages/yoga, and supplements such as magnesium.
I get questions a lot on how I have resumed life “normally,” and I can honestly say it takes acceptance, perseverance and the advocation for your health. It’s important for you to find things that work for you as preventatives and to have measures that you can whip out when a migraine attacks.
To learn more about my story and how I live with vestibular migraine, head to my blog TrueKaylaisms.