My life changed on April 17th, 2015. I was a promising nursing student, an advocate in the adoption community, a dedicated wife and engaged mother.
My husband, young daughter, and I were attending our first drive-in movie to celebrate an achievement in my nursing program when my sudden onset headache struck. Prior to that moment, I’d been privileged to never have a headache that Advil couldn’t resolve.
That weekend to two emergency room visits, my first ambulance ride, and a 5 day hospital admission to a neurological institute in Phoenix. After 5 days of every migraine medication available and no resolution of the quarter shaped sharp, stabbing pressure over my left temple I was discharged and told by my neurology resident that my condition was probably best left to a pain management doctor and anxiety meds as I was likely bringing the headache on myself.
It wasn’t until November, 7 months later, that I finally saw a headache specialist (the best in the country as far as I’m concerned). Prior to seeing her, I’d seen countless providers, most of whom I had to explain what my disorder, Nummular Headache was. My headache specialist was the first provider I saw who not only knew what my condition was, she had seen a handful of patients with it as well.
Today, three years later, I’m blessed with that same amazing headache specialist still trying to help me find normalcy, but my options for treatment are limited as much of the neurological community, let alone medical community, knows nothing about my headache syndrome. In 2015 when I was diagnosed, the first article that came up in a Google search of “nummular headache” was one diagnosing Harry Potter’s headache as Nummular. Talk about headache stigma.
Today, I’m no longer a nursing student as I live with my headache, still a quarter in size above my left temple, every day, 24 hours a day. I no longer write for and speak in the adoption community. My husband has become my primary care taker, and my daughter has to ask how my head is before asking if we’re attending an event. It’s soul crushing.
But I am blessed. Even though my headache has stolen so much from myself and my family, I am not terminal. I am one of the few headache patients out there who has access to a headache specialist. I have health benefits that have approved every experimental treatment we’ve come up with (from Ketamine to Cyberknife).
My life could be much different. I know in my life we won’t see a cure for Nummular headache, but what I can hope for is education and better treatment options.
I’d really love to retake some of my life back.