Migraine attacks started before I was five years old. In addition to my own experience, I watched my father suffer. It was a frightening thing to recognize that Migraine was more powerful than my daddy. In my eyes, my daddy was this powerful superhero who could do anything. Yet even he wasn’t powerful enough to stop Migraine.
Because I was born into a family with a strong genetic load for Migraine, it was always taken seriously. My pain was never questioned and my need for a dark, quite room was always respected. There was no such thing as stigma in my family.
My grandmother was responsible in such a Migraine-positive environment. She was a Migraine advocate ahead of her time. She taught me about triggers, lifestyle management, and self-care tips. She also explained that all the weird symptoms were a result of my brain over-reacting to the world. It would be decades before researchers confirmed all that Grandma instinctively knew. She made sure I had a good Migraine education.
Despite that strong beginning, I didn’t receive my first abortive treatment until age 18 and was 22 before I was offered a preventive. By that time, Migraine had progressed to chronic, complicated by medication overuse. With the help of a caring headache specialist, I was able to break the cycle of overuse and finally find an effective acute treatment by age 25. It would be fifteen more years before I started a preventive.
Eventually, I did find effective treatment for Chronic Migraine, but not before I got too sick to work anymore. At 45 years old, I was totally and permanently disabled.
In the interim period before finding Migraine relief, Cluster Headache turned my life upside-down. It was clear from the first attack that these were nothing like the Migraine attacks I’d experienced my entire life. In the six months before diagnosis, Clusters ravaged my life like an out-of-control forest fire. My children, then two and seven were terrified I might die. I nearly lost my job and my marriage before finally getting a diagnosis and proper treatment.
It’s been almost 19 years since that first attack. I have a good headache specialist and an effective treatment plan. Despite this, I’m still diagnosed with chronic Clusters, getting only a one or two-week break between cycles. Even after all these years, nothing scares me more than facing down a Cluster attack without the means to stop it.
In the fall of 2007, an internet search led me to Teri Robert. It was a day that changed my life forever. She called Migraine a disease and insisted it be taken seriously. Her words validated everything my grandmother taught me. All those old lessons came flooding back and decades of self-doubt washed away. Everyone around me had been wrong about Migraine. I began pouring through journal articles, learning everything I could about Migraine.
It was the first Migraine Awareness Month in 2012 that sparked my passion for advocacy. Teri started a blogging challenge, which I was happy to accept. For the first few years, I was content to participate from the sidelines. Those early blogging challenges allowed me work through decades of Migraine mistreatment and mismanagement. It was a form of therapy—and it worked.
By 2014 I’d been invited to write for Migraine.com and discovered that my words had the power to reach others in a positive way. One afternoon I received a phone call from Teri. That call was surprising and humbling. I had no idea that she’d been reading what I wrote and cared enough to reach out. As our friendship developed, she encouraged me to take a more active role in national advocacy. I started attending patient conferences and developing friendships with other advocates. As my writing improved, so did my confidence.
In May 2016, I received two phone calls on the same day that propelled me into greater responsibility as an advocate. First, Chris Hannah called to inform me that he was retiring and asked if I’d be willing to take his place leading the Cluster Headache Support Group. I spent nearly a week trying to convince him I wasn’t the right person for the job, but he wouldn’t take “no” for answer. A few hours after the first call, Teri called to ask if I’d consider a leadership position with the American Headache and Migraine Association (AHMA). Both calls were unexpected. If I accepted one, or both, my days of quietly working in the background would be over. It was time to step up and lead.
Migraine took away the career I loved, only to give me an even greater “second act.” Never, in my wildest dreams, could I have imagined what would come next.
In 2017, I left Migraine.com to work with Teri at HealthCentral. We’d become close friends and quickly discovered we worked well together, too. For most that year, we tossed around ideas for an online Migraine education resource that was truly comprehensive, accurate, and patient-friendly. By early 2018, we were ready to make those dreams come true. Within a few months, we launched the first version of MigraineDisease.com. We wanted to be ready in time for this year’s Migraine and Headache Awareness Month, finally giving the six-year-old Blogging & Social Media Challenge a permanent home.
In July, the Cluster Headache Support Group will host its first patient conference. My time spent working with AHMA prepared me to lead the CHSG team through the process. It’s been a steep learning curve and I’ve enjoyed almost every minute of it. Most importantly, I have the satisfaction of knowing that the work I do now will have a lasting positive impact on other Migraine and Cluster patients.
Migraine and Cluster have taken so much from me over the years. Thanks to advocates like Teri Robert, I’ve learned to use my experiences with Migraine and Cluster to benefit other patients. I am determined to transform my own pain into a path of healing for others to follow.
