Migraines, age 13

 

Migraines

Before I encountered CVS, my first nemesis was Migraines.

I was in middle school when I began dreading sixth-period art class. Each day, I’d complain of a headache, blurred vision, and extreme nausea—soon enough, the vomiting would follow. This continued for weeks, leading to a meeting with my parents. I didn’t hate art class; I wasn’t faking it. So why was this happening every day? Why did the same symptoms arise when I walked into my favorite store, Hollister, overwhelmed by its unforgettable smell and blaring loud music?

After multiple appointments with my PCP, it became clear: strong odors were triggering my migraines. Around this time, I also started my cycle, and unfortunately, they went hand in hand. At last, we had figured it out—I was experiencing migraines, and this was just the beginning.

What started as sensitivity to strong smells (art supplies, perfume in Hollister) evolved into caffeine sensitivity, dehydration issues, MSG intolerance, and the dreadful timing of my period. It all came together as I spent countless days in dark rooms, ice packs piled on my head, and ace bandages wrapped tightly around it for a sliver of relief. When the vomiting began, off to the ER I would go, because that was the only way to get any help for my intractable symptoms.

By age 13 or 14, after a few trips to the ER, I found myself at a children’s hospital in Boston, seeking preventative and rescue medications for my migraines, which were occurring multiple times a week. It was also during this time that I experienced my first bout of medical gaslighting in the ER. As a child seeking help, I was accused of being a drug seeker after just a few visits. Instead of recognizing the desperation in my small frame or the tears in my mother’s eyes, I learned that not everyone in the medical field was there to help. Some were dismissive, and not everyone truly cared.

I tried everything. I took every medication available, enduring brutal side effects and endless trial and error, only to discover I was either allergic to or had the opposite reaction to nearly every treatment. I remember trying a medication called DHE45, which only made things worse before it got better. I’ll never forget those visits to the neurologist, driving to appointments in South Weymouth, following printed directions because GPS didn’t exist back then. The days spent with DHE45 were some of the worst of my life.

I lived like this through high school and into college. In high school, I had a 504 plan because I often couldn’t make it through the day. During my senior year, I missed 54 days of first period and 30 days of second. If it hadn’t been for my mom’s unwavering support and the neurologist I still see today, I might not have graduated. I refused to let migraines dictate my life. I played sports all three seasons and took all honors classes. I was determined not to be defined by this horrendous part of my existence. I think this was when I started making sure that, despite the obstacles I faced, I would lead a “normal” life.

What disappoints me as I reflect on those times is that not one doctor—not one of the five neurologists I saw—ever made the connection between Ehlers-Danlos and my migraines when I was so young.

Fun Fact: Kids who grow up with migraines often develop cyclic vomiting syndrome as adults!