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Why I Wouldn’t Give Back My Hemiplegic Migraine Diagnosis for the World

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On December 30, 2014, I walked into the neurologist’s office feeling indifferent and tired. So tired of fighting. Tired of not having answers to give people when my face went slack and I could no longer speak correctly. Tired of sleeping constantly to relieve the pressure in my skull.

I had an MRI three weeks prior to this visit, and those three weeks left me wondering if I had a brain tumor or some other mysterious illness. I kept these feelings somewhat detached from my day-to-day life, however. I didn’t obsess over the change happening in my life.

The neurologist was a giant man. He had his own tics, blinking his eyes a little too hard as he asked me to squeeze his fingers as hard as I could. I failed this test, my right hand being much weaker than my left. This was understandable, though, as I had been having “strokes” for months. This man asked me question after question, but not letting me get into detail about how I had to go to the emergency room on Christmas day or how my left leg felt dull pain constantly.

But then he asked the question that solved the puzzle we had been piecing together for months: “Do you get headaches with these episodes?”

I always had headaches, I told him. Sometimes they were worse, yeah, but I just thought every stressed-out teenager had them. But he knew. Then he told me something that changed my life forever.

I had hemiplegic migraines.

Prior to that day, I had never even heard the word “hemiplegic,” and suddenly it marked every aspect of my life. I was started on a barrage of drugs and sent home without much of an explanation as to what it was. In my silly brain, I felt relieved that it was just a migraine because so many people have migraines. It’s common.

I was so naïve until I Googled the illness and found that I was part of the 0.03 percent of people who are affected by hemiplegic migraines, according to the Migraine Center.

What happened next is something I would never forget. My mother told me not to tell anyone. Her reason being that boys would never date me, and if employers found out, I would never be hired. So I hid my disease. I had an EEG and another MRI the next day, New Year’s Eve, and I picked glue out of my hair as I rang in the New Year with my friends. They didn’t know. I didn’t realize my world had been irrevocably changed.

Eventually, I had to ship myself back out to Boston to live alone, so I was required to tell the people closest to me. No one knew the extent of how this was all affecting me, and I cried myself to sleep so often. I put myself on the subway, walking the mile there and spending 30 minutes on the train to get to my primary care doctor. I was alone. I had to do this alone.

I realized that showering, using a hairbrush and having my hair tied up all gave me a raging migraine. Raging migraines made my face droop. No one liked to look at me like that. So I cut all of my hair off.

Soon, I couldn’t swallow.

I couldn’t drink.

I was “no fun.”

I was restricted to staying home and playing card games with the few friends I had left, and even those friends didn’t know what was happening to me. Heck, I still hardly knew what was happening to me.

Two years later I sit here, fully aware of my mortality and knowing there is no cure. Eighteen years old was too young to find out that you’ll be in severe pain forever, and every relief that you try is a shot in the dark. My migraines have worsened over time, and now everyone knows. I speak now and voice my illness, so that people know how to handle me. I have a life that I thought was taken from me that day — a life I know how to navigate and control. I still know how to smile and have fun. My hair is growing back. I’m making new friends in a new home.

My diagnosis irrevocably changed me, but I wouldn’t give it back for the world. The person I am now is a person I love, and I would never have gotten here without hemiplegic migraines.

Originally published: September 12, 2016
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