5 minute read
We All Have Headaches, Sweetie
Megan Swartzfager
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My first migraine hit me like a bus during my tenth-grade theater class. I must be coming down with the flu or something. Nothing but severe viral infection could explain the pain in my head—explosive at first, then throbbing and all-consuming, sucking sensation out of the rest of my body—or the sudden intense nausea I felt. By the end of the school day, I knew nothing but pain. A pop quiz that day would likely have gone completely unanswered. I couldn’t remember if I had eaten lunch (I hadn’t—I found my bagged peanut butter sandwich squished at the bottom of my backpack that evening) or what my homework was or which friend I was supposed to meet for tacos that weekend or if it was actually Italian food we would be eating. Fortunately, I was only fifteen years old and therefore not expected to drive myself or my four younger siblings to and from school. I don’t know if I could have fit a key into the ignition of a car, and I certainly know that I shouldn’t have. I rode in silence in the passenger seat of my dad’s car and took my temperature as soon as I got home. No fever. What’s wrong with me? I thought I must have been dying. As incomprehensible as my nascent chronic migraine was to me that first day, I had no idea that this pain would also be illegible to friends and doctors alike.
I grew up, as many children do, only being allowed to stay home from school if I had a fever. So, for three days of migraines for which I did not yet have a name, I persevered. When I finally explained my pain to my mom, a former migraineur herself, she made an appointment with a local nurse practitioner who diagnosed me vaguely with “chronic headaches” and wrote a prescription for gabapentin, an anticonvulsant used to treat postherpetic neuralgia (a complication of shingles) and off-label to treat neuropathic pain and a host of other issues from anxiety disorders to alcohol withdrawal. Though I noticed some reduction in pain that I would later be told was occipital neuralgia—caused by inflammation of the nerves in the scalp—my migraines were as fierce as ever. [1]
When I showed up at school complaining to friends of what I believed was a migraine, I was told that if I really had a migraine, I wouldn’t be functional enough to go to school. I had worked hard to push through pain that, to me, was more real than anything else. My healthcare provider had done what she thought was best. I was sure if that wasn’t working, it must somehow be my fault. Not wanting to be a bad patient, I had to deal with the pain, so I did. Hearing doubt from people I cared about, however, made me question if my pain was real at all. Maybe everyone feels like this. Maybe I’m making this up. If the medication isn’t working, maybe the pain is all in my head in more ways than one.
Eventually, I would see a neurologist who, after CT scans and blood tests to rule out a variety of potentially life-threatening pathologies, diagnosed me with chronic migraine. He told me to try yoga and stop drinking coffee.
I did not believe these interventions would work—and perhaps that is why they did not—but I tried them anyway. I did not seek medical help again until my sophomore year of college when my life was covered over with the fog of migraine. There were days when I felt better than others, but there were almost no days when my head did not really hurt. I slept little, ate less, and struggled to sit through my classes. After a particularly grueling day in which I had to leave class to sit in a dark bathroom and gather strength to make it until the end of the day, I decided I needed a doctor. I skipped class and made an appointment with student health. To my pleasant surprise, the doctor who saw me had previously worked in a neurology clinic. I was certain this woman would finally understand and validate my pain. “I have headaches sometimes, too, sweetie. It’s just something we all have to deal with,” she said before I left her office with no recommendations for treatment and a fire in my stomach. I knew this pain in a way that was more real than anything else in my life. Why couldn’t anyone else see that I was suffering?
Another trip to a neurologist and I had a prescription for a newly approved migraine prevention medication: a monthly injection that I administered myself— in panting breaths and cold sweats due to my fear of needles—once a month. It worked beyond my wildest dreams. My near-daily debilitating migraines were reduced to a few moderate bouts per month. The medication was free for a year. Then I learned that it would cost several thousands of dollars for the next year, even with my insurance. I went cold turkey, and the fear was almost as debilitating as the migraines themselves. My migraines were never as frequent as they were before this medication, but for many months I panicked every time my vision blurred momentarily or I smelled something I wasn’t sure was really there, both previously signs that I would soon be bedridden by a migraine that could last multiple days.
I have migraines occasionally now. One or two a month. Just enough to remind me that I haven’t escaped the invisible illness that has followed me my whole adult life—an illness to which no one but me can bear full witness. My chronic migraine is woven into the fiber of my being. It has made me a critical asker-of-many-questions when it comes to biomedicine, as I now want evidence that interventions will work. It has made me more empathetic, gentler, and more sensitive to the pain of others. But my new relative absence of pain brings with it the same uncertainty and doubt that I saw and heard on the faces and in the voices of friends and doctors for years. Now I wonder, were they ever really that bad? Did I dream my migraines to disguise other pains? Am I a liar?
1. Gabapentin has been shown to have little or no efficacy in migraine prophylaxis. See Mattias Linde, Wim M Mulleners, Edward P Chronicle, and Douglas C McCrory, “Gabapentin or pregabalin for the prophylaxis of episodic migraines in adults,” Cochrane Database of Systematic Reviews 6, (2013): CD010609, https://doi. org/10.1002/14651858.CD010609
-Megan Swartzfager is a first year grad student from Oxford, MS, pursuing an English MA in Literature, Medicine, and Culture.-
