I was eight when I first discovered fire in my brain.
In the gentle lull of summer, I awoke to a vice-like pain in my head, which slowly bloomed into a throbbing metronome directly behind my eyes. I yelled for my mom, who promptly provided Advil and water, neither of which did anything to curb the pain. I curled my body in a ball, wedged my head between two pillows and sobbed. The better part of eight hours passed, after which my weary second-grade self succumbed to exhaustion and fell asleep.
My parents have never been the type to make a trip to the doctor without serious cause; anything short of leprosy or spontaneous combustion was merely a chance to “tough it out.” Hence, when my mother booked me a doctor’s appointment the next morning, it was a surprise to all of us. It was my first indication that we were in uncharted territory; something severe and mysterious crept about the fringes of the horizon. We entered the quaint Vermont clinic as zombies might, weary from last night’s episode. Nonetheless, we knew what I experienced was serious, and we were determined to figure out both what was wrong and how to fix it.
It would take several doctor’s appointments, an MRI and an EEG (the process of attaching electrodes to the scalp to detect electrical activity in the brain) to gain any clarity on the issue at hand. In the spirit of medical ambiguity, there was good news and there was bad news. It would appear that I suffered from migraines. This was the good news, I suppose. It would also appear that there was no discernible cure in sight. There were medications, treatments and prevention methods, but I would likely experience these headaches for the rest of my life.
The fire in my brain burned gently and steadily. Most days it was tame, docile even. Then, without warning: an inferno. There was no rhyme or reason to it, it consumed when it saw fit and dissipated as unexpectedly as it blazed. I quickly learned that the science behind migraines is conjecture at best. They may be the result of a faulty vascular system. Or perhaps a chemical imbalance. No, maybe it’s all due to some underlying central nervous disorder. The hypotheses are numerous and varied, all culminating in a truth as frustrating as it is elusive.
No one knows for sure.
As I grew older, the headaches worsened, often brought on by the hormonal shifts that accompanied adolescence. They evolved from mere headaches to full-on neurological disasters. I developed migraines with aura; in addition to the splitting head pains, I experienced visual and tactile disorientation. It was staring into the very center of a lightbulb for 10 seconds straight. A host of glaring, glowing specks reappeared with every blink, clouding my field of vision. Yet unlike the fleeting blows of a lightbulb, these malignant blips refused to abate. They expanded, consuming my line of sight, sending my sense of depth perception topsy turvy. They persisted for hours, needling their way into my eyes, skull and brain.
With the visual aura came its equally destructive sister, the tactile aura. She brushed your fingertips with a gentle tingling sensation, which gradually rippled throughout one half of your entire body. Half of your face, chest, hands and feet, completely devoid of sensation. You try to drink a glass of water, read, enter a lit room, all to no avail. You try to push through it, stick it out, only to find yourself vomiting in the middle school nurse’s office, one hand grasping the wrapper of a pill that didn’t work, the other limp with numbness. One side of your head blazes, the other feels nothing at all.
Despite the mystery surrounding chronic migraines, every doctor you visit will encourage you to identify your triggers. They are multitudinous and ubiquitous. Anything from preservatives to changes in barometric pressure can set one-off. I was put on a number of elimination diets, changed my sleep schedule entirely and cut out caffeine. I did all in my power, and the migraines rolled in all the same.
Unlike many, I’ve had the good fortune of sporadic and infrequent migraines for the most part. In my adult life, I only deal with a serious migraine every two or three months. As a kid, I was less lucky. In addition to my migraines, I’ve dealt with anxiety for my entire life, which I’ve since identified as one of my primary neurological triggers. I now have the autonomy to get the treatment I need to mitigate the adverse effects of mental and physical illness. I have the tools I need to adapt to life with migraines. But they came at a cost. In my senior year of high school, my anxiety was at an all-time high. By the final semester, I found myself waking up to a migraine nearly every day. I couldn’t read, study or even walk around without help. I was constantly nauseous, and the pain was excruciating. My grade point average plummeted, and my absences put me at risk of not graduating.
It was one of the lowest points in my life, and I was in too much pain to acknowledge it. By some miracle of happenstance, I found a clinic that specialized in migraine treatment. I sampled every drug they could give me, desperate for something that could treat, if not prevent the spread of the fire. I took a cocktail of pills every morning, some of which made my extremities tingle intermittently throughout the day. Others made me nauseous. I would go in before any important event and get eight injections in the head, two on either side of my forehead and temples, four at the base of my skull. When that failed, I started taking three-hour IV drips filled with Magnesium. Everything from International Baccalaureate exams to prom was bookended by both treatments. They helped until they didn’t, leaving me in constant limbo. I could wake up to a brain on fire, or a brain at peace, but I could never foresee which. It was an existence of sorts, but not one to be desired.
The first time I was put on a Magnesium drip, they started out by putting me on an anti-nausea drug. As soon as it hit my bloodstream, I went into a full-blown panic attack. I tried to get out of the hospital chair and take the needle out; the loss of control, when mixed with the side effects of the medication, sent me into a state of terror. According to my mother, I pleaded with her for 10 minutes to get me out. My doctor, alarmed by the effects, quickly put me on a sedative to curb the psychological effects of the anti-nausea drug. It was then that I could actually receive the medication meant to curb the pain of the headache.
As the stress of high school waned, I began to feel better, and the cluster headaches subsided significantly. I began taking medication for anxiety, which helped enormously. I took a gap year to curb the stress and did my best to enter college with my headaches under control.
Despite the fickle nature of best-laid plans, the past few years have been relatively manageable as far as my migraines are concerned. They are just as debilitating, but not as frequent as before. They come without warning, incapacitating me for the better part of a day, leaving little more than a dull ache in their place. I live in the knowledge that fire is inevitable and uncontrollable. All I can do is keep a bucket of water handy and try not to stoke the flames.
It bothers me more than it should when people conflate headaches with migraines. It bothers me when someone tells me to pop an Advil or drink some water. Yes, I’ve tried acupuncture, essential oils and meditation. No, they haven’t worked. Yes, I have tried Tylenol for migraines. No, I can’t just power through it. I learned the hard way to be gentler with myself because my health demands that I do so. I learned that I cannot control everything, but that which I can, I will. I found fire in my brain, and it’s not going anywhere. I found fire in my brain, and it’s my responsibility to keep it from consuming me from the inside out.
Statement Columnist Darby Williams can be reached at darw@umich.edu.