The common misconception that clouded my first migraine experience

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I remember my first migraine in intense detail, even though it happened seven years ago. Sunlight was pouring through the blinds in my bedroom. I was 18, sitting on my bed reading – wrapped up, as usual, in an imaginary world. My six-year-old brother was close by. I had been left to keep an eye on him while my parents did some weekend errands. 

When words started to disappear from the book, I blinked and kept reading. At first, I thought the disturbance was just a floater, but my vision was growing fuzzier by the moment. Before I knew it, I could no longer see most of the words on the page. Little holes had been punched through them. They were jaws with missing teeth. 

Something was terribly wrong. Heart pounding, cold with terror, I got my little brother into his coat and shoes, and we ran to the bus stop at the end of our lane. On the bus, I held myself together for the sake of my puzzled brother, who could tell I was upset. 

I could just about see, but my vision was all edges, no longer whole and clear. By the time we crashed through the door of the opticians, I was almost in tears. “Please,” I said to the stunned receptionist, “you have to help me. I’m going blind.” I was shepherded into an examination room. As I sat in the chair, shivering, the optician asked me to describe what I was seeing. Now that I was sitting down and my brother was safe, I was just about calm enough to concentrate.

Instead of looking past the phantasmagoria, I made myself look at it. A luminous bolt of lightning curled around the left side of my vision, vibrating with colours. If I hadn’t been so scared, I might have thought it was beautiful, like something out of a dream. 

“It’s like a zigzag,” I finally said. “A multicoloured zigzag.” My hands shook. “Am I hallucinating?” The optician, who had looked troubled, now relaxed. “No,” he said. “You don’t need me. You need to see your doctor. You’re having a migraine.” 

My first reaction was bewilderment. I knew quite a lot about migraines – my mum had them. They caused her excruciating pain, but as far as I knew, she had never experienced any problems with her vision. 

My parents were called to pick up my brother and me from the optician. By that time, my vision was starting to clear but now there was pain seeping into the left side of my head. It wormed into my skull like a nail, and each tiny movement hammered it deeper. I was bed-bound for the rest of the day. Soon after, I was diagnosed with migraine with aura. 

I’m now 25. Migraine is a widely misunderstood condition with no permanent cure. For me, it promises crushing pain, vomiting and slurred speech – yet I’ve been told that it’s “just a headache”. The aura that precedes it is the worst part, leaving me unable to read or write. All I can do is lie in bed and wait for it to end, and I stay fragile and exhausted for days. 

Nobody knows exactly what causes migraines. I’ve identified two of my “triggers” as chocolate and alcohol. Through careful avoidance of these triggers, and the use of a drug called sumatriptan, I’ve reduced the frequency of my migraines over the last year, but nothing can erase their ever-present threat.

Every time a camera flashes, I flinch, braced for that flash to warp into an aura. I had one attack at night a few weeks ago that left me curled on the floor, sobbing in agony, one white-hot stab of pain away from dialling for an ambulance. 

At university, migraines forced me to skulk in my room with the curtains shut on a near-weekly basis. In my third year, I specialised in the poetry of Emily Dickinson and I began to see migraine in her disjointed imagery. I felt a Funeral, in my Brain spoke to me in a way no poem ever had. Even though I had no solid proof that Dickinson had been a migraineur, I felt she was reaching across the years, telling me she understood. 

Samantha Shannon’s novel The Song Rising (Bloomsbury) is out now.

Migraine facts

• Migraines can last from four hours to three days.

• An estimated one in seven people suffer from migraines.

• Hormonal factors cause more women than men to suffer migraines.

 • Susceptibility to migraines can be inherited, and they most commonly start in a person’s 20s and 30s.

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