Chronic Pain

My Life As A Migraineur

A life filled with chronic migraines is a trial by fire. You come out the other end with strength you didn't even know you had.

Waves of electrical activity, like a thunderstorm, wash over the brain: migraines are a neuro-physiological event. There is no cure, but there a thousands of remedies. Women are three times more likely to suffer from them–in the recent past, migraines were thought to be brought on by hysteria. I’m worried I can summon a migraine just by writing this, even though I know they are not psychosomatic. I had a visual migraine, one with an aura, a week ago: in other words, I was hallucinating while I was out getting a coffee on an otherwise normal Tuesday morning.

Oliver Sacks describes his first migraine aura as “an enormous shimmering semicircle stretching from the ground to the sky, with sharp zigzagging borders and brilliant blue and orange colors.” I saw a clear geometric shape, or pattern. It looked like a crystal, like a geode with the same jagged edges. It got bigger and bigger, and the edges began to shimmer. Migraines, and their auras, arrive precisely when I’m at a crossroads in my life. They persist because of my PTSD as a rape survivor, and I’ve learned to live with them.

At 17, I was a mad girl poet who loved Sylvia Plath and dressed like David Bowie. People in my small Midwestern town laughed, but I didn’t care. This was the proto-me, an early version: super sensitive, artistic, tough on the outside. I was also under the influence of Edgar Cayce and Herman Hesse—and about to get my first migraine. It began on a bright sunny day in downtown Kenosha. My best friend, Kathy, and I were fabric shopping. She was a designer, and had an idea for a dress. A bold geometric plaid caught her eye, black and white with red accents, like a Mondrian.  As she draped the bolt of fabric across her body, the colors began to hurt my eyes. They were too intense. They were vibrating.

Migraines, and their auras, arrive precisely when I’m at a crossroads in my life.

I squeezed my eyes shut, embarrassed. Was I was losing my mind? When I opened them, the whole world was black and white, except the edges glowed like a prism. As if I was underwater, and my goggles were cracked.I broke out into a cold sweat. I felt the color drain from my face. Kathy grabbed me, asked what the hell was wrong, and walked me outside. The aura only lasted ten minutes, but the migraine hit about an hour later. A freight train roared into my head. I lay in my darkened bedroom, stunned by the intensity of the pain; cowed into perfect submission, and perfectly still, with a cold rag over my eyes.

A few years later, I moved to Florida, and  the migraines traveled with me. In the land of frangipani trees, and pink hibiscus, I learned to keep a stash of meds, and buy blackout blinds. I now knew how to acquiesce and how to surrender to the migraine’s onslaught. With my black market meds, I’d sleep for 24 hours in a dark, quiet room. I’d wake up, shaky and hungry, but no headache. It felt good, like a baptism by fire. I enjoyed it–not the headache, of course, but the rising from the dead.

The author, Lillian Ann Slugocki, pounding water before a migraine.

In my 20’s, surrender was all I needed to know. Those headaches felt like clear cutting in the forest; slashing and burning trees– removing dead weight, making room for new growth.  I was also addressing my rape for the first time, and assumed that once I was healed, the migraines would never come back.

In my 30’s, now on the Upper East Side in Manhattan, the auras were gone. Now, it was sinus headaches that would morph into migraines.  I also had a weird form of agoraphobia. I couldn’t walk more than a one block radius in any direction, without badly disassociating, I had new meds for the migraines, which allowed me to function, but I was still trapped. I countered by reading Alice Miller, Clarissa Pinkola Estés, and listening to the relaxation tapes of Louise Hays: the triad of female empowerment in the early 90s. I also finally understood, or had to admit, my migraines were chronic. They would always be a part of my life. My ritual of the darkened rooms, the relaxation tapes, the cold rag, the silence– helped me stay in control, ride the waves.

I finally understood, or had to admit, my migraines were chronic. They would always be a part of my life.

Recently, however, my life as a migraineur spun out of control again. In the spring of 2016, I was diagnosed with severe intractable migraines– which lasted almost four months. The pain meds I’d been using for 25 years were powerless against them. This led to several trips to the emergency room, in the middle of the night, often in the pouring rain. All  types of therapy were offered: steroids, oxygen, antihistamines. The isolation, embarrassment, and shame were worse than the pain. Every day revolved around the headache. When I woke up pain free, I was exultant, until I started to move around, make coffee. I could calibrate in those first few moments, exactly how bad it was going to be.

If I called in sick to work, I didn’t use the word ‘migraine’. Food poisoning always sounded better. I was still tapping into the shame, or cultural “hysteria” of the female migraine. Yet being ashamed of having migraines because of their cultural baggage seems counterproductive: some of the most accomplished women I know also have them. We send private messages to each other over social media, providing solace, succor, and advice: what meds might work, maybe massage, piercings, magnesium, and how X had tried Botox with success. One such friend stayed online with me, as I tried a new med for the first time: a triptan. The side effects sounded terrifying; pressure in the chest, dizziness. This is true sisterhood.  She was my migraine shaman. It broke the isolation which probably helped more than the meds. Paula Kamen also writes that the worst thing about chronic daily pain is “emotional suffering – from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads,” and maybe we’re all crazy.

These days, I tend to my migraines in the same way I might tend to a small, angry child. What should I feed it? Does it want chocolate, coffee, French fries? Would a hot shower make it feel better? Should I just lie down, but wait… maybe a walk is better. I should be more hydrated, eat more protein, but the thought of real food always makes me nauseous. Sometimes I spend three days in a dark room, just me and my head on fire, and lie to my friends and colleagues about why I’m not returning phone calls, texts, emails. When you’re that sick, life telescopes down to only the strategy of managing that pain.

We migraineurs are a type… We know when to fight, and when to relinquish control. We always recognize our tribe.

However, the tenacity required to survive this is transformative. It’s now part of my narrative, and my DNA. I’ve learned when to be proactive and when to let go. Some things are simply out of our control, and the more we fight, the worse it gets. This is a tough lesson to learn, but it has served me well in life. If after yoga, caffeine, pain meds, meditation–I still have a migraine, I just surrender. After decades of chronic pain, I understand I did nothing to cause this, I’m not to blame, there’s nothing wrong with me, and what can I binge watch on cable?

Siri Hustvedt writes “The changes in the nervous system wrought by an oncoming headache, the lesions caused by a stroke or a bullet, can affect the brain’s internal corporeal map, and we metamorphose.” I believe, we migraineurs are a type: both men and women, but mostly women. We know who we are. We are driven, intelligent, with an incredible work ethic. We know how we’ve been transformed, metamorphosed. We know when to fight, and when to relinquish control. We always recognize our tribe.

Top photo by Flickr user XoMEoX published under Creative Commons license.