From the Patient’s Perspective: The Migraine Experience
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Headache is like the dread windstorm
No one knows its course
No one knows its full time or its bond.
“That no one dies of migraine seems
to someone deep in an attack as an
ambiguous blessing.”
Be it an anonymous Mesopotamian poet carving on clay tablets 4000 years ago or Joan Didion writing in her White Album, those who personally experience migraine are often the most adept at describing and explaining the “migraine experience“. In this issue, we introduce a new and recurring feature that offers readers the opportunity to examine migraine from the patient’s perspective.
Brain Pain
Ilene Haddad
It starts with a blinding sucker punch to my right temple. Now my head is a giant grape in a vise, ready to split open and ooze its juices down my neck. The pressure increases; the nausea erupts from my gut. Time becomes thick with throbbing and worry. I try to escape its grasp, but the struggle makes it worse. Sometimes medicine works—but not today.
I crawl into bed, defeated, yet sleep evades me. The pain is so extreme it hurts to lie down. Then it hurts to sit up. I walk in circles trying to outpace the headache. I lean against the wall with tears about to spill over the shelves of my eyes, willing myself not to cry. Pain multiplies when you cry
Time passes—sometimes hours, occasionally days—but eventually the smog of misery begins to dissipate, and I can see again. I lie back down to recover with my dogs who are oblivious to my condition. Tomorrow I will feel sore from the fierce workout.
Released from my painful prison sentence, I notice a snowy layer of dust blanketing my bedside table. Giddy with relief, I ready myself to start over again. At no point do I think to wipe off the table. Time on either side of a migraine is too valuable to spend housekeeping.
***
I worked at my father’s clinic the summer I was 14, filing patient charts in the medical records department, back when there were paper files stuffed with pages and pages of physician notes. One afternoon while eating lunch at my desk, the room started to shimmer. I thought perhaps I was suffering from a lack of air and sunlight, but then the shimmer undulated and so did my stomach. Suddenly, my vision exploded like fireworks and collapsed in on itself, forming a nauseating tube of twisted light. I later learned these visual effects were called “auras.” I no longer wanted lunch. I wanted my daddy.
I stumbled down the long hall toward his office, passing door after door of other doctors’ suites. My peripheral vision was still intact, but the space directly in front of me seemed to swallow itself up, revealing only a vibrating outline. I felt like the Predator in the eponymous movie about an out-of-this-world bounty hunter who enjoys a lively game of death tag. His unfair advantage is an ability to travel from victim to victim, defined only by a slight warping of the space around him.
“Uh-oh,” my dad said when I described my symptoms. I wanted to ask if that was an actual medical term, but a wave of nausea washed away the sarcasm.
“It sounds like you’re having a migraine. Do you feel any pain yet?”
I was pondering his use of the word “yet,” when I became vaguely aware of a throbbing behind my left eyeball. The throbbing quickly grew to a stabbing feeling then finally organized itself into a bashing-head-against-wall feeling.
My father appeared to be taking this a little more seriously than he usually did my ailments. In our family, unless there was a stake in the heart or a blood tsunami, we were instructed to take some aspirin and lie down. When I was sick with a stomach bug as a child, I pleaded with my parents, “Call a doctor!” to which my father replied, “I am a doctor!”
That day in my dad’s office was the beginning of my relationship with pain—one that has lasted more than 40 years.
***
When I get a migraine, time stops, then seems to go in reverse. It stretches beyond imagination. Not only does time slow to a halt—everything else does too. I can’t take care of my dogs no matter how much they try to get me to pet or walk them. I can’t run errands, and I’ve missed many events, including half of my 15th birthday party, due to migraines.
I suffered with these headaches occasionally throughout my teens and twenties, but the misery escalated once I reached my thirties. Fifteen years after my first migraine, my parents were no longer who I went to for help though; instead it was my husband, Bill. And these acute headaches affected him almost as much as they did me.
We had been married about five years when my headache pain and frequency began increasing. Bill found me on the bathroom floor one night and panicked; he wanted to call an ambulance. I reassured him that I was just nauseated from my headache, and the cool floor tiles were soothing. When lying on the bathroom floor became something of a hobby for me, Bill stopped worrying about calling 911. But the emergency room still loomed in my future, waiting.
He once took me to the ER where we waited four hours…only to discover I had an allergy to the medication they were pumping into my veins. I yanked out the IV because I couldn’t breathe. The doctor told me this was a normal side effect. Not breathing isn’t normal, I thought. So I got dressed, and disappointed we left.
Another time at the ER the doctors deemed me to be a “drug seeker”. Not really, I thought. More a relief seeker. But I diligently obtained a written indication from my doctor advising other medical providers that it was appropriate to give me narcotic pain medication in the hospital. Unfortunately, the card rarely worked. Agony and dread that I wouldn’t get relief combined with the ER’s bright clinical lighting in to intensify the headaches, and so I eventually stopped going to the hospital altogether.
One memorable afternoon in the spring of 2007, a friend was driving me home after lunch when suddenly my mouth couldn’t form words. My speech was garbled; I sounded like the caricature of a drunk trying to say something important. And I was trying to say something important: I thought I was having a stroke. Fortunately, we were near my doctor’s office, and so my friend exited the highway and sped to a nondescript building mere seconds away. We dashed inside, and after my friend explained what was happening, the receptionist hurried away to inform my doctor.
Dr. Kennedy rushed out to the waiting room to meet us. He gave me the quick once-over, had me try to speak and then led me toward an examination room. I spoke to him, enunciating slowly and nontheless slurring my words, “I’m thcared.” To which he replied, “This is so interesting.” I wasn’t thrilled to be described as “interesting”, but even more so I was confused by the doctor’s rather causual response to what seemed to me to be a clear emergency.
He brought me into a cold white room where he did a cursory exam and then proclaimed, “I’ve never seen this type of aura before. You’re having a migraine.” I sloppily replied, “Buhut mai headth doesthant hurburt.”
This was a new one for me too. Auras typically present with visual disturbances and are a signal that migraine pain is fast approaching, but this one affected my speech rather than my vision. Apparently the Thai food I’d eaten for lunch was loaded with MSG, a common migraine trigger. Since then I’ve learned that my triggers also include caffeine, alcohol, perfume, and raw onions (oddly, cooked ones are okay).
A Brief History of Migraines
Migraine has a long history. Sufferers of note include Napoleon, Darwin, Einstein, Elvis, and Elizabeth Taylor. Generals Robert E. Lee and Ulysses S. Grant also suffered from these excruciating headaches, which might have been the only thing they had in common. Joan of Arc was said to have experienced both migraines and bipolar disorder, which explains a lot.
Like most things medical in the Middle Ages, the treatment for migraine could be worse than the disorder itself. Everything from bloodletting to witchcraft was employed to cure the agony of these headaches. Remedies included applying hot irons and electric eels to the head, boring holes into the skull and cauterizing the muscle of the temples. Then there was the peculiar practice of fastening a dead mole to one’s head. No lie-look it up.
Even as late as the 1970s, you couldn’t do much better than an ice pack in a dark room. When I was hit with a migraine in the early 1980s, I would take a handful of pills (which I’m certain were essentially placebos) over the span of several hours. While nearly always unsuccessful, at least taking the medicine gave me something to do between surges of pain. About a decade later a drug was invented that would change my life forever…and eventually land me back in the hospital.
Junkie
Sumatriptan was a game changer. This medication could abort a migraine in as little as 30 minutes, which is why migraineurs often refer to it as a “miracle drug.” And for me, it was effective 90 percent of the time. When it first came out under the name Imitrex™, it was administered using a rather large tubular device that resembled a primitive vibrator and automatically jabbed a needle into the thigh. Often the injection gun startled me…which would cause my hand to jerk away from my leg…resulting in $100 worth of medication dribbling out of the needle, wasted.
Scientists, to whom I am forever grateful, later produced it in nasal spray and pill forms. Sumatriptan was truly life-changing. Side effects were minimal, although while researching this essay I learned that an overdose can cause your blood to turn green…which is kind of exotically cool as far as side effects go and probably would make you the queen of St. Patrick’s Day.
The most insidious side effect of sumatriptan is so-called “rebound” headache…better known as “medication overuse headache.” Simply put, if you take pain medication too often, it stops working and – worse – begins to promote headache. Even over-the-counter meds such as Advil and Tylenol—or more questionable ones such as opioids and heroin—have this effect. You must take more and more of the drug to feel results, until eventually you find yourself living in the dark under a blanket.
On a good day I could go grocery shopping or make the bed, but those days were becoming fewer and fewer. My 2 migraines a month became 6, then 10, and kept getting worse until I couldn’t be pain-free for more than a couple of days at a time. And the more medicine I took, the more headaches I got. When I hit 20 migraines a month, my neurologist told me I was suffering from “intractable migraine.” More simply, that means one endless headache, broken up by mere days–sometimes only hours–of relief.
I spent months more or less unconscious, barely functioning. I lost touch with friends and couldn’t take care of simple things like making dinner or driving to the store. I slept for hours during the day. I stopped going to yoga class. The house was depressing, and so was I. This wasn’t just hard on me—it was hard on Bill. Not only did he have to support us both financially since I could hardly work, but he also had to live with me. I set up a home base on the couch and roamed between there and the bedroom for the better part of a year. By then the medication I once worshipped had stopped being effective, and the constant pain led to a deep depression which affected both of us as much as my migraine did.
The most severe headaches made me feel especially lonely. I needed to be by myself, yet I also craved comfort from Bill. During the worst throes, I emerged from the darkened cave that was once our bedroom, tears streaming down my face. I implored him to bring some relief, which of course he couldn’t. The painfully intense light streamed through our kitchen window, forcing me to return to my stuffy cave, shoulders sagging in defeat. Meanwhile, Bill was left to cope with a sense of helpless anxiety.
About nine years in, I felt as if I was checking out of our marriage, and I imagined Bill felt the distance too. We didn’t talk as much because there wasn’t much to say. Talking about migraines is boring and painful, for more reasons than one. How many times can you use the phrase “ice pick in my eye” before it becomes redundant?
Intimacy was no longer hot and steamy. To the contrary—love-making now entailed a continuous train of ice packs, which never did anything but make me shiver and wish I were dead. Sitting alone in the cold darkness for hours took me so far away. When you’re suffering from a severe migraine, you might as well be dead.
I Was a Botox Guinea Pig.
It took a while before I sought and received the help I required. My neurologist had reached the limits of her ability to treat me. It was time for in-patient care, which was how I wound up in a Houston hospital under the supervision of a mad genius Bill and I referred to as “Dr. Evil”.
I was hospitalized for a week, during which time I received a load of drugs along with biofeedback, diet restrictions, and the latest magic cure of the day: Botox (this was before it was approved by the FDA, so the cost of the injections was exorbitant, and there was no guarantee they would work).
Bill sat patiently by my bedside in Houston for 7 days of treatments…7 days which succeeded in ending a years-long struggle with daily migraine. It broke a cycle of drug dependence and released me from the dead weight hopelessness of chronic pain. I cannot explain how life-changing it was, and I’ll be forever thankful to my doctor…even though he was a nasty son-of-a-gun at times.
I wish I could say my migraine journey ended there, but when the barometer drops or my hormones get rowdy, I still suffer from the headaches. Which is why every three months I go to my neurologist’s office for a Botox treatment. The relief provided from the injections is worth every bit of the (very) temporary discomfort. Plus, not long after the procedure, I feel like I’ve been bobbing for apples in a vat of Novocaine, which is pretty nifty. My neurologist says at my age the migraines might get a little worse before they get better, but they will hopefully get better.
Pain and medications for pain have played monumental roles in my life. I’ve suffered with migraine throughout every stage of life since adolescence, so my gratitude for medicine that helps is enormous. And it’s a good thing we’ve come this far-I’ve got no time for so much misery, and I really don’t want to strap a dead mole to my head.
The final chapter of this saga is still being written. New medications have emerged since I wrote this piece, and they are truly game-changers. I have had no headaches for the past 2 months.
Award-winning essayist and migraineur, Ilene Haddad is a graphic designer, cartoonist and writer. Her work has appeared in The New York Times, Austin’s NPR station, Next Avenue, The Erma Bombeck Writers’ Workshop, and other publications. She is an active member of the Writers’ League of Texas and was presented with the Women in Communications’ Creative Initiative Award for founding BlogathonATX, a central Texas blogging conference. Ilene lives in Austin with her extremely patient husband and an eccentric dog named Harry.
