After three days of a headache that would not go away, Patty braved the grocery store on a frigid December morning. She’d only just begun inspecting the mounds of apples when the sounds and the bright fluorescent lights began making her feel dazed and sick. She abandoned her near-empty cart, rushed back to her car, and threw up.
For most of her life, Patty only got headaches occasionally. For the past few months, since mid-September, she’s averaged twenty-two headache days a month—six of them miserable days, and three of them “I’d rather die days,” as she puts it.
A week later, on a cold January day, Patty sits in front of Dr. Robert Kaniecki, the founder and lead neurologist at the University of Pittsburgh’s Headache Center. Kaniecki (pronounced like the Grease character) is a tall, thin 52-year-old man with still-blond hair. After a standard neurological exam, he returns to his desk in front of a wall that displays twenty framed degrees, certifications, and awards—many of them slightly askew—as well as pictures of his wife, five kids, and golden retriever. He tells Patty that her relentless headaches, as well as her history of insomnia, drug sensitivity, and anxiety, all stem from her “migraine brain.”
“The migraine brain is more sensitive by nature,” Kaniecki explains. “You’ve had this migraine brain all your life, this sensitive nervous system, even without the head pain connected to it,” he says. He diagnoses her with chronic migraines without aura. Chronic, meaning that she has them at least fifteen days a month, and without aura meaning that she receives no warning, visual or otherwise, of their approach.
Headaches are the result of dips in serotonin, Kaniecki explains. He places a graph in front of Patty. “Days of Month” is printed below the horizontal axis and “Serotonin Level” by the vertical axis. Most people—he says as he draws a straight horizontal line across the map—stay around the 100 percent serotonin level and only dip—his black pen plummets—when sick with something like the flu. Then, it’s normal to get a headache.
But migraine sufferers sit below that and dip with varying degrees of frequency. Switching to a blue pen, he draws a line that looks like the downward spikes of an EKG machine. The lower the dip, the worse the pain. The brain, he says, is a balanced ecosystem that can usually adapt to changes quickly. In migraine sufferers, the problem seems to be a fragile ecosystem—a chemical imbalance meaning it doesn’t adapt quickly.
Patty is one of the (at least) 13 percent of Americans—37 million people—who suffer from migraines. The number may be even higher including all the people who have been misdiagnosed with other types of headaches, such as tension-type or sinus head pain. On days of severe pain, migraine patients struggle to go about their lives. Many miss work. Women are three times more likely to experience migraines; as such, migraines have historically been classified as a women’s problem, and one that is psychosomatic—all in their heads.
Today it’s well established that migraines are a complex neurological condition that involves many parts of the body: the central and peripheral nervous systems, inflammatory mediators (such as histamine and bradykinin, which cause inflammation), neurotransmitters (such as serotonin and dopamine, which allow neurons to communicate), nerves, the brainstem, and others. Migraines are known to be an inflammatory disorder; the pain comes from inflammation in the dura (the innermost layer of the brain’s three-layered membrane). But experts still don’t know what causes the inflammation in the first place. Migraines are complicated, but they are also understudied, which contributes to our lack of understanding.
For his patients, Kaniecki simplifies all that we know about migraines as a serotonin issue. Serotonin is known to play a significant role in migraines, and it fits with his plan of action: settling the “oversensitive” nervous system, as Kaniecki calls it, through medicinal and natural methods.
But Joanna Kempner, a sociologist and author of Not Tonight: Migraine and the Politics of Gender and Health, takes issue with the word “oversensitive.” The language we use to talk about migraines, according to Kempner, is steeped in a history of fragile femininity. The sensitive nervous system, for example, brings to mind “neuroticism and passivity,” she says. On the other hand, cluster headaches, which are more common in men, are described with stereotypically masculine terms, like forceful.
Kaniecki’s explanation helps Patty make sense of her headaches: She does have insomnia; she is anxious. So when Kaniecki tells her that it all stems from a sensitivity that recently began manifesting as headaches, it makes sense. It’s a part of something she already knows about herself, not something entirely new. But the trouble with using gendered language like “oversensitive” is that language is about more than word choice; the way we speak influences our thoughts and behavior. So the question is: Does the stigma of migraines as a women’s disease, and the stereotypically feminine language still used to talk about them, affect patient treatment? Does it affect how much time and money are spent on studying migraines?
The history of how headaches have been treated in the medical community can illuminate how migraines came to be discussed in gendered language. Thomas Jefferson, Ulysses S. Grant, and Julius Caesar all endured debilitating headaches. The night before Robert E. Lee surrendered, Grant had a “sick headache.”
Until the advent of aspirin in the late nineteenth century, all types of head pain were difficult to get rid of—headache interventions such as a mole “long dead and putrid” bound to the head, or even the still sometimes recommended today, caffeine, didn’t reliably work. But aspirin made most headaches easily curable. Some headaches, what we now call migraines, proved more resistant. Because researchers did not yet understand the difference between headaches and migraines, the fault was placed on the sufferer rather than the malady. If a headache was not cured by the new magic drug, it was perhaps because the person was too weak to handle life to begin with and that head pain was a way for their bodies to retreat from the world. Jan R. McTavish explains, in Pain and Profits: The History of the Headache and its Remedies in America, headaches unresponsive to treatment were often blamed on “ the patient’s inability to cope and poor adjustment to life.” And since women are three times more likely than men to get migraines, those with an “inability to cope” with life were most often women.
By the 1930s, the American neurologist Harold Wolff, considered the father of modern headache research (and a migraine sufferer himself), came up with a migraine personality profile. Wolff believed that the body responded to psychological factors—a certain type of person had emotional characteristics that put stress on the body in ways that caused head pain. His profile for men was somewhat flattering: hardworking perfectionists who achieved a lot, but wore themselves out and, as a result, were prone to migraines. His personality profile for women with migraines, though, was characterized by sexual frustration and a refusal to accept a maternal role. His disciples expanded on this, depicting women with migraines as sensitive, fragile, neurotic, hysterical, and generally incapable of dealing with life’s stressors. Since it was all in their heads, the cure was rest or talk therapy. High-achieving men with migraines needed rest, too. A break in the afternoon and exercise would do.
Then researchers started locating migraines in the body. In the late 1950s, Italian physician Federigo Sicuteri discovered that the neurotransmitter serotonin was involved in migraines, shifting theories away from a psychological cause toward a neurological one. But drug development is a slow process, and it wasn’t until 1992 that a serotonin agonist called sumatriptan (Imitrex) was released, which brought the first reliable relief to migraine patients.
The medical community now accepts migraines as neurobiological, but the language used to talk about migraines has hardly changed. The characteristics that neurologist Carolyn Bernstein ascribes to “the migraine brain” in her 2008 book of the same name—“as high-maintenance as they come . . . hypersensitive, demanding, and overly excitable”—sound an awful lot like the characteristics of the migraine personality from the first half of the twentieth century—sensitive, nervous, easily overwhelmed.
Kempner argues that words like “hypersensitive” create “gendered notions of how men and women experience pain by ascribing moral characteristics to biological processes.” Instead, Kempner prefers the word “vigilant.” Hypersensitivity connotes needing protection, while hypervigilance connotes active protecting. Migraines, some people believe , serve an evolutionary purpose—extreme awareness of sounds or smells as an early warning that could be useful. Kempner herself is particularly triggered by perfume—the more chemical and artificial, the faster she can feel it affect her brain. “So I can think about it as protecting me from chemical exposure,” she says.
Similarly, Kempner, and others balk at using the term “migraineur,” common in migraine literature, because adding the “er” or “eur” conflates a malady with identity. (Likewise, disability discourse has also argued for “person-first” language, like “people with disabilities” rather than “disabled people” because it makes the disability part of a person and not their entire identity.) Kempner notes that not all sufferers she speaks with think talking about language is useful. But language has a profound impact on the way we think. And our perceptions, in turn, can influence our behavior.
A 2011 study at Stanford University found that the language used to describe a problem influences the solutions we propose. The authors gave study participants a crime report in which a city’s crime problem was described as either a beast or a virus. When crime was described as a virus, they suggested social reform—reducing poverty and improving education—but when it was called a beast, participants advocated for deterrents like harsher punishments for criminals. In both instances, the participants cited crime statistics to support their chosen intervention, but the statistics were the same for both groups. Meaning, the difference in proposed solutions was the result of language—“beast” vs. “virus.”
The impact of language doesn’t just show up in laboratories, but in the real world, where the stakes are even higher. A 2012 study published in Sex Roles looked at the difference between gendered languages (such as French and Spanish, that assign gender to nouns), natural gender languages (such as English, which assigns gender through pronouns, like he and she, but most nouns don’t have gender), and genderless languages (such as Finnish where pronouns have no gender). They found that although we might assume genderless languages to be the most equal, they often perpetuate a male bias because when gender isn’t specified, the default assumption is male. People are more likely to visualize a man when they hear the term “member of congress,” for example, as opposed to “congresswoman.”And unlike natural gender languages, genderless languages do not inherently have the ability to compensate and better include the female presence.
When it comes to migraines, gendered language that associates head pain with feminine fragility can make migraine pain seem less legitimate, according to Kempner, which leads to less money invested in research and less training for medical professionals. Most medical schools don’t require students to learn much about headaches, says Kaniecki. Even the University of Pittsburgh School of Medicine, home to Kaniecki’s Headache Center, only has two formal lectures devoted to headaches. The lack of training and awareness may lead to doctors who don’t take patients seriously. Several practitioners I spoke with believe that migraine patients are more “needy” and difficult to deal with than other patients, which in turn impacts the way they’re treated by doctors.
A study from 1999 found that men and women receive different treatment for migraines. Women were prescribed more medication, including antidepressants (some of which are still seen as an acceptable form of migraine treatment), while men were subjected to more diagnostic testing, leading to delayed diagnosis and treatment. The World Health Organization published a report on gender inequity in 2007 that stated, “Gender not only affects differentials in health needs, health seeking behavior, treatment, and outcomes, but also permeates both the content and the process of health research.” Gender inequality also extends to insurance. Before the Affordable Care Act, insurance companies could use gender ratings to charge women significantly more than men (53percent in one case and 31percent in another) for the exact same coverage.
But when Kaniecki uses gendered language and calls the migraine brain “sensitive,” he doesn’t intend to make patients feel victimized or fragile. He says that his language is all about helping patients make sense of their complex condition. In his experience, sensitivity is a word that resonates with patients, more so than hyperexcitable or hypervigilant. It’s also a word he can use when talking about patients’ comorbid mood and anxiety disorders, as well as common triggers for patients—light, noise, food, odor. And it’s a word that helped me understand my own struggle with migraines.
I’ve gotten incapacitating headaches since I was a kid. I remember sitting in my seventh grade science class, unable to pay attention. For years doctors told me that there was nothing they could do to help me. Tension headaches, they said. Take ibuprofen.
But ibuprofen had no effect on migraines that would plague me for weeks at a time. I was either in bed feeling guilty about it or out in the world barely able to function.
By the time I found Kaniecki, who gave me my first official diagnosis—migraine without aura—I'd seen three neurologists, a pain management specialist, an acupuncturist, told every primary care physician I'd ever had about my headaches, and self-medicated with marijuana as an undergrad. When I just started calling my headaches “migraines,” a doctor finally prescribed sumatriptan, which could miraculously abort a headache that otherwise would have ruined the rest of the day.
Misdiagnosis isn’t uncommon. One study found that while 98 percent of migraine diagnoses were “confirmed upon expert review,” 79 percent of non-migraine diagnoses were actually migraine “upon expert review.”
Kaniecki made me feel like I exercised some degree of control. Because hypersensitive nervous systems don't do well with sharp fluctuations, he said I could help myself with as much regulation as possible—sleep the same number of hours each night, eat four to six times a day, exercise daily, drink plenty of water, limit caffeine intake to one cup of coffee a day. He also suggested magnesium, which works as a natural serotonin replacement. And he recommended other things to calm the nervous system—meditation, biofeedback (a technique that uses sensors that measure things like muscle tension, temperature, and brain wave activity in order to train your body to control its nervous system). It's all about homeostasis and sensitivity. Some people can miss sleep and be all right the next day, but migraine sufferers can’t.
Kaniecki also put me on beta-blockers (like most migraine medication, this one was made to treat something else—high blood pressure—which it does by blocking adrenaline receptor sites and lessening stress responses). Except for occasional lightheadedness when exercising, I experienced no side effects and it seemed to maybe reduce my migraines. Kaniecki said I could help my sensitive nervous system with regulation and medication, but I couldn’t change the fact that I had this sensitive nervous system.
For me, this framing—thinking about my nervous system as “sensitive”—removed some of the guilt I associated with migraines because I was born this way. Yet, Kaniecki’s terminology, shared by most of the field, does make me feel like something’s wrong with me, that I’m more fragile than other people. When I get a migraine I ask myself—what have I failed to do? What have I done too much of? How have I angered my sensitive nervous system?
Maybe thinking about my nervous system as “hypervigilant,” as Kemper suggests, would help. It brings to mind a superhero with better perceptive powers than the average person. Migraines—proof of my superpower! My nervous system, then, becomes something to train and hone, not something that needs protection from the world because it is too easily overwhelmed.
Kaniecki is an excellent neurologist who has helped countless patients, many of whom had gone to a series of other doctors without relief. He uses the established language available to him, which is biologically accurate language. This is, however, precisely what makes it so problematic—even though “hypersensitive” is an accurate way to explain the physiology of a migraine patient’s nervous system, it carries the connotations of what it means to be emotionally sensitive. As second-wave feminists demonstrated, language is always important. Perhaps an examination of language is overdue in medicine.