The stigma of chronic migraine

At least once a week throughout my childhood, a migraine would force my mother to retreat into her bedroom. She’d shut the blinds and burrow under the covers, overwhelmed by a pain so severe it turned the faintest sound into an agonizing roar and launched waves of nausea with the slightest movement.

Though my family and I tried to be sympathetic, it was hard for us to fully comprehend my mother’s migraines or understand why she had to miss so many events because of them. When you’re on the outside looking in, you can’t begin to appreciate how severely disabling—and life disrupting—chronic migraine can be.

The “unseen” pain

Migraines are often misunderstood, or dismissed as “just a headache.” Yet they have the capacity to disrupt a person’s life, relationships, and sense of well-being. A study from Thomas Jefferson University in Philadelphia, released last week in PLoS One, found that chronic migraine sufferers experience as much social stigma as people with epilepsy—a disease that produces far more obvious and dramatic symptoms.

Some of that stigma is external—for example, getting treated differently by friends or colleagues. “Migraines are the unseen and undocumented pain that takes them away from work,” says Dr. R. Joshua Wootton, of pain psychology at the Arnold Pain Management Center at Beth Israel Deaconess Medical Center, and assistant professor of anesthesia at Harvard Medical School. “There’s no empirical test for migraine yet. That’s why people who report these problems with chronic pain are often not believed or are thought to be exaggerating in the work environment.”

Yet much of the stigma, the study found, is internal. Migraine sufferers often anticipate that their headaches will elicit a negative reaction from friends and colleagues, or that they’ll be less productive because they have to miss work so often. Such subjective experiences of stigma can be as damaging to health as overt discrimination or the loss of social relationships.

Treating migraines

Effective migraine treatments are available—but many migraine sufferers don’t take advantage of them, either because they don’t seek help or they mistakenly believe they’re just suffering from regular headaches. “I think 80% of all migraineurs can be effectively helped, but only about a quarter of them are effectively helped at the present time,” says Dr. Egilius Spierings, associate clinical professor of neurology at Harvard Medical School.

The gold standard for migraine relief is a class of drugs called triptans, which include sumatriptan (generic, Imitrex, others), rizatriptan (generic, Maxalt), and zolmitriptan (generic, Zomig). When taken at the first twinge of a migraine, triptans can relieve pain, nausea, and light sensitivity. “These medications have been on the market for about 20 years now,” Dr. Spierings says. “They have been used widely, and are generally very safe and well tolerated, and also very effective.”

As my colleague, Heidi Godman, has written in this blog, there are also drugs that work in advance to prevent migraines—including beta-blockers, antidepressants, anti-seizure drugs, and Botox. Although preventive medicines don’t work quite as well as the triptans, says Dr. Spierings, they can reduce migraine frequency in some people who get them regularly.

Part of migraine prevention involves avoiding the sights, smells, situations, and foods that trigger these headaches. Keeping a headache diary can help identify triggers, which may include loud noises, bright lights, strong scents, hunger, fatigue, and foods such as chocolate, aged cheeses, alcohol, or MSG.

The emotional component

Migraines aren’t just a physical condition. Living with chronic pain, or the constant worry that a migraine can strike at any moment, can take an emotional toll, too. Migraines have been linked to an increased risk of depression. A study presented last February at the American Academy of Neurology’s annual meeting found that women with a history of migraines are 41% more likely to be depressed than those without the condition.

When you can’t find effective ways to manage your migraines, “that frequently results in feeling helpless, hopeless, and as if everyone is against you,” Dr. Wootton says.

If you’re having these feelings, it can be helpful to see a psychiatrist or psychologist—particularly at a center that specializes in pain management. “If you have considerable anxiety and/or depression, addressing those issues is important because they negatively affect migraine. They also make it much more difficult to cope with a condition like migraine,” Dr. Spierings says.

Mental health professionals can offer behavioral techniques (such as meditation) to address chronic pain—and the stress associated with it. They can also help counter any negative perceptions about migraine.

Migraine can be a frustrating condition to treat because there is no quick “cure.” My mother has tried just about everything, and some therapies have been more effective than others. Probably the safest, surest way to migraine relief is to work with your primary care physician, neurologist, or headache specialist. With some trial and error, you may find a treatment that finally relieves your pain.