They Feel Your Pain

Philip O’Carroll was 9 years old and out playing with friends when the vision first appeared--bright filaments floating before his eyes in a shimmering sea of light. “I thought that either I was mad or touched by God,” says O’Carroll, a neurologist in Newport Beach.

A similar blindness struck David Kudrow for the first time when he was a teenager and visiting his grandmother. “She disappeared in front of me. All I could see was her blue hair,” says Kudrow, also a neurologist, who runs the California Medical Clinic for Headache in Santa Monica.

In both cases, these surreal auras collapsed into very real migraines, the grinding, merciless headaches that regularly assault some 30 million Americans and have stalked many millions more around the world and through the ages. Julius Caesar was a member of the migraine club, scholars believe; so were author Virginia Woolfe, former first lady Mary Todd Lincoln and the King, Elvis Presley.

But the most exclusive and useful group of so-called migraineurs is the one that includes O’Carroll and Kudrow--headache doctors themselves. In a new survey, conducted among 576 male and female doctors attending a recent conference, researchers found that the rate of migraines among headache specialists is 60% to 70%, contrasted with about 10% in the general population. It’s not entirely coincidence. As the survey authors conclude, there’s likely a sample bias: “A personal history of migraine stimulating an interest in neurology.”

Perhaps more so than any other medical specialty, the neurologists who treat headaches are their own patients. More important, the way they treat themselves reflects the clearest thinking about a condition that is not only frequently misdiagnosed as sinus headache or some psychological problem, but often lands sufferers on a carousel of diagnostic testing, heavy medications and folk remedies, to little avail.

“We’re pretty secretive about our migraines, but every one of us has our own way of coping,” says Houston neurologist Dr. Randolph Evans, one of the authors of the survey, which also asked about doctors’ self-treatment methods. Those methods have a lot in common, it turns out, and they’re based on what the ailing doctors have concluded about when and why their own headaches flare, how they can be minimized and how to live with the pain as comfortably as possible.

The Migraine Threshold

Many specialists don’t think of migraine as a disease at all, in the usual sense. “There’s no blood test for it, no scan” or biopsy, says Evans. Even the criteria doctors use to diagnose the condition may miss many patients who have unusual varieties of migraine, specialists say. The experience varies wildly from person to person. Some, like O’Carroll, see visual auras before the headache; most do not. Some headaches last for hours, others for days. Some people get the attacks a few times a year, others a few times a week. And, like back pain, the condition flares up for different reasons in different people: heat or cold. Changes in altitude. Loud noises. Bright lights. And certainly menstrual periods are a powerful trigger, which helps explain why three of four migraine sufferers are women.

The bottom line, doctors say: If you get crippling headaches more than a few times a year, often concentrated on one side of the head, chances are you have a migraine.

The underlying cause of that brain-squall is still a matter of speculation. “The chiropractor finds that it’s one disc slipping on another, the allergist thinks it’s an allergy, the orthopedist thinks it’s in your neck, the ophthalmologist thinks it’s your eyes, and the ear-nose-throat doctor is convinced it’s all sinusitis,” O’Carroll says.

But a growing number of neurologists now believe that migraine is an inherited hyper-sensitivity in the brain to certain sights, sounds, smells and other cues. In several recent studies, researchers have used imaging techniques to watch what happens in the visual area of the brain when migraine sufferers stare at mesmerizing patterns, such as a checkerboard. Sure enough, their visual cortexes light up, much more so than those of nonmigraineurs who stare at the patterns. This neural activity appears to signal the blood vessels feeding the brain to dilate, igniting the pain, according to Dr. Sheena Aurora, a migraine sufferer and neurologist at the Swedish Headache Clinic in Seattle.

“What we think is happening is that there is a general threshold problem,” she says, “that anybody is susceptible to a migraine at some point in their lives, but those who get them regularly have a lower threshold, a hyper-excitability of the cortex.”

What pushes them over that brink, neurologists say, is most often a combination of specific migraine triggers--bright lights, loud noises, coursing hormones--and the more familiar stresses of modern life, such as work pressure, lack of sleep and ornery kids. “For example, a woman may be able to skip a meal, and eat a chocolate bar, both of which are triggers for her, and be fine,” says Dr. Lisa Mannix, who treats fellow headache patients in Cincinnati. “But if she does that during her period--wham.”

Maintaining a Routine

Doctors emphasize a practical approach to the headaches, focused more on quality of life than on batteries of medication and diagnostic testing. Because migraine sufferers are extremely sensitive to even small changes in their routine, for instance, afflicted doctors are above all else creatures of habit. If possible, they eat three squares a day, keeping regular mealtimes. “I think food and beverage triggers are exaggerated; they only affect about 30% of migraineurs,” says Dr. Jan Lewis Brandes of the Nashville Neuroscience Group. “It’s more how and when you eat than what, and making sure not to skip meals.”

These are doctors who try to go to bed and wake up at the same hour each day too, because sleep disturbance puts them in a danger zone. “Migraineurs are horrible at adapting to any change in sleep patterns, or circadian rhythms,” says Kudrow. “Jet lag is a big problem. Even napping is potential disaster.” Many migraines strike on Saturday and Sunday mornings, after the chaos of the work or school week has passed, which explains another taboo--no sleeping in on the weekends.

Exercise has become holy ritual for many afflicted headache doctors. “I’m avid about it,” says Dr. Merle Diamond, associate director of the Diamond Headache Clinic in Chicago. “I’d say it has reduced my frequency of headache by 20% to 30%. Even if I don’t get to pay attention to my sleep and eat as regular as I like, I make sure to exercise. Many people who come to see us say they get lots of exercise on the job, but it’s not the same. You need time out, away from your job, doing some aerobic activity.”

Almost anything that tweaks the body’s equilibrium is a source of concern. As a rule, doctors who suffer from migraines don’t smoke, they don’t gulp coffee or other caffeinated beverages through the day and those who drink alcohol at all do so moderately. “I guess you could say we are not really party animals,” says Dr. Maria-Carmen Wilson, who treats headache patients at the University of South Florida’s neurology clinic in Tampa.

Drugs Taken Cautiously

They’re not exactly drug-taking animals, either. In Evans’ survey, about half of the headache specialists with migraine reported regularly using triptans, a class of drugs introduced in the 1990s that can stop the monster in its tracks by helping the brain reverse the dilation of blood vessels. O’Carroll says that many who have milder migraines carry these “pharmaceutical smart bombs” in their pocket just in case a big one hits, and the drugs have given many people a new life--not least because they remove the fear of facing a crippling attack unarmed.

The drugs are expensive, however, averaging $15 to $20 a dose, and some doctors say frequent usage can cause certain migraineurs to crash, causing a “rebound” headache. “Every medication that we’ve used to abort migraine causes some kind of rebound effect and changes the evolution of the condition,” Kudrow says, “and if you ignore it, you’re going to pay.”

Doctors use aspirin and other anti-inflammatory drugs sparingly, for the same reason. “Some people are taking Advil and Tylenol through the day to remain functional, but when that set of drugs wears off, the migraine just blows up,” says Brandes. “One of the first things we do with people like this is to clean up the use of analgesics.”

Evans’ survey found that more than 75% of doctors also steer clear of the many preventive medications often prescribed for migraine, which include antidepressants, anti-seizure drugs and beta-blockers, which are usually prescribed for high blood pressure. “Here are people who have free, easy access to drugs and treatments, and most aren’t using them,” Evans says. This may only be a matter of “the shoemaker’s children going barefoot,” says Dr. Stephen Silberstein, a neurologist at Thomas Jefferson University in Philadelphia, a co-author of the survey.

But the drugs prescribed to prevent headaches are strong medicine, usually taken daily, and headache doctors are all too familiar with their side effects. “These can be horrible medications,” Kudrow says. “Even the best ones, beta-blockers, are riddled with side effects, such as weight gain, hair loss, blood pressure problems. It would take an awful lot to accept those side-effect risks,” and most doctors choose not to do so.

Open to Experimentation

Like back problems, arthritis and other recurring pain, migraines have attracted the attention of a constellation of health hobbyists and professionals, from masseurs to chiropractors to herbalists. For years, migraine sufferers have experimented with supplements of calcium, magnesium and, more recently, feverfew, a plant extract thought to prevent migraines in some people. And whatever they think of the scientific basis of those remedies, neurologists who suffer migraines tend to be open-minded about anything that seems to help themselves or their patients.

“You have to find your own answer,” says Diamond, “and if that means biofeedback, physical therapy, yoga, massage, so be it. Certainly not everything is going to work for everybody. But people do find combinations of these things--often with drugs like triptans--and learn to live in harmony with migraine.”

“Harmony” may not be precisely the word many sufferers would use in connection with their headaches. As the writer and migraineur Joan Didion deadpanned, “That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing.”

But it’s a blessing nonetheless, and with time and careful attention, it can become less ambiguous, doctors say. “At some point you come to see that migraine headaches are part of who you are,” O’Carroll says. “The disorder is a reflection of you and your relationship to your environment, and you cope with it by doing anything that reduces the stresses on that relationship.”

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Migraines

The earliest healers are said to have treated migraines by opening patients’ skulls to let out the dark spirits. Although the one in 10 Americans who now suffer migraines still feel as if their skull is being shattered, doctors have learned a little more about the headaches themselves, and how to better treat them.

What Causes the Pain

Most neurologists believe migraine agony begins when blood vessels in the brain tighten and then bulge, for no apparent physical purpose. When the vessels swell, pain receptors in the vessels and surrounding tissue are set ablaze. Sensing trouble, the body then floods the area with inflammatory agents, which only feed the fire.

The Phases of a Migraine

* Prodrome: Also known as the warning phase; may occur hours, even days, before, leaving people moody, irritable, mentally foggy or even euphoric; experienced by 80% of sufferers.

* Aura: Consists of several minutes or more of otherworldly hallucinations, often with sparkling, shimmering light; experienced by 15% of sufferers.

* Migraine: Exploding agony, usually concentrated on one side of the head; often brings on vomiting, sometimes dizziness.

* Resolution: Brings release from the headache, hours or even days later; may leave sufferers with feelings of soreness, exhaustion or numbness.

Attacks by Age

Migraines affect about 30 million Americans, three out of four of whom are women. The first headaches generally strike in the teens and 20s, peak in the 30s and 40s, and become less common after age 50, as the head becomes less able to feel the pain.

Treatments

Drugs taken after a migraine has started:

Triptans: Reverse the dilation of blood vessels; taken as pills, by injection or in a nasal spray.

Corticosteroids: Reduce inflammation; usually used for marathon migraines.

Ergot drugs: Constrict blood vessels; derived from a plant fungus.

Narcotics: Heavy pain-killers such as Demerol; used on severe migraines that don’t respond to other drugs.

Drug combinations: Include mixtures of caffeine, aspirin and barbiturates.

Preventive drugs:

Beta-blockers: Best known as drugs for high blood pressure; help relax blood vessels.

Antidepressants: Soothe the pain, probably by altering level of the brain chemical serotonin, which affects mood and sleep, as well as pain sensation.

Anti-seizure medications: Calm overexcited brain cells.

MAO inhibitors: Sometimes used to ward off serious, frequent attacks; normally used to treat depression.