People suffering from excruciating migraine headaches often get misdiagnosed or told that they just have to deal with it. In their new book, “The Migraine Brain,” Dr. Carolyn Bernstein and Elaine McArdle explore what causes the pain and why so little is known about the disorder. An excerpt.
“I’d rather die than get another migraine!”Melissa is a waitress in her mid-thirties who has suffered from excruciating migraines since she was a little girl. A few months before she became my patient, she gave birth to her first child. I asked how her labor had gone.
“I hate to say this,” she confided, “but it was a piece of cake compared to what I’m used to.” When she went into labor, Melissa told me, the obstetrician instructed her to let him know when the pain got really intense so he could give her an epidural. Before she knew it, her daughter was born — without any anesthetic.
“When people say childbirth is one of worst pains there is, I’m sorry, it’s not!” Melissa said, shaking her head. “For someone used to having migraine pain, childbirth doesn’t even come close.”
Terry is a businessman in his mid-sixties who has suffered from migraines for thirty years. Several times a month, he gets a horrible pounding in his head, vomits repeatedly, and can barely move. Last year, he was diagnosed with prostate cancer and began extensive chemotherapy. “You know something?” he said to me. “I’ve never missed a day of work from the chemo. But migraines? I get so sick I can’t walk. I can’t tell you how much work I’ve missed from migraines.”
Gwen is a high school teacher in her forties who has suffered from devastating migraines since she was a teenager. During an attack, she experiences intense throbbing and pounding down the side of her face, so painful she can do nothing but lie completely still in a dark room. Gwen also has heart problems, which means she is not supposed to take the effective new migraine drugs called triptans.
Not long ago, in a migraine support group I hosted in Cambridge, Massachusetts, Gwen stood up and made a dramatic announcement: She was going to risk taking triptans. “I know they’re bad for my heart, but I can’t stand this anymore,” she said. “I’d rather die than get another migraine!”
The good news is, she doesn’t have to make that choice.
If you’ve ever felt like these patients did, you’re far from alone. Thirty million people in the United States get migraines. If you don’t get them, you certainly know someone who does: One in ten people in this country is a migraineur (a person who gets migraines), and one in four American households include a migraineur.
Migraine is the ninth-leading cause of disability among women, and the nineteenth most-common disability in the world, more common than diabetes or asthma. It’s also one of the most painful and debilitating. The throbbing head pain and nausea can knock you out of commission, sometimes for days. More than 76 percent of migraineurs have had to postpone planned activities with children and other loved ones because of migraine sickness, and 50 percent say they can’t do anything at all but lie in their beds during an attack. Migraine runs up more than $1 billion a year in health costs and at least $13 billion in losses to industry due to absenteeism and reduced effectiveness at work.
Despite the fact that it’s so common and has so much impact on our society, migraine is one of the most misunderstood, misdiagnosed, and undertreated diseases on earth.
Most people with migraine illness don’t realize they have it. Only half of people with migraine have sought a doctor’s help, and half of these get the wrong diagnosis once they see a doctor. Many new, exciting treatments can bring tremendous relief. But because so many myths about migraine persist — even among doctors — more than 22 million Americans are suffering needlessly.
The "Migraine Brain" will change that.
I got my first migraine when I was a medical student in my early 20s. At first, I thought I was just having bad headaches, but it didn’t occur to me to mention these headaches to my own doctor. Headaches, even painful ones, didn’t seem like an important medical concern. And the pain would always resolve, although sometimes I had to sleep it off. I was lucky because mine were not very frequent. But as I began to study neurology, my specialty field, I realized that I was actually having migraines. Sadly, there was very little useful information about migraines. Most of what I found — even in medical texts — was condescending or dismissive. Some writers suggested that the migraine was my own fault; many scoffed at the severity of the pain that migraineurs feel. I was shocked at the absence of solid medical data and horrified by the lack of sympathy.
I learned what many migraineurs already knew: People who don’t get migraines — including many doctors — have a hard time believing how debilitating they are. Since migraine isn’t fatal, and we don’t seem to suffer any lingering health problems after a migraine attack ends, how can we be as sick as we claim? How can the pain really be that bad, they ask. They don’t understand why we live in fear of the next attack and may think we’re hypochondriacs, or drug seekers making up our symptoms in order to get painkillers. Some of this dismissive attitude may be based on certain prejudices or preconceptions, since migraine affects more women than men. Even today, attention and research dollars for many health issues that predominantly affect women have lagged behind those for men’s illnesses. But men with migraines run into prejudice, too.
Countless patients tell me that their friends or employers — and, sadly, even doctors — have ordered them to “just deal with it!” Afraid of being tagged as whiners or malingerers, many migraineurs try to ignore their illness and steel themselves to soldier on through the pain, continuing on at work and other activities no matter how awful they feel. Once the attack ends, many suffer from a kind of “migraine anticipatory anxiety,” where they worry when the next attack will suddenly appear to derail their plans for a productive, happy day.
At the time of my first migraine, I’d already decided to specialize in neurology. But it was my own experience with migraine, and the realization that we in the medical world still had so much to learn, that led me to investigate this fascinating disorder.
Over the past seventeen years as a Harvard Medical School faculty member and practicing neurologist, I’ve treated thousands of women and men who suffer from migraines. I’ve listened to myriad individual stories about migraine and how it affects my patients’ lives. I’ve seen enormous variety in their symptoms, the factors that trigger their attacks, and the treatments that help them feel better. And it’s been deeply gratifying to see how many of my patients are able to make huge improvements in their health and really turn around their lives.
In March 2006, I founded and became director of the Women’s Headache Center at the Cambridge Health Alliance in Cambridge, Massachusetts, a teaching hospital for Harvard Medical School. The center is one of the first clinics of its kind in the world, designed by female patients who suffer from migraines and other headaches to meet their special needs and requests. We offer medical treatment through two staff neurologists and a psychiatrist, as well as a full complement of other services including migraine support groups, a biofeedback specialist, a nutritionist, and a broad menu of assistance designed to help our patients reach optimal health.
Within just a few days of opening, the Headache Center was swamped with new patients, and emails and phone calls came from migraineurs all over the country. One woman flew from Philadelphia to meet with me, another called from Florida. I’ve had phone calls from overseas as well. Clearly, millions of people desperately want relief from migraine but can’t find the help they need.
For centuries, migraine has been a poorly understood disease, of interest only to a narrow segment of the medical community. But in the past ten years, a revolution has taken place. Migraine is now one of the hottest medical issues, and it is of growing interest to researchers, doctors, and laypeople. Today, numerous studies in hospital and research facilities around the world are investigating a wide range of topics related to migraine. Neurology and other medical journals are publishing news about migraine in every issue, almost every week. After decades of no progress, the explosion of information about migraine is unprecedented, exciting, and hopeful, with new treatments on the horizon for migraineurs.
In this book, I and my co-author, Elaine McArdle — also a longtime migraineur — have gathered the information and tools you need from the most up-to-date, credible sources. We include all the latest and best data about migraine — cutting-edge information you won’t find in any other book. We draw on groundbreaking research that demonstrates, for the first time in history, that the Migraine Brain really is different — and we explain what that means for you. We discuss the biochemical basis for migraine, the influence of hormones, and the newest drugs and other treatments, and why they work. We address every aspect of migraine about which you need to know in order to lead a healthier, happier life.
In the last fifteen years, new medications developed just for migraine have revolutionized treatment, bringing unprecedented relief to most people who try them. Yet only a small percentage of migraineurs are using these medications. While some people may not want to use drugs — a personal choice we understand and support — this statistic suggests a more challenging problem: most migraineurs simply aren’t getting the most up-to-date information about their disease. Most migraineurs have never been offered the option of trying these drugs, which have the potential to change their lives. Meanwhile, a whole host of complementary and alternative medical treatments — including biofeedback, ice massage, yoga, and acupuncture — have been shown to help, but most migraineurs know nothing about these options, either.
For years, my patients have been asking me to write a book that shares the latest research about migraine and explains the newest and best treatments — and that also lets patients share their stories of migraine success.
That’s what’s here in “The Migraine Brain.”
Excerpted from “The Migraine Brain.” Copyright (c) 2008 by Carolyn Bernstein and Elaine McArdle. Reprinted with permission from Simon and Schuster.