Lorel Brown was a teenager when she started having migraines. For years, she handled them on her own. The problem was, nothing she tried was very successful.
“I always managed them with over-the-counter medications—lots of ibuprofen, Excedrin Migraine, ice packs and a dark room,” she recalls. “Mostly I suffered through. I used to get them about once a month.”
About five years ago, when Brown was in her early 30s, her migraines became more frequent, more severe and longer lasting. This finally drove her to see a doctor. But after visiting a general practitioner who suggested medications that created more side effects than relief, she got a referral to a neurologist who specialized in headaches. Only then, after several months of treatment, did Brown’s chronic migraines begin to recede.
“Most people don’t have to spend three days in a dark room or feel like that’s normal,” she says. “Your quality of life is compromised by even one or two [migraines] a month. You’re functioning at 60 percent and don’t even realize it.”
When you’re overwhelmed by pounding head pain, it can be hard to get motivated to seek care or find a new provider—especially if previous treatment has been unsuccessful. But as Brown’s experience illustrates, your current doctor isn’t all that’s out there.
“People just assume, ‘Well, I entered the health care system,’ and they think [their first experience is] all there is,” says Roger Cady, MD, associate executive chairman of the National Headache Foundation. “They may give up, and of course their migraines rage on until later when they’re experiencing disability.”
When to See a Specialist
“In most cases, primary care does a good job taking care of migraine patients,” says Dawn A. Marcus, MD, co-author of The Woman’s Migraine Toolkit. But in some cases, migraine and headache sufferers need more focused, specialized care.
Richard B. Lipton, MD, an advisory board member of the National Headache Foundation and a professor of neurology and epidemiology at the Albert Einstein College of Medicine in the Bronx, N.Y., has identified three key reasons to call in a consult:
1. The headache diagnosis is in doubt. If a primary care physician is having difficulty determining the type of headache or the reason for the headache, a specialist may be able to help. In some cases, rather than being a primary disorder, a headache could be a symptom of something else. “If it’s a really weird headache that doesn’t fit in any of the primary care physician’s boxes, that’s a reason to see a specialist who may have a few more boxes,” Dr. Lipton says.
2. The diagnosis is clear, but optimal treatment is uncertain. A headache patient might have other health issues that complicate care, such as asthma or ulcer disease. Beta blockers cannot be used with asthma, and NSAIDs cannot be used with ulcers, Dr. Lipton says. That eliminates two of the go-to medications for migraine right away. A headache specialist might have additional ideas for treating a patient with this sort of complex medical history.
3. Initial treatment is unsuccessful, and the patient continues to experience intense symptoms. “Treatment fails for a number of reasons that specialists are trained to look for,” Dr. Lipton says. The patient could have more than one headache disorder with overlapping symptoms; an exacerbating factor, such as obesity, which may predispose him or her to bad headaches that are hard to treat; or a very powerful trigger factor, such as sleep apnea, that hasn’t been identified or addressed. There could also be medication overuse. “The same medications that relieve symptoms when taken occasionally can become a [headache] cause or exacerbating factor if taken too frequently,” Dr. Lipton says.
This is not to say you should abandon your primary care physician if pain relief isn’t instantaneous. But if you’re still having disabling headaches after three or four different treatments, it might be time to consider a referral.
“Sometimes patients are reluctant to ask for a referral because they don’t want to insult their general practitioner,” Dr. Marcus says. “But the doctor may be relieved to get another opinion if the usual stuff is not working.”
Even though a second opinion might be warranted, it’s important not to bounce from doctor to doctor any more than you have to, Dr. Cady notes.
“What people need is someone who can help them manage their headaches over the long term,” he says. “Living with the disease impacts your life for decades, so you want to form a relationship with someone.”
What to Expect from Specialized Care
Depending on the outlook of your general practitioner, you might not have explored treatment options beyond medication. A headache clinic or specialist can suggest alternatives, such as using biofeedback, trying relaxation techniques, working with a psychologist or getting nutritional advice.
“Most headache specialists have a menu of resources beyond what’s available in primary care—or even from general neurologists, who usually stick to a medical model,” Dr. Cady says.
Headache-focused practices will usually have an array of valuable information for headache patients, including medication sheets for common drugs, lists of typical triggers and ideas for behavioral interventions. They also may use therapeutic techniques that are not widely available in a primary care setting, including nerve blocks, occipital nerve stimulators and treatments for people trapped in a cycle of medication overuse.
Another nice surprise for patients new to specialized care is the length of the appointments. Dr. Lipton says he often spends 45 minutes to an hour with a new patient—a luxury rarely afforded primary care physicians. “The biggest resource I have in assessing headache patients is time,” he says.
Tips for a Successful Specialist Experience
For many migraine and headache sufferers, going to a specialist or headache clinic is the first step to finding relief. Your primary care doctor should be able to provide a referral to get you started. But if you choose to do the research on your own, “look for a medical center—they often have a broader view of treatment options or are involved in research,” Dr. Marcus suggests.
The National Headache Foundation offers an online physician referral service that can point you in the right direction (www.headaches.org/physicians). You also might be able to get a personal recommendation—someone who has helped a friend could be able to help you, as well.
No matter how you locate a specialist, creating positive outcomes starts with building a strong doctor-patient relationship. Make sure you’re having a two-way conversation. Your input should be a factor in determining your course of treatment.
“One model I’ve been a strong proponent of is collaborative care,” Dr. Cady says. “The patient and health care professional form a relationship and consider each other experts. Both are working on the best solution to the migraine problem.”
To create an objective record of your symptoms, the specialist will likely ask you to start a headache diary. It’s important to keep track of all of your headache episodes (not just the severe ones) as well as any other pain you have. And be sure to note which treatments you tried and how well they worked. Without a complete picture of your pain, you and your doctor can’t create an effective treatment plan.
Following your appointment, your physician should ask you to return for a follow-up evaluation in a timely manner, Dr. Cady says. They also should provide tools and resources to help you learn more about your condition so you can take an active role in monitoring your progress. After you and the specialist get your condition under control, you’ll likely return to your general practitioner—particularly if you have other ongoing health problems.
“Be up front with both of them about who you’re seeing, what you’re taking and what else you’re trying,” Dr. Marcus says.
Remember—there is no quick fix. The solution to your head pain, and better overall health, is likely to be a long journey with many collaborators.
“Like so many things in life,” Dr. Cady says, “it takes a village.”
A Natural Woman
Laurie W.* began having weekly, and sometimes daily, headaches shortly after she went to college. Two of her older siblings also suffered from migraines, and they each saw a specialist. So the next time Laurie was home from school, her mother took her to a local headache clinic. The doctors assessed Laurie and prescribed medications that worked for others in her family, but they were not as successful for her.
She continued to visit the clinic on her breaks from school, but her migraines grew more intense during her junior year.
“I would wake up with them,” she recalls. “I got depressed, too, because I was in pain constantly.”
That summer, Laurie took an internship in Times Square in New York City—a location she admits may not have been the best place for a migraine sufferer. Sure enough, her migraines worsened until she was not getting any relief from her medications.
“You just feel really fragile,” she says. “You tilt your head the wrong way, and you get [a migraine].”
The headache clinic referred Laurie to a neurologist, who then sent her to a pain therapist. “The thing that really saved me and brought success was the pain therapy,” she says. “No drugs—[the therapist] gave me only advice about how to change my life.”
Laurie learned biofeedback methods and how to control her breathing. The therapist also addressed things Laurie had never considered, such as the way she held her hands and head while sitting at a desk.
When Laurie returned to school in the fall, she decided to “go natural” and manage her migraine solely through lifestyle choices. She read many books on the subject and began a regular exercise regimen. Today Laurie is a college graduate looking for a job, and she’s migraine-free most of the time.
“If I get one once in awhile, I meditate and say to myself, ‘OK, I can do this,’” she says. “There’s always an option, whether it’s medicine or non-medicine. You just have to be willing to find what will work for you.”
* Name changed