Having Trouble Finding a Certified Headache Specialist?

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Do you see a headache specialist for your migraine/chronic migraine? Chances are, you do not. That’s because, “In 2020, there are about 700 certified headache specialists in the U.S. and 39 million sufferers” (Migraine Research Foundation). More than likely, you are treated by your primary physician or, perhaps, a neurologist.

My headache specialist retired in 2016, and I felt helpless in pursuit for another. Because I had had the “best,” my search was more difficult than for many, since one doesn’t easily replace a specialist who stayed on top and even ahead of current treatments, always gave encouragement and empathy, genuinely cared, and was passionate about his field. He never let me walk out the door feeling there wasn’t something more he could try.

Imagine having that support and then needing to find another headache specialist in an area known for medical expertise (The University of Rochester: Strong Memorial Hospital, one of many expert hospitals in an immediate area around Rochester, NY) but home to so few headache specialists, as is every city in the United States.

What Are Headache Specialists?

Headache specialists are typically neurologists who have received specialty training in the diagnosis and management of headache disorders, many of whom who have qualified for board certification in headache medicine from the United Council of Neurological Subspecialties, which provides concrete evidence that an individual has undergone specialty training in headache medicine that qualifies them to be called a “headache specialist,” and, in general, these providers should be highly qualified to manage migraine. Its scope encompasses “the diseases or categories of disease causing central and peripheral disturbance of structures or functions causing head and face pain,” according to its website.

This certification itself was only introduced into the field in 2006; The United Council for Neurologic Subspecialties website (www.ucns.org) contains a list of all of their certified headache specialists. Because of the rapid evolution and changes in the understanding of migraine and the recent availability of a number of new treatments, it is now particularly important that patients have access to the most current thinking and expertise, but where are the headache specialists?

A recent article in BMC Medical Education tells us, “For headache specifically, a recent workforce gap analysis demonstrates that, despite only around 500 certified headache specialists in the USA, 3700 specialists are needed to care for the most affected people [7]. In a 2015 survey of graduating neurology residents, only 6.6 and 5.9% of respondents chose Headache Medicine and Cognitive Disorders as potential fellowships (with only 2.8% of respondents not pursuing any fellowship training)” (Sarva).

Why Are There So Few Headache Specialists?

Several factors influence fellowship choices, including recommendations or modeling by educational leaders, the diversity of neurology subspecialty exposure, and elective opportunities within training, opportunities in research and clinical practice, and considerations related to the work-life balance.

• Demographics, such as gender of neurology leaders, may be an important factor behind subspecialty choice and the decision to pursue either an academic or non-academic career. Given that only 14.4% of chairpersons and 32.1% of PDs are women, there may be a paucity of role models for women interested in pursuing subspecialty careers.
• Neurologists are underrepresented in key medical school leadership positions such as deans. This can potentially limit exposure of students to the significant diversity of neurology through lack of preclinical neurologic physical diagnosis courses, introductory clinical neurology opportunities such as lumbar puncture simulations, or creation of subspecialty electives in clinical years (Sarva).
• There remains the stigma that migraine is a "women's disease."

What’s Being Done to Increase the Numbers Going Into Headache as a Subspecialty?

According to the article, “The Status of Neurology Fellowships in the United States: Clinical Needs, Educational barriers, and Future Outlooks,” “Barriers remain, but these can be addressed through interventions designed to expose and mentor residents and medical students early on to foster interest in underrepresented subspecialties” (Sarva).

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Though substantial efforts exist to provide residents with subspecialty exposure and mentorship, there is much to be done to enhance recruitment into specific fields, such as headache medicine and behavioral neurology, to compensate for the lack of subspecialty care for these chronic patients.

When Should You Try to See a Headache Specialist?

If you are uncertain as to whether you can significantly benefit from working with a headache specialist, ask yourself the following questions:

• Do you experience headache on 15 or more days per month?
• Is your physician up to date on current and upcoming treatments for migraine?
• Does your doctor seem to fully empathize with the debilitating effects of migraine on your quality of life?
• Have you recently experienced a headache that is significantly different than other headaches you have had or that you would describe as the worst headache of your life?
• Have your attacks and migraine cycles changed, evolved? Does your doctor seem comfortable, having worked with these and willing to further investigate additional treatments?

Headache specialists will sometimes refer patients to inpatient clinics that can provide more significant treatment, ones that can be especially helpful in the cases of very severe and treatment-refractory headache. They also combine pharmacological treatments (medications) with scientifically proven non-pharmacologic treatments such as biofeedback, relaxation training, and cognitive behavioral therapy for headache (“The Value of a Headache Specialist”).

What if You Can’t Locate a Headache Specialist?

If migraine is a significant problem for you, and you don’t currently work with a headache specialist, consider asking your treating provider if he/she is comfortable managing migraine, and if he/she is up-to-date with the most current understanding and treatment approaches. If not, it is perfectly acceptable to choose to see a different health care provider.

For example, you may first want to educate yourself about the basics of migraine and some of the new treatments for migraine. You can present your concern as your own need to have a more functional life. Ask your treating provider how much of their practice is dedicated to treating people with migraine and if they are familiar with new treatments that have become available in the last few years.

Take note if he/she asks you to keep a headache diary, since this is often one of the most important tools that a treating provider should use. Often, too, with the increasing demand on physicians to “justify” treatment to insurance companies, they need this documentation (Mauser et al).

Find the best care you can.

Migraine Management Sometimes Requires a Team

Currently, I am so fortunate to work with a great neurologist, one who works with me from multidisciplinary/integrative care for the treatment of my migraine. She is up-to-date on current medications and treatments for chronic migraine, listens to me, and wants the best for me. She is also willing to allow me the latitude to seek second opinions when necessary, and she pays attention to my history and personal experience.

Additionally, she respects my “team” of experts—a physical therapist who specializes in treating migraine patients and my chiropractor who helps with migraine but also works with my TMJ disorder. My neurologist doesn’t challenge what they provide, what contributions they make to my coping with this chronic disease; instead, she supports them.

I am most fortunate, I know. Please, advocate for yourself, and push those interested in medicine to pursue the field of headache specialty.