Cluster headache is a unique type of headache; it is said to be one of the most painful of all headaches. While migraine typically affects more women than men, cluster headache predominates in men. Cluster headache gets its name from the pattern of attacks: an individual will typically endure one or more painful episodes, lasting 15 to 60 minutes, each day for a few weeks, and then will have no headaches for months, sometimes years, before they return.

Michael Stein, M.D., co-founder and medical advisor of the East Bay Headache Support Group, is our speaker for the evening of October 12th. He will be presenting valuable information, including treatment options, for sufferers of cluster headaches and others interested in this painful disorder. Questions will be welcomed from the audience following Dr. Stein’s presentation.

If you know someone who suffers from cluster headache, even if their headaches are not bothersome right now, encourage him or her to attend this meeting of the East Bay Headache Support Group.

In last month’s newsletter it was announced that the East Bay Headache Support Group will do an informal study on headaches apparently triggered by high altitudes and/or changes in the weather. We received some responses, and would like to hear from more of our readers. To participate, please answer the following questions and mail to the address found on the front of this newsletter, or e-mail to ladavis98@aol.com. Results will be presented in a future newsletter (respondents will not be identified by name unless requested).

I was 22 when I got my first migraine. I was at National Airport in Washington, D.C., waiting for a flight to Florida to visit my parents. The flight was delayed for hours (maybe that brought it on!), and I felt like someone had hit me in the head with a 2 x 4. I spent those waiting hours looking for a quiet place to sit, and getting sick in the ladies room.

Over the next years, most of my headaches came in the early hours of the morning. I’d go to sleep feeling fine, and would wake up at 2 a.m. with a huge headache. I would take a couple of aspirin and most of the time the headache would be gone in time for work. The days the headache lingered, it progressed into a migraine, and I’d spend the afternoon and evening in bed. I tried different prescriptions and eliminated all the known food triggers from my diet, but that didn’t help.

The headaches changed over the last few years. They occurred four to five times a week during the day, and to avoid a migraine, I would take an aspirin at the slightest onset. Finally, this past May I consulted a neurologist whose name I found in a publication from the National Headache Foundation. He concluded I was suffering from rebound headaches.

Historically, "migraine treatment has generally been based on what professionals believe to be important. Little attention has been paid to what is most important to migraineurs," said Constance Cottrell, Ph.D., of the Headache Treatment and Research Project, Westerville, Ohio. At the 41st Annual Scientific Meeting of the American Association for the Study of Headache, Dr. Cottrell discussed the issues identified by the focus group.

Some of the strongest concerns of the participants centered on the attitudes of primary care physicians and the limitations of treatment. In some cases, patients were advised to try to live with the pain or subtly "abandoned" when drug therapy was ineffective. The participants also singled out the need to identify individual triggers of headache, and expressed as much interest in nondrug treatments and alternative therapies as in traditional approaches. Costs of medication, inadequate insurance coverage, and accessibility of physicians were highlighted as well.

Lack of sensitivity on the part of the public was identified as a problem because of the stigma attached to being in pain frequently. Participants cited an inability to participate fully in family, work, and social activities due to frequent headaches.

Based on the comments of the focus group, Dr. Cottrell and colleagues suggested that migraine sufferers are as interested in learning about their disorder as they are in getting relief from pain. Innovative migraine management/education programs are needed, they concluded, to better address the issues most pertinent to patients.

Imagine a time when patients who visit their doctor for regular checkups are routinely asked if they have any problems with headache. Suppose that if the answer is "yes," these patients are offered quick access to both nondrug methods of treatment and the latest and most specific headache medications—without any hassles! Now envision a time when your health plan contacts you regularly to find out if you are satisfied with the care you receive for your headache problem. Finally imagine that your health plan is actually graded on how well it does in handling your headache problem.

Sound too good to be true? Something like this already happens for patients with certain kinds of needs. An organization called the National Committee for Quality Assurance (NCQA) accredits and routinely monitors health management organizations and insurance companies on how well they score in providing certain kinds of health care. Another organization, FACCT (The Foundation for Accountability) also develops what it calls "measurement sets," which it uses to assess health plans and physicians on how well they perform in handling various medical problems. FACCT emphasizes identifying measures that evaluate the aspects of healthcare that matter most to consumers.

Employers who buy insurance for large groups of employees can compare various health plans not only on how much they cost, but also on whether they are accredited by the NCQA and how well they scored in various areas. This gives them the ability to judge organizations by the quality and value of the care they provide. Currently, some of the areas measured include how well a plan does at providing childhood immunizations, advising smokers to quit, or screening for cervical cancer.

A number of headache organizations, including ACHE (American Council for Headache Education) and AASH (American Association for the Study of Headache), have begun to explore the possibility of making headache care an NCQA measurement. In early April of this year, a Migraine Focus Group meeting was held in New York City at which representatives of NCQA and FACCT shared information about their organizations with ACHE and AASH. The group discussed how to advocate for the inclusion of headache care in NCQA and FACCT quality measures, and how that quality should be assessed.

What would it mean to you if health plans were rated by how well they did in providing care to headache patients? It is likely that the plans would pay a great deal of attention to improving their performance in managing disabling headaches. You or your employer could look at how well a particular health plan does in caring for headache patients before you decided to join. And you just might come to accept as routine the kind of care described in the opening paragraph of this article. Both ACHE and AASH are committed to making good headache care and access to it a priority on the national healthcare agenda, and are taking the steps needed to make certain that happens.