WASHINGTON — Teri Robert got her first migraine decades ago, when she was 6 years old.
“It would feel like my head was going to explode,” she says, remembering that it hurt to even listen to music or gaze into the light.
Her illness became part of a family legacy, passed from parent to child, each generation looking on as the next one suffered.
“My father used to tell me that he would come home sometimes from work and find me in my closet with a blanket and a pillow because it was quieter and darker,” she recalls.
But her family is hardly alone and this migraine patient knows full well that she is fighting a neurological condition that has touched the lives of countless others
“This year, in the world, about a billion people will experience a migraine attack,” says Dr. Peter Goadsby, a neurologist who specializes in the diagnosis and treatment of headache disorders.
Goadsby — who is with the University of California San Francisco Medical Center — is considered one of the world’s top experts on the subject of migraines, and when the American Headache Society convened for its annual convention Thursday in Washington, DC., he was the meeting’s scientific director.
The conference brought together the best minds in medicine to share research and ideas on headache and face pain. The 1,000 or so participants also reached out to Congress and the public to support research that they say is desperately needed and underfunded.
Goadsby puts the situation in stark financial terms. He says in the United States, the true cost of migraines to the economy — in the context of both health care and lost productivity — is somewhere around $20 billion a year. In contrast, the National Institutes of Health spends about $18 million annually on migraine research.
All this at a time when promising new treatments for these debilitating headaches appear to be just over the horizon.
During the American Headache Society convention, researchers reported on clinical trials on a totally new approach that involves blocking a chemical in the brain linked to migraines.
This is the first treatment specifically developed for migraine patients. All those currently in use were originally created to help people with other conditions, and questions have been raised about their effectiveness and the risk of side effects.
“It has been a long road, literally, thousands of years of people having migraine — and it’s about time we got something that actually treats the patient,” says Goadsby.
He is excited about the outlook for new treatments but stresses much more research is needed not just on medications, but on basic understanding of how migraines occur and exactly how they affects the human body.
“Migraine is headache plus a whole range of things that ruin life,” Goadsby explains, adding it is a huge problem that deserves attention.
Most people who get migraines, like Teri Robert — the Washington, West Virginia advocate and grandmother of nine — are women over 40. But at the convention, attention was also paid to another intriguing subset of patients — teenage boys who play contact sports.
Dr. Tad Seifert, a neurologist from Louisville, Kentucky, led a research team that looked at the prevalence of headaches in high school football players. The researchers followed about 80 boys from six local schools and what they found surprised them.
“We found that the prevalence of migraine in our sample was much higher than we expected to see,” says Seifert.
Between 16 to 18 percent of the general public gets migraines. But among the student athletes they sampled the number was 34 percent — almost double.
The researchers looked only at the prevalence of migraine, and did not search for a cause and effect. That, says Seifert, will have to wait for future studies.
Already, he is working on a task force on headaches for the NCAA and the results of a similar study on college football players is due out later this year.
It’s one of numerous studies now in the pipeline that is giving Peter Goadsby a sense of hope that he is trying to pass on to migraine patients.
Teri Robert senses that that hope, noting things are a lot better today than they were when she was a child and was offered only Tylenol and a quiet room to wait out her migraines. She walks around the convention halls, pushing for more awareness and more research, with a welcoming smile and the knowledge that her symptoms — thanks to a migraine treatment center far from her home — are under control.
But she has seen and felt a great deal, and it is a constant struggle to remain patient when she knows so much more has to be done.
“I now have four grandchildren with migraines,” she says. “And I am bound and determined things will be easier for them than they were for me.”