Seeking relief from throbbing migraine headaches? You’re not alone

Daylight streaming through a window. Loud conversation. A whiff of perfume. Everyday sensory experiences like these become unbearable to people who suffer migraine headaches, a condition affecting some 36 million Americans, or 11 percent of the population, according to the Migraine Research Foundation. The nonprofit that’s dedicated to funding migraine research also ranks the disease as one of the world’s top 20 most disabling.

“If you haven’t experienced it, you truly can’t imagine the amount of pain,” says Angie’s List member Deanna Young of Spring, Texas, who likens her migraines to getting hit in the head with a baseball bat. Since her late teens, the 56-year-old has been experiencing daily headaches that turn into migraines if untreated. “I’ve tried every medication known to man,” Young says.

Despite the prevalence of the condition, doctors remain unclear on the exact cause of migraines, and the path to treatment for many proves long and winding. Some experts believe a drop in serotonin levels and other brain chemicals interacts with the trigeminal nerve — the largest sensory nerve in the head and face — which causes migraine pain. Enlarged blood vessels may also play a role.

Sufferers often try multiple medications and health care providers — including primary care doctors, neurologists and chiropractors — before finding relief. Many also need to use multiple methods to keep their migraines in check, including over-the-counter drugs, prescription medications, lifestyle modifications and therapies like massage, acupuncture and Botox, which was approved as a migraine treatment by the FDA in July 2011.

Yet nearly half of sufferers go undiagnosed, according to the MRF. “It’s unbelievable how many people don’t even know they have migraines,” says Dr. Juline Bryson, a neurologist at the highly rated Headache Institute in New York City. Bryson contends that many suffer for years unnecessarily. “Some think they can tough their way through it,” she says.

A study in April reported about 38 percent of migraine sufferers could benefit from preventive therapies, but only 3 to 13 percent use them. It analyzed the effectiveness of various preventive treatments and concluded that triptans, beta-blockers and anti-epileptic drugs prove effective for treating migraines. “Preventive medications are grossly underutilized,” says Bryson, who urges sufferers to consult a doctor.

What are migraines?

To determine a diagnosis, your physician should take a headache history to understand how often attacks occur, triggers and symptoms. Providers may suggest tests like a CT scan or MRI to rule out other causes of headaches. Patients with migraine headaches must have experienced at least five prior episodes of head pain lasting four to 72 hours.

The headaches usually affect one side of the head, exhibit a throbbing quality, restrict daily activities or increase in intensity with physical activity. During the episodes, either nausea or sensitivity to light or sound occurs. About 15 to 20 percent of patients also suffer a visual disturbance known as auras.

Teacher Faith Golden found the noise of her classroom nearly intolerable when she started suffering migraines. The Encino, Calif., member visited highly rated neurologist Dr. Lorne Label, who instructed her to create a diary for several months to identify triggers. “If I touch red wine, I’m going to have a migraine,” Golden says.

Triggers may include alcohol or caffeine; foods like aged cheese or chocolate; or loud sounds, light or odors. Other culprits include changes in the environment, erratic sleep patterns and stress; or hormonal changes in women, who suffer migraines at three times the rate of men. Headache experts agree avoiding triggers and managing lifestyle can help, though what works ranges widely by patient.

“There are well over 100 treatments and interventions available that doctors use,” says Cathy Glaser, president of the MRF. She adds doctors haven’t discovered a test that can tell a patient what treatments they might respond to. “You have to rely on your doctor’s experience and luck,” she says.

Migraine treatments are limited

Despite how common migraines are, experts lament the limited funding and research on causes and treatments. The only medications specifically approved for migraine treatment are triptans, which constrict blood vessels in the head and reduce inflammation.

However, many doctors prescribe effective “off label” drugs, meaning the FDA has approved them for treating other ailments, such as seizures, depression or high blood pressure. “No one dies from headache,” says Dr. Robert Cowan, director of the Headache Clinic at the highly rated Stanford Hospital & Clinics in Stanford, Calif., to explain the lack of new treatments.

Funding also lags because historically doctors considered migraines a psychological condition, says Dr. Robert Shapiro, president of the nonprofit Alliance for Headache Disorders Advocacy. “In the last five years, there has been an increase in information, more health care providers and a validation of the disorder,” he says. 

Seattle member Rachel Meyers first went to the ER at age 16 for migraines that would plague her into adulthood, causing her to miss two to three days of work a month. Meyers failed to find an effective regimen until she began seeing Dr. Mary Reif at the highly rated Minor & James Medical Group in Seattle. She now takes the anti-seizure drug Topamax as a preventive and receives Botox injections. “The day they were FDA-approved, I called my doctor,” says the 25-year-old nurse, who pays between $100 and $150 out of pocket per treatment after meeting her insurance deductible. “I’ve only missed one work day due to migraine in the last nine months.” She adds that she consulted several providers before finding one who met her needs.

The United Council for Neurologic Subspecialties has offered certification in headache medicine for nine years, but only about 300 certified specialists currently practice across the country. However, many neurologists with years of experience specialize in treating headaches without the board certification, and members report finding success with a variety of providers and treatment within and outside traditional medicine.

Acupuncture and other remedies may help

After Abby Landmeier suffered a workplace injury two years ago that caused a brain trauma and migraines, the Grand Junction, Colo., member tried multiple medications that failed to relieve her pain. “My doctor said we were at the end of the road, medication-wise,” she says.

Landmeier turned to highly rated acupuncturist April Schulte-Barclay, whose treatment helped reduce her headaches to rare occurrences. “I truly wish I had gone to a real acupuncturist early on,” says Landmeier, who pays $62 per session after signing a yearlong contract. Insurance typically doesn’t cover acupuncture or other types of alternative medicine.

Insurance generally covers standard, FDA-approved treatments, but likely won’t cover new treatments considered experimental, such as surgeries, Glaser says. Shapiro says those with occasional migraines pay an average $1,040 per year for medication and chronic migraineurs spend $3,002 per year after insurance. Hospital stays, procedures and doctor visits can add $500 for those with occasional migraines and $1,000 for chronic sufferers.   

As a last resort, some patients even opt for different types of migraine surgery. Highly rated Dr. Bahman Guyuron, who is chair of the Department of Plastic and Reconstructive Surgery at University Hospitals Case Medical Center in Cleveland, developed a procedure 12 years ago that targets nerve “trigger sites” in the face. “We have hundreds of patients [whose] headaches are gone or have improved enough that they can go on with their lives,” says Guyuron, who adds surgery costs about $3,000 to $4,000 per trigger site and about half of insurers cover some portion of it.

Some practitioners are cautious about surgery. “I don’t think we have enough data to say it’s a good thing to do,” says Dr. Merle Diamond, a certified headache specialist at highly rated Diamond Headache Clinic in Chicago. She instead recommends finding a provider to take a comprehensive headache history and establish a treatment program. That may include referrals to mental health providers to cope with the debilitating effects migraines can have or physical therapists to treat muscle and joint ailments that could be contributing to attacks.

Delaying treatment can make migraines harder to treat, so Diamond says start with your primary care doctor and seek additional expertise if you continue to experience them. As Cowan,
the headache specialist at Stanford, advises: “If you’re taking medicines more than once or twice a week or making plans based on whether you might get a headache, you need to get help."

- additional reporting by Gretchen Becker