Celia Robertson, 17, is graduating from high school this year. Her goal is to study art and leave for college in the fall.
Oona Robertson, Celia’s twin sister, won’t be graduating this year. She had to drop out of school two years ago because of constant, debilitating migraine headaches. Her goal is to leave the house at least once a day.
“I feel dizzy, shaky, nauseous and exhausted all the time,” said Robertson, of San Francisco. She has had chronic migraine syndrome for three years. “I’ve been hospitalized, but no one can do anything for my pain. My headache is consistently a 9 on a scale of 10 … and 10 is equal to surgery without anesthesia.”
According to Dr. Peter Goadsby, director of the Headache Foundation at UCSF, 37 million Americans suffer from migraine headaches. Ten percent of those, like Robertson, have chronic migraine syndrome, meaning they get migraines 15 or more days a month.
The answer to what causes them or what might cure them has been slow in coming. But new research, and the efforts of a small band of Bay Area activists, may help lead to some relief.
Abnormal brain action
When scanning the brain of a patient in the midst of a migraine, Goadsby said, he sees “areas of the brain – small very distinct areas – that are abnormally active.”
That abnormal activity is a sign of debilitating head pain – and more. Sensitivity to light, movement, sounds or scents; nausea; numbness in the hands or face; flashes of light, wavy lines, blind spots or other changes in vision can sometimes accompany the pain.
“People’s lives come to a halt,” Goadsby said. “During a migraine, the brain gets overloaded like a switchboard that cannot take more calls.”
After Robertson’s headaches began, she started wearing sunglasses to school because the migraines made her sensitive to light. Then she gave up fencing – a sport she’d competed in for seven years. She cut school to half time, then had to quit altogether.
In their Potrero Hill home, Robertson’s family put in skylights because the light bulbs were too bright for her. They stopped cooking with garlic and onions because the scents made her nauseous. On the rare occasions when she is well enough to eat meals at the dinner table, her mother lowers the lights and everyone speaks calmly and softly.
“It’s a good week if I can get out of bed every morning,” she said. “I have no hope of graduating, traveling, working or going to college like my sister and my friends. I just have to accept that people are going to live their lives without me.”
Doctors have not been able to precisely pinpoint what causes migraines. According to Goadsby, there is a hereditary link – 90 percent of migraine sufferers have family members who also get migraines. But patients can have different headache triggers, which can include specific foods, alcohol, perfume or other scented products, hormonal shifts, stress or changes in sleep patterns.
“We can safely say that change in daily routines is bad for migrainers,” Goadsby said. “Regularity in sleeping, eating and exercising is good.”
Goadsby is seeking migraine sufferers who will volunteer to have a migraine chemically induced in his clinic so he can use scanners to study what’s happening in patients’ brains before the pain starts. This research, he believes, may help shed light on new ways to prevent and treat migraines.
Migraine research has been slow in the past several decades due largely to lack of funding, said Goadsby. Of the $1.3 billion given out in 2009 by the National Institute of Neurological Disorders and Stroke, the branch of NIH that is the top funder of headache research, only half of 1 percent of that amount went to headache research. Part of the problem may stem from the fact that the number of applications for headache research is also low.
“We can’t fund applications we don’t get,” said Linda Porter, program director for the neurological disorders branch.
Lack of funding may explain why most of the commonly prescribed drugs to treat migraines have been on the market for almost two decades. Triptans, such as Imitrex, Relpax and Zomig, are taken to treat migraines when they start. They reduce a migraine sufferer’s abnormal, excessive pain signals sent through neural pathways in the head. But triptans also constrict blood vessels, which can increase the risk of heart attack in a small number of patients.
There are several prescription medications used to treat other medical conditions that doctors have found sometimes relieve migraines, including beta-blockers, usually prescribed for cardiovascular problems; antidepressants; and even anti-seizure medications. Some migraine sufferers take them preventively to ward off the headaches before they start. But for some migraine sufferers, like Robertson, nothing seems to work.
New classes of drugs
Goadsby predicts that new classes of migraine drugs are on the way. He’s conducting a program of in-patient treatment for 10 consecutive days, during which people with severe migraines receive regimented intravenous injections.
Within 18 months, he expects to see drugs called CGRP receptor antagonists on the market. They target a different brain chemical than triptans do, one that drives migraine sufferers’ pain-sensing nerves. According to Goadsby, the new drugs won’t carry triptans’ increased risk of heart attack.
In October, the FDA approved Botox injections for patients with chronic migraine syndrome. Botox may prevent migraine pain signals from being sensed by the nerve endings. Robertson tried the treatment, but it didn’t help relieve her pain, and getting it approved by her insurance company was a battle.
“We were denied twice,” said Lael Robertson, Oona’s mom. “Sometimes, dealing with insurances is like a second job.”
Eileen Jones of Piedmont can relate. She, like Robertson, has chronic migraine syndrome and faces migraine headaches every day. Because of the pain, which she compares with natural childbirth, she had to quit her job as an ICU nurse seven years ago. Her insurance company denied her cutting-edge treatment three times before finally agreeing to pay for it.
Jones had an occipital nerve stimulator surgically implanted below her right clavicle. The battery-powered device sends electrical pulses through wires in her neck to nerves in the brain. The signals don’t block pain, but they alter the way parts of the brain deal with migraine pain.
“The ONS doesn’t cure the headache, but it dampens the pain,” Jones said. “It feels like I iced it down.”
In 2007, Jones traveled to Washington with 43 doctors from around the country to lobby Congress for increased migraine research funding. She went back in 2009 to do more lobbying. As a result, she says, for the first time NIH will include a migraine research scientist on one of the committees that reviews grant proposals.
Jones is also building grassroots support at home. She and her husband, Ken, used their savings to establish a migraine fundraising race, Miles for Migraine. The third annual race took place in November in Golden Gate Park. Despite rainy weather, 200 participants – Oona Robertson’s family among them – raised $10,000 for the UCSF Headache Center.
These efforts are cause for optimism on the part of migraine sufferers like Jones and Robertson, Goadsby believes. “Look up and look forward,” he said. “Find ways to support the funding problem. Migraines are a real neurological disorder that science is just starting to understand.”