Eula Moore-Marshall, 56, had her first migraine symptoms in 1990 in Saudi Arabia while serving in the Gulf War, but both military and civilian doctors dismissed them as stress-related for nearly a decade. It wasn't until she saw several different neurologists in 2010 that she began to get relief, but it took years of trial and error before she noticed a change. “I still have about 16 episodes per month, but they are much less intense,” she says. She credits the improvement to a neuromodulation device that uses electrical currents to tamp down brain activity that likely causes the attacks.
Emily Klein, 48, an education professor in Montclair, NJ, has had chronic migraine for years. In the early days of her diagnosis, she'd go to the emergency department, where she'd be administered a cocktail of drugs for pain and nausea. Now she takes erenumab-aoee (Aimovig), which lessens the severity and frequency of her headaches. She also exercises and tries to meditate.
Moore-Marshall and Klein are among the 38 million Americans who have migraine: one in five women, one in 16 men, and one in 11 children, according to the Migraine Research Foundation. Despite these numbers, myths about migraine persist. For example, most people—even those who have migraine—think it's just a bad headache. Because of that, people with migraine may not seek treatment, says Jessica Ailani, MD, FAAN, director of the MedStar Georgetown University Hospital Headache Center in Washington, DC. “We've diagnosed only the tip of the iceberg,” agrees Kathleen B. Digre, MD, FAAN, professor of neurology at the University of Utah in Salt Lake City.
But researchers believe the disorder is associated with activation and sensitization of the trigeminovascular system, which consists of connections between nerve cells and brain blood vessels. It's also linked to increased levels of calcitonin gene-related peptide, says Teshamae Monteith, MD, FAAN, associate professor of neurology at the University of Miami School of Medicine. The many symptoms of migraine include visual disturbances; nausea; vomiting; dizziness; sensitivity to sound, light, touch, and smell; tingling or numbness in the face or extremities; and severe, throbbing pain on one or both sides of the head that lasts from four to 72 hours.
Another myth is that men don't get migraine—which may explain why they typically try to power through the pain and are reluctant to seek help or follow up with care. Joseph Coe, director of education and digital strategy at Global Healthy Living Foundation in Upper Nyack, NY, waited years to get treatment for his symptoms, which included nausea and sensitivity to light. “The attacks were bothersome, but getting help wasn't a priority,” says Coe. Instead he'd take Excedrin and lie down in a dark room with a cold compress on his head. “By the time I was in my twenties, I'd been having migraines for 10 years. I finally went to my primary care doctor and was treated with the migraine drug sumatriptan.”
Patient organizations continue to educate the public and provide a forum for those with migraine. The American Migraine Foundation's website features links to articles and information on topics such as migraine triggers, how migraine affects women, and nonpharmacological treatments such as acupuncture and yoga. Through its Migraine University, the National Headache Foundation offers information for college students. Miles for Migraine, which works to end the stigma about migraine, has a checklist to help patients prepare for visits with their doctors. And a new initiative from the Global Healthy Living Foundation called 86 Migraine encourages people to become advocates for public policy that can improve access to migraine care. The foundation's website features relatable posts such as “The Worst Things People Can Say Because of Migraine Myths” and “10 Things Advocates Wish the World Knew About Migraine.” A video about men with migraine notes that ignoring it instead of seeing a doctor prolongs the agony.
“Online information can be empowering for patients,” says Rebecca E. Wells, MD, MPH, associate professor of neurology at Wake Forest School of Medicine in Winston-Salem, NC, who suggests asking your headache specialist to recommend sites. Dr. Ailani says that even people whose attacks are controlled can find information online about new treatments they might want to discuss with their doctors. Both neurologists caution that the internet is a tool to help you become more informed, not a substitute for talking with your doctor.
Most migraine-related sites promote the message that help is available. “People who have been diagnosed may have stopped treatment because it wasn't working, but there is likely something that can help them significantly,” says Coe. “And people who experience symptoms but don't realize they have migraine should see if their symptoms match the definition of migraine and look for tools that lead them to a proper diagnosis and the help they need.”
What kept Klein going over the years was a neurologist who always reassured her that there were other things they could try. “I can relate to a lot of the posts I read online from people who might still be untreated if they hadn't sought care and kept at it with their doctors,” she says.
Migraine Resources
- American Academy of Neurology: BrainandLife.org
- American Migraine Foundation: americanmigrainefoundation.org; 856-423-0043
- Association of Migraine Disorders: migrainedisorders.org
- Chronic Migraine Awareness: chronicmigraineawareness.com; 631-294-4218
- Coalition for Headache and Migraine Patients: headachemigraine.org
- 86 Migraine: 86migraine.org
- Migraine Again: migraineagain.com
- Migraine Disease: migrainedisease.org
- Migraine World Summit: migraineworldsummit.com
- Miles for Migraine: milesformigraine.org; 484-534-8786
- National Headache Foundation: headaches.org; 888-643-5552
- US Pain Foundation: uspainfoundation.org; 800-910-2462