Unfortunately, misunderstandings about migraines are widespread and extend well beyond the range of symptoms that often accompany an attack. Many people who have never experienced one don’t realize the profound psychological and social effects the condition can have or how disabling it can be. This lack of awareness helps further the stigma associated with migraines, that people who have the condition are simply overly sensitive or lack the will or desire to do what’s necessary to control them. Thankfully, many people who experience migraines are more than happy to set the record straight. Here are nine things they want you to know.
1. It’s much more than a headache.
“People think it’s just a headache because that’s all they know,” says Lisa Jacobson, 59, who experienced frequent migraines for 25 years before going into remission 4 years ago. She’s the founder of The Daily Migraine, a website and online community with more than 300,000 followers. “It’s a real illness. It’s a neurological condition,” says Jacobson. “But you don’t feel as though you’re even allowed to express what’s going on,” as people may not take your symptoms seriously. That’s because it’s an invisible illness, Jacobson notes. No one can see your pain, nausea, or sensitivity to light, sound, smell, or touch. “People don’t understand that this is actually a disorder of the brain,” says Shirley Kessel, 56, a resident of Lafayette Hill, Pennsylvania, who is the executive director of Miles for Migraine, a nonprofit organization that organizes walking and running events to raise money for migraine research. “I’m married to a doctor, and even he didn’t fully understand until it affected our family.” Kessel notes that among people who experience migraines, there’s a wide range of symptoms and overall severity, which means that even some people who get migraines don’t understand how disabling it can be for others. That, she says, helps fuel the perception that people who experience migraines are weak, unreliable, or not really sick. What’s more, many people who experience migraines are experts at minimizing their own symptoms. “We often fake feeling well,” says Paula Dumas, an Atlanta resident who is the founder of Migraine Again, an online wellness community for people who experience migraines and other forms of headache. “It’s easier to just fake it, if possible, than to explain.” The first stage of a migraine episode, prodrome, can last for one or two days and involve constipation, neck stiffness, food cravings, thirst, and mood changes. The attack that follows, which may or may not be preceded by visual and neurological symptoms known as an aura, can last from 4 to 72 hours. The final phase, postdrome, often involves confusion, weakness, and dizziness that can last 24 hours or longer. During this last phase, which is sometimes known as a “migraine hangover,” Jacobson says, “you are so spent. You need a couple of days just to get back to normal.”
3. For some people, symptoms never end.
A minority of people who have migraines experience a chronic, rather than episodic, form of the condition. This means they have a migraine headache lasting 4 to 72 hours on 15 or more days each month for more than three months, with at least eight of those days including additional migraine symptoms, according to Robert P. Cowan, MD, a professor of neurology and the director of the headache program at Stanford University Medicine in Palo Alto, California. Chronic migraines are estimated to affect about 1 percent of the population, according to the American Migraine Foundation. Some studies estimate that each year, about 2.5 percent of people who get episodic migraines will progress to the chronic form of the condition. Kessel experiences migraine pain about 25 days each month, along with frequent nausea, light and sound sensitivity, fatigue, and scalp sensitivity. She also has constant tinnitus, or ringing in her ears. These symptoms persist, she notes, even when she takes preventive medicines, and they’re somewhat reduced but not well controlled when she takes rescue medicines. Adds Jacobson, “I’ve had migraines that lasted 400 days. Everyone has them for a different amount of time.”
4. Treatments for migraines aren’t perfect.
Migraine treatment is vitally important to millions of people. “When a migraine strikes, we have medications that are not narcotics that can really ease the suffering,” says Dr. Cowan. But these drugs don’t work consistently for everyone. “There are over 250 treatments identified, and each of us responds differently,” notes Dumas. And while there’s no cure or silver-bullet treatment, she says, “people who take ownership of their unfortunate biology and work on prevention can make real improvements” in pain reduction and quality of life. But, she admits, this takes a lot of effort. And over-the-counter drugs like ibuprofen and acetaminophen aren’t the answer, either. “A migraine is a neurological illness, not a headache,” says Jacobsen.
5. Migraine attacks often can’t be prevented.
Many people who experience migraines see improvement in their symptoms when they take steps “to make life more regular, consistent, and predictable,” Cowan says. This includes sleeping, eating, and exercising on a regular schedule. But the benefits of these behaviors are limited for many people. “I do all those self-care routines, and I still experience chronic migraines,” says Kessel, who worries that overemphasizing the benefits of preventive steps may further stigmatize those who don’t benefit much from them. “If I didn’t sleep on a regular sleep schedule, would my migraine attacks be worse? Probably. But I still have this condition,” she says. “It’s not the cure.” Jacobson notes that while a small percentage of people who experience migraines can identify a single food that triggers their attacks, most people have multiple triggers, many of which can’t be avoided. “If you have a hormonal trigger and you’re a woman,” she says, “or a barometric trigger like a cold front coming in, you cannot always avoid it.”
6. It’s often a very lonely experience.
People who get migraines often feel that no one understands what they’re going through, says Kessel. “The public doesn’t understand,” she says, “because they don’t have all the information. I think that even the closest family members of people who experience migraines don’t understand it.” This may extend, she says, to close friends and even doctors. Jacobson says she was surprised that when she first started getting feedback from followers of The Daily Migraine, they said that what they valued most about the site weren’t ideas for better symptom management. Instead, “95 percent of people said they don’t feel alone anymore.” Dumas doubts that anyone who doesn’t experience migraines can truly understand the condition. “Just as I can’t fully understand epilepsy or Parkinson’s,” she says, people on the outside can’t ever really “get it.”
7. It can wreak havoc on your work, family, and social life.
A lot of people who get migraines experience rifts in relationships that may never heal, says Jacobson. “Many people have lost their families,” she says. “I have spoken to so many who have had to ship their kids to the grandparents. So that adds to the depression and the anxiety of it, because you just never know if you’re ever going to get better.” Just as bad, Jacobson says, is the risk of losing your job — a story she’s heard many times. When someone calls in sick repeatedly, supervisors will say, “‘What is wrong with you? Just come in. No, you’re not allowed to take off one more day.’” And it’s not just bosses but fellow employees who contribute to the problem, according to Jacobson. “People feel angry that they have to cover for [the absent employee],” she says. “Nobody else believes [the person really has] a migraine.” And people who get migraines often lose friends over time. “When you cancel plans with people, they think you’re making it up, or that you just don’t feel like going,” Jacobson says, even though in reality, “you would do anything to be out at the beach, or be with your kids, or be with your friends. And it’s very, very depressing to have to lie in a dark room instead.” But one pleasant surprise that many parents experience, according to Jacobson, is that their kids turn out all right. “When you’re going through it, you feel like a terrible mom or a terrible dad,” she says, but “most of the time, your kids end up being really empathetic and understanding.”
8. Finding the right doctor can be difficult.
According to Cowan, there are only about 500 board-certified headache specialists in the entire United States. This translates to about one doctor for every 65,000 to 85,000 people who get migraines, depending on the estimate you use. “If headaches are really interfering with your life, then you should see someone who knows a lot about headaches,” he says. But this might have to be someone other than a headache specialist. Jacobson believes that the lack of headache specialists in the country, and around the world, reflects the fact that migraines aren’t taken seriously as an illness. “Most doctors don’t choose this field,” she laments, “because they think it’s just a headache.”
9. Living with migraines takes courage and resilience.
“Imagine how hard it is to drag yourself out of bed, in pain, day after day, and fight a disease that others think is stress induced or imagined,” says Dumas. “It takes courage to keep fighting.” Kessel is encouraged by people who show up at Miles for Migraine events with a determination to spread awareness about their condition. “If you want a cure for this disorder, you need to start advocating for yourself,” she says. “You need to get up and make some noise about your condition, and come out of the closet and not be silent.”
