These are among the key findings of the My Migraine Voice study, published on May 5, 2020, in the journal Headache; the international study surveyed people in 31 countries across North and South America, Europe, the Middle East and Northern Africa, and the Asia Pacific region. The results published recently focus on respondents from the United States, while the global findings were published in the November 2018 issue of the Journal of Headache and Pain. For the U.S. component, which was sponsored by the drugmaker Amgen, the authors surveyed more than 1,100 adults with migraine who experienced four or more migraine days each month to learn more about how the symptoms affect them and the steps they take to manage their health.
Disability Associated With Migraine Frequently Underestimated
“People often underestimate the level and duration of disability that migraine causes during an attack,” says Paula K. Dumas, a coauthor of My Migraine Voice and editor in chief of MigraineAgain, a website owned by Everyday Health Group. Dumas also experiences migraine attacks herself. “A bad attack can take an otherwise healthy person down for days at a time, including the prodrome, aura, headache, and postdrome phases,” Dumas adds. “Add up those days people cannot function, and you have a condition that’s the No. 1 most disabling condition among people under 50 years old, according to the World Health Organization (WHO). This report illuminates the fact that migraine is much, much more than a bad headache.” Similarly, 98 percent of survey respondents reported that they experience the postdrome, or “hangover,” phase, which can include severe fatigue and having difficulty concentrating and thinking clearly, the Migraine Trust says. For most, 39 percent, this phase lasts up to 24 hours, while it persists for more than 24 hours for 26 percent of respondents. “The experience of a migraine attack extends beyond the headache phase,” notes study coauthor Dawn C. Buse, PhD, clinical professor of neurology at Albert Einstein College of Medicine of Yeshiva University in New York City, and a member of the scientific board of MigraineAgain. “While the headache phase is often the most obvious and difficult phase to bear, there can be significant impairments in the other phases of the attack, including the prodrome, aura, and postdrome,” she adds.
Anxiety and Fear of Next Attack Common
According to Dr. Buse, the findings of My Migraine Voice are similar to those of another project she worked on called the Chronic Migraine Epidemiology and Outcomes (CaMEO) study, which was published in April 2016 in the journal Mayo Clinic Proceedings. Perhaps not surprisingly then, 87 percent of those surveyed reported difficulty sleeping, while up to 48 percent said they often live in fear of their next migraine attack. “Migraine is an unpredictable, painful, and debilitating condition that can have negative impacts on all aspects of life — big and small — so it’s not surprising that people experience anxiety as a result,” Buse notes. To combat anxiety related to migraine, she recommends getting educated about the condition and working with your care team to develop an “optimized treatment plan” that includes both medication and nonmedication approaches, such as cognitive behavioral therapy, biofeedback, and relaxation therapy. “You and your doctor can decide whether it would be valuable to work with a mental health professional, although in many cases people can learn and practice some of these techniques on their own using smartphone apps and websites designed to teach and guide people through relaxation exercises,” Buse adds.
Most Rely on Family and Friends for Help During Migraine Attacks
Because of the often disabling symptoms of migraine, 69 percent of respondents said they relied on family, friends, or others for help with daily tasks during migraine attacks. In fact, respondents reported being helped for a median of nine days in the three months prior to participating in the survey. Respondents with chronic migraine reported being helped during migraine attacks for a median of 10 days during the three months prior to participating in the survey. Often, Buse says, caregivers can feel helpless as they watch their loved ones experience migraine attacks, and people with migraine themselves live with guilt, because they fear being a burden or missing out on life events due to symptoms. “The results of this study remind us that migraine can have wide and far-reaching impacts on all aspects of life, and that migraine can also affect the lives of those around you, including family, friends, and coworkers,” Buse explains. “The effect of migraine extends far beyond the individual with migraine, like a rock being thrown into a lake makes ripples that extend in all directions.”
