11 May National Headache Foundation Survey Shows Majority of People with Migraine are Unable to Control Disease and Dissatisfied with Current Preventive Treatment Options
The National Headache Foundation recently announced findings from a new survey, Preventing Migraine Attacks: A Current Perspective, which characterizes the experiences of people living with migraine and highlights the physical and emotional barriers to preventive treatment.
The survey found half (50%) of people with migraine are extremely dissatisfied with their current ability to control their disease and report a range of emotions as a result, including frustration (39%), exhaustion (29%), stress (19%) and anxiety (15%). Despite the variety of options currently available to treat and prevent migraines, most people with migraine still aren’t able to completely control their disease and the negative effects and feelings that come with it. In fact, most responders (84%) currently taking a preventive treatment wish there was a better treatment option.
“Migraine is the second most debilitating disease worldwide and it impacts all facets of a person’s life, causing significant emotional and physical distress. So many people with migraine live in fear every day because they don’t know when an attack will hit,” says Jill Dehlin, RN, a person with migraine and Chair of the National Headache Foundation’s Patient Leadership Council. “In this survey, many people reported feeling they are chasing an unreachable goal to get their migraine disease under control, highlighting the need for new preventive treatment options, as well as resources to educate and empower them to take control of their disease.”
While the cycle of trying and failing new preventive treatments is exhausting to most people (76%), the majority are hopeful and optimistic when starting a new therapy (82%), with more than half (53%) saying the single most important attribute for a future preventive migraine treatment is to provide more migraine-free days per month.
The survey also explored how migraine disproportionately affects women and people of color to better understand their unique experiences and address challenges. For nearly half of women with migraine disease (48%), hormonal changes related to menstruation, menopause, or childbirth triggered the worsening of their migraine disease.
Black and Hispanic people with migraine reported being more likely to feel worry, fear, and anxiety at the thought of taking a preventive treatment. But when asked about treating their disease overall, 77% of Black and 73% of Hispanic responders say they wish they had sought care sooner.
Black people with migraine disease are also more likely to find the impact of the disease on their daily lives unacceptable. The survey revealed they grapple with negative feelings about managing their disease more frequently than other responders:
- 68% feel like they are chasing a goal that they cannot reach to get their disease under control
- 72% report feeling that life is passing them by
- Two-thirds (66%) often feel a keen sense of frustration in having to adjust treatments
- Two-thirds (66%) feel they are a “guinea pig” as their healthcare provider tries to find the right preventive treatment for them
Hispanic responders had similar experiences but were less aware of preventive treatment options than others.
- 73% feel they are juggling migraine treatments trying to find the right one
- 73% feel like they are chasing a goal that they cannot reach to get their disease under control
- 71% report feeling that life is passing them by
The survey indicates that living with migraine disease has a broad and detrimental impact on people’s lives, affecting their energy level (64%), mental clarity (57%), productivity (54%), personal relationships (31-50%), and professional success (49%). In fact, sixty-five percent (65%) of responders say their migraine disease makes them feel like life is passing them by and over half (52%) say they cannot make plans with friends, family, or colleagues because their disease is so unpredictable.Additionally, more than two-thirds (67%) acknowledge their risk of anxiety and depression increases as the number of their migraine attacks increase.
“Biohaven is committed to the almost 40 million people who suffer from migraine. We are proud to support this research with the National Headache Foundation to help identify and address the unmet needs of the migraine community,” said Vlad Coric, M.D., Chief Executive Officer of Biohaven. “This research showcases the need for new preventive treatment options and helps determine how we can invest our resources to best meet the needs of people with migraine.”
About Migraine Preventive Survey
The Preventing Migraine Attacks: A Current Perspective was a 20-minute, online, quantitative opinion survey conducted by the National Headache Foundation and funded by Biohaven Pharmaceutical Holding Company Ltd. The survey was fielded between February and March 2021 and included responses from almost 1,200 women and men aged 18-70+ in the U.S. who were diagnosed by a healthcare provider with migraine disease 2 or more years ago and satisfied one of the following criteria:
- Been prescribed a preventive migraine treatment
- Currently taking a preventive migraine treatment
- Previously taken a preventive migraine treatment