Philadelphia—Despite numerous treatment options, migraine patients report being dissatisfied with the relief—or, more precisely, the lack of relief—they are getting, according to a new survey.

The national survey, Migraine in America 2016, received responses from more than 3,900 people experiencing migraines. The sponsor, Health Union, which hosts communities for patients with challenging health conditions, notes that many of the respondents also said they had difficulty receiving a diagnosis, especially when they were young, and that they often feel isolated and stigmatized due to the condition.

The survey report notes that about 37 million people in the U.S. have migraines, with the World Health Organization estimating the condition affects 18% of women and 7% of men in this country.

Survey respondents described trying a variety of methods to treat their migraines: 94% use OTC pain medication; 89% use abortive/acute prescription medication; 84% used preventive/prophylactic prescription medication, and 64% use rescue prescription medication. More than a third said they spent more than a $1,000 a year in nonreimbursed expenses to treat the condition.

Yet, only 40% said they were satisfied with their current treatment plan. Many, 68%, also said they had tried complementary or alternative therapies, possibly because of that.

Most, 97%, of survey participants reported that they had identified their migraine triggers, and 91% of those said they take special steps to avoid them. Yet, the most common triggers—including weather or barometric pressure changes, certain smells, and bright lights—often are impossible to avoid, according to the report.

Another area of concern was the difficulty of diagnosing migraines. While 61% of survey respondents said they started experiencing symptoms before the age of 19, only 26% were formally diagnosed before they were an adult.

The effect of migraines on work life also was an issue for those filling out the survey. About 25% had stopped working, taken medical leave, or reduced work hours due to their symptoms. Overall, 93% said migraines affected their ability to work, and 89% said it affected personal relationships.

In fact, 67% said they suffered stigma because many people in their lives believed migraine is “just a headache.”

The Migraine in America 2016 survey was conducted online between May and June 2016.

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