People with migraine feel isolated, stigmatized and often dissatisfied with treatment, survey reveals

Health UnionAug 31 2016

Migraine in America 2016, a national survey by Health Union of more than 3,900 individuals experiencing migraines, reveals that patients have numerous treatment options, but are often dissatisfied with results. A summary infographic is also available. Many reported difficulty receiving a diagnosis, particularly when young. In addition, respondents noted feeling isolated and stigmatized due to the condition.

Migraines are a genetic neurological disease, characterized by severe head pain often accompanied by other symptoms, such as nausea, vomiting, difficulty speaking, numbness or tingling, and sensitivity to light and sound. Migraines are quite different from regular headaches. Besides their debilitating nature, they can often last at least four hours or even days. About 37 million people in the U.S. have migraines, with the World Health Organization estimating they affect 18% of women and 7% of men in the U.S.

Although the exact causes of migraines are unknown, brain scans show that they may be caused by hyperactivity in parts of the brain. Triggers vary widely be individual. While 97% of survey participants identified their triggers, and 91% of these individuals take special steps to avoid them, the most common triggers (such as weather or barometric pressure changes, certain smells, and bright lights) are impossible to avoid.

Migraines are difficult to diagnose, as it is considered a diagnosis of exclusion, meaning that other possible causes of the symptoms must be ruled out. Sixty-one percent of survey respondents started experiencing symptoms before the age of 19, but only 26% were formally diagnosed before they were an adult.

"No one took my symptoms seriously until I was in my 20's," says Migraine.com patient advocate Kerrie Smyres. "I have had chronic migraine since I was age 11, but was not diagnosed until I was 25. When I was kid, most people thought I was making excuses to skip school. In all those years that my symptoms were dismissed, I internalized the stigma of migraine. I'm nearly 40 and, after three years of intense therapy, have finally stopped questioning if my symptoms were as severe as I believe them to be."

In addition to being difficult to diagnose, migraines are often extremely difficult to treat. People with migraine use pain management, abortive, preventative, and rescue medications. Despite the many treatment options tried, only 40% of respondents are satisfied with their current treatment plan. Many have tried complementary or alternative therapies. Interest may be driven by the perceived lack of effectiveness of traditional over-the-counter and prescription therapies.

Katie Golden, a Migraine.com patient advocate, asks: "why are they dissatisfied with their treatment? Are they not seeing the right doctor? Are they scared to try something different - had a bad experience?" She goes on to say: "I think there is always something new I can try, whether it is a balance of traditional and alternative treatments. I do my due diligence to learn about treatments before deciding, but I feel you can't be afraid to try or you'll be stuck where you are. Everyone deserves to have their pain alleviated."

The impact of migraine on one's life can be extreme. One out of four respondents stopped working, took medical leave, or reduced work hours due to migraine. The impact goes well beyond physical symptoms. The consequences of the stigma and lack of understanding can be devastating. "The belief that migraine is just a bad headache is so prevalent that even the people we're closest to don't believe the extent of migraine's symptoms. Migraine attacks are often physically brutal; the lack of support people with migraine receive can be just as vicious emotionally," said Smyres.

"I really believe something like this survey can show the impact of migraines and help move beyond the stigma. It can be used by those of us with the condition to educate the people in our lives. You pass these results - third party results - on and it helps validate what we are saying," added Golden.

"The fact that there is a plethora of treatments, but individuals have so much difficulty finding effective ones illustrates the need for a site like Migraine.com. It is a place where people with migraines can come together to exchange ideas and learn from each other," says Tim Armand, President and co-founder of Health Union. "In addition, people find a sharing community helps with the social, emotional, and psychological aspects of the condition."