Migraine Sufferer Speaks for Thousands: “No One Took My Symptoms Seriously”

Despite the availability of several treatment options, many people with migraine aren’t satisfied with their outcomes, according to the national Migraine in America 2016 survey created by Health Union.

People with migraine know that the condition greatly differs from just a regular headache. Migraine sufferers often experience nausea, vomiting, numbness, sensitivity to light and sound, and/or other symptoms. The World Health Organization (WHO) estimated that 7% of men and 18% of women in the United States suffer from the potentially debilitating condition.

Out of the 3,900 patients included in the survey, 97% identified their triggers and 91% try to avoid them. But with weather, certain smells, and bright lights being among the most common, it can be difficult to avoid them.

This survey was presented on Migraine.com, and the president and co-founder of Health Union, Tim Armand, described it as a platform where people with migraines can exchange ideas and learn from each other. It also provides a community to offer social support. Some patient advocates shared their experiences with migraine.

“No one took my symptoms seriously until I was in my 20s,” Kerrie Smyres, a patient advocate, said on Migraine.com. “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.”

This leads to another theme found in the survey results — many patients are faced with stigma, which hurts their condition further. Pain is subjective and nearly invisible, so someone who doesn’t suffer from the same discomfort may think that a patient is exaggerating or just not understand the severity.

Katie Golden, a patient advocate, said, “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.”

Golden continued by expressing her thoughts on why patients are dissatisfied with their treatment. Maybe someone isn’t seeing the right doctor or is afraid to try a new strategy due to a previous bad experience; but without implementing a change, patients can’t expect improvement if they aren’t happy with where they are.

Twenty-five percent of the people in this survey said that they had to reduce work hours, take medical leave, or stop working because of migraine. So the dissatisfaction with treatment is causing consequences beyond discomfort.

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