Filmmaker Susanna Styron was terrified and baffled when her daughter, Emma Larson, began experiencing episodes of partial vision loss and dizziness, followed by vomiting and pounding headaches, at age 14. An eventual migraine diagnosis did little to solve the mystery or ease the symptoms. Emma later had to take a break from college because of debilitating attacks.

Frustrated and dismayed after visiting countless doctors with her daughter, Styron channeled her emotions into her work. The result is a documentary film called Out of My Head that weaves facts about the history, symptoms, and prevalence of migraine with the personal experiences of Emma and others with the condition.

"I talked to so many people with migraine when trying to get help for Emma," says Styron, whose father was novelist William Styron. "I saw that they were hiding it, feeling stigmatized. They were closeted. This film validates their experience."

Styron wrote and directed Out of My Head, a sometimes surreal, graphic depiction of migraine that includes a compelling mix of illustration, animation, and commentators as diverse as writer Joan Didion and NFL Hall of Famer Terrell Davis. The film was produced by Jacki Ochs, a longtime movie producer whose credits include Vietnam: The Secret Agent and 9/12: From Chaos to Community. Ochs, too, is familiar with migraine; her sister, niece, and late grandmother all had it.

Stigma Endures

Despite the fact that migraine is relatively common—nearly 1 billion people worldwide live with it, according to the Migraine Research Foundation—it is widely misunderstood. Styron herself was uninformed before her daughter was diagnosed. At one point in the film, she admits to Emma, "I thought you were being a drama queen."

Ochs hopes the film will help change how people think about migraine. "People with migraine are belittled. Co-workers say they're slackers or not giving their all," Ochs says. "We had to make a film about it because people just don't get it." (For more about migraine, visit BrainLifeMag.org/Basics-Migraine.)

A Crowded Field

The documentary highlights notable people who had migraine, including Thomas Jefferson, Georgia O'Keeffe, and Virginia Woolf. Klaus Podoll, co-author of Migraine Art: The Migraine Experience from Within (North Atlantic Books, 2008), connects the dots between Alice in Wonderland and author Lewis Carroll's migraine symptoms, including headaches and strange hallucinations. Even Alice famously "falling down a hole" can be linked to the lost time and darkness experienced by those with migraine.

Didion reads from "In Bed," her essay about her recurring migraine headaches, which was published in the 1979 book The White Album. "When I say a headache, I don't just mean a headache," she says. "I mean something that would totally brutalize you."

Former NFL player Davis, who had his first migraine at age 9, talks about managing attacks during his sports career, including one during the 1998 Super Bowl when his Denver Broncos defeated the Green Bay Packers. Despite the migraine, he was named the most valuable player.

Rays of Hope

The film introduces advocates and activists such as the husband and daughter of Sheila Lineberry, who has experienced intense attacks for decades. The family participates in Headache on the Hill, an annual two-day lobbying event in Washington, DC, organized by the Alliance for Headache Disorders Advocacy (AHDA).

The AHDA brings together health professionals, patients and their families, and advocates to lobby Congress for more research funding. "Since 2010, the National Institutes of Health annual funding for migraine has increased from $15 million to $20 million," says Ochs. The increase is good, she says, but still well below funding for other diseases.

Where to Watch the Movie

Out of My Head premiered in February 2018 at the Museum of Modern Art's International Festival of Nonfiction Film and Media in New York City. Visit outofmyheadfilm.com to find a screening near you, or host one by selling a minimum number of seats ahead of time through the online link.

The website includes a complete "Movie Captain" toolkit to help you get the word out on social media. Eventually, the documentary will be available for streaming. Sign up for announcements under "Stay in the Loop" on the homepage.

Helping Others

Now 30, Emma Larson is a social worker who has less frequent and less intense attacks since she tracked down her food triggers, says Styron. "Emma says she went into social work because she wanted to help people who deal with migraine silently, as she did."