Building migraine awareness.
Isiah and Sheila Lineberry have been married for 34 years. Their daughter Mercy Lineberry McDaniel obtained her law degree at the age of 22, and later completed her Master of Divinity. Litany, their younger daughter, has a master’s degree and is currently working on her doctorate in computer science. A successful, tight-knit family with a heart of gold… coming soon to a theatre near you.
Advocating and filming
In 2010, Sheila and Isiah joined Headache on the Hill to advocate for more research funding for migraine and headache diseases. They visited Congressman John Lewis from Atlanta, and it was there that they met Susanna Styron and Jacki Ochs, who were filming the meeting as part of a documentary about migraine.
Susanna, the writer and director of the documentary titled Out of My Head, was inspired to make the film to better understand the migraine attacks that were debilitating her daughter, Emma, who opens the film by recounting her first migraine with aura.
The Lineberrys’ story stuck with the filmmakers. Two years later, they got in touch with the Lineberrys, who live in Georgia, and asked if they would be willing to be part of the film.
An officer in need
Following in her father’s footsteps, Sheila became a police officer shortly after a few years of college. While off-duty, she began having head pain so severe that she called her mother, a registered nurse, who told her to go to the hospital. When Sheila arrived at the hospital, she had been convulsing. The doctors mistakenly assumed she was a drug addict.
After several hours with no update, Sheila’s mother felt compelled to drive the several hours to where Sheila lived. When she finally found Sheila at the hospital, she was non-responsive. With one quick look at her daughter’s condition, she knew the cause was an aneurysm.
Doctors brushed her off, insisting that Sheila had gotten into drugs. Once her mother informed them that Sheila was a police officer, the doctors started to take her more seriously. After three spinal taps, her mother’s diagnosis was proven correct. Her 21-year-old daughter had suffered an aneurysm. Over the next 15 years, Sheila had five brain surgeries, the effects of which are still crippling today.
A lifetime of migraine attacks
Isiah Lineberry has never known his wife without migraine. They met at church, and when he heard she was in the hospital, a common occurrence post-aneurysm, he visited. This interaction gave him a glimpse of how badly she experienced “headaches.” It wasn’t until the week after they were married that he really saw the havoc it created.
“I came home after work and she said she had a headache,” Isiah recalls. “I could see she was in intense pain. I had to talk softly. Keep the lights off. She could not eat anything. My efforts to help were unsuccessful. Finally, throwing up gave her some relief. The headache lasted for three days. I had never seen anyone in pain like this.”
Sheila explains, “It feels like my brain is under attack by intense, ever-increasing, unrelenting pain—pounding, pounding, pounding!”
The pain “is real and debilitating, even though it’s invisible to loved ones, friends, and co-workers. When someone mentions ‘I am getting a migraine’ it’s an emergency for that individual and they need an emergency response.”
A name for the pain
Sheila saw a new doctor after the family moved to West Virginia, where she was properly diagnosed with migraine. Naming Sheila’s condition was comforting, but the limited treatment options at the time didn’t help her.
Isiah had gotten used to the drill. If Sheila called him at work, he knew it was because she had a migraine. Inside he thought, “not another one.” It meant leaving work early and rearranging plans so he could take care of her and the girls. “The years have given me patience,” he says. Mercy remembers her dad getting overwhelmed at times, but he never complained. “My wife is a brilliant, compassionate individual. I wonder, does she ask, ‘Why, Lord? Why me?’ But she doesn’t.”
Despite the persistence of her disease, Sheila tries to force herself out of bed, even when her body tells her to rest. Litany remembers vacations where her mom spent the majority of the trip in bed. She can try to hide it, but those close to her can see in her eyes when she is silently fighting the battle within.
“Our mom is a rock star,” says Mercy, who marvels at the fact that her mother, who has chronic migraine, obtained a master’s degree in community health. “Her dedicated example is a chief reason for our success,” Mercy says of herself and her sister.
Litany reflects that having a parent with chronic pain “really helps me be more compassionate toward others in what they suffer with in their daily lives. You never know what someone else is dealing with.”
An unfortunate family trait
Mercy had her first migraine in middle school. She experienced a visual aura, followed by pain. A few years later, it was Litany’s turn. She didn’t realize what was happening to her at first, but her mom knew right away.
Isiah is the outlier in the family, never having experienced a migraine attack himself. “I can’t even imagine,” he laments. With years of experience, he encourages caregivers to “seek to understand, knowing you can’t fully.”
Mercy’s migraine attacks have increased in duration as she’s gotten older, but the frequency is lower, with only two attacks in the past year. Litany, however, has about one migraine attack per week. But Litany has her mother’s determination to overcome each attack, and she notices she feels better if she starts getting back to life sooner rather than later.
Both Mercy and Litany say their migraine attacks pale in comparison to their mother’s. There were times they feared for their mother’s life. Often, prayer was the only hope for relief.
Out of My Head
Seven years in the making, the film explores migraine as a complex and deeply stigmatized neurological disease affecting nearly a billion people worldwide. The documentary uses interviews, art, and animation to explore issues surrounding the history of migraine, famous icons with the disease, scientific understanding (or lack thereof), limited treatment options, and the devastating effects of this disease.
Jacki Ochs, producer, is on a crusade to reduce the stigma about this unpredictable and misunderstood condition. In preparation for the premiere, Jacki reached out to members of the Coalition for Headache and Migraine Patients (CHAMP). In February 2018, CHAMP hosted a sneak peek screening of the film near Washington, D.C., during Headache on the Hill, the annual event where the Lineberrys and Out of My Head visionaries Susanna and Jacki first met eight years earlier.
Sheila, Isiah, and Mercy walked the “purple carpet” before the film began. Some Out of My Head film participants met that night for the first time. Sheila proudly watched as her family’s voice reached a room full of advocates, doctors, and caregivers. The filmmakers were bombarded with praise after the movie from those who finally felt that someone was listening.
Out of My Head Film: outofmyheadfilm.com
Headache on the Hill: allianceforheadacheadvocacy.org/headache-on-the-hill
Coalition for Headache And Migraine Patients: headachemigraine.org
U.S. Pain Foundation: uspainfoundation.org