This story is part of The Salt Lake Tribune’s ongoing commitment to identify solutions to Utah’s biggest challenges through the work of the Innovation Lab.

Note to readers and content warning • This article discusses suicide. If you or people you know are at risk of self-harm, the National Suicide Prevention Lifeline provides 24-hour support by calling 988.

A tingling, then numbness in your arms. A sudden blurriness like an invisible hand has strapped the wrong pair of prescription lenses to your head.

The pain hasn’t begun yet, but it will soon, and when it does the world will give way to an extreme throbbing, like a hammer being dropped on the most tender, interior parts of your brain.

When Danielle Byron Henry was about 8 years old she developed classic migraine symptoms. At first, she only had one or two migraines a month. Then she suffered from them on a weekly basis. In some cases, the migraines were “intractable,” meaning that therapies and medications did little to stop the pain.

As the early signs of an oncoming migraine set in, Danielle’s mind would fog over and she’d forget her locker combination.

“She had some really dear friends who would watch out for her and had me on speed dial,” said her father, Dr. Dan Henry.

Not only did Danielle experience excruciating pain, but she also faced skepticism, her father recalled. “People wouldn’t believe her because on a good day, she looked like a totally normal kid.” She played three sports and excelled in her classes. Still, Henry remembers some teachers thinking “you’re faking it, you just want to be home, even though she was hospitalized multiple times.”

Danielle tried Botox before it was approved by the FDA for chronic migraine treatment. She tried triptans and, after her father exhausted every physician in Utah qualified to treat migraine, they made trips to see specialists in Los Angeles and in Boston.

They tried “cutting edge everything, but nothing worked,” Dan Henry said.

Danielle was hospitalized multiple times throughout high school. The days when she got to be a normal kid were dwarfed by the days she had to contend with migraines.

“When you’re vomiting and feel like somebody’s beating your head with a sledgehammer for a number of days in a row you’d have to be insane not to be depressed,” Henry said. “Your life’s being taken away from you.”

In 1999, three weeks before her 18th birthday, Danielle died by suicide.

Invisible, like anxiety and depression

Losing Danielle reset the course of the entire Henry family’s life. Dan Henry, a primary care doctor in Salt Lake City, has devoted his life to treating migraines. His elder daughter, Elizabeth Henry Weyher and his wife, Diane, set up a foundation dedicated to raising migraine awareness through the Danielle Byron Henry Migraine Foundation in 2016.

“We want to educate patients and the public and workplaces and schools to understand that this is an invisible disease, just like anxiety and depression are invisible diseases,” Dan Henry said.

About 1 in 6 Americans self-report migraines and severe headaches according to a 2018 review, and migraines are more prevalent among women. Migraines were found to be the second leading cause of “years lived with a disability,” in a 2016 study.

While Dan Henry has spent years treating children and adults with migraines, his family’s latest efforts to combat the neurological disease focus on schools and trying to diagnose younger kids. There are many reasons children start having migraines — from a genetic predisposition, to stress, to concussion -- but not everyone is familiar with the symptoms, which can sometimes present as stomach pain.

“We need to educate parents, teachers, administrators, school nurses, and the kids themselves so we can get them identified and treated earlier,” Dan Henry said. “Because we can do a lot more.”

Can schools help identify migraines?

Around November of 2019 Elizabeth Henry Weyher partnered with the Coalition for Headache and Migraine Patients and began to develop materials aimed for migraine education at schools in Utah and across the country.

“Our thought,” Weyher said, “is the earlier we can identify and then have these children diagnosed, the earlier they can start making some lifestyle changes that may be helpful.”

The Migraine at School website offers lifestyle tips, support groups and lists of FDA-approved treatments. They’ve created a screener they’d like school nurses to use when kids come in during the day complaining of illness.

“We’ve had a few health teachers actually take that curriculum and make it part of their health curriculum,” Weyher said.

In the spring of 2021, the Utah PTA adopted four resolutions bringing migraine and headache awareness resources to schools and to work with the Utah State Board of Education “to incorporate information about migraine/headache disease into the required state core health class.”

With the PTA resolution passed, they’re now working on actually implementing the programs in Utah’s traditional and charter public schools, which Weyher said has been challenging. School districts have strict guidelines on materials that can be shared in classrooms, she said. Teachers also have many demands to incorporate more topics into the school day beyond academic requirements.

“The school nurses, teachers and counselors are a huge part of what we hope will be the solution,” Weyher said.

How does lifestyle affect migraines?

Stress seems to play a role in migraine. The deleterious emotional impacts of the pandemic, especially on children, may have worsened migraine symptoms.

One study looking at a small sample of children who already experience headaches found “since the COVID-19 pandemic’s onset, pediatric headache patients have experienced increasing headache frequency, worsening anxiety and mood, decreased physical activity, and increased screen usage.”

There’s some tentative, early, research showing that practices like meditation may help. The Henry family’s foundation provides links to free meditation through their Headache School program run out of the University of Utah School of Medicine neurology department.

Lifestyle changes are an important part of combatting migraine, Dan Henry said. Many of those changes are fairly simple — from ensuring that a patient gets eight hours of sleep each night, to adequate water intake, to exercising and avoiding skipping meals.

A mini-review published in the journal Frontier of Neurology concluded, “patients without regular lifestyle behaviors are more likely to have chronic migraine than episodic migraine.”

Teaching children about these lifestyle changes, getting them treatment early, can change the trajectory of their lives.

More than two decades have passed since the Henry family lost Danielle, but the family’s love for her and profound loss are always present.

In Diane and Dan Henry’s home a portrait of Danielle hangs on the living room wall. There are pictures of Danielle hugging her golden Labrador, Homer. “My daughter was brilliant,” Dan Henry said.

The memories of their funny, smart and athletic daughter and sister give their work a clear sense of purpose, even urgency.

“If we can educate this generation,” Weyher said, “we can make a huge difference.”