Melanie Concordia was 8 years old, riding home on a school bus, when the pain made its first appearance. She had a headache, but it was far from an ordinary annoyance. Her head throbbed along with the jolting bus.

Twenty-five years later, the experience stays with her. “I vividly remember putting my head against the cold glass window of the bus,” Concordia says. “That gave me some relief.”

The mysterious childhood headache was a harbinger of a disease that Concordia still battles. She is one of nearly 40 million people in the United States who suffer from migraine, a chronic neurologic disease that inflicts intense pain by releasing inflammatory substances that swell blood vessels.

Migraines exact a powerful toll on people’s lives. It is the second-most common cause of disability globally – and first among young women. About a decade ago, Concordia was one of them. Her persistent, plaguing migraines drove her from the workplace and left her groping for solutions.

She has rebounded. Migraines are still a strong presence in her life, but Concordia, an occupational therapist at UCHealth University of Colorado Hospital, manages them with a variety of medications and treatments, exercise, diet, and physical and mental health therapy. She also helps to fight migraines on a broader front, through her work with the Alliance for Headache Disorders Advocacy.

“I’m always looking to get better and figuring out how I can chip away at my headaches,” Concordia says.

That stubborn commitment to fighting her disease has paid off, said her neurologist, Dr. Danielle Wilhour, an assistant professor of neurology and headache specialist with the University of Colorado School of Medicine who practices at the UCHealth Neurosciences Center – Anschutz Medical Campus. Concordia works at a job she loves, travels and is a dedicated rock climber.

“It’s nice that she can do the activities she enjoys without fear that migraine is dictating what she can and can’t do in her life,” Wilhour said.

Living with migraines

Concordia stresses that migraines still shadow her. As an OT in the neurological intensive care unit at UCH, she sometimes has to work through them on the job. She credits her supervisors, who understand the challenges and unpredictable nature of the disease, for help with that. She also erects barriers to migraine by carefully maintaining a balance in her daily life.

“I have to get enough sleep every night, stay on a routine, eat well and exercise,” Concordia said. “If any of these lifestyle modifications are off or stressed, it can trigger a headache.”

For those who haven’t had one, Concordia describes a migraine as “the worst hangover you could ever imagine, with a throbbing head, nausea and vomiting.” In her case, a migraine causes sensitivity to light, movement and sound. Everyday life becomes a struggle.

“A migraine really slows you down mentally,” Concordia said. “I have trouble coming up with words and speaking as eloquently as I would like. It takes me longer to process things and respond.”

The “trajectory” of Concordia’s migraine experience began with episodic bouts that at some point became routine. A neurologist she had interned with in high school was the first to prescribe her a migraine medication, Maxalt, which aborts migraines after they begin. By the time she got to college, the migraines were constant, but she could take Maxalt only twice a week. She moved on to Topamax, an anti-convulsant used to prevent migraines. She had fewer migraines, but also endured side effects, such as tingling in her fingers and toes, weight loss and brain fog.

“You have headaches less frequently, but now you’re dealing with all these [other issues],” Concordia said.

Concordia earned her degree in behavioral neuroscience in 2010, but by 2014, the unrelenting migraines sent her to a low point. An attack she couldn’t shake for two weeks severely degraded her job performance and she was fired. She had to move back in with her parents. She was 24, out of work and seemingly out of answers for dealing with the disease that tormented her. But the problem also forced her to confront her foe.

“I thought, ‘If I can’t work, what am I doing?’” Concordia recalled. “I decided to just focus 100% on figuring this out.”

A search for migraine pain relief

She had a neurologist, but with visits limited to one every three months, Concordia took on much of that responsibility herself. She pored over migraine literature, meditated, and undertook cognitive behavioral therapy (CBT) and biofeedback to address the stress of migraine proactively. CBT, which focuses on helping people change unhealthy patterns of thinking and behavior, proved to be “life-changing,” she said.

“When you are in pain all the time, you’re going to feel anxious about it,” Concordia said. Participating in CBT helped her to change her thinking about migraines. Instead of focusing on the fear and anxiety of an impending migraine attack, she learned to redirect her attention to positive thoughts that she could control. She described the process as “strengthening pathways in the brain that can make migraines less strong.”

Her search for relief also led her to take up a ketogenic diet – one that is low in carbohydrates, high in fats and moderate in proteins. When she first read about the diet in 2014, there was little or no evidence that it could positively affect migraine and plenty of opposition to it, Concordia said. She decided to try it anyway, with remarkably positive results that she described in a 2015 piece for the website “Pain Talks.”

“The diet gave me pain-free time,” Concordia said. She credits the regimen, which she continues to follow, with helping her to gain a measure of freedom from migraine’s grip and begin to rebuild her life.

Concordia also began Botox injections, an FDA-approved treatment for chronic migraines, in 2014. After months of uninterrupted pain, the injections gave her 10 headache-free days.

“I thought, ‘This is what it is like to live,’” she recalled. She now receives the treatments every 12 weeks from Wilhour.

“Most people think of Botox as something that relaxes muscles, which can help with wrinkles,” Wilhour said. “It also works on sensory fibers to stop them from releasing the inflammatory [substances] that can trigger migraines.” Wilhour added that Concordia also receives injections in the trapezius muscle to help relieve neck and shoulder tension.

“It’s pretty common to see people with neck and shoulder problems that can lead to a migraine cycle,” Wilhour said. “Headaches can cause neck pain and neck pain can cause headaches.”

A multi-pronged approach to managing migraines

Concordia’s multi-pronged approach to managing her migraines, along with regular exercise to reduce stress, gave her a chance to think again about discovering her life’s work.

“I reassessed what I wanted to do with my life,” she said. In her mind, that was work that did not include sitting and staring at the harsh light of computer screens for long periods of time. The ideal was staying on her feet and working productively with people.

In the fall of 2014, she shadowed an occupational therapist, “fell in love with it,” and applied to a school in Boston the following spring. She began work as an OT at UCHealth Memorial Hospital in 2018 before moving on to UCHealth Medical Center of the Rockies and then on to UCH in September 2021, where she fulfilled her desire to work with neurology patients – many of whom also have migraines. She uses her own unhappy experience with the disease to help them cope with attacks.

Migraine self-care tips

That desire to help others struggling with migraine led Concordia to advocacy work in 2018. She traveled to Washington, D.C. to attend “Headache on the Hill,” an annual event sponsored by The Alliance for Headache Disorders Advocacy. The gathering gives volunteers an opportunity to meet with members of congress and advocate for legislation to aid people whose lives are disrupted by headaches.

The congressional “asks” have included allocating funding for new headache research and additional Veterans Administration Headache Centers of Excellence (HCoE). Wilhour, who joined Concordia in the headache advocacy work in 2021, noted that veterans experience a disproportionate share of headaches from traumatic brain injury and concussions.

This year, Headache on the Hill focused on supporting the CARE for Long COVID Act and ensuring that the bill includes funding of research into migraine and other headaches, which are frequent symptoms of long COVID. In addition, advocates highlighted the need for a “House Headache Caucus” to raise awareness about the damaging consequences of headache disorders and for an “Individualized Education Program” (IEP) that would afford school children with migraine access to the extra resources and help that is afforded other children with disabilities.

“It’s very powerful to do this type of work,” Concordia said. “You meet all these people who have had experiences just as crazy or crazier than you. You see that ‘I’m not alone in this.’” She added that the experience has also shown her the importance of driving change by meeting directly with congressional representatives.

Maintenance for migraine

While she savors many satisfactions in her life, Concordia hastens to add that she is not free from migraines and is always on guard against the disease “creeping back” into her life. For example, she recently added Nurtec, a drug designed to stop migraines from progressing, to her medication regimen – with very good results. She also strengthens her defenses with physical therapy; “healthy distractions,” like talking to friends, baking and taking baths; and applying essential oils to her head when she can’t immediately lie down or rest.

“I’ve been going through this process since 2009,” Concordia said. “It’s been very gradual, but I’m much better off now, with the help of my neurologists, medications and lifestyle changes.”

The long dance with migraine has given Concordia some basic insights that might help those just beginning to deal with the disease. These include seeing a migraine specialist like Wilhour, and building migraine barriers or “buffers,” such as exercise, CBT, and diet. As she put it, “I try to make it not easy to have another headache.” Most of all, patients must advocate for themselves, she said.

“I had to refuse to accept that I would be disabled or wouldn’t be able to do anything,” Concordia concluded. “I had to pause and say, ‘how do I change my life to reduce stress, change my routine and make myself healthy enough for a migraine to not happen?’”