Practitioner and Patient
Courtney S White, MD, remembers exactly where she was when she got her first migraine attack.
She was 23 years old and in medical school. She was on a train and started to get a headache—but not a regular headache.
“I remember thinking, ‘Well, here it is,’” she said.
Courtney had been expecting migraine to show up in her life. All of the women in her family experience migraine, and she has vivid childhood memories of her mom having to pull over to the side of the road and vomit during an attack.
She felt prepared when her first migraine emerged: In addition to watching her female family members battle the disease, both of her parents are nurses. Since Courtney was in medical school at the time, she had easy access to a wealth of knowledge about migraine and how to treat her attacks, which typically last three days.
But that didn’t make her path to headache-free days easy. It took her three years to find a provider who could treat her migraine properly. Now, Courtney uses that struggle to better treat her own patients and to advocate, in big and small ways, for people with headache disorders.
Doctor As Patient
Courtney is a neurologist and headache specialist. She’s currently a headache medicine fellow at the Jefferson Headache Center in Philadelphia and will soon begin working in the center’s general neurology department.
She was able to get through medical school with migraine thanks to advocating for herself and finding a neurologist who was willing to try a newer treatment. Her original neurologist put her on an anticonvulsant and nerve pain medication to treat her migraine. This particular medicine can make it difficult for patients to concentrate and can leave them feeling fatigued – which Courtney points out was “a horrible idea” for a medical student who needed to focus on her studies.
Courtney soon realized she should at least get a second opinion. She started on a new preventive medication, which has proven to be a better fit for her. Her toolbox contains medication, an FDA-approved neuromodulation device, and mindfulness techniques. The combination of the three has reduced the frequency and severity of her attacks.
Her own personal journey affects how she works with her patients now.
“The way I practice medicine is by letting people know: Yes, some people do still need to take a medication or need multiple medications. That’s the nature of this disease,” she says. “However, there are other things that can be done, other than putting someone on three pills and giving them the side effects and that’s it.”
Migraine medications, both those intended to stop migraine and those intended to prevent it, have numerous side effects. Many migraine patients also take medications that aren’t designed for migraine but can help, such as antiseizure medications or antidepressants, which also come with many side effects. These vary by medication but can include dizziness, nausea, fatigue, and changes in weight, among others.
Stigma and the Reluctance to Seek Care
Almost everyone with headache disorders struggle with finding information about how to manage their disease. But it’s especially hard for people who are part of underrepresented minority groups. Many of them don’t trust the health care system, or they come from cultures that struggle to recognize invisible illnesses like headache disorders.
“They were told, ‘Oh, [a headache] is not something you complain about,’ because it’s not like there’s an injury,” Courtney says. “I had one patient who said, ‘I just thought all young women get headaches every day, and that’s just normal.’”
Courtney, who has an Italian-American mother and a Black father, thinks her privilege in being half-white and her family background in health care protected her from experiencing these issues herself. She uses that dual privilege and her training to help change the cycle for her patients.
“There’s so much information out there, and you don’t really know what’s good or bad,” she says. “I’ve been trained, as a physician, on how to interpret information to be able to make decisions. So a lot of people will depend on folks like me who are able to read the science, read the literature, understand all of the weird nuances and the language – and be able to translate it in a way that anyone can understand and help people make their best decisions.”
Becoming an Advocate
Courtney’s willingness to share her story and listen to others made her a perfect fit for migraine advocacy. William Young, MD, a neurologist at Thomas Jefferson University Hospital and a longtime headache disorder advocate, approached her about joining Miles for Migraine’s ACT Now (Advocacy Connection Team) program, which pairs providers with patients.
Through the program, participating headache specialists like Courtney learn about different techniques to advocate for headache disorders. She learned about large-scale ways to advocate, such as participating in Headache on the Hill. During this annual event, advocates, care partners, and health care providers visit Congress to raise awareness about headache disorders and advocate for various asks, such as an increase in research funding. Courtney is also part of the Disparities in Headache Advisory Council (DiHAC), which focuses on health equity and making the headache community more diverse.
Courtney has learned that even small acts of advocacy can be life-changing. She remembers listening to a speaker who talked about how headache disorders often affect people’s ability to hold a traditional job – something that can leave patients feeling “less than” in an American culture that prioritizes productivity. But the speaker framed it differently.
“She [would tell people], ‘I am a patient advocate. I have chronic migraine disease, and this is what I do to try to better the community,’” says Courtney.
That resonated deeply with Courtney, in part because of her own willingness to tell her story.
“I am someone who’s very open about [my headache disorder] because I want people to know I understand it and I hear them,” she said. “Everyone’s headache disease is different, so I’m not going to say I can 100 percent know exactly what you’re feeling. But I’m going to listen to what you’re telling me, and I think that’s really affirming to a lot of people.”