Kelly, wearing a neck brace to protect the occipital neurostimulator she had implanted as part of a clinical trial, is pictured with her husband, Dan, and daughter, Shelby. “They know my intractable chronic daily migraine attacks just by looking at my eyes,” Kelly says. “They also remind me to pace myself, practice self-care, and that I am more than migraine.”

Experiment Today, Hope Tomorrow: Engaging in Migraine Studies

By Calli Barker Schmidt

When it comes to treating her chronic and vestibular migraine attacks, Kelly Amspacher is game for just about anything.

With the support and encouragement of her physicians, especially the headache specialist who has been managing her treatment for 25 years, Kelly looks for opportunities to participate in research studies aimed at better care—and, perhaps one day, a cure for a painful condition that affects millions of Americans.

EARLY PAIN PROPELS SEARCH FOR RELIEF

Kelly, 64, of Havertown, Pennsylvania, says she likely started experiencing migraine attacks at a young age. But as a child in the 1960s whose headaches were making her nauseous, she was misdiagnosed with a stomach virus. “Migraine was not even a thing to consider,” she remembers.

The pain worsened as she approached adulthood, established a career as a clinical nurse specialist for high-risk obstetrics and neonatology patients, and worked toward a PhD in nursing research. It wasn’t until her 20s that migraine was diagnosed. About a decade later, she was further diagnosed with intractable chronic daily migraine, or refractory migraine—which causes treatment-resistant attacks that can last for days. Her doctor at the time prescribed medication, including codeine. In the 1990s, “that was one of the few treatment options at that time,” she says.

But that treatment also short-circuited her career path.

“I could not work and take opioids, so I was asked to leave my dream job,” Kelly recalls. “And two weeks after that, I was asked to leave the PhD program, again because of the migraines. They didn’t think my performance was up to snuff.”

After these two heartbreaking losses, she began seeing a new headache specialist in a practice that explored other types of treatments. And just as importantly, her new physician wanted to partner with her to participate in research studies and trials for new treatments.

RESEARCH UNLOCKS FRESH POTENTIAL

In 2005, Kelly enrolled in a Thomas Jefferson University neurosurgery clinical trial in nearby Philadelphia to examine the efficacy of neurostimulation of her occipital nerves, using a stimulator implanted in her skull.

She used a small remote-controlled device to send electrical signals to the nerves in her head, selecting the electrical pattern and intensity based on the type and severity of the pain she was experiencing. The stimulator reduced her baseline head pain and led to less drastic “peaks and valleys,” she shares.

“I could create my own specific pain management protocol, because every migraine is different,” she explains. “This gave me a sense of power over my pain.”

But the occipital device only targeted pain in the back of her head. Once the study ended, Kelly’s headache specialist and neurosurgeon also installed a supraorbital neurostimulator—a similar device targeting a different nerve that helped treat migraine pain in her forehead, temples, and behind her eyes. Her neurosurgeon told her at the time that she was one of only a handful of individuals in the U.S. with migraine to have both stimulators implanted.

Then, after years of using the combined neurostimulators to help manage her pain, Kelly also began experiencing vestibular migraine attacks—a neurological condition that can cause vertigo and dizziness. It became difficult for her to distinguish between the tingling sensations from the stimulators’ electrical impulses and the subtle head tingling that signaled a vestibular migraine attack would quickly follow.

She and her providers agreed the electronic stimulators needed to be removed. They created, and regularly updated, new migraine action plans utilizing different combinations of medications to provide the most relief possible in the absence of the stimulators.

CONTRIBUTING TO NEW DISCOVERIES

Pain research can take many forms, and Kelly’s insights have contributed to several. These included external neuromodulation device studies, which invite participants to test new pain management products before they are available to the general public, providing researchers with insights about their effectiveness. One device she tried, Kelly recalls, “didn’t do squat for me, but being very detail-oriented, I was able to share with the specialist exactly what it did.”

She also has taken part in qualitative studies, including one involving a questionnaire and interview that examined how an individual’s relationships with family and friends impacted the intensity of migraine attacks. She’s fortunate, Kelly knows, to have that support from her husband, Dan, and adult daughter, Shelby, as well as friends with whom she doesn’t have to feign cheer or painlessness on bad days.

Another study looked at how scents and migraine symptoms interact. Migraine can cause altered sense of smell or phantom smells, and certain scents can lead to an attack—for Kelly, lavender, rather than being soothing, immediately increases her pain.

She kept a regular log of scents she came across throughout the day, if they corresponded with migraine pain or symptoms, and the effects of her migraine medications on those symptoms. She also completed a site visit at the Thomas Jefferson University Headache Center, where she was given scented sticks to smell and identify, describing how each one affected her.

The process taught her more about her own reactions—which, in turn, provided valuable feedback to the study organizers.

Not every study directly impacted her own health or improved her pain, Kelly reflects, but her involvement itself had a larger impact.

“Whether the research outcome was positive or negative, I feel that my participation is very positive,” she shares. “With every research study I participated in, the results would either support the hypothesis—or not support the hypothesis, which leads to further investigation.”

‘I WOULD TRY ALMOST ANYTHING’

Kelly estimates she has tested at least 50 medications while searching for the best combination of therapeutics to prevent, halt, or reduce migraine pain. Some work temporarily; some don’t work at all. Right now, she takes 10 daily medications and has another five on hand to help address migraine attacks when they occur.

Some are prescribed off-label. A medication developed to treat epilepsy helps manage her vestibular migraine auras—which she describes as “neon, squiggly lines that are swaying back and forth, and neon basketballs, and snow in the bottom half of my field of vision.”

She is also seeing reduced pain intensity and shorter attacks after trying a vagus nerve stimulator, a small handheld electronic device that she uses on her neck six times a day and as needed during migraine attacks. Biofeedback and psychological support have made a difference, too.

“I told my headache specialist, ‘If you said to do a cartwheel in the middle of the highway and it would help, I would do it,’” she says. “I would try almost anything.”

SPEAKING OUT AND PERSEVERING

Kelly is an active advocate for others living with migraine. She speaks at conferences and participates in the annual “Headache on the Hill” advocacy event hosted by the Alliance for Headache Disorders Advocacy, where she shares the realities of migraine with legislators. She has facilitated and attended peer support groups, and writes articles offering advice for others with the disease, such as one published by the nonprofit Miles for Migraine about advocating for appropriate care in the emergency room.

Living with chronic pain can be isolating and can destroy a person’s self-esteem; volunteering can counteract those realities. “It helps me understand that I am not alone and I have something that is worth contributing,” she says.

And she’s constantly on the lookout for the next breakthrough—in her own treatment, and in the efforts to better understand and address migraine pain.

Kelly encourages others living with pain to participate in clinical trials and be open to research opportunities, “as long as the potential participant feels comfortable and confident in the study’s design and purpose,” she says.

“Research is vital to understanding clinical conditions, treatment, management, and determining what resources need to be provided,” she explains. “Participating in research provides me with a sense of purpose. If I am able to reach one person, or impact one person’s care or life, my participation was successful.”