Shirley’s Story: Building a Migraine Toolkit from Scratch

Part 2 in Care Tuner’s partnership with Miles for Migraine to help educate and support people with migraine in making healthy behavioral changes to enhance their quality of life. Click here for Part 1: “How to Start Exercising with Migraine.”

Migraine has shaped Shirley Kessel’s family for three generations. Shirley’s mother had migraine. Two of Shirley’s three daughters have it. And Shirley herself has been living with migraine for 43 years, since the age of 16. Having DIY-ed her own care for decades — plus serving as a caretaker — Shirley knows a thing or two about managing this complex neurological disease.

“You can throw anything my way and I can deal with it,” says Kessel, executive director of the advocacy organization Miles for Migraine. “Years and years of skillful practice got me here.”

Because Shirley’s headaches began well before our current era of greater migraine awareness, research and treatment options, she had to find her own path. But through trial and error, Shirley discovered the healthy tools that help her thrive with migraine. Here, she shares her journey, her own lifestyle toolkit, and her conviction that migraine solutions exist for everyone.

“Something will work for you,” she insists.

 “But you’ll never know unless you try. You have to keep trying until there’s something that moves the needle, even one centimeter.”

“Oh My Gosh, We All Have It”: Three Generations of Migraine

By age ten, Shirley was caring for her siblings while their mother spent days in bed with migraine attacks. At 15, Shirley learned to administer Mom’s Demerol injections. And yet migraine awareness was so low that when Shirley began developing headaches at 16, no one put two and two together. “I just took Tylenol or Advil and suffered through it,” says Shirley.

At 24, however, newly married and working in pharmaceutical sales, Shirley awoke one morning with a headache that didn’t go away — for a whole year. The medications her doctor prescribed did little for the pain but caused brain fog so thick that Shirley crashed her car, twice. Hospitalized for an infusion of migraine medication, Shirley had a frightening allergic reaction. Her doctor ran out of ideas, save for one.

“The doctor said, ‘Get pregnant, have a baby, you’ll be fine!’” Shirley remembers.

Not everyone’s migraine improves during pregnancy, but Shirley’s pregnancies brought some reprieve: For years afterwards her attacks were less frequent, though still debilitating. Her luck ran out, however, when at age 45 her migraine turned chronic again. And yet, even then, Shirley’s lack of migraine education led to family history repeating itself. Because when her middle child began experiencing headaches, says Shirley, “I didn’t even think it was migraine. I didn’t make the connection!” In 2013, however, when her youngest was stricken with migraine in the tenth grade, revelation finally struck: “I was like, ‘Oh my gosh. We all have it.”

Shirley’s DIY Migraine Discoveries

It was time to get serious about migraine care. Problem was, there still wasn’t much available. Breakthroughs like CGRP medications were yet a few years away. At a neurologist’s visit, mother and daughter learned the only medications on offer were the same ones Shirley had tried 25 years earlier. “How can that be? You’re so old,” her teenage daughter wailed.

Shirley sought guidance and support online. “My isolation and overwhelm was intense. I felt so alone,” remembers Shirley. “I wanted for us to feel a part of something.” She latched onto the only migraine group she could find, a tiny annual run/walk event in San Francisco called Miles for Migraine. “And the rest is history,” she says: In 2017 Shirley took over as executive director and turned it into a national nonprofit that raises funds for research and education. Miles for Migraine’s events and support would become an important piece of Shirley’s own migraine care routine — a regimen that she’d also been building from scratch, one piece at a time.

Shirley’s care routine had begun with her discovery of yoga. “I know that when people say ‘have you tried yoga’ you want to punch them in the face. But you need to know your body, and it’s how I was able to develop that awareness,” says Shirley. Yoga led her to an interest in Buddhist philosophy, which in turn led to a mindfulness course offered by her local hospital. Altogether, it changed her entire relationship with migraine pain. “I learned to say, ‘It’s just a sensation. It’s not something to be afraid of.’ Pain hurts, but you can learn how to work with it.”

Research had yet to catch up with Shirley and prove that her new habits really do improve life with migraine. Nonetheless Shirley had all the evidence she needed: They made her feel better.

Shirley’s Lifestyle Toolkit

Nowadays, Shirley still has more than 15 migraine attacks each month, for which medications continue to be of limited benefit. But she uses her lifestyle tools to create a sense of ease, allowing her to live a full life despite chronic migraine.

Here are the core strategies in Shirley’s lifestyle toolkit:

• • Mindfulness/Meditation. 30 minutes of daily meditation for prevention.
    • “My biggest tool is my mindfulness practice. I practice it formally through meditation, but throughout each day I try to just check in with myself. The pain is still there, but how I relate to it has shifted. Mindfulness has taught me how to back up and see the whole picture, and not get caught up in how horrible it all is.”

• • Exercise. Some kind of movement every day: Yoga, walking, bicycling.
    • “When I say I do ‘yoga,’ it’s not twisty bendy yoga anymore, because I’m 58 and my body said ‘halt.’ I do gentle movement with stretching and breath. But everyday, I move my body. On days I’m having a migraine attack, I’ll go out for a walk. It might only be 10 minutes. But sometimes I say, ‘I can go further.’”

• • Laughing and having fun.
    • “There’s so much doom and gloom with migraine. I’m not just meditating all the time. I’m being silly. I’m watching funny movies on Netflix, and Weeds, which is the best. I make sure I’m socially connected: Talking with friends, going for walks together. If I have to cancel because of a migraine attack, my friends understand. Finding friends who understand is part of the process of acceptance.”

What might belong in your lifestyle toolkit? To learn more about the healthy behaviors shown to help manage migraine, read “Lifestyle Changes for Migraine: What They Are & How They Work.”