She turned her need into ways to help others.
It took Kerrie Smyres, 40, nearly 15 years to be diagnosed with chronic migraine. She remembers one of her earliest attacks vividly: “It was triggered by rose-scented potpourri in the workroom next to my fifth-grade classroom, and I will never forget it,” she says.
Challenge to Find a Diagnosis
The next school year, she started missing class more often; she had frequent stomachaches (which we know today can be a manifestation of migraine in prepubescent children). She tried to be taken seriously, but “when you don’t have the word migraine—only ‘headache’—it can seem melodramatic to others.”
It was not until she was 25 that Kerrie was diagnosed with chronic migraine. Part of the challenge in getting diagnosed, says Kerrie, was her doctors’ perceptions of migraine: “When I was a kid, doctors thought of migraine as one-sided pain, with visual aura and vomiting,” she explains. “But my pain is on both sides, I don’t have a visual aura, and I don’t vomit—so every doctor I talked to dismissed my complaints as ‘just a headache.’ Almost every adult in my life thought I was just trying to get out of going to school.”
In college, no one believed how serious her pain was, and she learned to power through it. She married husband Hart after college, and began pursuing a graduate degree—but the pain interfered. On the path to a proper diagnosis, Kerrie was first misdiagnosed with Meniere’s disease; she endured temporomandibular joint disease (TMJ) surgery, sinus surgery, allergy shots, and more.
In 2001 she finished her thesis, but still didn’t have a diagnosis—and she was waking up every night with a severe headache. A new primary care physician finally referred her to a pain specialist. A happy accident resulted in her seeing a neurologist instead, which yielded a positive result—the neurologist diagnosed her migraine and sent her to the Mayo Clinic for treatment, where she finally began to get the care she desperately needed.
A Blog is Born: The Daily Headache
In 2003, Kerrie had surgery to have a nerve stimulator implanted … but it failed to help. She experienced an existential crisis: She was angry that her career wasn’t taking shape the way she had planned, and her migraine was getting worse and worse. Kerrie wanted her work to help others.
One day in 2005, she read an Oprah.com post by Susanne Ruppert about acceptance of her own migraine and cluster headaches—someone who said it was possible to love your life in spite of the pain—and Kerrie struggled with what she read. The idea that suffering was a choice, instead of something out of her control, was difficult to reconcile.
At the time, blogging was just beginning to take off. Kerrie decided to use the medium to foster more conversation about such challenging topics for the community of people with migraine. Through her blog, she would educate others, tackle difficult subjects, and reach out for support. She created TheDailyHeadache.com and shared her experiences, good and bad, with the world.
Kerrie has tried numerous treatments with various levels of success and failure, including triptans, preventatives, dihydroergotamine (DHE), opioids, Botox, nerve blocks, physical therapy, chiropractic manipulation, exercise, yoga, massage, acupuncture, acupressure, dietary changes, surgery, lumbar puncture, hormonal birth control, and blood sugar monitoring.
Through it all, she has shared her life on her blog and in writings at Migraine.com—including a post about her realization, almost 10 years after launching The Daily Headache, that she agreed with Ruppert’s perspective after all.
“Do not call me a migraine sufferer,” Kerrie wrote. “I have an illness called migraine, but I do not suffer from it. Having migraine is not a choice, suffering from it is. Suffering is an emotional reaction, a decision someone makes to allow the difficulties in their life to cause mental torment. I cannot avoid the physical and emotional pain of migraine, but I can choose how to react to it.”
TheraSpecs: A Solution for Migraine and More
For years, Kerrie wore sunglasses indoors to manage photophobia (light sensitivity), but her doctor said the sunglasses were actually making her photophobia worse in the long run. She sought another option, and found research on a specific eyeglass tint that helped some people with migraine.
Her new tinted eyeglasses gave her some relief, but Kerrie felt they could be better—especially if they could be redesigned to block peripheral light. Hart felt the entrepreneurial pull to create something better for his wife. He collaborated with an eyeglass frame designer in Italy and a local company to tint the lenses following the guidelines prescribed by the research. Voila! Kerrie had glasses that worked beautifully.
She and Hart had more samples made, distributed them to migraine patient advocates, and soon their business—TheraSpecs—took off. Today, about half of their clients have migraine, and the rest have a variety of other conditions (including traumatic brain injury) that cause light sensitivity.
Migraine as a Full-Body and Mind Experience
Despite the relief she gets from an external nerve stimulator, her TheraSpecs, and other treatments, Kerrie still has migraine attacks at least three times a day—including every time she eats a meal. And this is an improvement over the constant, severe, day-long migraine attacks she has had for most of her life.
“My migraine experience is completely and utterly life-changing,” says Kerrie. “I don’t have headaches; I have a neurological disorder that affects every system in my body.” Pain is just one component of her migraine experience, and she says it’s actually the least problematic. She also lives with bouts of severe fatigue, cognitive dysfunction, odor and light sensitivity, frequent urination, and uncontrollable yawning—it’s a full-body experience.
For many years, Kerrie has embraced yoga as a coping mechanism. “It isn’t preventative or abortive for me, but I love it,” she explains. “Yoga shows me that while my body doesn’t work the way I want it to work, it still does many things well, and it connects me to the positive aspects of having a human body.” Most days she’s not able to make it to her yoga studio, but when she can, it helps a great deal.
Therapy has also been one of her most useful migraine treatments. Processing the grief, loss, and shame that surrounds her illness has led her to learn how to practice self-compassion, and to live her best life in spite of the diagnosis. “I’m way stronger and more resilient than I ever knew before,” says Kerrie.
“Migraine has two equally important components: the physical experience and the emotional one,” she says. “Often, the emotional part gets pushed aside. That can work in the short term, but that approach won’t sustain someone with a long-lasting illness. Tending to my emotional needs completely changed my experience with migraine, and I am generally happy with my life, even though I’m often too sick to work or even leave the house.”
Advice for the Newly (or Not Yet) Diagnosed
No one should have to wait 15 years to get a proper diagnosis. One way to ensure the best care, says Kerrie, is to seek out experts. She urges anyone who believes they are experiencing migraine to seek help from a specialist certified in headache medicine.
“If you’ve tried a handful of treatments and don’t have certified specialists in your town, travel to see one if you can,” she says. “Some primary care physicians and general neurologists are excellent at treating migraine, but they often don’t have the necessary specialized knowledge for patients who don’t respond to first-line treatments. You need to advocate for yourself to get optimal care.”
Kerrie urges people not to neglect their emotional experience, either. She points people with migraine to resources like ChronicBabe.com (focusing on teaching women to craft incredible lives beyond chronic pain and illness) and Toni Bernhard (blogger and author of books including How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Live Well with Chronic Pain and Illness: A Mindful Guide). “It’s important to recognize both the experience your body is going through, and how you are reacting to it emotionally,” she says.
American Migraine Foundation: americanmigrainefoundation.org
National Headache Foundation: headaches.org