SYRACUSE — If you happened to scroll through social media on June 21, you might have noticed a few members of the Eagle Newspapers team posing for selfies with matching purple sunglasses. The hashtag #ShadesForMigraine accompanied the photos as part of a campaign started by the Association of Migraine Disorders.
“Sunglasses are a visual representation of migraine as many people experience extreme sensitivity to light. This initiative gives people a platform to share their connection to migraine disease, in the hopes of spurring more conversation,” reads a release from the association.
June is Migraine and Headache Awareness Month. According to the Association of Migraine Disorders, migraine disease affects one billion people worldwide and is the leading cause of disability for women between the ages of 15 and 49.
Sarah Hall, whose name many Eagle readers will recognize, is one such woman. Hall was the editor of the Eagle Star-Review and the Baldwinsville Messenger until 2018 and the editor of Syracuse Woman Magazine from 2018 to 2020. She suffers from chronic migraine.
“I started getting them really frequently in college, but at that point they weren’t usually debilitating. I struggled on and off with them until after I had my first child in 2009. When he was a baby, I started getting them every day, to the point where I couldn’t function. It was awful,” Hall said.
Migraine, Hall cautioned, is not “just a headache.” She deals with pain on a daily basis — usually a 4 or 5 on a 1-10 pain scale, with bad days ratcheting up to a 7 or 8 — but she has other neurological and gastrointestinal symptoms.
“Because of the migraines, I have all kinds of other fun symptoms that limit my daily functionality — memory issues, brain fog, dizziness, sensitivity to noise and light, nausea,” Hall said.
Hall said her chronic migraine attacks have “derailed [her] life.”
“I’m not the parent I want to be, especially to my youngest — she’s never known me without migraine. It affects all my relationships,” she said. “Last year I was so sick all the time I lost 30 pounds. I used to run; I can’t anymore. I can’t make plans. I was laid off from a flexible job at the start of the pandemic and I’m having a really hard time finding something that can accommodate the unpredictability of my illness.”
Dr. Deena Kuruvilla, director of the Westport Headache Institute in Connecticut, said migraine can have serious consequences for a person’s health. Left untreated, migraine can increase a person’s risk of stroke or cardiovascular disease.
Struggling with stigma
In addition to the pain and suffering that come with migraine disease, patients often must contend with unsympathetic healthcare providers and employers, according to Kuruvilla.
“There’s certainly a stigma that exists among healthcare professionals about migraine,” Kuruvilla said, recounting the story of a 16-year-old patient whose previous neurologist accused her of making up her symptoms to skip school.
Bosses might believe their employees are exaggerating as well.
“They keep thinking it’s just a headache, which does their employees a disservice,” Kuruvilla said.
Primary care providers may lack the necessary expertise to properly diagnose and treat migraine, Kuruvilla said. Often, migraine disease is misdiagnosed as sinus problems, neck pain or temporomandibular joint (TMJ) dysfunction, which is characterized by pain or difficulty moving the jaw.
Hall can attest to the tribulations of finding the proper diagnosis.
“Migraine is largely a diagnosis of exclusion — they rule out everything else it could be and go, ‘Huh, yeah, guess it’s migraines.’ But even that took years for me,” Hall said. “I have chronic migraines, which means I get them almost daily, and I saw a whole bunch of doctors who said it’s not possible to get migraines that often. Guess what? It is!”
Kuruvilla encourages patients to ask their primary care providers if they are comfortable diagnosing or treating migraine. If the answer is no, ask for a referral to a neurologist or headache specialist.
“You’re your own best advocate. If your doctor isn’t helping you, it’s okay to find someone else. They don’t always have all the answers,” Hall said.
Finding hope
Hall’s migraine attacks are refractory, meaning they do not respond well to treatment. She has tried numerous medications and lifestyle changes: triptans, beta blockers, antidepressants, anticonvulsants, Botox injections, yoga, diet changes, biofeedback and more. Most recently, she has tried a medication that blocks a protein called calcitonin gene-related peptide (CGRP).
“Last month I had my first CGRP infusion treatment, but it does not appear to have been successful. However, I’m seeing a headache specialist at the University of Rochester Medical Center’s Headache Clinic and he says there are still several more options we can try,” Hall said.
Each migraine patient is unique, Kuruvilla and Hall said.
“What works for one person doesn’t work for someone else. It’s an incredibly complicated disease, and it’s dreadfully under-studied,” Hall said.
Kuruvilla said some of her patients prefer non-pharmaceutical treatments such as nutritional supplements, acupuncture and mindfulness.
“We try to treat every patient individually. The biggest challenge is finding a treatment regimen that works for that person,” Kuruvilla said. “There’s definitely a lot of hope.”
To learn more about migraine disease, visit shadesformigraine.org.
