Turning her pain into fierce advocacy, she helps others fight for their lives.
The summer before her sophomore year of college, Michelle Tracy, then 19, began experiencing migraine attacks—and they haven’t stopped since. Today, at age 33, she continues to live with pain but is not ruled by it; on the contrary, she’s empowered by it, and works to help others every day.
Seeking an accurate diagnosis—and an effective doctor
You don’t often hear people with chronic pain say they’re lucky, but Michelle is an exception. “The E.R. doc working the night I had my first migraine attack had personal experience with migraine disease and suggested a neurological consult, which was a lucky break,” she says. (Michelle believes terminology is key to advocating for herself and others: “A migraine is not a ‘headache.’ It is an ‘attack.’ You will rarely hear me use the word ‘headache’ when associated with chronic migraine disease; I use the term ‘head pain’ because a migraine attack can exist without having a ‘headache.’ Head pain is just one possible symptom of a migraine attack.”)
“I’m lucky to have Dr. Kate Atkinson, an amazing primary care physician who has never given up on me, even as many neurologists did. And I’m lucky to live close to the Boston area, where there is a cluster of great health care providers with specialties in chronic migraine and other headache disorders,” she says. Even so, Michelle says it took 11 years before she finally found a specialist who helped her find some relief.
“My doc, Brian McGeeney, M.D., is a neurologist, headache specialist, and a pain management expert,” says Michelle. “He’s a think-outside-the-box kind of doc, and a headache patient himself—and he told me right away that ‘there’s never not anything else you can do,’ which is something I desperately needed to hear.”
Trying everything for relief
Run down the list of potential treatments for migraine, and Michelle has tried nearly all of them. Over the past decade, she has used all of the available triptans, at least one of which still currently helps to abort her migraine attacks. Of the dozens of preventive medications she’s tried, some have helped but many also frequently resulted in side effects that still linger long after she stopped them. DHE (dihydroergotamine) injections help enough that she learned how to do them herself at home, as an alternative to inpatient infusions.
Botox treatment helped her cut down her severe migraine attacks from daily to three-to-four days a week, and nerve blocks ease the neck and shoulder pain that can come with attacks. Chiropractic manipulation, massage, and acupuncture have all been at least partially helpful—but aren’t covered by her state-provided health insurance. Yoga and exercise can help—but only when her pain, vomiting, and dizziness are controlled enough to engage in them safely. Sinus surgery didn’t help but adjusting her diet to avoid her trigger foods has. An IUD has been very helpful in reducing her menstruation-related migraine attacks. Michelle has also had some success with the use of cannabis and ketamine for very severe and stubborn attacks.
Talk therapy and lifestyle changes
What has helped her consistently since her teens—especially with managing migraine—is talk therapy. As a teenager, she began experiencing obsessive compulsive disorder (OCD) and started seeing a therapist. “I’ve been going to a psychiatrist for over 20 years now, and I’ve seen many therapists over the years,” Michelle says. “The therapist I have now is excellent. I came into his program through the suggestion of a pain psychologist, and it’s one of the best things that ever happened to me.”
Part of the success of that treatment modality has been a dialectical behavior therapy (DBT) program. Usually DBT is reserved for people with borderline personality disorder, which Michelle doesn’t have, but her health care providers thought it would be helpful for her anxiety, depression, panic attacks, OCD, and learning to grieve and accept life with chronic illness. Michelle learned daily coping skills that changed her life.
Mindfulness and meditation are also a big part of her coping strategy: “I try to incorporate that into my life every day, whether it’s listening to a guided meditation, working in my gratitude journal, or reading a book or an article about self-love or self-care.”
Las Vegas: A turning point
Two years ago, Michelle experienced a turning point in her perspective. She was traveling in Las Vegas with a loved one, and she had a severe migraine attack. Unable to get her vomiting under control, she went to the E.R. thousands of miles away from home—and she was devastated that her disease was ruining her trip.
“Las Vegas had been on my bucket list forever, and we were scheduled to go on The High Roller (the world’s tallest Ferris wheel) the next day before we flew home. I have a thing for Ferris wheels, so this was the main reason I was so excited to be in Vegas,” says Michelle. “I couldn’t see how any of that was going to happen now. I was headed into pity party mode when my companion leaned in and said ‘OK, here’s how we play this. We tell people we spent our last night in Vegas at this exclusive club off the strip, called Club Sunrise.’ (The E.R. was at Sunrise Hospital.) ‘It was so exclusive, you had to have a special wristband to get in. We even got to go in the back. We stayed there all night and then called a cab back to our hotel.’”
Michelle felt her feelings shift. Having her loved one keep her in the moment and make her laugh—when all she wanted to do was scream and cry—taught her an invaluable lesson. And they even made it onto the Ferris wheel before heading home. Since then, she goes into pity party mode much less often, and feels more hopeful than ever that she can travel and enjoy fun things—even if she experiences pain.
Pain has changed Michelle, but not only for the worse. “I’ve learned that I can handle a lot more than I ever thought I could, and I’ve been able to help loved ones learn to advocate for themselves,” she says. “I’ve learned that I don’t have to accept disrespectful treatment from someone just because they hold a medical degree. I kept searching for doctors until I found my ‘Dream Team.’ And I learned that I can use my pain and suffering to help others in situations similar to mine.”
To that end, Michelle has become a strong patient advocate known as “The Migraine Warrior.” She started her blogging and social media work with the intent to empathize, educate, and empower people in the migraine and chronic pain communities. She became a pain ambassador for U.S. Pain Foundation to help others in Massachusetts, and has attended a variety of advocacy events such as The International Headache Society’s Global Patient Advocacy Summit, and Headache on the Hill, an annual national lobbying effort in Washington, D.C.
“My pain has opened up the world to me because there are millions of other people living with this disease, and I’ve had the chance to interact with many of them online or in person,” she explains. “It seems like everywhere I go, I have a migraine buddy not too far away.”
Migraine Warrior: MigraineWarriorBlog.wordpress.com
Migraine Warrior: Facebook.com/TheMigraineWarrior
U.S. Pain Foundation: uspainfoundation.org
American Migraine Foundation: americanmigrainefoundation.org
Miles for Migraine: milesformigraine.org
Alliance for Headache Disorders Advocacy: allianceforheadacheadvocacy.org
Association of Migraine Disorders: migrainedisorders.org
To Write Love on Her Arms: twloha.org