Finding the power within.

Like so many people with chronic migraine disease, LaQuinda McCoy, 37, spent much of her life searching for solutions, for a medication, for anything that would “fix” her. Her first migraine was in middle school, and the attacks became truly debilitating in her 20s. She was diagnosed with chronic intractable migraine at 23, which started her search for the “cause” of her migraine. After they improved markedly with a surgery to remove nasal polyps, she thought she’d found the solution; unfortunately, a second surgery didn’t provide the same relief.

“I was just thinking, ‘Oh, the polyps are causing these!’ And then they came back. I wasn’t aware that migraine is a neurological disease that doesn’t fully go away. It’s always a part of you.”

Working through the pain

LaQuinda didn’t always have health insurance, and found herself tagged as a “frequent flier” for increasingly relying on ER visits when her migraine attacks became unbearable. By 2016, to keep herself functional enough to fulfill her duties as a transplant nurse, she was having to take multiple prescription and over-the-counter (OTC) medications. Still, she was averaging four attacks a week while working 12-hour nursing shifts. The side effects of her arsenal of meds, combined with the repercussions of migraine itself, left LaQuinda feeling foggy, hungover, and unable to think straight.

She had to face the effects of migraine on her work when her mind completely blanked as she struggled to explain medication side effects to a patient. LaQuinda was forced to look up the information in front of the patient and a supervisor who was shadowing her, leaving her completely mortified.

Her breaking point

Soon after, LaQuinda reached her rock bottom: five days of a 24/7 migraine that none of her meds could touch. Desperate for help, she was told that a headache specialist could see her… in four months.

LaQuinda could not wait that long. She knew if she didn’t get help, in four months, she wouldn’t be alive. Instead she got a referral to see an out-of-network neurologist. But something major had to change. In March of 2018, she took short-term disability leave, wanting to really learn the ins and outs of chronic migraine disease.

“Before that moment, I was majorly relying on my doctor to handle my condition for me, because I was busy trying to work and pay bills,” she says.

“But then I couldn’t work anymore and everything changed. I had to take the reins over my health. I was used to the doctors just saying to do this and do that, but I wanted to know, ‘Why? How is it going to help me?’ I wanted more answers.”

Finding (and affording) the migraine “bubble”

LaQuinda added many components to her wellness routine, including massage, yoga, acupuncture, essential oils, and a transcutaneous electrical nerve stimulation (TENS) machine. She gets fewer migraine attacks when she has good sleep hygiene and proper nutrition. But all these things cost money, and are rarely covered by insurance.

“Everything I was doing was helping, but I couldn’t afford it anymore. If I can just get myself back to that little bubble that I was in, it would be so amazing, but right now it’s not financially possible.”

RetreatMigraine and act therapy change everything

In 2019, LaQuinda finally had a chance to connect with other patients in person at RetreatMigraine, a conference specially designed for people living with migraine disease. She spoke about her migraine journey with Melissa Geraghty, PsyD, a presenter at the conference and an INvisible Project alum. She recommended a workbook about acceptance and commitment therapy (ACT). LaQuinda had always relied heavily on her faith in Christianity to get her through the hard times; she never felt like she got much help from formal therapy structures like cognitive behavioral therapy (CBT). But reading through the workbook, she discovered a completely new way of looking at her life.

“This whole time, I had been trying to not be in pain—from the time I woke up to the time I closed my eyes,” she explains.

“And [ACT] is like, ‘OK, what if you can’t get rid of the pain? What if this is something you’re going to have to live with forever? Are you still not going to do anything with your life, because you can’t live the life that you used to live?’”

Inspired by the advocacy she saw around her at RetreatMigraine, LaQuinda started getting involved. She’s interested in helping start a support group in Los Angeles through the U.S. Pain Foundation’s support group program, Pain Connection. She also plans to launch a blog soon that will enable her to reach out to others with chronic migraine disease: especially minorities, people of color, and those who may not be able to afford the treatments they deserve. The pain warriors she met at the retreat, and the fellowship she found there, made her realize that there was a way to commit to advocacy on her own terms.

“I really got motivated during RetreatMigraine, meeting all those amazing people who have what I have and are still able to do something,” she says.

“They made me realize, ‘Hey, you can do this. Just because you have migraine, and maybe it has taken some aspects of your life, doesn’t mean that they have to control everything. You can regain that power back.’” One activity at the retreat was a writing exercise that asked what you would want someone who saw your self-portrait to say. Her response: “She lived in spite of.”

Shifting focus

LaQuinda recently found a new headache specialist at the University of California-Los Angeles (UCLA). She is hopeful as she begins new treatments such as nerve blocks and a calcitonin gene-related peptide (CGRP) inhibitor for prevention of migraine attacks. Her new provider diagnosed LaQuinda with vestibular migraine, which explains her frequent bouts of being dizzy and nauseous.

LaQuinda’s specialist is also able to provide her with the documentation and records she needs in order to appeal a denial of continuation of Social Security Disability Insurance benefits (SSDI). For certain conditions, such as migraine and headache diseases, SSDI has the right to reevaluate an individual’s case and can terminate payment. Having a knowledgeable physician who supports a patient’s need for long-term benefits is incredibly important. While LaQuinda wishes she didn’t need SSDI benefits, she’s coming to terms with the fact that she may not make it back to a full-time job.

“I was struggling with that a lot: If I can’t be a nurse, what am I doing?” she explains. “But I have to accept this is where I’m at right now in my life. I’m in pain. But I have to figure out ways to manage and still have a productive life. And that’s been a huge mental shift, trying to reorient.”

LaQuinda has started giving talks to businesses in her area about her migraine journey, trying to educate employees about chronic migraine and offer advice on how employers can minimize triggers in the workplace. She finds these experiences extremely fulfilling and would love to continue being able to open people’s eyes that way.

She’s doing her best to practice gratitude, helped by a five-minute journal she writes in first thing every morning. “It really shifted my mindset from focusing on what’s not happening to focusing on what I already have, and on what’s coming,” she says.

“You hear people say how big a difference your viewpoint can make and you go, ‘Yeah, sure, whatever.’ But when you really go through it, it makes sense. You have to make the choice to shift off that negativity. Once you’ve had enough of feeling like crap, at some point, you’ve got to come up.”

— by Janet Jay

RESOURCES

Miles for Migraine: milesformigraine.org
Migraine Again: migraineagain.com
The Mighty: themighty.com
Move Against Migraine: bit.ly/moveagainstmigraine
RetreatMigraine: headachemigraine.org/retreatmigraine