A story of survival.
Rebecca Brook’s journey with migraine started at 6 years old, during a visit to a nursing home with her Girl Scout troop. She remembers feeling fine until the harsh smells of the home started to trigger an attack—first the onset of pain, and then nausea. On the way home, sitting in the back of the station wagon, Rebecca vomited. She recalls feeling embarrassed, out of control, and like she was so different from everyone else. Life was never the same.
“I was fine, and then, all of a sudden, I wasn’t,” says Rebecca, now 48.
A diagnosis, then a struggle
At 14, Rebecca experienced her first aura, and was finally diagnosed with migraine disease. Rebecca remained episodic until she was 19 and a sophomore at the University of California-Berkeley, when one day she got a migraine that did not go away.
Thanks to connections through her father, a physician, Rebecca received a diagnosis of chronic migraine quickly. But though she was being treated by one of the top neurologists in the world, he was condescending, and she didn’t feel heard.
“I was scared—and not unintelligent—and wanted a physician who listened to me and answered my questions,” she says.
This neurologist prescribed a combination medication of butalbital, aspirin, and caffeine with codeine (an opiate), and told her she could take it every day without any adverse effects. Rebecca soon developed rebound headaches and became physically dependent on her pills. She remembers taking her organic chemistry final with her face pressed against the lab room floor, while on 12 pills.
“Somehow I still scored an A—the power of people with migraine!” she says.
Rebecca realized using opioids was not the right option for her. During winter break she took herself off the medication and spent three weeks going through painful withdrawal.
“Migraine saved my life”
Rebecca’s mother was worried about her escalating symptoms and requested an MRI. But the neurologist dismissed her concerns, saying Rebecca “just had a headache.” Her mother persisted and pushed for the MRI, which revealed Rebecca had a brain tumor. She underwent brain surgery on January 6, 1992.
Based on her diagnosis, Rebecca wasn’t expected to live more than five years after her surgery. She remembers the neuro-oncologists at University of California-San Francisco Health (UCSF) saying they had never seen a patient like her. She reflects on the fact that her mom would not have fought for the MRI if Rebecca hadn’t had chronic migraine. “Migraine saved my life.”
The reality of daily migraine
Though she’s grateful for her new lease on life, Rebecca still must cope with daily headaches, which last from three hours to three days. When asked to explain migraine disease to others, Rebecca describes it as feeling like “a hoard of mass murderers with pick axes have taken over your brain and are painfully destroying every cell, neuron, feeling, sensation, memory, and experience while you watch helplessly tied up and gagged in the corner.”
This is something she wishes the general public understood: that having a headache feels like you are trapped in the pain going on in your head, yet you look completely normal on the outside.
Throughout her migraine journey, Rebecca has been on many medications that have failed her. There’s the extremely long list of preventives she’s tried, and the struggle when she was physically dependent on opioids. There were two multi-week hospital stays that included intravenous dihydroergotamine (DHE), an ergot alkaloid treatment. During these times, Rebecca had to depend on others, whether it was moving back in with family or relying on neighbors to pick up prescriptions and take out her trash.
Coming out of the darkness
Life was dark and isolating for Rebecca. But in 2010, she began seeing a new doctor, a headache specialist at UCSF. After 20 years of frustrating experiences with doctors, she finally found one who listened to her, and even through the pain, that made a difference.
“I think, just as important as the drug advances are, so are the changes in the way that headache specialists have started relating to patients,” she says.
“This doctor understood the agony of not being able to access my brain potential. He understood how devastating that was and he wanted to do something about it.”
The UCSF specialist was aware of some promising drugs on the horizon, known as calcitonin gene-related peptide (CGRP) inhibitors, and he told Rebecca he believed they were the future of migraine treatment.
While she waited for new options, Rebecca had a shift in mindset. “I realized I needed to play a more active role in my healing, and be more accountable for my treatment,” she says.
She switched therapists to one who practiced cognitive behavioral therapy (CBT) and began going to an integrative medical center, which offers acupuncture, nutrition counseling, and massage. That helped Rebecca learn how to holistically manage her migraine.
“When an illness becomes chronic, I believe it needs to be managed rather than treated, and it needs to be managed by looking at all aspects of your life,” she says.
That meant giving up her beloved Coke and other foods she realized weren’t doing her any good. Now having good sleep hygiene and regular CBT is mandatory. Botulinum toxin A, once her insurance finally approved it, also reduced the severity of attacks.
A CGRP inhibitor medication, approved in 2018 for the prevention of migraine, has been the real game-changer. While Rebecca is not a super-responder, the change she has seen since starting on one particular CGRP is dramatic. She has had more than five headache-free days in the last year and a half—the first time that’s happened since she was 18.
Before the CGRP, she was rarely out of the house for more than two hours. Now, she can leave her house for eight to 12 hours. She tries to remind herself of the good days on the days when she is still homebound. She has also forgotten her acute medication at home a few times, but she was fine.
This mental clarity and freedom from pain have allowed her access to the brain power she missed so dearly. She also started to shed the ever-present anxiety that haunts those with chronic migraine.
The journey onward
Rebecca is resourceful, bold, intelligent, passionate, and a survivor. She has survived migraine and a brain tumor, but much more than that, too.
There is debt from medical bills and having no income. Relationships with friends, family, and significant others have been strained or lost because of being sick, not being able to show up, or from saying inappropriate things while being on medication or in a tremendous amount of pain. Rebecca’s largest source of sadness is never having children.
But if you were to ask Rebecca what migraine has given her, she’d tell you it has given her a wicked, dark sense of humor. It has made her resourceful—like figuring out how to get health insurance, pay her bills, and getting herself halfway around the world to the International Headache Conference—all by herself.
In the past year, Rebecca has learned how to reach out to other people with migraine. She had an “a-ha!” moment where she realized,
“There is a world of strong, kick-ass wonder women who are doing good work in the world while having migraine.”
Best of all, Rebecca is going back to work as a nurse practitioner, a job she once had to give up because of her chronic migraine, which was devastating to someone like her, who is driven to serve. She also volunteers at a local animal shelter and makes fabulously creative Halloween costumes for her friends’ kids.
Rebecca is still in the process of learning not to be defined by the idea of success and achievements that she had when she was 18. Sheis realizing she contributes to this world by touching people honestly through sharing her experiences.
In the past, her shame overwhelmed her when thinking about how dark her journey has been, and by focusing on what she had lost. Living in shame prevented her from reaching out to others with migraine. But few can live this journey alone. Knowing that others are not just surviving, but also thriving despite their illness, gives Rebecca hope and inspiration.
Gratitude through pain
Rebecca recalls that in her darkest days, some friends told her she’d one day be grateful for migraine. At the time, that was frustrating—there wasn’t much room for gratitude in the fog of pain, medication, and fear. But now Rebecca has a different perspective.
Migraine has given her the gift of experiencing two contradictory feelings at once. She can be in excruciating agony, her face feeling like it’s going to melt off. Yet, she’ll see a full moon rise over the mountains in front of her and be awed by its beauty.
A spiritual teacher once told her, “It is only by experiencing the darkness that we can truly understand and feel the light.” She may have to wear her sunglasses to see that light, but its meaning is very true to her.
“I love being alive—which feels weird to say,” she muses. “But I don’t know if I would know that if I didn’t spend so much time in pain.”
—by Jaime Sanders
CHAMP (Coalition For Headache And Migraine Patients): headachemigraine.org
Migraine World Summit: migraineworldsummit.com