Connecting and coping through art.
If you have frequent or chronic migraine attacks, not being able to remember exactly when your last attack was sounds like an impossible dream. For Lisa Benson, 36, that dream came true. While she’s not migraine-free, Lisa is grateful for how active and present she has been able to be in her life now compared to when she had chronic migraine.
In the time since her migraine attacks reverted from chronic to episodic, about six years ago, Lisa has become a mother, launched her career as a sculptor and writer, and raised up her voice as a patient advocate.
From episodic to chronic to episodic
Although she began having migraine attacks in elementary school, Lisa wasn’t diagnosed with migraine until she was 27.
“It took a new primary care doc, who asked me a lot of questions, to help me become truly aware enough of what I was experiencing and get the diagnosis,” she says.
Only a few weeks after she learned she had migraine, she awoke on the morning of December 25, 2011, with a migraine attack that lasted for an excruciating week. That attack pushed her over the edge from episodic to chronic migraine.
She tried several preventives and eventually found success with botulinum toxin A and gabapentin, an anti-seizure drug, which reduced her attacks to two per month. When she and her husband, Paul, decided to start a family, Lisa consulted with her headache specialist. Since her attacks had been well-controlled for about three years, she and her specialist decided it was advisable for her to stop taking her migraine preventives.
Lisa’s migraine attacks returned with vengeance during the first trimester of her pregnancy. The frequency bordered on chronic migraine and the only medication she was able to take was a triptan, which had never been particularly effective for her. Fortunately, she was migraine-free during the rest of her pregnancy. But the attacks returned postpartum and increased substantially when she started to wean her daughter, Olivia.
The day after Olivia was fully weaned, Lisa visited her headache specialist. She was prescribed a calcitonin gene-related peptide receptor (CGRP) inhibitor, which she began taking in the summer of 2019. Now, Lisa is back down to an average of two migraine attacks a month.
Shining a light on migraine
One constant, whether her attacks were chronic or episodic, is that Lisa has sought to educate herself about migraine. She is naturally driven by curiosity and becomes frustrated if she doesn’t know all the facts.
“It’s like migraine was a dark room—no pun intended—and I was able to just shine a light in that room and really start to see what it was,” Lisa says.
Shining light on migraine helped Lisa learn to advocate for herself. “I can’t cure my own disease, but I can certainly make as many moves as possible to educate myself and work with doctors to feel better,” she says. “I think knowing enough to ask the right questions is a sweet spot for patients because you don’t need to answer the question. That’s really the doctor’s job. But I need to know how to tell them what’s going on in a way that will make sense to them, and get me what I need.”
At one point she participated in a clinical trial for photophobia. “It was both fascinating and slightly disappointing,” she remembers. “I think the researchers were doing everything well to test what they wanted to test, but there was so much I wanted to tell them, or convey to them, and of course there wasn’t a place for that. It feels like research is 500 steps behind the patient experience.”
Connecting with and advocating for others
From learning about migraine and advocating for herself, Lisa has become an advocate for others. When her migraine attacks were still chronic, she felt very isolated.
“Migraine caused me to miss special events, holidays, classes—there was one lecture in grad school I am forever sad I missed—and time with family,” she says.
Lisa knew other people had migraine, but she didn’t know anyone who had them every day, like she did. A need to connect with others led her to Chronic Migraine Awareness, Inc., an online community that supports people with chronic migraine. There she made friends for life, even serving as a bridesmaid for one of them. She got a taste for helping others manage life with migraine and eventually became a patient advocate for Migraine.com.
As important as migraine communities have been for Lisa, she still advises, “When you feel up to it, go out, forget about migraine, and do something that makes you feel like ‘you.’”
Even when she was chronic, she tried to remind herself that there’s much more to her than migraine, which she fully admits is hard when “basically your whole life is one big migraine attack.” Now even though migraine isn’t demanding her attention every day, she is still involved in the migraine community, while also embracing the full richness of who she is beyond migraine.
Applying the lessons of migraine to parenting
Lisa and Paul welcomed Olivia into the world in 2018. Although Lisa struggled with higher frequency migraine attacks during the first year of Olivia’s life, she doesn’t think they had much impact on her daughter. She describes Olivia as an empathetic and resilient little girl who was happy to play quietly while she and her mom both lay on the floor, completely unaware that her mom was in the midst of an attack.
Lisa credits having chronic migraine with giving her skills that make her a better mom, like flexibility and empathy. She likens the unpredictability of life with a young child to the unpredictability of migraine. Now that she’s a parent, she’s able to be more at ease when plans don’t go as anticipated. She also says having migraine taught her to be more empathetic when someone is sick and be more attuned to when her daughter is feeling ill, which was particularly helpful before Olivia could communicate.
Although migraine does sometimes interfere with her time with Olivia, Lisa takes a philosophical view rather than becoming steeped in guilt.
“What I’ve learned so far as a parent is that no one is designed to grow up in a perfect world,” she says.
“If it’s not one thing that affects your kids some way, it’s another. There will be things they’re unhappy about, as that is life. What I feel is important is to honor their feelings and also not take it personally.”
Coping through creativity
Lisa’s career as a sculptor and writer is more than a job for her. “Creativity and art help me manage life,” she says. Going from being a healthy 27-year-old graduate student to being disabled by unrelenting migraine attacks was a psychological shock. Beyond treating the physical body, Lisa says, there “is a whole other level of healing that has to be done… and for me, a lot of it has come through my own art.” She wrote a lot of poetry when she had chronic migraine, which helped her process the loss and grief she felt.
Building a better world for people with migraine
It’s not uncommon for people to leave migraine advocacy when they go from chronic to episodic. Lisa instead continued to use her voice as an advocate, “because I faced so many common problems in my own journey, including lack of diagnosis leading to chronification, the feeling of isolation brought on by pain and symptoms, lack of adequate options for timely and effective treatment, health insurance barriers, and more.
“I learned some tricks to face many of these problems and I continue to advocate so that they may improve for all of us in the future,” she continues. “Even though I do not deal with migraine attacks on a daily basis, I still live with the disease on a daily basis, and I see many others who live in the dark, isolated and needing better options. I hope for a better world for all of us.”
Lisa not only hopes for that better world for everyone with migraine—she fights for it.
— by Kerrie Smyres
Chronic Migraine Awareness, Inc: bit.ly/cmaware
Migraine World Summit: migraineworldsummit.com
Migraine Guy podcast: bit.ly/themigraineguy
Uninvisible podcast: uninvisiblepod.com