A Mother’s Quest to Lessen the Impact of Migraine
First-time parents often muse over which of their features they might pass down to their child: Will she have dad’s dimples, or mom’s laugh? But most parents don’t worry that chronic intractable migraine might be one of those features.
It hadn’t occurred to Eileen Brewer that she might pass her condition down to her daughter, even though the 45-year-old Columbia, Maryland, resident has lived with headache-related pain most of her life. “The reason I thought I had headaches was because I had spinal meningitis when I was 5,” she says. “I was in a coma for a week, and afterward I had to do physical therapy to learn to move my eyes independently of my head again.” Although her brain scans looked okay, Eileen was plagued by persistent head pain and related symptoms. She was finally diagnosed with chronic migraine at age 15.
Eileen says there were early signs that her daughter suffered from headaches. “Sammie cried eight hours a day for the first nine months of her life,” Eileen recalls. “And before she was able to talk, she would bang her head into the floor.” As first-time parents, and ones who had waited 10 years to have a baby, Eileen and her husband Dan, 45, listened to the pediatrician who kept telling them it was normal.
Babies who have infantile colic have a higher probability of having migraine than babies that don’t have colic, according to research by Amy Gelfand, MD, a board-certified child neurologist and Director of Pediatric Headache at University of California San Francisco.
It was Sammie’s preschool teacher who first suggested that the toddler might be experiencing migraine, having known about Eileen’s issues with them. The teacher had noticed that Sammie complained whenever they went outside on warm days and the sunlight reflected off the bright white concrete on the playground.
Eileen took Sammie to a doctor who confirmed Sammie also had migraine. Her daughter’s diagnosis revealed to Eileen that her own migraine attacks were likely hereditary as well. “When I was growing up, we didn’t know a lot about migraine, so we thought my mother just had dizzy spells,” she says, “Sammie seems like a pretty good indicator that it is genetic.”
While migraine isn’t commonly diagnosed in children as young as Sammie, it’s not because they aren’t having migraine attacks. According to the American Migraine Foundation, about 8% of children have migraine disease. As puberty hits, girls often see an increase in frequency and severity of migraine attacks. However, the occurrence of migraine attacks in males tend to decrease during and after puberty.
Migraine often goes misdiagnosed, as it was in Eileen’s case. “I don’t know what I would think about Sammie if I didn’t have a history of migraine myself,” she says.
From sumatriptan to high-salt diets
Eileen knew that getting a proper diagnosis for Sammie was just the beginning. Eileen’s life had been significantly impacted by her constantly throbbing head. There isn’t a day she can recall not having a migraine, and her symptoms vary. “My head always hurts,” she says, “but there are days when things are worse and I get dizzy and nauseous and can’t see well.” She estimates that she has between 10-15 really debilitating days a month. “Sometimes I get Alice in Wonderland syndrome,” Eileen says, referring to a rare neuropsychological condition that can be associated with migraine, in which objects appear distorted, “and that can be weird.”
She’s had to give up jobs, certain triggering foods like onions, and the rest of her day any time the barometric pressure drops suddenly, all because of her illness. When Sammie was diagnosed with migraine, Eileen says, “I was pretty sad, and I’m still pretty sad and pretty guilty about giving her this,” she says. “I’m really hopeful that this isn’t her future.”
But finding an effective treatment isn’t easy, as Eileen knows first-hand. She has seen dozens of specialists and been prescribed more than 70 different medications. Only one combination of medications ever seemed to work, but even that stopped after six months or so. Most other therapies aren’t covered by her insurance and are prohibitively expensive to pay for out of pocket. Eileen also understands the importance of complementary alternative medicine and can rattle off all the alternative therapies she’s tried: “Biofeedback, different diets, acupuncture, acupressure, yoga,” she says. “If someone offers it to me, I’ll give it a shot. Why not?”
Finding a specialist whose practice is dedicated to treating pediatric headaches has been challenging. The first specialist Eileen approached wanted Sammie to follow something called the Stanton Migraine Protocol, a diet that includes 5,000 milligrams of salt a day, and put her daughter on blood pressure medication to deal with the side effects of all that salt. “My mom did not think that was a good idea,” Sammie, now 9, says. “My daughter was 6 at the time,” Eileen says. “Her pediatrician was pretty horrified by that recommendation as well.”
Inheriting migraine disease – and determination
Everyone in the Brewer family loves video games, but there are times when Eileen and Sammie have to walk away.
“When I get headaches sometimes I don’t want to look at screens at all,” Sammie says, which can make virtual learning tough. The third grader occasionally needs to lie down during a regular school day, which isn’t unusual: kids with migraine are absent from school twice as often as those without them, according to HealthChildren.org.
“My friends do understand it,” says Sammie. “At least my best friend.” But not everyone else always does—including medical professionals. “My daughter has been to the ER twice for migraine, and both times only received barely adequate care,” Eileen says. Part of the blame, she believes, is due to what she calls “a tremendous amount of stigma around migraine.”
Migraine stigma affects care
“People have co-opted the word “headache” to mean any minor annoyance. When you say ‘My head hurts,’ they offer you some over-the-counter painkiller and tell you to lie down for 20 minutes and expect you’ll be able to restart your day. There is very little understanding that migraine isn’t just a headache, and it’s exacerbated by the fact that migraine is considered a woman’s disease. It’s been well-documented that women are treated less for pain or told they can handle it better.
Hoping to destigmatize the disease led Eileen to get more involved in the headache community, starting with Clusterbusters. Though Eileen does not live with cluster herself, she has contributed significantly to raising the cluster patient voice and providing support to those who do. Since 2014, she has chaired the organization’s conferences and currently serves as president.
Then, in 2019, she joined forces with CHAMP (the Coalition for Headache and Migraine Patients) and organized the first RetreatMigraine conference, which had more than 200 attendees in its inaugural year. The conference went virtual in 2020 but Eileen is planning to hold a hybrid (live and virtual) event in October 2021. “Definitely the silver lining of this whole scenario is that most of my closest friends are people living with migraine,” she says.
Eileen continues to look for solutions for herself and her daughter, particularly as Sammie approaches adolescence, a time when migraine tends to increase for girls. And of all the things she has passed on to her daughter, her attitude may be the most important.
“There are days I’m furious that I never get to get out of bed and not be in pain, and I’m so jealous of people who can,” Eileen says. “But it’s not like there’s an Olympics of pain and suffering. We all have stuff we’re dealing with. A lot of people have a lot of things in their life that are difficult.”
“There are more days than not where I can fight through it and be okay, and I’m very lucky for that,” she says. “Sometimes even when things are really bad and I’d like to be lying down, I push through anyway.” She’s had days where she carries a bucket with her in case a wave of nausea hits. “Even if it’s really hard, I’d rather be doing something than wishing I had a life,” she says.
Sammie, it seems, has embraced her mother’s attitude. “I’ve seen my daughter compete in a swim meet with a terrible migraine,” Eileen says. “I watched her throw up, and then jump in the water and swim. We both really try hard to be a part of life. It’s mostly about just trying.”