Since age 12, Maddie has suffered from chronic migraine.
“Every day for the past six years, I’ve woken up with a low-level, baseline headache, and then I get migraines on top of that pain,” she says.
Maddie’s migraines are severe and disabling. They can last for hours or even days, and can include nausea, sensitivity to light and sound, and dizziness. But the effects of chronic migraine go beyond headache, say Maddie’s parents, Julia and John.
“It’s a full constellation of symptoms,” says Julia. “Pain in other parts of the body, GI distress, quick dehydration, vulnerability to concussions, and more.”
Maddie first started having headaches in sixth grade. Shortly after that began, she suffered her first concussion during a soccer game. It was a mild concussion, so it took a while for her parents to recognize it.
Once they did, they made the short drive from their home in Mount Airy, a neighborhood in the Northwest part of Philadelphia, to Children’s Hospital of Philadelphia (CHOP). There, Maddie was evaluated by sports medicine pediatrician Matthew Grady, MD, who prescribed a special concussion protocol that included rest and a slow return to activity. After a few weeks, Maddie was cleared to get back to full participation in school and sports.
But the headaches continued, and more concussions followed. She’s suffered at least six concussions in her life. The ones she got during organized sports — like basketball and field hockey — were immediately noticeable. But others weren’t obvious because they occurred during incidents that wouldn’t seem to cause a concussion. With each concussion, it took longer for Maddie to recover, and she would need more intensive care, including aerobic, vestibular and vision therapies.
“My friends would get a concussion and be back to sports after a few weeks,” says Maddie. “For me, it would be months or a year recovery.”
Neurologists in Bryn Mawr
Meanwhile, Maddie’s head pain and other migraine symptoms were increasing, so Dr. Grady referred her for an evaluation with CHOP’s Division of Neurology. Maddie was diagnosed with chronic migraine and referred to Pediatric Neurologist and headache expert Madeline Chadehumbe, MD, in CHOP’s Pediatric Headache Program. Concussion specialist Christina Master, MD, Director of CHOP’s Minds Matter Concussion Program, the leading concussion care center in the region, was later looped into Maddie’s care in an effort to understand the link between her headaches and concussions.
Providing Migraine Support and Coping Strategies
Dr. Chadehumbe and the comprehensive Headache Program team, including its social worker and pain psychologist, have worked with Maddie and her parents to find the best treatments and strategies to manage her migraine disease and minimize pain and disruption to her learning and life. Maddie and her parents say the level of communication and comprehensive care they’ve experienced at CHOP has been unparalleled, and they are grateful to Dr. Chadehumbe and the CHOP team for tirelessly, supportively and painstakingly working to help Maddie.
Shortly after Maddie was diagnosed, the family attended CHOP’s Miles for Migraine Youth Camp, an all-day event that provides families with medical, school and other information, fosters a supportive and hopeful community, and helps kids and families learn to live with their diagnosis and self-advocate. This regular event has had a lasting effect on them, and they’ve been active participants and supporters ever since. At subsequent camps, Maddie’s parents have spoken and led workshops and Maddie has spoken repeatedly in an effort to help newly diagnosed patients and their families.
““When you are first diagnosed with this disease, it’s really scary. It affects your world in every way. And being in pain can be isolating,” says Maddie, noting that migraine is often referred to as an ‘invisible’ illness or disability because — though debilitating — the pain and disability are invisible to others.
“Within Miles for Migraine, I was able to find a group of peers who understand the whole picture. Hearing from others who have been through it is so helpful.”
Learning to Use Her Spoons Wisely
Having a chronic condition has given Maddie a different perspective on life than her peers. She’s had to give up doing things she loves — organized sports, for example — and come to terms with her limitations.
“When you have a chronic illness, you only have a certain amount of energy each day, because a lot of your energy is taken up by pain,” Maddie says.
John says the “spoon theory” explains this concept best. In the spoon theory, a person’s energy for the day is represented by spoons. While most people Maddie’s age have an unlimited number of spoons (i.e., unlimited energy), Maddie and others with chronic illness start each day with a limited number of spoons. For each task they do, they lose a spoon. If Maddie runs out of spoons before day’s end, she crashes and can’t function the next day. If she decides to go to an amusement park with her friends, she knows it will take her a day or two to recover.
“It’s such a contrast to how most young people live their lives,” says John. “Most young people burn the candle at both ends. Maddie can’t do that. She has to plan ahead. But sometimes having fun and being a kid take precedence. She rarely gets to let loose and have a good time, but it’s well worth it.”
Honing in on Migraine Triggers and Effective Treatments
Maddie’s migraines never responded well to standard treatment options. A few times a year, she would have a spike in migraine pain that was so unbearably intense and last so long that she had to go to CHOP’s Emergency Department to receive hospital-grade pain medication.
Fortunately, now that she’s 18, she is able to take monthly doses of an adult migraine medication recently approved by the FDA — called a calcitonin gene-related peptide (CGRP)inhibitor. Thankfully, the frequency and intensity of her migraines has decreased.
For a long time, it was unclear exactly what triggered Maddie’s migraines. Then, during a three-week trip to Costa Rica during her junior year of high school, Maddie experienced relief from headaches for the first time in years. She thought it was because she was away from her normal, busy routine. But when she returned home and recounted the experience during a Headache Clinic appointment, Dr. Chadehumbe reminded her that variations in atmospheric pressure are a common migraine trigger. Dr. Chadehumbe explained that the closer you are to the equator, the less variation there is in atmospheric pressure, and the further away you are, the worse it is.
Discovering this trigger empowered Maddie. She found a world map of barometric pressure variation online and used it to guide her college search. After taking a gap year, Maddie plans to attend Scripps College in California, which tends to be a good place for migraine sufferers due to its steady barometric pressure. Maddie’s personal experiences with chronic migraine and her awareness of the need for better treatments have her leaning toward a major in neurology, but she also has a passion for music. Composing songs on the piano helps her cope with and find beauty in times of struggle.
“Knowing I can be emotionally happy and have great experiences while I’m in pain has been an empowering thing to learn,” says Maddie. “When I have bad pain days, being able to find joy despite that makes it better.”