Fifteen-year-old Rebecca has been living with severe, debilitating migraines for the majority of her teenage years. It wasn’t until her family sought care at Lurie Children’s Pediatric Headache Program that she finally experienced some relief. Rebecca benefited from a burgeoning practice of headache procedures done at Lurie Children’s, specifically the sphenopalatine ganglion (SPG) block, but before those solutions were offered, it was a long road of discouraging trial and error, social and physical sacrifice, and fear of an unknown future.
Rebecca says the migraines became the most frequent and painful three years ago, where it felt like her head was “inside of a clamp that was tightened as far is it could possibly go.”
“I missed out on most of 7th grade and all of 8th grade,” she says. “I physically couldn’t attend school anymore. I was unable to leave my house, see friends or socialize with my family. I also lost my ability to read, and I couldn’t even do the smallest physical activities without causing more pain. I could barely sleep at night.”
Her extreme experience inevitably weighed on her parents who felt an overwhelming sense of helplessness. Mom, Marie, says it was difficult seeing her daughter in such pain daily and not being able to participate in normal, everyday activities.
Before the migraines became completely unmanageable, Rebecca’s remedies included alternating between ibuprofen and acetaminophen, staying in bed, eliminating all physical activity, and blocking out any sources of light and sound – but she knew these were temporary fixes. In the more severe moments, Rebecca made several trips to her local Emergency Room. Unfortunately, things seemed to get worse before they got better.
“Some of the medications I was prescribed actually seemed to worsen my daily migraines,” she said. “I soon found out that I was allergic to them.”
After exhausting many resources, the Robisons made the decision to seek expert advice and support at the Lurie Children’s Headache Program.
“Lurie Children’s is well known for their excellent care,” said Marie. “I wanted to take her to a hospital where the staff was accustomed to seeing children with severe conditions.”
The Robisons live out of state, so travelling to Chicago was a trip for them, but one they were confident making for the best possible care.
So began a collaborative and individualized approach to finding a treatment care regimen for Rebecca. Chronic migraine and pain management is often complex and multi-factorial, requiring collaboration from different specialties. The severity and duration of Rebecca’s migraines, as well as other chronic pains, had taken a toll on her body over the years, so she sees a multi-disciplinary care team that includes healthcare providers from a variety of specialities in addition to Neurology. Thankfully for her chronic migraine management, her expert team was able to offer her much-needed relief with a combination of headache procedures called SPG blocks, lifestyle changes and medication.
“The sphenopalatine ganglion block is a non-invasive, in-clinic procedure aimed at numbing a collection of nerves in the back of the nose/throat area that is implicated in causing migraines,” said Anisa Kelley, MD, Attending Physician, Neurology; Associate Director, Pediatric Headache Program at Lurie Children’s. “During an SPG block, a small flexible catheter is inserted into the nose, and lidocaine—a numbing solution—is sprayed into the back of the nose and throat. Rebecca playfully refers to it as the ‘brain freeze’ procedure. When the procedure is successful, it can provide significant headache and migraine relief for up to a few months. Additionally, Rebecca benefited from what we call headache lifestyle counseling – trying to identify changes in your daily habits or diet that could be impacting your headaches. For Rebecca in particular, we were able to identify that certain foods, such as nitrates (a preservative in many meat products) and monosodium glutamate (a preservative in foods such as chips) were impacting her headache. Avoiding these foods also contributed to the headache relief she experienced," Kelley said.
Thankfully for Rebecca, Dr. Kelley and team not only made her migraines more manageable but returned her independence and teenage experience back to her while rekindling her joy for life.
“The care I’ve received at Lurie Children’s has greatly enhanced my quality of life,” said Rebecca. “The first thing I noticed was that my vision returned back to normal, which allowed me to read books and look at electronic screens again. I also regained complete control over my limbs, and slowly became more physically active.”
Nearly every aspect of Rebecca’s life has been impacted by the success she’s had in the Headache Program. Not only can she spend care-free time with her friends in public without fear of a medical emergency, she’s thriving as a freshman in high school, an involved volunteer in her community, and loves doing swim and horseback riding once again. With her renewed ability to study and participate in school, Rebecca is proud of her huge achievement, going from “F’s” to straight “A’s.”
For other families with children experiencing migraines, Marie encourages them to not give up, and to continue seeking help even when it seems like they've explored every avenue.
“I’d like to give Dr. Kelley a special thank you,” said Rebecca. “You will never know how much your care has changed my life.”
About Headaches & Migraines
June is National Migraine and Headache Awareness Month and almost 60% of children will complain about a headache at some point in their lives. Migraines are a particularly burdensome headache disorder, affecting about 8% of children and up to 15% of adolescents.
A headache is defined as “pain or discomfort in the head or face area” and most of us have had at least one in our lives. There are different types of headaches and migraines that are characterized by different symptoms.
While most headaches are not cause for concern, it’s important for parents to monitor symptoms for headaches experienced by their children. In a new survey of over 1,000 parents, 86% of parents report that their children have complained about a headache.
About Lurie Children’s Pediatric Headache Program
Pediatric headache and migraine can be quite debilitating, requiring a comprehensive and patient-based approach to treatment. Our Pediatric Headache Program team takes time to consider each individual patient and the possible contributing factors to their headache. We have an integrative approach to treatment including headache lifestyle counseling, herbal supplements and evidence-based medications in an individualized treatment plan. We are involved in cutting-edge clinical research trials for new pediatric migraine treatments.
For the patients that qualify, we offer a headache procedure clinic. These procedures include supraorbital nerve blocks, occipital nerve blocks, sphenopalatine ganglion blocks and trigger point injections. In the future we plan to implement botox injections for our adolescent patients with intractable migraine. Learn more.