Days filled with pain, followed by restless nights, are more than nightmare scenarios for adolescents with chronic pain. Approximately half of all adolescents who suffer from chronic pain also have insomnia, a disorder characterized by difficulty falling asleep, staying asleep and experiencing poor quality sleep.
While there is ample research studying effective methods to treat adults who experience chronic pain and insomnia, there is very little as it pertains to adolescents. Seattle Children’s Research Institute is leading the way in changing this with an approach that focuses on empowering patients to improve their sleep to help treat their pain.
Dr. Tonya Palermo, an international expert in pediatric pain management at Seattle Children’s Research Institute, led a study recently published in the Journal of Clinical Sleep Medicine. The study showed four brief sessions of cognitive behavioral therapy for insomnia (CBT-I) led to sustained improvement in sleep quality, psychological symptoms, and quality of life for adolescents experiencing insomnia and a co-occurring physical or mental health condition such as chronic pain, anxiety or depression.
“This is the first intervention study that we have conducted to improve sleep in adolescents and measure the effects on pain and health outcomes,” Palermo said. “Our data shows that by reducing insomnia symptoms, teens experienced improvements in pain, physical and psychological functioning. This moves the field forward by establishing that modifying sleep may be a pathway to improve quality of life for youth who have chronic conditions.”
In the study, the patient and a parent caregiver met with a trained study therapist for a total of five hours over a four- to six-week period to learn about healthy sleep habits and strategies to train the body to fall asleep quickly at night, and to adjust sleep schedules. Based on findings from the CBT-I study, the researchers developed the Intervention for Sleep and Pain in Youth (I-SPY), which is designed for adolescents like Nicole Reeder who have co-occurring migraines and insomnia.
Migraines, sleepless nights put Nicole’s life on hold
Nicole’s world was turned upside down when she sustained her third concussion in 2015 at age 13. She fell into a perpetual pattern of migraines that kept her bed-ridden during the day. At night, she tossed and turned and had trouble falling asleep. Often, Nicole was getting only three to four hours of sleep per night, which seemed to make her migraines worse.
Pain medication helped some, but it wasn’t long before Nicole’s frequent smile disappeared. Her poor sleep left her with little energy during the day as her severe migraine symptoms continued, including constant pain and sensitivity to light and sound. Nicole’s family decided to pull her from school and continue her education with a home-health tutor.
“It was just so hard to stay awake and you can’t see the board right in school,” Nicole said. “It was a dyslexic feeling. Even reading and writing were hard.”
Nicole was able to stay on track academically with the tutor, but she had to stop participating in band, choir and gymnastics. It became difficult to see friends, watch movies or do much of anything.
Hope emerged at the Seattle Children’s Pain Medicine Clinic, where a coordinated treatment team helped Nicole manage her migraines to the point that she could return to school last September. It was also where Nicole and her mother, Susan Reeder, first learned of the I-SPY study, led by psychologist Dr. Emily Law and board-certified anesthesiologist Dr. See Wan Tham.
“It was a relief,” Susan Reeder said of enrolling in the I-SPY study. “There was a time where you could look or talk to Nicole and she couldn’t comprehend what you were saying. She was caught in a terrible cycle.”
I-SPY a path to quality sleep, life
Cognitive behavioral therapy is at the core of the CBT-I and I-SPY studies. It focuses on educating patients and their support systems on the causes of their conditions and what behaviors they can practice to cope, manage or overcome them.
“Insomnia is a common problem for children with chronic pain. Insomnia may develop because pain makes it hard to fall asleep at night, or because pain makes it hard to spend time out of bed during the day,” said Law, who was also a CBT-I study investigator and has extensive experience in headache treatment and pain management. “The good news is that sleep is a learned behavior. We can re-train the body to fall asleep quickly at night.”
Nicole’s re-training began with I-SPY sessions she attended with her mother. She kept a sleep diary where she tracked the time she got into bed, how long it took her to fall asleep and the time she got up in the morning. This played a crucial role in understanding her sleep patterns (how long she was sleeping) and efficiency (how much time she spent awake in bed). She learned strategies to help her fall asleep quickly at night.
Using data from her sleep diary, Nicole was taught how to temporarily shift her bedtime to later at night to reduce the time she spent awake in bed. She also created a nesting place in a different area of her house to go to when she couldn’t fall asleep. In the nesting place, she would do an extremely boring task—like counting by threes as high as she could—until she was sleepy, and then return to bed.
The sessions also focused on learning relaxation strategies for pain management and developing healthy sleep habits by limiting electronics use at night, practicing relaxing routines before bed, and instituting techniques that made waking up in the morning easier. According to her mother, Nicole had marked improvement in her sleep after three I-SPY sessions and, over time, her migraines have improved as well.
Five months later, the 15-year-old Liberty High School sophomore sleeps seven to eight hours each night and only takes an average of 20 minutes to fall asleep. Her migraines are less frequent and no longer interfere with her daily life.
“Quality sleep and relaxation techniques have helped Nicole function much better throughout the day,” Susan Reeder said.
Nicole is steadily integrating the activities that had been disrupted by migraines and insomnia back into her life. She is back in school, going to the movies, singing in her school choir, and has even taken up horseback riding with her mother.
“I have more energy and I smile a lot more now,” she said.