Throughout her high school years, Merritt Artim struggled with feeling tired. By her junior year at East Surry High School, the Westfield resident now notes that she would go throughout her day feeling in need of rest, regardless of how much she had slept.
Adding to her frustration and prompting Artim and her family to begin a search for answers was her inability to understand this constant weariness and lack of energy. It was that search that led to her to a sleep specialist who diagnosed her with narcolepsy, a neurological sleep disorder, shortly after she had finished her junior year of high school.
“Since my freshman year,” Artim recalls, “I had always been really tired. And I wouldn’t always realize how tired I was. I’d lie down to take a short nap but would end up sleeping through my alarm and wake up three to four hours later.”
“She would go to sleep in the middle of doing something like watching TV or doing her homework,” explained Artim’s mother, Tracie Artim. “It got to the point where she would go to sleep in the middle of a conversation or in mid-sentence. When she went to sleep, she could immediately start having nightmares and we’d have trouble waking her up.”
Merritt Artim remembers regularly waking up feeling tired and she would go through her day feeling in need of rest. At times, even if in a class or watching an interesting movie, she would be overcome with the need to sleep. If she tried to continue without sleep, she explains, she could go into a state of “microsleep” in which she might appear to be awake but wouldn’t be fully aware of her surroundings.
A particularly frightening incident which expedited the family’s search for answers occurred early during Merritt’s junior year of high school. The family had gone shopping and was in a Greensboro store when Merritt began to be overcome by sleepiness. She excused herself to go to the family car for a nap. Later the family found her in the car, parked in a busy section of town, where she was asleep but with the door to the vehicle still open.
In addition to excessive daytime sleepiness (EDS), other symptoms of Narcolepsy can include hallucinations, sleep paralysis, disrupted nighttime sleep and cataplexy. In sleep paralysis, persons experience a brief, temporary period of being unable to move or speak while falling asleep or waking up.
While not all individuals with Narcolepsy experience cataplexy, when the symptom does occur it is associated with the disorder. Artim has consistently dealt with the symptom and it was one of the things that helped lead to her diagnosis.
Cataplexy is described as an episode of muscular weakness brought on by strong emotions such as laughter, anger or surprise. For Merritt, the symptom is most often brought on by an outburst of laughter. At first, without knowing why, she would be laughing with family or friends and experience a buckling of the knees, collapsing to the ground or floor. She would lay there, fully aware but unable to respond, for periods ranging from seconds to several minutes.
Narcolepsy has also presented a challenge for Artim as she has transitioned to college life. She had planned to take SAT and ACT testing but had trouble working out the special accommodations necessary because of the long testing periods. She has temporarily postponed her goal of attending Appalachian State University with an eye on eventually becoming a wildlife biologist. She is attending Surry Community College, where she plans to earn an associate’s degree in science before transferring to Appalachian State.
While she has found some answers in her diagnosis, Artim still has questions about the disorder’s symptoms and effects on her life.
“It was good to know what I had,” she notes, “but there was so much I had to find out about and so much still to be learned. There are different kinds and different symptoms.”
“Narcolepsy is called an invisible disorder,” Tracie Artim explained. “People who have it are often called lazy or others think they’re just not getting enough sleep. People who get sleepy think they can relate to this. But this is something that doesn’t go away and, with it, you never feel rested. It can be treated but it can’t be cured, not yet.”
“Initially after the diagnosis,” Merritt added, “I would take medications which would work for me. But eventually I would crash and it would hit me so hard. And the scary part was that I could go into microsleep and not be able to remember anything.”
Tracie Artim’s search for information prompted her to start a local support group, The Foothills Narcolepsy Network, in April of this year. With Merritt Artim serving as co-founder, the group started with one other member. It has now grown to 20 members, some of which are active primarily through a Facebook page, and continues to grow as others learn of its existence.
According to the Narcolepsy Network, which strongly promotes and supports the effort, the support group is one of only 13 in the nation with North Carolina being the only state to host two groups.
The group meets on the second Thursday of each month, beginning at 7 pm at the YVEDDI Family Resource Center at 215 Jones School Road in Mount Airy. Email for the group is firstname.lastname@example.org while the Facebook page can be found by searching Foothills Narcolepsy Support Group. The group also has a web site at www.foothillsnarcolepsy.blogspot.com.
It was the family’s continuing search for information that led them to attend the 31st annual Narcolepsy Network Conference, held Oct. 20-23 in Orlando, Florida. The conference was filled with those who suffered from the disorder and their supporters, both friends and family. Numerous sessions featured information on topics such as beneficial lifestyle and diet changes, dealing with college and the potential use of service dogs.
“There was so much that could be learned,” Tracie Artim noted. “It was an eye-opening experience.”
A major realization for Merritt was how so many others shared the challenges she faced every day. Throughout the conference, attendees would frequently need to break for a nap in order to maintain the needed energy and concentration for sessions. The Narcolepsy Network estimates that over 200,000 persons in the United States have the disorder but only about 25% have been diagnosed.
“Before,” Merritt Artim explained, “I thought I was weird. But I met others like me and I found out maybe I wasn’t so different. It was wonderful.”
The conference also led the Artims to begin research into the acquisition of a service dog for Merritt. The highly trained animal would help to monitor Merritt’s actions, letting her know when she is showing a heightened need for rest. The dog would also provide protection by covering her body during the times when she might experience a cataplexy episode.
At the conference, Merritt was honored with selection as one of 19 Youth Ambassadors for the program.
“As an ambassador,” she explained, “I’ll learn more about Narcolepsy in order to teach others to recognize and cope with the disorder.”
She will also continue to work with her mother through the support group and work with local emergency services to continue to “spread the word.” She has already begun an effort to help emergency services personnel recognize the best ways to deal with Narcolepsy symptoms such as cataplexy.
“When we started our support group,” Tracie Artim said, “it was for Merritt and I to have the support we needed. Now, I also realize the need to actively create more public awareness of Narcolepsy and its symptoms.”
“I would like for people to understand,” she continued, ”that Narcolepsy is a neurological disorder that has nothing to do with being lazy or being rebellious, and it can’t be cured by trying harder, getting more sleep or drinking caffeine.”