A Narrative on Narcolepsy | March 14 - 20, 2021
When my son was 8 years old, he started falling asleep during the day for no apparent reason. As far as we knew, he was getting plenty of rest at night, so it did not make sense that he was falling asleep during classes he loved, like art. He was inattentive in other classes, so his teacher thought that he needed to be tested for ADHD - he fell asleep during the ADHD testing! During a pediatrician appointment to discuss the possible ADHD diagnosis, his doctor thought that his symptoms sounded more like narcolepsy. All his bouncing and talking out of turn were coping mechanisms to try to stay awake! He had an overnight sleep test, followed by a daytime nap test (called a Multiple Sleep Latency Test or MSLT). The conclusion of those tests was narcolepsy.
Narcolepsy is a chronic neurological disorder that can begin at any age and continues throughout life. It is a sleep disorder involving irregular patterns in Rapid Eye Movement (REM) sleep and significant disruptions of the normal sleep/wake cycle. Onset typically occurs in pre-teens/teens or the early twenties, but can also happen later in life. Narcolepsy is believed to affect approximately 1 in 2,000 people in the United States. It affects both sexes equally and occurs throughout the world, but is underrecognized and underdiagnosed. Symptoms include: excessive daytime sleepiness, cataplexy, fragmented nighttime sleep, hypnagogic/hypnopompic hallucinations, and sleep paralysis. Once established, narcolepsy is generally stable and can most often be effectively treated.
Connecting with others is a great way to help manage narcolepsy. Receiving support from those who have similar experiences can be an incredible part of the journey. Narcolepsy Network, the largest patient support organization for people with narcolepsy, offers a weekly virtual support group meeting on Thursdays and a virtual support group for parents of children or young adults with narcolepsy once a month. More information can be found on www.narcolepsynetwork.org.
For more information on these and other groups, please search here.