What you probably know about narcolepsy is that it causes people to involuntarily fall asleep at times during the day. Most of the time, we can stop ourselves from falling asleep, but people with narcolepsy cannot. Narcolepsy is a neurological disorder, which means it affects the brain and nervous system, specifically related to sleep. It is diagnosed through a physical check up, medical history, and sleep studies which monitor brain activity during sleep. [1] Blood tests for genetic markers and possibly a cerebrospinal fluid test (spinal tap) to check levels of a chemical called hypocretin, which is low in people with narcolepsy. [1.1]

Narcolepsy is treated with medication and behaviour changes—lifestyle changes may have to be made to include naps throughout the day, or avoidance or adaptation of situations that may trigger extreme sleepiness. [1.2] Sleep paralysis or hallucinations can also occur while awake or asleep, and be difficult to cope with [2]. There are also safety concerns to address when dealing with narcolepsy, such as your ability to drive safely [1.2], or episodes of cataplexy.

Not everyone with narcolepsy has cataplexy, but you cannot have cataplexy without narcolepsy. Cataplexy is a loss of muscle control usually brought on by strong emotions—most commonly laughing [2]– that can range from “mild” to “severe”—from weakness of, for example, eyelids or muscles affecting speech, to feeling as if your legs are going to give out or that your arms are weak, to falling over completely and being unable to move until the attack of cataplexy subsides [2]. In all instances, people with cataplexy are conscious of what is happening during attacks. [2]

Narcolepsy is one disorder that I have seen emphatic recommendations that those living with the condition consider joining a support group, because of the nature of the disorder. There are many places online to find support groups for narcolepsy—here is one list that sorts narcolepsy support groups by state, from the Narcolepsy Network. Because narcolepsy is a sleep disorder that also affects people during their waking hours, it is important to have support in learning to navigate different life situations with the disorder—#NarcolepsyNotAlone is a campaign Julie started to help people connect with others who understand what life with narcolepsy is like.

If you have narcolepsy, check out the links above to the work Julie and other narcolepsy advocates are doing. As well, consider wearing narcolepsy medical ID so that those around you can respond appropriately during an episode of narcolepsy or cataplexy if they do not know about your diagnosis.