Narcolepsy is a huge part of my life. It has taken me years to figure out how to handle this crazy disorder, and yet each day is still a struggle. Narcolepsy is a sleep-wake disorder that affects me night and day. During the day I fight excessive sleepiness and cataplexy.
Cataplexy is temporary muscle paralysis triggered by strong emotion. Degrees of paralysis vary from muscle weakness to full body collapse. A cataplexy episode lasts anywhere from a few seconds to minutes depending on one’s level of excitement and ability to control the emotion that triggered the attack. During the night my sleep is interrupted because my sleep cycle tends to be in REM (rapid eye movement, dream state). My dreams are dramatic and vivid. I wake up every 90 minutes or so.
Often, I experience sleep paralysis and hypnagogic hallucinations. These symptoms are frightening and exhausting. I have a classic, text book case of narcolepsy. People with narcolepsy have few to no hypocretin cells in their hypothalamus. We don’t know why this is or how these cells died. Recently it has been discovered that narcolepsy is an auto-immune condition.
I’ve tried many medications over the years. Until recently, all of the medicines for narcolepsy only treated the symptoms and gave me unwanted side effects. Stimulants are commonly used for sleepiness and anti-depressants for cataplexy, sleep paralysis, and hypnogogic halluncinations. After attending my first Narcolepsy Network (NN) conference in 2000, I learned about various medicines and life style changes to improve narcolepsy symptoms. Since being diagnosed and treated for my narcolepsy, I had gained 40 plus pounds and was struggling to function. Attending this NN conference was a pivotal moment for me in learning to live a more qualify life.
I am now on 3 different medications, all of which treat my narcolepsy. Even with these life saving medications, I must still follow certain “rules” to feel my best. Some days are better than others. These rules are: drink lots of water, stay away from sugar, limit carbohydrates, eat small meals more often, Prioritize, schedule in a nap before important activities, don’t over schedule myself, and stay away from alcohol. It is also necessary for me to not have important discussions when I am sleepy or after 7pm because my brain doesn’t work as well, and my patience is nearly non-existent. I am lucky to have supportive family and friends.
Watching a child collapse in front of his classmates from cataplexy or have to quit his baseball team because he can no longer run to first base is TRAGIC in my eyes. I hate to see a kid struggling in school because he can’t keep in eyes open. Fighting the urge to sleep all day long is sooo incredibly difficult. Narcolepsy is misunderstood and misdiagnosed. It can be a devastating disease if left untreated and not always do treatments work. Its very easy to let narcolepsy get away from you. One can become depressed, socially isolated, and end up struggling through life every day. These are all reasons why I am so involved in raising awareness.
A few years back, I’ve been involved in a Narcolepsy Awareness Campaign. You can find these educational brochures at your local sleep center or order them online from the Narcolepsy Network. Look for the public service announcement (PSA) on television or click here to watch the video. The announcement stars Kate Walsh from the television show “Grey’s Anatomy”.
The Narcolepsy News on YouTube told by CNN News correspondent Paula Zahn features Anthony Raymond, a person with narcolepsy, and it shows a very good example of cataplexy. The video is only seven minutes long, and is very worthwhile to watch. *****
Dogs even have narcolepsy!
Julye Flygare, Narcolepsy spokesperson and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy.