What is narcolepsy?• Narcolepsy is a chronic sleep disorder that causes

drowsiness and frequent nap attacks during the day.

• It is NOT related to depression, seizure disorders, fainting, or simple lack of sleep.

• The name narcolepsy comes from the French word narcolepsie, which is a combination of the Greek word narkē(“numbness”) and leptos (“seizure”).

What can cause narcolepsy?• Narcolepsy is NOT a

mental illness. It is a nervous system disorder.

• Evidence suggests that narcolepsy may run in families.

• Scientists believe that narcolepsy is caused by a decrease in the amount of hypocretin.

• Hypocretin is involved in controlling appetite and sleep patterns.

What is the major symptom?

• The major symptom is excessive daytime sleepiness.

• Sleep attacks occur with little warning and may often occur at inappropriate times and paces.

• These naps are physically irresistible and take place several times per day, usually lasting for about 15 minutes each (can be longer).

What are the other symptoms?

Cataplexy

• The person suddenly loses muscle function while awake and cannot move.

• It can be a result of strong emotions, such as laughter or anger.

• The attacks can last from a few seconds to several minutes.

Sleep paralysis

• The person temporarily loses the ability to talk or move when he or she wakes up or first becomes drowsy.

Hypnagogic hallucinations

• These are vivid, dreamlike experiences that take place when a person is sleeping, falling asleep, or awakening.

• The hallucinations involve seeing or hearing.

Automatic behavior

• A person continues to function, such as talking and putting objects in different places, during sleep, but he or she does not recall doing such activities after awakening.

How many people are diagnosed with narcolepsy?

• Experts estimate that around 3 million people worldwide have narcolepsy.

• In the United States, it is estimated that there are around 200,000 people affected by the disorder, but not even a quarter of them are diagnosed.

• The prevalence is about 1 per 2,000 people.

• The usual onset of narcolepsy is in adolescence and young adulthood.

How does one get diagnosed with narcolepsy?

• Two tests are commonly used to diagnose nacolepsy.

• One is the polysomnogram, which involves continuous recording of brain waves and nerve and muscle functions during sleep at night.

• Another is the multiple sleep latency test, or MSLT, which involves observations made of the time taken for a person to reach the different stages of sleep.

How does one get treated?

• There is no known cure for narcolepsy. There are only ways to control the symptoms.

• Modafinil, a stimulant drug, is a popular medicine for treating narcolepsy because it is less likely to be abused than other stimulants.

• Antidepressant drugs can reduce cataplexy, sleep paralysis, and hallucinations.

• Some patients also take sodium oxybate at night.

What are some lifestyle adjustments that can help cope with narcolepsy?

• Eating light meals during the day

• Avoiding heavy meals before important events

• Napping after meals

• Planning naps ahead

• Informing teachers and employers about the disorder

What are some possible complications in daily life?

• May endanger life if sleep attacks occur while driving, operating machinery, etc.

• Impairment of functioning at work

• Impairment of social activities

• Side effects of medicines used to treat the disorder

Walking in my shoes...

Having narcolepsy has drastically changed my life. At first,finding out that I have this disorder was depressing. Knowingthat the disorder has no cure and is going to play a majorrole in the rest of my life, I felt as if my future isshattered into pieces…

It has been two months now. I have learned to accept theinvasion of this strange disorder into my life, and I amtrying my hardest to adjust my lifestyle to accommodate forthe complications of the disorder, but it is difficult…

I worry the most about going to schooleveryday with the disorder.

Throughout the day, I usually feel tired anddrowsy, which affects me greatly because Icannot fully pay attention to the teacher.

Also, I have had several sleep attacks duringtests and quizzes. I sometimes ask myteacher for more time, but other times, thetiming is very strict. As a result, my gradeshave gone down significantly. This is sofrustrating!

My doctor has been telling me to schedulea few naps scattered throughout the day.I have tried doing that a few times, butit doesn’t exactly work out when I’m inschool.

During the weekdays, I can only take a20 to 30-minute nap during lunch. It issomewhat refreshing, but not enough tolast me through the whole day.

Ever since narcolepsy entered my life, it hasalways been on my mind. Maybe I’m notthinking about it 24/7, but it’s always there.I constantly have to remind myself that Icannot or should not do certain activitiesbecause I cannot predict when I’m going tocollapse due to a sudden sleep attack or anepisode of cataplexy.

Since sleep attacks are very common after meals, I can copewith the disorder by eating light meals, which usuallytranslate into tiny vegetarian meals. Before important testsand parties, I only eat a little.

This makes me sad because I cannot eat a calorie-richcheeseburger with greasy French fries whenever I want. Icannot fully enjoy the sweet and sour chicken that my momcooks. Sometimes I crave for those dishes, but I have toquench my cravings with more broccoli or corn.

Many people do not know about narcolepsy and think I’mcrazy when I inform them about the sleeping disorder. Myteachers all know about the condition and do not punish mefor falling asleep in class. (I had to bring in a whole bunchof doctors’ notes for them to believe me.) However, whenwe have substitute teachers, it is very irritating becausethey always think that I’m being lazy and not on task whenI have my head down on my desk. After I wake up, I’musually too lazy to explain the whole situation to thembecause the disorder is not well-known in society anyway.

Even though I do not have a driver’s license and havenever driven a car before, I am extremely scarednowadays whenever I think about learning to drive.The question that always pops into my brain when Ithink about driving is… “What if I have a sleep attackon the road?” Then, my thoughts get scarier andscarier as I imagine having fatal car crashes.

Another major effect of having the disorder isthat my social life is being disrupted. Before, Iattended many social activities with my friends.We went bowling, karaoke, and picnicking. Wewent to the movies and had poker parties. Wewent swimming and ice skating.

Now, I reject many of the invitations because alot of those activities get me very excited andemotionally aroused. Also, having a sudden sleepattack or a sudden invasion of cataplexy isembarrassing, especially in public places.

I often feel lonely and left out…

Life, in general, seems to go byslower. I feel different, too.Before, I was usually veryenergetic and animated, laughingand joking with my friends a lot.Now, I always feel lethargic.Even when I am in a good mood, Isometimes still feel drowsyphysically.

I can’t imagine what it is going tobe like, living with this disorderfor the rest of my life…but Iguess I just have to make thebest out of it…