Narcolepsy Project

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, also known as orexin, 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 wasdepressing. Knowing that the disorder has no cureand is going to play a major role in the rest of mylife, I felt as if my future is shattered intopieces…

It has been two months now. I have learned toaccept the invasion of this strange disorder intomy life, and I am trying my hardest to adjust mylifestyle to accommodate for the complications ofthe disorder, but it is difficult…

I worry the most about going toschool everyday with the disorder.

Throughout the day, I usually feeltired and drowsy, which affects megreatly because I cannot fully payattention to the teacher.

Also, I have had several sleepattacks during tests and quizzes. Isometimes ask my teacher for moretime, but other times, the timing isvery strict. As a result, my gradeshave gone down significantly. This isso frustrating!

My doctor has been telling me toschedule a few naps scatteredthroughout the day. I have trieddoing that a few times, but itdoesn’t exactly work out when I’min school.

During the weekdays, I can onlytake a 20 to 30-minute nap duringlunch. It is somewhatrefreshing, but not enough to lastme through the whole day.

Ever since narcolepsy entered mylife, it has always been on my mind.Maybe I’m not thinking about it24/7, but it’s always there. Iconstantly have to remind myself thatI cannot or should not do certainactivities because I cannot predictwhen I’m going to collapse due to asudden sleep attack or an episode ofcataplexy.

Since sleep attacks are very common aftermeals, I can cope with the disorder by eating lightmeals, which usually translate into tiny vegetarianmeals. Before important tests and parties, I onlyeat a little.

This makes me sad because I cannot eat a calorie-rich cheeseburger with greasy French frieswhenever I want. I cannot fully enjoy the sweetand sour chicken that my mom cooks. Sometimes Icrave for those dishes, but I have to quench mycravings with more broccoli or corn.

Many people do not know about narcolepsy andthink I’m crazy when I inform them about thesleeping disorder. My teachers all know about thecondition and do not punish me for falling asleepin class. (I had to bring in a whole bunch ofdoctors’ notes for them to believe me.)However, when we have substitute teachers, it isvery irritating because they always think that I’mbeing lazy and not on task when I have my headdown on my desk. After I wake up, I’m usuallytoo lazy to explain the whole situation to thembecause the disorder is not well-known in societyanyway.

Even though I do not have a driver’s licenseand have never driven a car before, I amextremely scared nowadays whenever I thinkabout learning to drive. The question thatalways pops into my brain when I think aboutdriving is… “What if I have a sleep attack onthe road?” Then, my thoughts get scarierand scarier as I imagine having fatal carcrashes.

Another major effect of having thedisorder is that my social life is beingdisrupted. Before, I attended manysocial activities with my friends. Wewent bowling, karaoke, and picnicking.We went to the movies and had pokerparties. We went swimming and iceskating.

Now, I reject many of the invitationsbecause a lot of those activities get mevery excited and emotionally aroused.Also, having a sudden sleep attack or asudden invasion of cataplexy isembarrassing, especially in public places.

I often feel lonely and left out…

Life, in general, seems to goby slower. I feeldifferent, too. Before, Iwas usually very energeticand animated, laughing andjoking with my friends a lot.Now, I always feellethargic. Even when I am ina good mood, I sometimesstill feel drowsy physically.

I can’t imagine what it isgoing to be like, living withthis disorder for the rest ofmy life…but I guess I justhave to make the best outof it…