Narcolepsy is a chronic sleep disorder characterized by excessive daytime sleepiness, cataplexy, sleep paralysis and hallucinations. It occurs when the brain is unable to regulate sleep-wake cycles normally due to a lack of hypocretin, a neurotransmitter. Symptoms include irresistible daytime sleep attacks, loss of muscle control in response to strong emotions, and vivid dreams during sleep transitions. While it affects around 200,000 Americans, most cases remain undiagnosed. Management focuses on lifestyle changes and medications to control symptoms as there is no cure currently. Living with narcolepsy presents many challenges to daily functioning, social activities and emotional well-being.

1. Narcolepsy

2. 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”).

3. 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.

4. 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).

5. 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.

6. 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. 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.

7. 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.

8. 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.

9. 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.

10. 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

11. 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

12. Walking in my shoes... Having narcolepsy has drastically changed my life. At first, finding out that I have this disorder was depressing. Knowing that the disorder has no cure and is going to play a major role in the rest of my life, I felt as if my future is shattered into pieces… It has been two months now. I have learned to accept the invasion of this strange disorder into my life, and I am trying my hardest to adjust my lifestyle to accommodate for the complications of the disorder, but it is difficult…

13. I worry the most about going to school everyday with the disorder. Throughout the day, I usually feel tired and drowsy, which affects me greatly because I cannot fully pay attention to the teacher. Also, I have had several sleep attacks during tests and quizzes. I sometimes ask my teacher for more time, but other times, the timing is very strict. As a result, my grades have gone down significantly. This is so frustrating!

14. My doctor has been telling me to schedule a few naps scattered throughout the day. I have tried doing that a few times, but it doesn’t exactly work out when I’m in school. During the weekdays, I can only take a 20 to 30-minute nap during lunch. It is somewhat refreshing, but not enough to last me through the whole day.

15. Ever since narcolepsy entered my life, it has always been on my mind. Maybe I’m not thinking about it 24/7, but it’s always there. I constantly have to remind myself that I cannot or should not do certain activities because I cannot predict when I’m going to collapse due to a sudden sleep attack or an episode of cataplexy.

16. Since sleep attacks are very common after meals, I can cope with the disorder by eating light meals, which usually translate into tiny vegetarian meals. Before important tests and parties, I only eat a little. This makes me sad because I cannot eat a calorie-rich cheeseburger with greasy French fries whenever I want. I cannot fully enjoy the sweet and sour chicken that my mom cooks. Sometimes I crave for those dishes, but I have to quench my cravings with more broccoli or corn.

17. Many people do not know about narcolepsy and think I’m crazy when I inform them about the sleeping disorder. My teachers all know about the condition and do not punish me for falling asleep in class. (I had to bring in a whole bunch of doctors’ notes for them to believe me.) However, when we have substitute teachers, it is very irritating because they always think that I’m being lazy and not on task when I have my head down on my desk. After I wake up, I’m usually too lazy to explain the whole situation to them because the disorder is not well-known in society anyway.

18. Even though I do not have a driver’s license and have never driven a car before, I am extremely scared nowadays whenever I think about learning to drive. The question that always pops into my brain when I think about driving is… “What if I have a sleep attack on the road?” Then, my thoughts get scarier and scarier as I imagine having fatal car crashes.

19. Another major effect of having the disorder is that my social life is being disrupted. Before, I attended many social activities with my friends. We went bowling, karaoke, and picnicking. We went to the movies and had poker parties. We went swimming and ice skating. Now, I reject many of the invitations because a lot of those activities get me very excited and emotionally aroused. Also, having a sudden sleep attack or a sudden invasion of cataplexy is embarrassing, especially in public places. I often feel lonely and left out…

20. Life, in general, seems to go by slower. I feel different, too. Before, I was usually very energetic and animated, laughing and joking with my friends a lot. Now, I always feel lethargic. Even when I am in a good mood, I sometimes still feel drowsy physically. I can’t imagine what it is going to be like, living with this disorder for the rest of my life…but I guess I just have to make the best out of it…