What is it?
The term narcolepsy is used to describe a group of people affected by excessive sleepiness. It also includes features of dreaming that occur while awake. Narcoleptics are often refreshed by short naps. However, after two or three hours, they feel sleepy again. At times, people with narcolepsy can fall asleep suddenly. These “sleep attacks” can happen while eating, walking or driving.
* Adapted from the American Academy of Sleep Medicine
There are two main kinds of narcolepsy:
Cataplexy is when the leg, arm or face muscles suddenly become weak. It is normally caused by strong emotions. This is what people often experience while laughing or when they are surprised.
People with narcolepsy often experience the following:
You are unable to move for a few seconds or minutes as you are falling asleep or waking up.
You see things that aren’t there. You have the feeling that there is someone in the room with you as you are falling asleep.
You wake up frequently and have trouble falling back to sleep.
Who gets it?
About one out of every 2,000 people is known to have narcolepsy. There does seem to be a genetic link to it. There are more people in Japan who have it. Fewer people in Israel suffer from it. The chance that you have narcolepsy is higher when a relative also has it. It affects the same number of men and women.
How do I know if I have it?
If your answer to some of these questions is yes, then you might have narcolepsy. Narcolepsy can last for your entire life. It usually starts between the ages of 12 and 20. The symptoms do not get better without treatment.
It is also important to know if there is something else that is causing your sleep problems. They may be a result of one of the following:
Do I need to see a sleep specialist?
Yes. Many primary care doctors are not always sure how to figure out if you have narcolepsy. Since it is not a common sleep problem, doctors do not see many patients who have it. Sleep specialists deal with people who have narcolepsy all the time. They have the experience and skill to help you get better. They will need to know your full medical history. They will also be sure to give you a physical exam. Finally, you will need to do two sleep studies. These sleep studies will help them evaluate your problem.
What will the doctor need to know?
The doctor will need to know what symptoms you have and when they started. If you have sleep attacks, he or she will want to know how often you have them and what time of day they occur. It will be important to tell your doctor how old you were when you first started to have problems. He or she will need to know your full medical history. Find out if you have any family members with sleep problems. It will also be helpful if you fill out a sleep diary for two weeks.
Will I need to take any tests?
To know for sure if you have narcolepsy, you will need to do two sleep studies:
The polysomnogram will chart your brain waves, heart beat, and breathing as you sleep. It will also record how your arms and legs move. This will show if there are other problems that are causing your sleep attacks. Two examples of these problems are sleep apnea and periodic limb movement disorder.
People who have narcolepsy tend to fall asleep at unusual times during the day. The MSLT will measure how fast you fall asleep during the day. It will also show what kind of sleep (i.e. REM sleep) you have when you take a nap.
Your doctor may ask that you take a test to screen for drugs before you have the MSLT. There are a number of drugs that can affect the results of the sleep study. The drug screen will help the doctor to know what the MSLT really says about your sleep problem.
How is it treated?
The most common way to treat narcolepsy is to use a medication. Your doctor will most likely want you to take a stimulant that helps you stay awake during the day. There are a variety of stimulants that can be used. Some common stimulant type medications are modafinil (provigil), methylphenidate (ritalin), amphetamine salts (adderall). A newer medication taken at night called gaba-hydroxybutyrate (xyrem) may also be tried. It may take some time for your doctor to find the right medication for you. He or she will also need to find the right dosage to control your symptoms.
If you have narcolepsy with cataplexy,a doctor may also need to use medications (usually SSRIs) to treat your muscle weakness with emotions. Xyrem may also be helpful in this case.
A common non-pharmacologic treatment includes maintaining good sleep hygiene, and napping when needed.