Summary
- Narcolepsy usually starts as a child or teen.
- Some people who think they have narcolepsy often have sleep apnea, which must be treated.
- There are ways for people to manage narcolepsy.
Narcolepsy is a brain disorder that affects the body’s sleep mechanism. There is poor control of sleep-wake cycles. This causes severe fatigue during the day. It also causes sudden sleep that can happen at any time. These “sleep attacks” can last a few seconds to many minutes. Sleep attacks can be very unsafe, even taking place while driving. People who have it may also have a sudden loss of muscle tone or not be able to move at all before falling asleep or waking. This is called cataplexy. They may also hallucinate, which is seeing things that are not there.
For people with narcolepsy, sleep quality can suffer. Waking up often during the night is common. They also do not go through the same sleep stages as others do. Most people get about eight hours of sleep with four to six cycles at 100 to 110 minutes each. They enter REM, or rapid eye movement, sleep after 80 to 100 minutes of deeper sleep. But people with narcolepsy fall asleep fast and enter the REM stage a few minutes in, bypassing deep sleep.
Who gets narcolepsy?
More than one in 2,000 people in the United States have narcolepsy. It most often starts as a child or teen. Some research shows that people who have it are missing two brain chemicals in a part of the brain that controls how sleep moves from stage to stage. Experts think these missing chemicals are a mistake in the immune system.
Even though narcolepsy is the second leading cause of great fatigue during the day, most people who have it have not been diagnosed. Often, this is because people do not think being sleepy is a health problem. But this means they are not getting help.
Finding out if you have narcolepsy
People with narcolepsy often suffer for years without knowing they have it. One main sign is extreme daytime fatigue. If you feel this way, see your doctor right away. You may then need to see a sleep expert or go to a sleep center. You not only will need to find out if you have narcolepsy, but also to make sure you don’t have some other sleep disorder. Many people who think they have narcolepsy really have sleep apnea, or both. Sleep apnea causes less oxygen flow to the brain and needs to be treated.
Getting help
Narcolepsy will not go away. But certain medicines can help, so ask which one your doctor prefers. This is especially the case with loss of muscle tone. There are also other steps you can take. Mali Einen, clinical research coordinator for the Stanford University Center for Narcolepsy, promotes planning naps. Einen notes, “By the time you are nodding off, it’s a sign that a nap a full hour earlier would have helped. If you stop and take the 20-minute nap, you will be able to work faster and better afterwards.” She also thinks the timing of meds in concert with naps may help more than increasing the dose.
Einen also believes that what is good for everyone is very good for people with any chronic illness, including narcolepsy. Exercise, healthy eating and sleep schedules are all helpful. And Einen knows this from experience—not just with patients, but on a personal level. She, too, has narcolepsy. And although she helps others who have it today, her colleagues are also looking ahead. Researchers are working to find a way to stop people from getting it at all.
Resources
National Sleep Foundation
www.sleepfoundation.org
American Academy of Sleep Medicine
www.yoursleep.aasmnet.org
Stanford School of Medicine, Center for Narcolepsy
http://med.stanford.edu/psychiatry/narcolepsy/
Summary
- Narcolepsy usually starts as a child or teen.
- Some people who think they have narcolepsy often have sleep apnea, which must be treated.
- There are ways for people to manage narcolepsy.
Narcolepsy is a brain disorder that affects the body’s sleep mechanism. There is poor control of sleep-wake cycles. This causes severe fatigue during the day. It also causes sudden sleep that can happen at any time. These “sleep attacks” can last a few seconds to many minutes. Sleep attacks can be very unsafe, even taking place while driving. People who have it may also have a sudden loss of muscle tone or not be able to move at all before falling asleep or waking. This is called cataplexy. They may also hallucinate, which is seeing things that are not there.
For people with narcolepsy, sleep quality can suffer. Waking up often during the night is common. They also do not go through the same sleep stages as others do. Most people get about eight hours of sleep with four to six cycles at 100 to 110 minutes each. They enter REM, or rapid eye movement, sleep after 80 to 100 minutes of deeper sleep. But people with narcolepsy fall asleep fast and enter the REM stage a few minutes in, bypassing deep sleep.
Who gets narcolepsy?
More than one in 2,000 people in the United States have narcolepsy. It most often starts as a child or teen. Some research shows that people who have it are missing two brain chemicals in a part of the brain that controls how sleep moves from stage to stage. Experts think these missing chemicals are a mistake in the immune system.
Even though narcolepsy is the second leading cause of great fatigue during the day, most people who have it have not been diagnosed. Often, this is because people do not think being sleepy is a health problem. But this means they are not getting help.
Finding out if you have narcolepsy
People with narcolepsy often suffer for years without knowing they have it. One main sign is extreme daytime fatigue. If you feel this way, see your doctor right away. You may then need to see a sleep expert or go to a sleep center. You not only will need to find out if you have narcolepsy, but also to make sure you don’t have some other sleep disorder. Many people who think they have narcolepsy really have sleep apnea, or both. Sleep apnea causes less oxygen flow to the brain and needs to be treated.
Getting help
Narcolepsy will not go away. But certain medicines can help, so ask which one your doctor prefers. This is especially the case with loss of muscle tone. There are also other steps you can take. Mali Einen, clinical research coordinator for the Stanford University Center for Narcolepsy, promotes planning naps. Einen notes, “By the time you are nodding off, it’s a sign that a nap a full hour earlier would have helped. If you stop and take the 20-minute nap, you will be able to work faster and better afterwards.” She also thinks the timing of meds in concert with naps may help more than increasing the dose.
Einen also believes that what is good for everyone is very good for people with any chronic illness, including narcolepsy. Exercise, healthy eating and sleep schedules are all helpful. And Einen knows this from experience—not just with patients, but on a personal level. She, too, has narcolepsy. And although she helps others who have it today, her colleagues are also looking ahead. Researchers are working to find a way to stop people from getting it at all.
Resources
National Sleep Foundation
www.sleepfoundation.org
American Academy of Sleep Medicine
www.yoursleep.aasmnet.org
Stanford School of Medicine, Center for Narcolepsy
http://med.stanford.edu/psychiatry/narcolepsy/
Summary
- Narcolepsy usually starts as a child or teen.
- Some people who think they have narcolepsy often have sleep apnea, which must be treated.
- There are ways for people to manage narcolepsy.
Narcolepsy is a brain disorder that affects the body’s sleep mechanism. There is poor control of sleep-wake cycles. This causes severe fatigue during the day. It also causes sudden sleep that can happen at any time. These “sleep attacks” can last a few seconds to many minutes. Sleep attacks can be very unsafe, even taking place while driving. People who have it may also have a sudden loss of muscle tone or not be able to move at all before falling asleep or waking. This is called cataplexy. They may also hallucinate, which is seeing things that are not there.
For people with narcolepsy, sleep quality can suffer. Waking up often during the night is common. They also do not go through the same sleep stages as others do. Most people get about eight hours of sleep with four to six cycles at 100 to 110 minutes each. They enter REM, or rapid eye movement, sleep after 80 to 100 minutes of deeper sleep. But people with narcolepsy fall asleep fast and enter the REM stage a few minutes in, bypassing deep sleep.
Who gets narcolepsy?
More than one in 2,000 people in the United States have narcolepsy. It most often starts as a child or teen. Some research shows that people who have it are missing two brain chemicals in a part of the brain that controls how sleep moves from stage to stage. Experts think these missing chemicals are a mistake in the immune system.
Even though narcolepsy is the second leading cause of great fatigue during the day, most people who have it have not been diagnosed. Often, this is because people do not think being sleepy is a health problem. But this means they are not getting help.
Finding out if you have narcolepsy
People with narcolepsy often suffer for years without knowing they have it. One main sign is extreme daytime fatigue. If you feel this way, see your doctor right away. You may then need to see a sleep expert or go to a sleep center. You not only will need to find out if you have narcolepsy, but also to make sure you don’t have some other sleep disorder. Many people who think they have narcolepsy really have sleep apnea, or both. Sleep apnea causes less oxygen flow to the brain and needs to be treated.
Getting help
Narcolepsy will not go away. But certain medicines can help, so ask which one your doctor prefers. This is especially the case with loss of muscle tone. There are also other steps you can take. Mali Einen, clinical research coordinator for the Stanford University Center for Narcolepsy, promotes planning naps. Einen notes, “By the time you are nodding off, it’s a sign that a nap a full hour earlier would have helped. If you stop and take the 20-minute nap, you will be able to work faster and better afterwards.” She also thinks the timing of meds in concert with naps may help more than increasing the dose.
Einen also believes that what is good for everyone is very good for people with any chronic illness, including narcolepsy. Exercise, healthy eating and sleep schedules are all helpful. And Einen knows this from experience—not just with patients, but on a personal level. She, too, has narcolepsy. And although she helps others who have it today, her colleagues are also looking ahead. Researchers are working to find a way to stop people from getting it at all.
Resources
National Sleep Foundation
www.sleepfoundation.org
American Academy of Sleep Medicine
www.yoursleep.aasmnet.org
Stanford School of Medicine, Center for Narcolepsy
http://med.stanford.edu/psychiatry/narcolepsy/