Narcolepsy is a disorder of the nervous system. It causes drowsiness and sleep attacks. It’s also known as daytime sleep disorder and cataplexy. The Center for Narcolepsy (CN) at Stanford University School of Medicine reports that one in every 2,000 Americans has narcolepsy. Most people with narcolepsy are undiagnosed and untreated. Narcolepsy isn’t a deadly disease. However, accidents that occur during an episode can injure or kill.
Symptoms of narcolepsy usually begin between the ages of 10 and 25. People who develop the condition sooner tend to have more severe symptoms.
The cause of narcolepsy is unknown. However, people with narcolepsy have decreased amounts of a brain protein called hypocretin. Hypocretin helps to regulate the cycling of wakefulness and REM sleep.
Some scientists think low hypocretin levels may be caused by an autoimmune response. In autoimmune diseases, the immune system attacks healthy cells. Other factors such as stress, exposure to toxins, and infection also may play a role in narcolepsy.
Sleep occurs in stages. At the beginning of the sleep process, brain waves slow down. This is when non-rapid eye movement (NREM) sleep occurs. After 90 minutes to two hours, rapid eye movement (REM) sleep begins. In REM sleep, brain waves increase. Dreaming and muscle paralysis occur during REM sleep.
People with narcolepsy can suddenly fall asleep, lose muscle tone, and begin to dream. This may happen no matter what they’re doing or what time of day it is. In narcolepsy patients, REM sleep occurs spontaneously. They do not first go through NREM sleep. The symptoms of REM sleep just happen all at once.
The symptoms of narcolepsy are related to the processes of REM sleep. These include dreaming, decreased consciousness, and muscle paralysis. Symptoms of narcolepsy are varied.
Excessive Daytime Drowsiness is usually the first symptom of narcolepsy. It causes problems functioning on the job and elsewhere.
Sudden loss of muscle tone, also known as cataplexy, can be triggered by intense emotions. These may include excitement, laughter, anger, or fear. The frequency of cataplexy varies. Some people have it several times a day. Others experience it a few times a year.
Hallucinations can occur in people with narcolepsy. This is because dreaming is part of REM sleep. If dreams occur when someone is partially awake, they may seem like reality. This can be very frightening.
Sleep paralysis is an inability to move or speak while falling asleep or waking. Episodes last only a few minutes but can be very frightening. Young adults with narcolepsy are most likely to experience sleep paralysis. Sleep paralysis mimics the paralysis seen during REM sleep. It can also occur in people who don’t have narcolepsy.
Diagnosis of narcolepsy begins with a medical history and physical exam. Doctors will look for a history of excessive daytime drowsiness and episodes of sudden loss of muscle tone. Formal diagnosis may require a sleep study. Several tests may be needed to diagnose your narcolepsy
The Epworth Sleepiness Scale (ESS) is a simple questionnaire. It asks how likely you are to sleep in different circumstances. .
Actigraph monitoring keeps track of how and when you fall asleep. This device is worn like a wristwatch. It may be used together with a sleep diary.
Multiple sleep latency tests determine how long it takes you to fall asleep during the day. You will need to take four to five naps, two hours apart.
Polysomnogram testing requires that you spend the night in a medical facility. You will be monitored while you sleep. Electrodes attached to your scalp will measure brain activity. Heart rate and rhythm, eye movement, muscle movement, and breathing will also be tracked. This test can detect sleep apnea.
Spinal taps are a way of collecting your cerebrospinal fluid (CSF). CSF hypocretin is expected to be low in people with narcolepsy. For this test, a thin needle is inserted between two lumbar vertebrae. It is also called a lumbar puncture.
Narcolepsy has no cure. It’s a chronic condition that lasts a lifetime. The goal of treatment is to control symptoms and improve daytime functioning. Stimulants, lifestyle adjustments, and avoidance of hazardous activities are all used to treat this disorder. There are several classes of medications used to treat narcolepsy:
- Stimulants such as armodafinil, dextroamphetamine (Dexedrine, DextroStat), and methylphenidate (Ritalin) may be used to improve wakefulness. Armodafinil is usually the first medication to be prescribed. It’s the least likely to be abused.
- Tricyclic antidepressants can reduce cataplexy, sleep paralysis, and hallucinations. These medications can have unpleasant side effects such as dry mouth and urinary retention.
- Selective norepinephrine uptake inhibitors (SNRIs) can help keep you awake. Norepinephrine is a natural stimulant and a part of the sympathetic nervous system. Preventing the re-absorption of norepinephrine prolongs its activity and keeps sleep at bay.
- Xyrem (sodium oyxbate) can be used to help you sleep at night.
- Selective serotonin reuptake inhibitors (SSRIs) can help improve your mood.
Living with narcolepsy can be challenging. You may be worried about what others will think of you. It can be stressful to have an episode at an awkward time. However, there are steps you can take to make living with narcolepsy easier and safer.
- Tell teachers and supervisors about your condition. They should understand that if you fall asleep, you’re not just being lazy.
- Be aware that some narcolepsy treatments will cause you to test positive for stimulants on drug screens. Talk to your employer in advance to prevent misunderstandings.
- Eat light or vegetarian meals during the day. Don’t eat a heavy meal before important activities.
- Try taking 10 to 15 minute naps after meals.
- Schedule naps throughout the day. This may help avoid daytime drowsiness.
- Avoid nicotine and alcohol. They can make symptoms worse.
- Exercise regularly. Try exercising four to five hours before bedtime. This can help you rest better at night. It can also help keep you alert during the day.
- Some states may limit driving privileges for people with narcolepsy. Be sure to check with your local DMV. They can help keep you from endangering anyone or breaking the law.