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The causes of narcolepsy
Researchers continue to seek out the root cause of narcolepsy. Currently, the general consensus is that genetics, accompanied by an environmental trigger of some sort—a virus, for example— may affect brain chemicals and contribute to the disorder.
Scientists have recently discovered that people with narcolepsy are lacking in hypocretin (also called orexin), a chemical in the brain that activates arousal and regulates sleep. Narcoleptics generally do not have as many the Hcrt cells or neurons that secrete hypocretin, inhibiting their ability to fully control their alertness and tendencies to fall asleep. Scientists are working on developing treatments to augment hypocretin levels and to alleviate narcolepsy symptoms by addressing the cause of the disorder.
Heredity appears to be a factor in narcolepsy, but environmental triggers also play a strong role. Research is also investigating these triggers.
Signs and symptoms of narcolepsy
The main narcolepsy symptoms are excessive daytime sleepiness and sudden episodes of falling asleep, from several seconds to more than thirty minutes.
Other narcolepsy symptoms include:
- Loss of muscle control (cataplexy): People with narcolepsy often have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing. About two-thirds of people with narcolepsy have this symptom of sudden muscle weakness, or cataplexy.
- Hallucinations: Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening. About 25 to 50% of narcolepsy sufferers have such hallucinations.
- Sleep paralysis: Sleep paralysis is the inability to move or talk at the beginning or end of sleep. About 25 to 50% of narcolepsy sufferers experience sleep paralysis.
- Microsleep: Some people with narcolepsy have very brief sleep episodes during which they continue to function (talk, put things away, etc.), and then they awaken with no memory of performing such activities. Up to 40% of people with narcolepsy experience these automatic behaviors during sleep episodes.
- Nighttime wakefulness: People with narcolepsy may have periods of wakefulness at night, with hot flashes, elevated heart rate, and sometimes intense alertness. This disrupted nighttime sleep adds to daytime sleepiness.
- Rapid entry into REM sleep: Narcoleptics have unique sleep cycles. They enter the REM, or dream, phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter the REM phase. This means that the characteristics of REM sleep (vivid dreams and muscle paralysis) occur at the beginning of nighttime sleep for someone with narcolepsy. If the person falls asleep during the day, vivid dreams and muscle paralysis can also occur immediately.
Two of the most common narcolepsy symptoms (excessive daytime sleepiness and cataplexy) seem to be connected to emotional state. People often have these symptoms when they are experiencing intense emotions, such as laughter, sadness, surprise, or frustration.
Diagnosing narcolepsy
The most common and sometimes the only symptom of narcolepsy is excessive daytime sleepiness. Because excessive daytime sleepiness is a symptom of other sleep disorders and of depression, narcolepsy can be difficult to diagnose.
Narcolepsy is often misdiagnosed or undiagnosed. Narcolepsy symptoms may be falsely attributed to other problems, such as psychological conditions or epilepsy. Also, people may report only the most alarming symptoms to their doctor, which may lead to a misdiagnosis.
Diagnosis of narcolepsy can take a very long time, sometimes more than one year, or even up to several decades.
Cataplexy (sudden loss of muscle control) is the sole unique symptom of narcolepsy. Therefore, if you experience cataplexy be sure to talk with your doctor about narcolepsy.
Along with considering your list of symptoms, physicians and sleep specialists use the following methods to diagnose narcolepsy:
- Epworth Sleepiness Scale – This sleep questionnaire asks you to rank whether certain situations make you sleepy and, if so, how sleepy.
- Nocturnal polysomnogram- This test will measure the electrical activity of your brain (electroencephalogram) and heart (electrocardiogram), and the movement of your muscles (electromyogram) and eyes (electro-oculogram), and usually requires an overnight stay at a sleep clinic for observation purposes.
- Multiple sleep latency test (MSLT) – This test measures how long it takes for you to fall asleep during the day. People with narcolepsy tend to fall asleep very quickly. In addition, an abnormally quick progression to REM sleep is a strong indicator of narcolepsy.
- Spinal fluid analysis – The lack of hypocretin in the cerebrospinal fluid may be a marker for narcolepsy. Examining spinal fluid is a new diagnostic test for narcolepsy.
The effects of narcolepsy
Narcolepsy can have serious repercussions on many aspects of life, including mental health. Because the diagnosis of narcolepsy may be prolonged, treatment is often delayed. Usually, by the time of treatment, narcolepsy has seriously impaired one’s personal and professional life. It is important to pursue diagnosis and treatment if you notice symptoms of narcolepsy. The following are just a few of the negative effects narcolepsy can have on your life.
| Effects of Narcolepsy Similar to existing | |
Physical well-being and safety |
Narcolepsy can make you a danger to yourself and others. Most activities, including driving, working, cooking, or walking, can be very dangerous if you fall asleep or lose muscle control unexpectedly. Many men with narcolepsy report sexual dysfunction. Narcoleptics often have headaches or are obese. |
Mental health |
The rate of depression in narcoleptics is much higher than in the general population. Some experts estimate that 30 to 57% of narcoleptics are depressed, compared to 8% of the general population. |
Social and professional relationships |
Unfortunately, sudden sleep episodes are often found humorous to those not familiar with the condition. People may think that the individual falling asleep suddenly while eating, talking, working, or shopping is faking or purposely opting out.It is not uncommon for a narcoleptic to be misinterpreted as lazy or rude. |
Intimate relationships |
Personal relationships, especially spousal relationships, often suffer because of doubt about the condition and a misconception that the symptoms stem from a psychological problem. Extreme sleepiness may cause low sex drive and impotence, adding further complications to relationships. |
Memory and attention |
Some studies report that people with narcolepsy have problems remembering things and staying focused. This may be due to excessive tiredness or to brain abnormalities that also contribute to narcolepsy. |
Accredited sleep centers
The American Academy of Sleep Medicine provides a sleep center locator with information on finding a sleep center near you.
Treating narcolepsy
Although no cure yet exists for narcolepsy, a combination of treatments can control narcolepsy symptoms. The recommended treatment for narcolepsy includes a combination of counseling, medication, and behavioral changes.
Treating narcolepsy with counseling and support groups
The symptoms of narcolepsy—particularly sleep attacks and cataplexy—can wreak havoc on your ability to live a normal life. The episodes can be frightening, and you may become depressed because of the sudden lack of control. Fear of falling asleep or of sudden collapse forces some people to become reclusive and withdrawn. Depression in people with narcolepsy is understandably very common. Reaching out to a psychologist, counselor, or support group can help you to cope with the effects of the disorder.
Medications for narcolepsy
Medication is very helpful for treating the symptoms of narcolepsy. Commonly prescribed drugs for narcolepsy are:
- Stimulants - Examples: Methylphenidate (Ritalin), Modafinil (Provigil) and various amphetamines. These are the main drugs prescribed for narcolepsy. They act on the central nervous system to help people stay alert and awake during the day. Stimulants are effective, but can have strong side effects, such as nervousness and heart palpitations.
- Antidepressants - Examples: Tricyclic antidepressants, such as protriptyline (Vivactil) and imipramine (Tofranil)); selective serotonin reuptake inhibitors (SSRIs), such as fluoxetine (Prozac) and sertraline (Zoloft). Antidepressants help narcolepsy by suppressing REM sleep, and alleviating the symptoms of cataplexy, hallucinations, and sleep paralysis.
- Sodium oxybate (Xyrem) - This drug controls cataplexy and daytime sleepiness, but is associated with strong side-effects such as dizziness, vomiting, and urinary incontinence.
Behavioral changes that help the effects of narcolepsy
Behavioral changes are usually recommended along with medications to help a person to manage narcolepsy symptoms. Combining the various treatments can improve alertness and help you control the effects of a narcoleptic episode.
| Self-Help for Narcolepsy similar to existing | |
Schedule your sleep periods |
Take a few brief, scheduled naps during the daytime (10-15 minutes each). Try to get a good night’s sleep during the same hours each night. Planned naps can prevent unplanned lapses into sleep during the daytime. |
Avoid caffeine, alcohol, and nicotine |
These substances interfere with sleep when you need it. |
Involve your employers, coworkers, and friends |
Alert others so that they can accommodate for your condition and help when needed. |
Carry a tape recorder |
Record important conversations and meetings, in case you fall asleep. |
Break up larger tasks into small pieces |
Focus on one small thing at a time. |
Exercise on a regular basis |
Exercise can make you feel more awake during the day and stimulate sleep at night. For example, take several short walks during the day. |
Avoid activities that would be dangerous if you had a sudden sleep attack |
If possible, don’t drive, climb ladders, or use dangerous machinery. Taking a nap before driving may help you to manage any possible sleepiness. |
Wear a medical alert bracelet or necklace |
Alert others about your condition if you suddenly fall asleep or become unable to move or speak. |
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Related links for narcolepsy
Narcolepsy symptoms and causes
What Is Narcolepsy? – Comprehensive information on narcolepsy symptoms, causes, diagnosis, treatment, and research. (University of Maryland Medical Center)
Narcolepsy Association UK (UKAN) – An easy-to-understand site for information and support for narcolepsy sufferers. (Narcolepsy.org.uk)
Support for narcolepsy
Narcolepsy Internet's Jumpstation – An annotated list of research, news, and abstracts. (Narcolepsy.org)
What Can I Do? – A listing of support groups and contact people throughout the world who can help you with your narcolepsy. (NarcolepsyNetwork.org)
Finding help and treatment for narcolepsy
Center for Narcolepsy – Current research findings, and opportunities to participate in research studies. Information on the diagnosis and treatment of narcolepsy. (Stanford School of Medicine))
Locate a Sleep Center... – Find a sleep center by zip code or by state. (SleepCenters.org, American Academy of Sleep Medicine)
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