What is Narcolepsy?
Narcolepsy is a long-term neurological disorder that involves a decreased ability to regulate sleep-wake cycles. Symptoms often include periods of excessive daytime sleepiness and brief involuntary sleep episodes. About 70% of those affected also experience episodes of a sudden loss of muscle strength, known as cataplexy.
These experiences can be brought on by strong emotions. Less commonly, there may be vivid hallucinations or an inability to move (sleep paralysis) while falling asleep or waking up. People with narcolepsy tend to sleep about the same number of hours per day as people without, but the quality of sleep tends to be lessened.
The exact cause of narcolepsy is unknown, with potentially several causes. In up to 10% of cases, there is a family history of the disorder. Often, those affected have low levels of the neuropeptide orexin, which may be due to an autoimmune disorder. In rare cases, narcolepsy can be caused by traumatic brain injury, tumors, or other diseases affecting the parts of the brain that regulate wakefulness or REM sleep.
Diagnosis is typically based on the symptoms and sleep studies, after ruling out other potential causes. Excessive daytime sleepiness can also be caused by other sleep disorders such as sleep apnea, major depressive disorder, anemia, heart failure, drinking alcohol, and not getting enough sleep. Cataplexy may be mistaken for seizures.
Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. People with narcolepsy often find it difficult to stay awake for long periods of time, regardless of the circumstances. Narcolepsy can cause serious disruptions in your daily routine.
Sometimes, narcolepsy can be accompanied by a sudden loss of muscle tone (cataplexy), which can be triggered by strong emotion. Narcolepsy that occurs with cataplexy is called type 1 narcolepsy. Narcolepsy that occurs without cataplexy is known as type 2 narcolepsy.
The signs and symptoms of narcolepsy may worsen for the first few years and then continue for life.
- Excessive daytime sleepiness. People with narcolepsy fall asleep without warning, anywhere, anytime. For example, you may be working or talking with friends and suddenly you nod off, sleeping for a few minutes up to a half-hour. When you awaken, you feel refreshed, but eventually, you get sleepy again. You may also experience decreased alertness and focus throughout the day. Excessive daytime sleepiness usually is the first symptom to appear and is often the most troublesome, making it difficult for you to concentrate and fully function.
- Sudden loss of muscle tone. This condition, called cataplexy (KAT-uh-plek-see), can cause a number of physical changes, from slurred speech to complete weakness of most muscles, and may last up to a few minutes. Cataplexy is uncontrollable and is triggered by intense emotions, usually positive ones such as laughter or excitement, but sometimes fear surprise or anger. For example, when you laugh, your head may droop uncontrollably or your knees may suddenly buckle. Some people with narcolepsy experience only one or two episodes of cataplexy a year, while others have numerous episodes daily. Not everyone with narcolepsy experiences cataplexy.
- Sleep paralysis. People with narcolepsy often experience a temporary inability to move or speak while falling asleep or upon waking. These episodes are usually brief — lasting a few seconds or minutes — but can be frightening. You may be aware of the condition and have no difficulty recalling it afterward, even if you had no control over what was happening to you.
- This sleep paralysis mimics the type of temporary paralysis that normally occurs during a period of sleep called rapid eye movement (REM) sleep. This temporary immobility during REM sleep may prevent your body from acting out dream activity. Not everyone with sleep paralysis has narcolepsy, however. Many people without narcolepsy experience some episodes of sleep paralysis.
- Changes in rapid eye movement (REM) sleep. REM sleep is typically when most dreaming happens. REM sleep can occur at any time of the day in people with narcolepsy. People with narcolepsy often transition quickly to REM sleep, usually within 15 minutes of falling asleep.
- Hallucinations. These hallucinations are called hypnagogic hallucinations if they happen as you fall asleep and hypnopompic hallucinations if they occur upon waking. An example is feeling as if there is a stranger in your bedroom. These hallucinations may be particularly vivid and frightening because you may not be fully asleep when you begin dreaming and you experience your dreams as reality.
People with narcolepsy may have other sleep disorders, such as obstructive sleep apnea — a condition in which breathing starts and stops throughout the night — restless legs syndrome, and even insomnia.
Some people with narcolepsy experience automatic behavior during brief episodes of narcolepsy. For example, you may fall asleep while performing a task you normally perform, such as writing, typing, or driving, and you continue to perform that task while asleep. When you awaken, you can’t remember what you did, and you probably didn’t do it well.
The exact cause of narcolepsy is unknown. People with type 1 narcolepsy have low levels of the chemical hypocretin (hi-poe-KREE-tin). Hypocretin is an important neurochemical in your brain that helps regulate wakefulness and REM sleep.
Hypocretin levels are particularly low in those who experience cataplexy. Exactly what causes the loss of hypocretin-producing cells in the brain isn’t known, but experts suspect it’s due to an autoimmune reaction.
It’s also likely that genetics plays a role in the development of narcolepsy. But the risk of a parent passing this disorder to a child is very low — only about 1 percent.
Research also indicates a possible association with exposure to the swine flu (H1N1 flu) virus and a certain form of H1N1 vaccine that’s currently administered in Europe, though it’s not yet clear why.
Normal sleep pattern vs. narcolepsy
The normal process of falling asleep begins with a phase called non-rapid eye movement (NREM) sleep. During this phase, your brain waves slow considerably. After an hour or so of NREM sleep, your brain activity changes, and REM sleep begins. Most dreaming occurs during REM sleep.
In narcolepsy, however, you may suddenly enter into REM sleep without first experiencing NREM sleep, both at night and during the day. Some of the characteristics of narcolepsy — such as cataplexy, sleep paralysis, and hallucinations — are similar to changes that occur in REM sleep, but occur during wakefulness or drowsiness.
There are only a few known risk factors for narcolepsy, including:
- Age. Narcolepsy typically begins in people between 10 and 30 years old.
- Family history. Your risk of narcolepsy is 20 to 40 times higher if you have a family member who has narcolepsy.
- Public misunderstanding of the condition. Narcolepsy may cause serious problems for you professionally and personally. Others might see you as lazy or lethargic. Your performance may suffer at school or work.
- Interference with intimate relationships. Intense feelings, such as anger or joy, can trigger signs of narcolepsy such as cataplexy, causing affected people to withdraw from emotional interactions.
- Physical harm. Sleep attacks may result in physical harm to people with narcolepsy. You’re at an increased risk of a car accident if you have an attack while driving. Your risk of cuts and burns is greater if you fall asleep while preparing food.
- Obesity. People with narcolepsy are more likely to be overweight. The weight gain may be related to low metabolism.
Your doctor may make a preliminary diagnosis of narcolepsy based on your excessive daytime sleepiness and sudden loss of muscle tone (cataplexy). After an initial diagnosis, your doctor may refer you to a sleep specialist for further evaluation.
Formal diagnosis requires staying overnight at a sleep center for an in-depth sleep analysis by sleep specialists. Methods of diagnosing narcolepsy and determining its severity include:
- Sleep history. Your doctor will ask you for a detailed sleep history. A part of the history involves filling out the Epworth Sleepiness Scale, which uses a series of short questions to gauge your degree of sleepiness. For instance, you indicate on a numbered scale how likely it is that you would doze off in certain situations, such as sitting down after lunch.
- Sleep records. You may be asked to keep a detailed diary of your sleep pattern for a week or two, so your doctor can compare how your sleep pattern and alertness are related. Often, in addition to this sleep log, the doctor will ask you to wear an actigraph. This device has the look and feels of a wristwatch. It measures periods of activity and rest and provides an indirect measure of how and when you sleep.
- Polysomnography. This test measures a variety of signals during sleep using electrodes placed on your scalp. For this test, you must spend a night at a medical facility. The test measures the electrical activity of your brain (electroencephalogram) and heart (electrocardiogram) and the movement of your muscles (electromyogram) and eyes (electro-oculogram). It also monitors your breathing.
- Multiple sleep latency test. This examination measures how long it takes you to fall asleep during the day. You’ll be asked to take four or five naps, each nap two hours apart. Specialists will observe your sleep patterns. People who have narcolepsy fall asleep easily and enter into rapid eye movement (REM) sleep quickly.
These tests can also help doctors rule out other possible causes of your signs and symptoms. Other sleep disorders, such as chronic sleep deprivation, the use of sedating medications, and sleep apnea, can cause excessive daytime sleepiness.
There is no cure for narcolepsy, but medications and lifestyle modifications can help you manage the symptoms.
Medications for narcolepsy include:
- Stimulants. Drugs that stimulate the central nervous system are the primary treatment to help people with narcolepsy stay awake during the day. Doctors often try modafinil (Provigil) or armodafinil (Nuvigil) first for narcolepsy. Modafinil and armodafinil aren’t as addictive as older stimulants and don’t produce the highs and lows often associated with older stimulants. Side effects are uncommon but may include headache, nausea, or anxiety.
- Some people need treatment with methylphenidate (Aptensio XR, Concerta, Ritalin, others) or various amphetamines. These medications are very effective but can be addictive. They may cause side effects such as nervousness and heart palpitations.
- Selective serotonin reuptake inhibitors (SSRIs) or serotonin and norepinephrine reuptake inhibitors (SNRIs). Doctors often prescribe these medications, which suppress the REM sleep, to help alleviate the symptoms of cataplexy, hypnagogic hallucinations, and sleep paralysis. They include fluoxetine (Prozac, Sarafem, Selfemra) and venlafaxine (Effexor XR). Side effects can include weight gain, insomnia, and digestive problems.
- Tricyclic antidepressants. These older antidepressants, such as protriptyline (Vivactil), imipramine (Tofranil), and clomipramine (Anafranil), are effective for cataplexy, but many people complain of side effects, such as dry mouth and lightheadedness.
- Sodium oxybate (Xyrem). This medication is highly effective for cataplexy. Sodium oxybate helps to improve nighttime sleep, which is often poor in narcolepsy. In high doses, it may also help control daytime sleepiness. It must be taken in two doses, one at bedtime and one up to four hours later. Xyrem can have side effects, such as nausea, bed-wetting, and worsening of sleepwalking. Taking sodium oxybate together with other sleeping medications, narcotic pain relievers or alcohol can lead to difficulty breathing, coma, and death.
If you have other health problems, such as high blood pressure or diabetes, ask your doctor how the medications you take for your other conditions may interact with those taken for narcolepsy.
Certain over-the-counter drugs, such as allergy and cold medications, can cause drowsiness. If you have narcolepsy, your doctor will likely recommend that you avoid taking these medications.
Emerging treatments being investigated for narcolepsy include drugs acting on the histamine chemical system, hypocretin replacement, hypocretin gene therapy, and immunotherapy, but further research is needed before any may be available in your doctor’s office.
The Most Surprising Narcolepsy Statistics
Narcolepsy is estimated to affect 3 million people worldwide.
Only about 25% of people who have narcolepsy are diagnosed and are receiving treatment.
Symptoms typically begin to occur between the ages of 10 and 30, although narcolepsy can occur at any age.
Close to 50% of patients develop symptoms in their teenage years.
Misdiagnosis is estimated to occur in about 60% of narcolepsy patients.
Underdiagnosed and delays of 5 to 10 years are common before making a firm diagnosis.
In the US, narcolepsy is 50% more prevalent in females.
People with first-degree relatives who have narcolepsy have a 40-fold higher risk of developing the disorder.
Lifestyle and home remedies
Lifestyle modifications are important in managing the symptoms of narcolepsy. You may benefit from these steps:
- Stick to a schedule. Go to sleep and wake up at the same time every day, including weekends.
- Take naps. Schedule short naps at regular intervals during the day. Naps of 20 minutes at strategic times during the day may be refreshing and reduce sleepiness for one to three hours. Some people may need longer naps.
- Avoid nicotine and alcohol. Using these substances, especially at night, can worsen your signs and symptoms.
- Get regular exercise. Moderate, regular exercise at least four to five hours before bedtime may help you feel more awake during the day and sleep better at night.
Coping and support
Dealing with narcolepsy can be challenging. Making adjustments in your daily schedule may help. Consider these tips:
- Talk about it. Tell your employer or teachers about your condition and work with them to find ways to accommodate your needs. This may include taking naps during the day, breaking up monotonous tasks, recording meetings or classes, standing during meetings or lectures, and taking brisk walks at various times throughout the day. The Americans with Disabilities Act prohibits discrimination against workers with narcolepsy and requires employers to provide reasonable accommodation to qualified employees.
- Be safe. If you must drive a long distance, work with your doctor to establish a medication schedule that ensures the greatest likelihood of wakefulness during your drive. Stop for naps and exercise breaks whenever you feel drowsy. Don’t drive if you feel too sleepy.
Support groups and counseling can help you and your loved ones cope with narcolepsy. Ask your doctor to help you locate a group of a qualified counselor in your area.
Gingko is an excellent herb for the treatment of narcolepsy. Gingko Biloba enhances and protects the nervous system by improving the circulation of blood to the brain and protecting the nerve cells with its antioxidant action.
Gingko leaves have active constituents like flavonoids and terpenoids. These substances are excellent in improving narcolepsy and other nervous system disorders.
However, it is essential to keep in mind that one should not consume ginkgo extracts before going in for a surgical procedure or if the individual suffers from a bleeding disorder.
Ginseng is a natural stimulant, another amazing herb for the treatment of narcolepsy. It helps reduce symptoms by improving the blood circulation to the brain, which in turn, ensures that the brain receives an increased supply of oxygen and other vital nutrients. It can be taken in the tincture form or can be added to tea.
Rosemary, an herb widely used in numerous food preparations, is another amazing substance that treats narcolepsy. It boosts the circulatory system and can be taken as a tincture, capsule, or can even be added to tea.
Cayenne pepper is thought to reduce the symptoms of narcolepsy to a considerable extent. Merely adding more cayenne pepper to your food preparations is thought to have a positive effect on the condition of an individual suffering from narcolepsy.
Gotu kola is an herb that strengthens and protects the connective tissue system, that ensures enough blood and oxygen reach the brain, which is ideal for the treatment of narcolepsy. The antioxidant effect of this herb is a wonderful treatment for narcolepsy, as it protects the nervous system cells from damage.
Consuming this herb frequently, however, may have a few side effects like skin rashes and irritation. Consult a physician before use.
John’s wort is a well-known herb that is found to get better sleep quality. It calms and soothes the nerves. It acts directly on the nervous system. An everyday dosage of herbal tea by boiling the herbs in water and consuming the strained juice twice a day is effective.
Vitamins are necessary nutrients required in the daily diet for a proper and healthy immune system. Vitamins A, B, C, D are all required in decent amounts that have to be included regularly. Vitamin B complex helps control regular sleep cycles and is used in treating sleep disorders.
Always consult with your doctor before taking any herbal remedies. Consult with your doctor if you have any symptoms of narcolepsy.
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