There are all kinds of sleep disorders a person can suffer from, and while many of them are debilitating in their own right, narcolepsy really does take a toll on the human body and is a very serious condition. And it can be deadly! What should you understand about this disorder?
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A look at narcolepsy
Narcolepsy is a chronic neurological disorder affecting the brain and hindering it from controlling the sleep/wake cycles. People with this disorder often feel well rested when they wake up, but as the day goes on, they start to get really sleepy.
The problem is that narcoleptics have uneven and interrupted sleep and often wake up in the night hours (but don’t realize it).
What makes narcolepsy so dangerous is that it has a huge impact on a person’s daily activities. These people may fall asleep anywhere – when driving, talking, or eating. Other signs of narcolepsy include:
- total paralysis (just before going to sleep or upon waking up)
- vivid hallucinations or images
- sudden muscle weakness (causing them to be unable to move or go limp) – also called narcolepsy with cataplexy.
During a normal sleep cycle a person goes into rapid eye movement (REM) sleep after 60 to 90 minutes. During this stage of sleep people dream, and the brain ensures that the muscles stay limp to prevent people from acting their dreams out.
However, narcoleptics fall asleep and go into REM sleep quickly (at least 15 minutes later). Plus the dream activity and muscle weakness of REM sleep may occur when a person is awake.
A person who does not seek treatment for narcolepsy can have real problems maintaining a job, school, or social life. They are affected cognitively, socially, and psychologically. It can impede their overall development.
Who is at risk of developing narcolepsy?
Both men and women can suffer from this condition. Symptoms tend to begin in childhood through young adulthood (between the ages of 7 and 25), but that doesn’t mean that someone older cannot begin to experience these symptoms.
It’s thought that up to 200,000 people in the U.S. have narcolepsy. The real problem is that this number could be even higher as it tends to go undiagnosed and untreated. Narcoleptics are often diagnosed with other (emotional or psychiatric) problems which is why it can be years before a person gets the right diagnosis and treatment.
Key causes behind narcolepsy
Nearly all people with narcolepsy who have cataplexy have low levels of hypocretin,a chemical that controls wakefulness and REM sleep. These levels are normal in people who have narcolepsy without cataplexy.
While the exact causes of the disorder are not known, research suggests a number of simultaneously occurring factors to reduce the levels of hypocretin. What influences may be having an impact?
It’s not common for narcolepsy to be caused by a traumatic injury that occurs in the part of the brain that controls REM sleep and wakefulness. It’s also uncommon but possible for a tumor or some other disease in the same regions to cause the disorder.
In the majority of cases there is no family history of narcolepsy, but in about 10 percent of cases there is a family history of the disease (usually a close relative).
A person with cataplexy is said to have suffered a loss of brain cells that can generate hypocretin. It’s not known why these brain cells are lost, but it looks like there is a link to abnormalities in the body’s immune system. An autoimmune disorder takes place when the body’s immune system begins to mistakenly attack the healthy tissue and cells.
Researchers assume that the immune system randomly attacks the brain cells that produce hypocretin due to environmental or genetic factors.
Types of narcolepsy
Narcolepsy can be broken down into two key types:
Type 1 – narcolepsy with cataplexy, the diagnosis is made when the levels of hypocretin are low or when an individual reports cataplexy and has excessive daytime sleepiness in a special nap test.
Type 2 – narcolepsy with no cataplexy. People with type 2 narcolepsy tend to have excessive daytime sleepiness but no muscle weakness that emotions can trigger. The symptoms are not as severe, and the levels of hypocretin are normal. Secondary narcolepsy can occur when the hypothalamus has suffered an injury, an area of the brain where sleep is regulated. Besides symptoms of narcolepsy a person may have severe neurological problems and sleep for over 10 hours a night.
The symptoms of narcolepsy
The unfortunate aspect of narcolepsy is that it’s a lifetime condition, but not one that will worsen as the person gets older. In fact, symptoms often alleviate as time passes, but never fully go away. The most common symptoms of narcolepsy include:
- sleep paralysis
- excessive daytime sleepiness.
While most people have excessive daytime sleepiness, 10 to 25 percent have all the other symptoms during the course of their illness.
It’s not uncommon to have extremely vivid and scary images while in sleep paralysis, usually at times of waking up or going to sleep. In the majority of cases the content is visual, but it’s not unheard for other senses to be involved.
This is a temporary inability to move or speak while waking up or falling asleep and usually lasts seconds or minutes. Sleep paralysis is similar to cataplexy, but occurs at the edges of sleep. Like cataplexy, the sufferer knows what’s going on around them. There is no permanent dysfunction, even in severe cases. Once the episode passes, the sufferer talks and moves again normally.
This symptom leads to sudden loss of muscle tone while the person is awake. That leads to weakness and loss of involuntary muscle control. The condition usually happens due to powerful emotions like excitement, stress, irritation, terror, and laughter. Symptoms of cataplexy can appear weeks and years after EDS begins with only one or two attacks in a sufferer’s life. However, some people experience them regularly.
In roughly 10 percent of cases of narcolepsy cataplexy is the first symptom to be seen and is commonly thought to be a seizure disorder. The attacks are generally mild and involve minor weaknesses such as slight drooping of the eyelids. Severe attacks can lead to a complete bodily collapse where a person cannot move, talk, or keep their eyes open. Despite that they are fully conscious, which is different from a seizure or fainting.
The loss of muscle tone during the episode of cataplexy is similar to paralysis in muscle activity while in REM sleep. These episodes last only a few minutes and resolve on their own. Though scary, there is no danger to the sufferer as long as they find a safe place in which to collapse.
Excessive daytime sleepiness
Everybody who has narcolepsy has excessive daytime sleepiness, and it’s the most obvious symptom. EDS is defined by chronic sleepiness no matter how much sleep the person got the night before. Narcoleptics tend to suffer from attacks of sleep, which is when they experience a sudden overwhelming sense of sleepiness. Between these attacks they are alert and can function normally.
Additional symptoms of narcolepsy include:
People with narcolepsy tend to suffer from temporary sleep episodes that last a few seconds at the most. The person may fall asleep while doing an activity and continue to do so without conscious awareness that they are doing it. This is especially true of individuals who do repetitive jobs such as typing or driving. They are unable to remember their actions, and their performance is usually impaired.
For instance, a typing person may be unable to type correctly. Or they may put items in bizarre locations and forgot where they put them. If the incident occurs while they are driving, they could become lost or get into an accident.
However, people with these episodes often wake up feeling great and find that their sleepiness is no longer a bother.
Fragmented sleep and insomnia
A person with narcolepsy gets very sleepy in the day, but may also have problems staying asleep at night. They may suffer from insomnia, have sleep apnea and vivid dreams. They may act while they’re dreaming and have occasional leg movements.
How is narcolepsy diagnosed?
There are two key things that can help a doctor identify if a person has narcolepsy – complete medical history and clinical exam. Prospective sufferers may be asked to keep a sleep journal for two weeks, noting the times of sleep and their symptoms. While there are no major symptoms that tie directly to narcolepsy, the most common symptom is cataplexy.
Your doctor will do a physical exam to identify or rule out any other possible neurological conditions that could cause the symptoms, using specialized tests. These tests – Multiple Sleep Latency Test (MSLT) and polysomnogram (a sleep study) – are conducted at a sleep disorder clinic.
Sleep latency test (MSLT)
This test will analyze daytime sleepiness by gauging how quickly a person goes to sleep and if they go into REM sleep. On the day after the sleep study doctors will ask the patient to take five short naps with periods of two hours awake during the day. If a person goes to sleep in eight minutes or less during these napping periods, it’s a sign of excessive daytime sleepiness.
People who have narcolepsy will fall into REM sleep very quickly as well. If it happens within 15 minutes of falling asleep and in at least two of the five naps, a person is diagnosed with the condition.
The sleep study will do an overnight recording of your brain and muscle activity, eye movements, and breathing. The test will let doctors know when REM sleep is occurring and whether the symptoms result from another condition such as sleep apnea.
Doctors will also want to know what the hypocretin levels are. They’ll do a lumbar puncture to measure the hypocretin-1 levels from the cerebrospinal fluid. If no other medical conditions are present, the doctors can reasonably conclude that a person has type 1 narcolepsy if the levels of hypocretin are low.
What treatments are there for narcolepsy?
There is currently no cure for narcolepsy, but the symptoms can be managed by making some lifestyle changes and medication. If doctors suspect cataplexy, the hypocretin loss is thought to be permanent. However, medications can control cataplexy and excessive daytime sleepiness.
Modafinil – The first line of treatment targets the central nervous system. Modafinil, which is a stimulant, is often the first medication to be prescribed because it has fewer side effects and the chance of addiction is low. The majority of people find that these drugs very effectively decrease daytime sleepiness and increase alertness.
Amphetamine-like stimulants – Where Modafinil fails, doctors may use amphetamine-like stimulants to reduce excessive daytime sleepiness. These medications must be closely monitored to ensure that the side effects don’t become too bothersome – nervousness, irritability, nighttime sleep disruptions, shakiness, etc. They are also careful about prescribing these drugs because of a high chance of their abuse.
Antidepressants – There are two categories of antidepressant medications that can help to control cataplexy - tricyclics and selective serotonin and noradrenergic reuptake inhibitors. Antidepressants generally don’t have as many side effects as amphetamines, but problems such as high blood pressure, heartbeat irregularities, and impotence might occur.
Sodium Oxybate – The U.S. Food and Drug Administration approved this drug to help combat excessive daytime sleepiness and cataplexy that narcoleptics tend to suffer from. The sedative is very strong and must be taken twice a night. However, there are some safety concerns, which is why it’s usually reserved as the last resort.
Lifestyle changes to treat narcolepsy
Even with the medications that can help with narcolepsy, not everybody can maintain a fully normal state of alertness. This is why doctors will suggest making lifestyle changes in addition to using drug therapy to treat the condition.
- Do something relaxing before bedtime – a warm bath or reading. Make your bedroom cool to get to sleep a little more easily.
- Avoid a big meal before bedtime – when you eat a large meal before bedtime, it can be more difficult to fall asleep.
- Exercise regularly – exercise 20 minutes a day at least five hours before bedtime to improve overall sleep quality. This will help with narcolepsy and reduce weight gain.
- Do not smoke – especially at night.
- Do not consume alcohol or caffeine for several hours before bedtime.
- Stick to a sleep schedule – go to sleep and wake up at the same time all the time (even at weekends) to feel better.
- Nap for short times – When you feel extremely tired, take a short nap at regularly scheduled times when you tend to feel the sleepiest.
Turning to support groups
It’s important to realize that you are not alone in suffering from narcolepsy. There are many support groups that can help you find better coping techniques and feel less isolated. These groups offer people with a network of contacts that can provide both emotional support and practical help.
The U.S. Americans with disabilities act and your job/school
Employers are required by the Americans with Disabilities Act to offer reasonable accommodations for any employee who has a disability. This also includes narcoleptics. People with this condition can speak to their doctors about work schedule modifications that allow them to take naps when it’s necessary and do the more demanding aspects of their job when they’re more alert.
Parents who have children with narcolepsy can speak to school administrators about their child’s special needs such as taking medications at school, altering the class schedule to fit in the nap, etc.
A person with narcolepsy must be very careful when doing certain activities, such as driving. People who don’t seek treatment are far more likely to get involved in accidents. The risk is lower for those who have treatment.
Both cataplexy and excessive daytime sleepiness can result in serious injuries and even death if they are not treated. A person may suddenly lose control over their muscles or fall asleep, making even walking down the stairs dangerous and sometimes fatal.
There are several disorders that can mimic the symptoms of narcolepsy, and the comparisons can help in identifying which sleep disorder you may suffer from. What are some of these disorders?
This condition is rare, but noted by chronic episodes of daytime sleepiness for no identifiable reason (idiopathic). The disorder is different from narcolepsy because people with it don’t have the sudden need to sleep, nor cataplexy. They also don’t feel rejuvenated after they take a nap. It’s not uncommon for people with this disorder to sleep for more than 10 hours and for some to sleep less.
People with idiopathic hypersomnia experience disruptions in all areas of life, but the disorder can be treated with medication and behavioral modification.
This is an extremely common sleep disorder noted by constant interruptions in breathing while sleeping. The symptoms of sleep apnea include recurring disruptions to sleep, extreme tiredness in the day, loud snoring, poor concentration, irritability, etc.
Obesity, which also includes fatness and narrow airways in the neck, can cause sleep apnea. A person with obstructive sleep apnea will experience breathing problems because the airway collapses. A person may partially awaken because they are gasping for air. Once they start to breathe again, they often fall back asleep.
Untreated sleep apnea may be associated with high blood pressure and irregular heartbeats. This increases the chances of a heart attack, stroke, diabetes, and heart failure.
The Kleine-Levin syndrome
This is a very rare condition in which a person needs a lot of sleep (20 hours a day is not uncommon). They may eat more than they should, and there are significant behavioral changes such as an abnormally uninhibited sexual drive. When the sufferer is awake, they may lack energy or emotions. They may come across as confused and have hallucinations.
The symptoms are recurring, and it’s not uncommon for sufferers to go for months before experiencing symptoms again. There have been cases where symptoms have disappeared as a person got older, but some episodes can recur later.
There is no known reason behind the syndrome and why someone has it.
Some other conditions similar to narcolepsy
Narcolepsy-like symptoms can occur in people who have a brain tumor, have had a head injury, have hardening of the arteries in the brain, or too much protein in their blood because of kidney failure and psychosis.
Excessive daytime sleepiness can also be due to hypothyroidism, hypoglycemia, depression, delayed sleep phase syndrome, and periodic limb movement disorder.