Narcolepsy

Narcolepsy

Narcolepsy is a sleep disorder which causes the individual to suddenly and uncontrollably fall asleep, sometimes for just seconds and other times for longer periods. This condition impacts daily functioning and may increase the risk for anxiety and depression. According to the National Institute of Neurological Disorders and Stroke (NINDS), up to 200,000 people in the United States have narcolepsy.

Narcolepsy symptoms may start in adolescence or even childhood and they continue into adulthood. Many people with narcolepsy are undiagnosed or misdiagnosed with conditions like depression, obstructive sleep apnea, or even epilepsy. Both men and women suffer from narcolepsy equally.

Narcolepsy often accompanies other conditions

Sometimes one condition is the result of the other, left untreated. For example, individuals with narcolepsy have a higher likelihood of experiencing symptoms of anxiety and depression which may stem from untreated narcolepsy. Narcolepsy symptoms can be frustrating and quite challenging to cope with, depending on their severity. Specifically, we observe when patients struggle with narcolepsy in addition to anxiety or depression, treating the underlying sleep disorder tends to improve all other symptoms. The exception is when a person’s depression or anxiety is so severe that they need immediate relief. At that point, the order of interventions must be considered. However, narcolepsy is a serious illness and in most cases needs to be treated as soon as possible.

Diagnosing narcolepsy

Polysomnography (a sleep study) is helpful in diagnosing narcolepsy. Another test, the multiple sleep latency test (MSLT) is sometimes used to evaluate daytime sleepiness. With this test, the day after the polysomnography, the person is told to take five short naps during the day, each separated by two hours. If the person can fall asleep in 8 minutes or less for each nap, this response indicates they have excessive daytime sleepiness. In addition, if the person initiates REM sleep (dreaming) within 15 minutes in at least two of the five naps, as well as in the prior sleep study, this indicates a likelihood of narcolepsy.

What it looks like

The person with narcolepsy experiences intense sleepiness during the daytime. They struggle with becoming sleepy very suddenly and can even fall uncontrollably into sleep. These periods are commonly referred to as “sleep attacks” and can occur while driving a car, operating heavy equipment, giving a speech, or engaging in many other activities. Clearly, narcolepsy can be a serious safety concern in some circumstances. As mentioned earlier, the sleep periods may last for a few seconds or even a few minutes but rarely last longer. The sleep lapses may be infrequent, and might not even be noticeable to the person with this illness or others around them.

There are two main types of narcolepsy, and a third more rare type. Type 1 narcolepsy is distinguished by the presence of a symptom called Cataplexy. Cataplexy is a sudden loss of muscle tone, and it varies considerably in how it presents. At one extreme, the person becomes extremely limp like a rag doll, slumping over and possibly falling. However, cataplexy symptoms can be very subtle or occur in just one part of the body, such as with a sudden slackening of the jaw. People with narcolepsy who do not experience cataplexy are diagnosed with Type 2 narcolepsy.

Common symptoms of narcolepsy for both types, in addition to the sleep lapses, are as follows:

• Fatigue
• Excessive daytime sleepiness
• Disrupted nighttime sleep or insomnia
• Sleep paralysis
• Hallucinations
• Memory problems
• Depression

Causes of narcolepsy

The cause of Type 1 narcolepsy is now known: individuals with this disorder have low levels of hypocretins (orexins), which are brain chemicals that regulate the sleep/wake cycle. These are neurotransmitters produced by the hypothalamus of the brain that regulate wakefulness. However, hypocretins are at near-normal or normal levels in people with Type 2 narcolepsy (the non-cataplexy type). There is also a genetic marker for narcolepsy that is inherited, although not everyone with the gene develops narcolepsy.

It is also known that most people with narcolepsy inherit a gene that affects the human leukocyte antigen (HLA). The specific gene is known as HLA-DQB1*06:02, and people who have this gene carry an increased risk for developing narcolepsy. However, the influence of other genes may decrease or increase the risk for narcolepsy.

Some experts believe that narcolepsy is an autoimmune disorder, and suspect that the immune system attacks the neurons that create hypocretin.

In addition to genetics, research indicates other risk factors in the development of narcolepsy including hormone changes and severe psychological stress. Rarely, an infection, such as swine flu or streptococcus, may trigger narcolepsy and this is known as Secondary Narcolepsy.

Unique challenges

Many people with narcolepsy blame themselves for being tired all the time or underperforming in their daily routines. If they know that they have an issue with sleep, they may think that they should be better able to control their sleep. It is important to know that narcolepsy is nobody’s fault. Narcolepsy may also cause difficulty with sleeping at night--which can be confusing when struggling with “sleep attacks” during the day. Narcolepsy affects both the sleep system and wakefulness systems in the body.

Untreated narcolepsy

Untreated narcolepsy can lead to insufficient sleep over the long term, as well as anxiety and depression stemming from the condition. Safety risks must be considered as it can be dangerous or even life-threatening if a person falls asleep while driving a car or operating dangerous equipment. Experiencing insomnia leads to an increased risk for narcoleptic episodes during the daytime. Sleep hygiene practices can improve night time sleep and thereby decrease the risk for episodes of narcolepsy during the day. However, seeking and obtaining treatment from one's doctor can improve or sometimes alleviate these symptoms considerably. This is why it is crucial for the disorder to be diagnosed and treated.

Outlook

While living with narcolepsy can present unique obstacles, treatment can dramatically improve one’s quality of life. Many people who are properly diagnosed and treated with medications or other therapies will notice considerable improvement.

In good company

Several prominent people reportedly have narcolepsy, such as television personality Jimmy Kimmel and actress Nastassia Kinski. The late Winston Churchill, the British prime minister and a key figure in World War II, suffered from narcolepsy.