Narcolepsy is an incurable but manageable neurological condition that causes people to experience intense periods of sleepiness along with various other symptoms such as vivid nightmares, hallucinations, sleep paralysis, cataplexy, and discontinuous sleep.

People usually begin to show symptoms of narcolepsy between the ages of 10 and 20, although for unknown reasons, some will first display symptoms in their mid to late 30s. Narcolepsy affects about 1 in every 2,000 people and does not discriminate between men and women.

Types of Narcolepsy

There are two types of narcolepsy that are recognized by the medical establishment. One is narcolepsy with cataplexy, and the other is narcolepsy without the cataplexy component. Typically narcolepsy without cataplexy is the milder form of the condition and does not cause facial spasms, muscle weakness, or hallucinations.

Narcolepsy with cataplexy is an extremely vexing condition and can produce all the above mentioned symptoms and more. This type of narcolepsy is usually linked to reduced levels of the neurotransmitter orexin, which is something we will get into in greater length below. As of this writing there is no definitive answer as to what causes some people to experience a loss of orexin, although it is believed to be an autoimmune condition.

Causes of Narcolepsy

The prevailing theory is that narcolepsy is associated with low levels of the neurotransmitter orexin (hypocretin) in the brain (1). In some cases, people with narcolepsy have been found to be missing up to 90% of the neurons that produce this neurotransmitter. It must be said, however, that not everyone with narcolepsy is orexin-deficient. That implies there may be more than one cause and numerous alternative causes have been suggested, including:

• Concussions or other types of head trauma
• Exposure to environmental or work-related toxins
• Multiple sclerosis
• Tumors
• Stroke

It should also be mentioned that people with abnormally low levels of orexin usually have more severe symptoms than those with normal, or close to normal, orexin levels in their brain.

Risk Factors for Narcolepsy

The underlying reason why some people suffer a loss of certain neurotransmitters in the brain is still unclear, so trying to pinpoint risk factors is difficult. It is believed to be primarily an autoimmune condition, but again, the exact mechanism is still unidentified. As we mentioned above, exposure to certain toxic chemicals also seems to play a role. But why one person seems to develop narcolepsy after exposure to a certain toxin and someone else does not is also unknown.

What is known is that symptoms can first manifest in people as young as 10 and as old as 40, with 15 and 36 being the most common ages when people first experience symptoms. Why those two particular ages see the most emergent cases is also unknown. Some suggest that people are genetically predisposed to the condition, but that has not been authoritatively proven.

Diagnosing Narcolepsy

In the absence of overwhelming symptoms a condition with so many unknowns attached to it can be difficult to diagnose. Still, if you believe you may have narcolepsy it is important to get yourself checked to either confirm it or rule it out so you can get on with your life.

In order to ensure an accurate diagnosis your doctor will examine your entire medical history going back years to see if there were symptoms that may have been overlooked. They will also need to conduct a thorough physical examination.

After that, they may ask you to keep a health journal and write down whenever you don’t feel right. They may also ask you to keep a sleep journal to record episodes of insomnia, bad dreams, or other potential symptoms of narcolepsy.

Beyond that you will likely be asked to undergo overnight sleep testing during which a sleep specialist will try and rule out other possible conditions such as sleep apnea. You will likely undergo polysomnography (2) during which your brain waves will be monitored along with your blood oxygen levels, breathing patterns, heart rate and leg and eye movements.

If at the end of the night narcolepsy is suspected you will be asked to stay and undergo what is known as a multiple sleep latency test (3). This test looks for things such as how fast you fall asleep and whether you go immediately into REM sleep (a potential sign of narcolepsy).

If the testing is inconclusive the sleep specialist may ask you to consent to a hypocretin level test. As we mentioned earlier, hypocretin (also known as orexin) is a neurotransmitter that has been linked to narcolepsy. Or rather, low levels of it have been linked to narcolepsy. The hypocretin level test is a fairly involved test that requires a spinal tap in order to obtain a sample of cerebrospinal fluid (4). It is not a test that is undertaken lightly.

If the hypocretin test reveals an abnormally low level of orexin, and there are other symptoms that fall in line, it usually results in a diagnosis of narcolepsy.

Narcolepsy Misdiagnosis

The above may seem like an awful lot to go through to either confirm or rule out narcolepsy. But the fact is, failing to be thorough or seeking advice from less than qualified individuals, often leads to misdiagnosis. Symptoms of narcolepsy can mirror those of other sleep disorders including sleep deprivation and sleep apnea (5), as well as mental health disorders such as depression. Therefore, you need to make sure you work with qualified sleep professionals and that they are as thorough as possible.

Misdiagnosing narcolepsy can have long-term negative repercussions for a person. Those repercussions may include taking an unnecessary medication for a prolonged period of time, or allowing the true problem to fester. If that happens it may make it much more difficult to treat the real problem when it is finally discovered. So, no matter how tedious the diagnostic process may seem, avoid the temptation to cut corners.

Symptoms of Narcolepsy

As we mentioned, symptoms of narcolepsy can often mirror symptoms of other conditions, which is why a thorough, professional diagnosis is so important. That said, here are some of the classic symptoms of narcolepsy.

Muscle Weakness

Narcolepsy and cataplexy go hand in hand with many narcolepsy patients. Cataplexy is a temporary, short-term loss of muscle control that may occur either in a small area (such as the mouth or eyes) in larger areas, or indeed, throughout the entire body. People who experience narcolepsy with cataplexy sometimes drop what they are holding or are unable to stop their head from nodding. Or they may have difficulty speaking for a few seconds or a couple of minutes. How often someone will experience this muscle weakness varies from person to person.

Hallucinations

These are not hallucinations in the sense of those experienced by LSD (6) users. Rather, they are a lingering effect of waking during REM sleep, something that often happens to people with narcolepsy. Waking in such a manner can result in feelings or visions from their dreams being carried over into the conscious state for a short time. As a result, the person is often quite confused and unsure whether they are awake or not. Typically, after a few minutes normalcy is restored, though there may be a lingering sense of disquiet.

Grogginess

People with narcolepsy often go through the day feeling somewhat disconnected and mentally groggy. They’re unable to think clearly, have difficulty making decisions and may become irritable or confused. Obviously, there are other conditions that can cause a person to feel that way, including insomnia and depression. That is why it is so vital that you get an accurate diagnosis of your true state before deciding on a treatment regimen.

Sleep Paralysis

At some time in their life most people will experience a moment of sleep paralysis (7). This is when you are on the verge of going to sleep or just waking up, and you discover your muscles will not respond. For most people this is an extremely isolated occurrence, but for narcoleptics it may be a recurrent problem. If you experience sleep paralysis more than once in a relatively short period of time it may be a sign of narcolepsy and you should discuss it with your doctor.

Falling Into Dreams

REM sleep is when we do most of our dreaming. This phase of the sleep cycle typically occurs anywhere from 1 to 2 hours after falling asleep. However, many people with narcolepsy often find themselves falling directly into dreams when they go to sleep. With others it may take 10 or 15 minutes, but that is still far quicker than normal. If you start dreaming very quickly after falling asleep, and do so on a regular basis, it may be a sign of narcolepsy and you should discuss it with your doctor.

Facial Spasms

Many people with narcolepsy experience facial spasms. This is somewhat the opposite of the muscle weakness we looked at earlier. Rather than the muscles going limp, they will spontaneously activate, and the person may seem to be grimacing or making bizarre movements with their mouth or eyebrows. This symptom is more common in young people with narcolepsy than with older people. Why is that? Unfortunately, we do not have an answer to that question.

Sleep Disruptions

Most of us associate narcolepsy with an inability to stay awake during the day. But many people with narcolepsy also find it difficult to stay asleep at night (8). They may have a hard time getting to sleep, or wake up multiple times per night, or both. This is often one of the few narcolepsy related symptoms that has a tendency to get worse with age. Although that might have more to do with simply getting older than with narcolepsy, since many older individuals have a harder and harder time getting a good night’s sleep.

Very Vivid Nightmares

Everyone has a bad dream from time to time but those with narcolepsy often experience regular and very vivid nightmares. These extreme bad dreams may even begin before the person is fully asleep with dream imagery imposing itself over what their eyes are seeing. The effect can be very jarring and disturbing and blur the boundary between the real world and the dream world. If this sort of thing has happened to you more than once you should bring it up with your doctor.

Treatments for Narcolepsy

Narcolepsy is an incurable condition but there are treatments available that can help some people manage their symptoms and find a degree of relief. Those treatments include…

Stimulants

It makes sense that, since narcolepsy can leave people feeling absolutely drained much of the time, that stimulants would be used to treat their condition. Provigil (9) is one of the most popular stimulants prescribed for those who experience daytime drowsiness, whether the cause is narcolepsy or something else. Doctors tend to prescribe it for narcolepsy because it has relatively few side effects, and does not pose a serious risk of addiction.

Other stimulants that are sometimes used to treat narcolepsy include methamphetamine, dextroamphetamine and methylphenidate (Ritalin). Doctors are often reluctant to prescribe these medications, however, because they carry a greater risk of dependency. They can also produce some significant side effects such as insomnia and moodiness, and withdrawal symptoms can be fairly intense as well.

Antidepressants

Doctors will often prescribe antidepressants for narcolepsy including Prozac, Serafem, Zoloft, Effexor and others. These medications have been judged to be effective in reducing cataplexy as well as incidents of hypnagogic hallucinations (10) and sleep paralysis.

Behavioral Modification

It is not unusual for people’s lifestyle choices to exacerbate symptoms of narcolepsy. Therefore, sleep professionals will often recommend modifying various aspects of one’s behavior in order to mitigate narcoleptic symptoms. This may include making sure you get to bed at the same time every night and waking up at the same time as well. If a person with narcolepsy works a night shift it may be recommended that they either seek a daytime shift on their current job or get a different job where they can work a more traditional schedule.

In addition, people with narcolepsy often try to compensate for their feelings of fatigue by drinking large amounts of coffee. This can have a negative effect on their ability to get the restful sleep they need. Finally, there are some who promote the use of the ketogenic diet to treat narcolepsy. They point to the fact that the keto diet was created to help adolescents with epilepsy (11), which is true. But epilepsy and narcolepsy are two different conditions and there is no concrete evidence that the keto diet will help control the symptoms of narcolepsy.

FAQs

Is There More Than One Kind of Narcolepsy?

There are two generally recognized forms of narcolepsy. The first is narcolepsy with cataplexy (12). The other is narcolepsy without cataplexy. Cataplexy is not confined to those with narcolepsy, but some 70% of narcoleptic individuals experience some degree of cataplexy. Cataplexy is accompanied by a short-term loss of muscle control that may include a slackening of the facial muscles and/or weakness in the hands or legs. During cataplexy the person does not typically pass out. Instead, they are fully aware that they’re suffering muscle weakness and remain aware until it passes, which usually happens in a few seconds to a few minutes.

Can I Have Narcolepsy and Not Know It?

Depending on who you believe anywhere from 50% to 75% of people with narcolepsy go undiagnosed. It’s likely that many don’t seek treatment simply because they believe their symptoms are symptoms of another condition, like chronic fatigue (13), or even depression (14). Or they may convince themselves that their symptoms are just a matter of not getting enough sleep and that at some point they’ll start sleeping more. In any event, the answer to the question is, yes. Many people have narcolepsy and don’t know it.

Can Narcolepsy Be Cured?

At this point in time there is no known cure for narcolepsy, although certain gene therapies conducted on animals are showing promise (15). That said, there are a limited number of treatment options available that may help. Those treatments include the drug modafinil (16), certain antidepressants, and/or sodium oxybate. In other cases your doctor may recommend lifestyle changes (17) such as more frequent planned naps, regular exercise and going to bed and waking up at the same time every night.

Can I Pass Narcolepsy on to My Child?

This is something that has been studied extensively and, as of this writing, there is little evidence of narcolepsy being a genetic condition (18). Most cases occur in people who have no history of the condition in their family.

Does Narcolepsy Get Worse With Age?

There is no cure for narcolepsy, at least not yet, but there is also no evidence that it gets worse with age. In fact, the opposite is more likely to happen. That is, there are more cases of narcolepsy symptoms improving over time than worsening over time. This may represent cold comfort for some people with the condition, but no having to worry about it getting worse should alleviate at least one worry.

Can Narcolepsy be Fatal?

Narcolepsy does not pose a clear and present danger to health the way something like sleep apnea (19) can. Nor is it a progressive disorder. That is, as we just mentioned, it’s not likely to get worse over time. As such, it’s not a condition that in and of itself is likely to cause death. However, it is possible, though by no means common, that a narcoleptic episode could cause a person to have an accident while driving, or while operating machinery, and that the accident itself could have dire consequences. As for whether narcolepsy increases a person’s overall odds of dying prematurely, there is precious little evidence to suggest that.

Is Narcolepsy Considered a Disability?

For reasons known only to the SSA, narcolepsy is not on the Social Security Administration’s list of disabilities that automatically qualify for benefits. That said, obtaining benefits may be possible if symptoms are severe enough and do not respond to treatment. The SSA provides very strict guidance on this subject (20), which you should review before deciding whether or not to file a claim.

What If I Don’t Have Any Symptoms?

If you don’t have any symptoms of narcolepsy you should consider yourself fortunate because you likely do not have the condition. However, it is possible that you have symptoms that you have been wrongly attributing to something else. That bottom line is that if you suspect you may have narcolepsy you should consult your doctor who may refer you to a qualified specialist who can make a proper diagnosis.

Why Don’t I Fall Asleep While Out With Friends?

It is extremely rare, almost unheard of, for someone to suddenly fall asleep at a restaurant table while eating, or slump to the floor in the dance club. What sometimes happens, though, is that people feel a sudden strong urge to sleep and excuse themselves. They then go to their car and catch a quick nap, or fall asleep on the subway or in a taxi while going home. The bottom line is that it’s unlikely you’re going to fall asleep while walking or in the middle of a conversation. Instead, you will be lacking the kind of stable awake state that most people experience.

Can Narcolepsy Go Away on its Own?

There are no confirmed cases of narcolepsy going away on its own. That’s because it is believed to be caused by damage to neurotransmitters called hypocretin or orexin (21). This neurotransmitter plays an important role in regulating sleep, and once it is damaged, there is no known way to repair it. However, while narcolepsy will not disappear entirely on its own it is not unheard of for symptoms to lessen somewhat over the years.

Can Drinking Coffee Help Narcolepsy?

Because narcolepsy interferes with what should be a person’s stable waking state many seek help from coffee or other caffeinated drinks. For some of them a cup of coffee may reduce drowsiness and help them be more alert. But the effects are not uniform from person to person. Some with narcolepsy may see no benefit. While for others, the side effects they experience from the caffeine are too high a price to pay for the benefits they experience. Those potential side effects include jitters, increased anxiety, and worst of all, insomnia. If you decide to try coffee to alleviate your narcolepsy symptoms, make sure you don’t drink too much or drink it after dinner.