Narcolepsy is a surprisingly common condition that’s frequently misunderstood. If you experience excess sleepiness during the day—whether or not you get enough sleep at night—you’re no doubt wondering ‘Do I have narcolepsy?’ But it’s about far more than just feeling sleepy.
Narcolepsy doesn’t just involve excessive feelings of sleepiness. It’s a wide-ranging condition with many different symptoms. It also has a variety of consequences. That’s why it’s all the more important that you can get an early diagnosis for this sleep condition so that you can find out what’s wrong and start treatment without delay.
In this guide, we explore exactly what narcolepsy is, what causes it, and the early warning signs. We will also provide some must-know tips for living with narcolepsy. If any of that sounds like it could help you identify and cope with your condition, take a look below.
What is Narcolepsy?
Narcolepsy is characterized by sudden sleep attacks—which almost sounds like an oxymoron. However, it’s the perfect way to describe them. You might also not know that the term ‘narcolepsy’ comes from the Greek for an attack of numbness.
One moment, you’ll be going about your day. You could be walking down the street, driving, or watching a movie with friends. All of a sudden, you fall asleep, as if somebody clicked their fingers and you nodded off immediately. This is common for narcoleptics and is the first of many signs that you have the condition.
Common experiences include:
- Dozing off while standing up
- Narcolepsy while reading, or narcolepsy when stressed
- Seizure-like collapses following intense emotional events, either positive or negative
Medically speaking, it is a neurological disorder. It affects the part of the brain that regulates your sleep patterns. However, the brain is a complex organ. As such, the effects of narcolepsy are more complex than the paragraph above suggests. It’s relatively rare and only affects around 600 per 100,000 people. Onset typically occurs in the teenage years and lasts for the rest of your life. However, it can be triggered or exacerbated by certain health problems.
Why Is Narcolepsy Dangerous?
Narcolepsy, in and of itself, is not a dangerous condition. Living with narcolepsy is possible, and it doesn’t seem to have any long-term health effects. However, it’s the situations that may occur because of narcolepsy that can be dangerous. So, for example, you might find that you experience narcolepsy while driving or walking down the street.
Narcolepsy when drinking can also be dangerous. Any situation where you lose control of your body while drinking is unsafe. These attacks can be worrying, and are easily confused with seizures. However, the underlying mechanism for narcolepsy is different from that behind seizures. There is no inherent danger in an attack. That being said, it’s still worth trying to treat the condition, or talking to a doctor about it.
What Are the Early Warning Signs of Narcolepsy?
There are five key signs that you might have narcolepsy. These are the five that are used by doctors to make an informal diagnosis. You may experience one, none, or all of these during the early onset of the condition. It varies person by person, so don’t take the five signs below as definitive. However, they are by far the most common.
The guide below takes a look at each symptom in turn. Afterward, there is a brief section on the methods of diagnosis that doctors frequently use.
1) Excessive Daytime Sleepiness
The primary symptom of narcolepsy is excessive daytime sleepiness (EDS). This symptom is felt as a consistent, persistent sleepiness and a general lack of energy whatever the time of day. Contrary to popular belief, this is not related to the amount of sleep that a person gets at night. A person with EDS feels tired throughout the day no matter how much sleep they had.
EDS is normally a symptom of another, more serious problem. One example is, of course, narcolepsy. However, it is also related to sleep apnea and circadian rhythm sleep disorders. Whatever the cause, persons with EDS feel the urge to sleep throughout the day. This leads to them taking repeated naps.
This urge strikes whatever situation the person is in. As such, they may feel tired when they’re watching TV—that would be natural for anybody. However, a person with EDS can feel sleepy whether they’re watching TV, reading, cooking, jogging or driving. This urge can express itself either as a persistent feeling or as a sudden attack.
That being said, the feeling of sleepiness in EDS isn’t different to extreme sleepiness in the general population. As the urge to sleep becomes stronger and stronger, so too does the ability of the person to do anything diminish. You may find it impossible to complete normal, everyday tasks because of how exceptionally tired you feel. As you can imagine, excessive daytime sleepiness makes it difficult for a person with narcolepsy to function in everyday life.
Cataplexy is a condition characterized by a complete loss of muscle control. The condition strikes suddenly, but fortunately also passes quickly too. It is accompanied by a complete awareness of one’s surroundings. You don’t necessarily fall asleep during the onset of cataplexy, which can be frightening.
The causes of cataplexy are not completely understood. It seems to be related to a particular neuropeptide called hypocretin (or orexin). In short, if the brain doesn’t produce enough hypocretin, it has trouble regulating wakefulness. A lack of it can also lead to cataplexy. Some people can have cataplexy without narcolepsy, although the reasons why are unknown.
Uniquely, cataplexy is triggered by high emotion. A person may be laughing, crying, or horrified. As such, onset can be surprising and frightening, for the person and for those around them. Signs of cataplexy range in severity. During the early and more moderate stages of the condition, a person with narcolepsy may notice only minor signs. Like stroke, these can include a slight slackening of the facial muscles. This may be difficult to spot.
However, the most severe cases result in a complete lack of muscle control. In severe cases, the jaw will drop, the neck will go weak, and your knees might buckle. Complete collapse is common. During the attack, you may not be able to speak or may speak with a slurred voice. Your hearing and awareness are entirely unaffected.
3) Hypnagogic Hallucinations
Hypnagogic hallucinations are a particular kind of hallucination that occurs immediately before one falls asleep. They are associated, although not exclusively, with narcolepsy. Roughly one in four people will have them at one point or another during their lives. They affect men and women and can begin at any time in a person’s life. That being said, they are most common in young people.
In terms of experience, they are not dissimilar to normal hallucinations. You may notice either auditory or visual hallucinations or both. Hypnagogic hallucinations are typically very vivid, and often involve images of people, shapes, and colors. Auditory hallucinations can range from the sound of people talking, to protracted melodies.
The precise cause of these hallucinations is unclear. They appear to be triggered by alcohol or drug use, stress, and sleep disorders like narcolepsy and insomnia. They are harmless, although they may disrupt your sleep. In so doing, they further the sleep troubles you might also have narcolepsy. Treatment for your condition as a whole is the only way to tackle hypnagogic hallucinations.
Since hypnagogic hallucinations are not exclusively associated with narcolepsy, they are not necessarily an early warning sign. However, they may be a sign of narcoleptic onset if you have never had them before.
4) Sleep Paralysis
Sleep paralysis is precisely what the name itself suggests. During an episode of sleep paralysis, a person feels conscious, and can sometimes observe their environment. However, the person will be unable to move, aside from breathing and moving the eyes. This experience is typically frightening.
Sleep paralysis is often accompanied by hallucinations. This is because the brain is in REM sleep mode—the stage of sleep during which dreams occur—while the person is awake. It’s unclear why this happens, but the results are easy to understand. A person going through sleep paralysis is essentially dreaming while awake, sometimes with their eyes open.
During sleep paralysis, it’s common to feel the following:
- A difficulty breathing, caused by a feeling of pressure on the chest
- As if there is somebody else in the room with you
- Anxiety, fear, even terror at the idea of not being able to move
Occasionally, sleep paralysis can last a number of minutes. The amount of time varies between attacks. Certain factors can trigger sleep paralysis. These include not getting enough sleep, irregular sleeping patterns, narcolepsy, and a familial history of sleep paralysis.
Again, sleep paralysis is far from exclusive to narcolepsy. But if you experience an onset of sleep paralysis later in life, especially alongside other symptoms, they could count as an early warning sign of the condition.
5) Sleep Disruption
If you have narcolepsy, you will almost certainly have to live with general sleep disruption. Because you increasingly sleep during the day, you will have trouble sleeping at night. This includes difficulty getting to sleep when you want to, which can be exceptionally frustrating.
You may also wake up frequently during the night. This exacerbates your tiredness during the day. That being said, excessive daytime sleepiness occurs whether or not you slept enough the night before.
These symptoms are the five most common for narcoleptics. You might have noticed that together, they form the acronym ‘C.H.E.S.S.,’ which makes them easy to remember. However, they aren’t the only symptoms you might have.
- Automatic Behavior. Automatic behavior refers to the body’s ability to continue performing repetitive tasks while ‘asleep.’ After an occurrence of automatic behavior, the person cannot remember any aspect of what they were doing. Putting the dishes away and driving are two examples.
- Restless Leg Syndrome. A study in the journal Sleep found that restless leg syndrome is frequent in narcoleptics. They weren’t entirely sure of the reason for the relation between the two. Another study in the same journal hypothesized that it might be related to side-effects of a particular medication.
- Because narcolepsy is associated with poor sleep generally, you may also be diagnosed with insomnia.
Each of these symptoms is less common than the five listed above. That being said, they can help prove that you have narcolepsy rather than some other condition. If you’re not sure, you have narcolepsy, noticing your symptoms above is most certainly a sign.
Non-Medical Early Warning Signs of Narcolepsy
However, you don’t necessarily have to think medically: there are plenty of hidden ways that narcolepsy might affect you, and which are definite ‘warning signs.’ These could be signs of many different conditions, however. The best way to check if you have narcolepsy or not is always going to be through a diagnosis of direct symptoms.
So, how does narcolepsy affect the brain? Let’s take a look.
1) A Feeling of ‘Fogginess’
Narcolepsy isn’t just about falling asleep during the day. It’s also about problematic sleep during the night. This is because a) you wake up more often, and b) your REM sleep patterns are not optimized for proper rest. This means that your body isn’t prepared sufficiently for the day ahead.
This isn’t an obvious symptom in the way that, say, spots are a clear sign of chickenpox. Instead, this expresses itself as a feeling, akin to ‘fogginess.’ This is because your mental processes, including memory and concentration, are not at the optimal level. It can be the result of a range of conditions, from multiple sclerosis to fatigue and fibromyalgia. However, it’s also associated with narcolepsy.
This feeling of fog can:
- Make you struggle to remember relatively basic information
- Cause confusion and disorientation during relatively basic tasks
- Make it more difficult to follow conversations
- Make it more difficult to calculate sums and solve problems
If you notice any of these factors during your daily life, especially if you never have before, it could be a sign of narcolepsy.
2) A Decline at Work or School
At the same time as you notice a feeling of fogginess, you may also notice a decline in performance either at work or school. This is directly related to the fogginess you may be experiencing. Since your reasoning and processing skills are impaired, your cognitive ability goes down. This is reversible, however, once you treat the related condition.
This is related more generally to both physical and mental fatigue. While the effect of fatigue is commonly known, the effects of over-tiredness have received little scientific attention. Fatigue affects a person in three ways: regarding muscle activity, communication between the brain and the muscles, and in the brain itself. It is the effect on the brain itself that is most of the interest here.
A study in the Reviews in the Neurosciences journal found that prolonged overwork and stress cause physical damage to the brain. The same applies to fatigue as a result of lack of sleep, since this generates intense neural stress. This is the reason why you might experience narcolepsy when bored, or narcolepsy while pregnant.
3) Falling Asleep at Awkward Times
During the initial onset of narcolepsy, you’re almost guaranteed to notice excess tiredness. This manifests itself as falling asleep at awkward times. This includes times at which somebody wouldn’t typically fall asleep.
So, for example:
- Falling asleep regularly while watching TV or movies, even if you don’t want to
- Falling asleep when with friends or family
- Falling asleep in public, even if it feels embarrassing to do so
- Falling asleep regularly on public transport
Bear in mind that falling asleep at awkward times happens to everybody. In particular, almost everybody finds it easy to fall asleep on public transport. However, this is normally after a late night or early morning. People with narcolepsy fall asleep at awkward times no matter how much sleep they had the night before. They also fall asleep at awkward times on a regular basis, whether or not it’s embarrassing, too. If that sounds like you, then narcolepsy might be the likely cause.
4) Emotional Impact
Something that is easily ignored during discussions of narcolepsy is the emotional toll it takes. Narcolepsy isn’t a condition that you can hide, because when you fall asleep, it’s obvious to everyone. This is especially the case if you’re falling asleep at awkward times.
Consider the following:
- Does falling asleep so easily frustrate you? Does it make you feel upset or angry?
- Does falling asleep at awkward times feel embarrassing, especially if you’re among friends?
- Do you feel irritable or frustrated as a result of tiredness and fatigue?
- Does falling asleep make you feel angry, or even aggressive?
None of these emotional impacts are necessarily a direct result of narcolepsy. However, part of the brain affected by narcolepsy is the hypothalamus. This part of the brain is responsible for regulating hunger, thirst, response to pain, anger and aggressive behavior as well as sleep. It’s therefore little wonder that narcolepsy can go through intense emotional responses.
People with narcolepsy often report these exact feelings. If you feel them too, remember that you aren’t alone.
How to Get a Narcolepsy Diagnosis
There are many ways that a doctor can assess and diagnose somebody’s narcolepsy. Before any physical exam or sleep study, a doctor will ask you many questions.
- Do you feel sleepy throughout the day?
- How many hours do you sleep on a typical night?
- When you wake up in the morning, do you feel well rested?
- If you nap, do you feel refreshed when you wake up?
- Do you experience anything unusual as you’re falling asleep, e.g., hallucinations?
- Do you ever collapse, or feel your muscles become weak suddenly?
Based on your answers, your doctor will feel it more or less likely that you have narcolepsy. If they feel you may have narcolepsy, your doctor will then have you go through many tests. The purpose of these tests is to see how you sleep.
Polysomnography is a test used to diagnose a variety of sleep disorders. The test involves the patient staying at a hospital overnight (or during the day, if you work late shifts). During their stay, the doctor will monitor your brain waves, the amount of oxygen in your blood, your heart rate and your breathing. They will also take note of anything unusual that they notice.
Polysomnography can help identify narcolepsy because narcoleptics enter the REM phase very soon after they fall asleep. In REM, your eyes start to move, and your brainwaves indicate that you start dreaming.
2) Multiple Sleep Latency Test
The multiple sleep latency test, or MSLT for short, is a more direct indicator of narcolepsy. In this test, the doctor measures how soon you will fall asleep in a quiet and comfortable environment. This test, unlike polysomnography, is performed during your regular waking hours.
The test takes place over an entire day. In it, you are scheduled to nap five times, each nap separated by a break. Each time they are scheduled to sleep, the patient will lie down and wait. For people without narcolepsy, falling asleep five times during the test would be practically impossible.
The environment is made comfortable, for instance by turning out the lights. The doctor will then measure how long it takes for you to fall asleep.
3) Blood Test for Narcolepsy
As a last resort, there is a blood test for narcolepsy that can assist a diagnosis. This form of diagnosis is only very sparingly used since other tests are far more effective. In the test, a blood sample is taken as usual. Your blood is then examined for antigens often found in the blood of those with narcolepsy.
It is also possible to perform a spinal tap to measure the amount of hypocretin in the cerebrospinal fluid. Again, there is little that this test can tell you that a sleep test cannot. If you are planning on going to the doctor for a diagnosis, expect a sleep study.
Who Might Be Affected by Narcolepsy?
Despite the number of people who claim to have the condition, narcolepsy is rare. That being said, the majority of cases are unreported and untreated. According to Narcolepsy Network, somewhere around 1 in 2,000 U.S. citizens has narcolepsy. That’s a total of 200,000 or three million worldwide.
However, Narcolepsy Network estimates that only about 25% of people with the condition receive treatment. They believe that misdiagnosis is common since sleeplessness is a symptom of so many other conditions. In the Journal Postgraduate Medicine, a study found that a total of 60% of patients were misdiagnosed, normally as depressed, or with insomnia and obstructive sleep apnea. While these conditions can occur together, the underlying narcolepsy was left undiagnosed and untreated.
Both men and women are affected by narcolepsy. The vast majority of studies suggest that each gender is affected equally. A small number of studies suggest that it might be more common in men. However, this could be due to many factors related to work and childcare. Further study is needed to settle the question.
Like many conditions, narcolepsy first rears its head during adolescence. Of course, though, it can occur at any time in a person’s life. Most people with narcolepsy are diagnosed between the ages of 20 and 40.
What Are the Causes of Narcolepsy?
Narcolepsy is a frustrating condition that seems to come out of nowhere. The frustrating thing is that you’ve no doubt tried sleeping more, avoiding coffee and more—but nothing seems to work. So why would you suddenly struggle to get to sleep, for no apparent reason? As it turns out, narcolepsy has many causes. Let’s take a look at each in turn.
The Chemical Science of Narcolepsy
Narcolepsy is usually caused by a lack of key chemicals in the brain, called hypocretins. These chemicals are neurotransmitters, which means that they send chemical signals from one neuron to another in the brain. When operating normally, they help your brain to regulate alertness and your sleep schedule.
Hypocretins are exclusively produced in the hypothalamus, by a relatively small group of neurons. In a typical brain, a person has billions of neurons; only 100,000 to 200,000 of these are hypocretins. However, those with narcolepsy have only a fraction of this small number. During times of wakefulness, your brain will produce more hypocretins, which then spread through the brain and attach themselves to other neurons. Simply put, this makes them more active and more alert.
Where does narcolepsy affect the brain? Right here. For one reason or another, the neurons that produce hypocretins can die off. This is the case in people with narcolepsy. If this is the case, two things happen. First, your brain is naturally less alert. Second, you’re unable to regulate REM sleep correctly. That’s why narcolepsy causes you to experience cataplexy and hallucinations. You’re literally dreaming while awake.
What Causes a Lack of Hypocretin?
Scientists are increasingly coming to understand why some people lack hypocretin. The first and most obvious answer is genetics. The majority of people with narcolepsy inherit a particular gene abnormality, in a gene which is usually essential for immune function. This gene regulates how the ‘human leukocyte antigen,’ or HLA, acts. A particular error in this gene increases the risk of narcolepsy by up to 25 times.
There are other genes with a smaller effect, but which compound the problem referred to above. Scientists believe that these errors cause the HLA to attack the neurons that produce hypocretin. Errors like these in the immune system cause autoimmune disorders such as rheumatoid arthritis and inflammatory bowel disease. In this case, the mistake just so happens to cause narcolepsy.
However, 12-25% of the population has this gene error, but not all have narcolepsy. Scientists theorize that there are triggers which encourage HLA to attack hypocretin neurons. A study in the journal Sleep found that sudden onset of narcolepsy is associated with streptococcal infection, which is the cause of strep throat. This is supported by evidence that suggests narcolepsy onset is more common in late spring and early summer. This implies that the autoimmune response against the brain’s neurons begins after a winter infection.
A case in Finland highlighted the problem. A brand-new vaccine called Pandremix, designed to prevent H1N1 flu was administered to most children and adults. The rate of new narcolepsy cases in Finland increased between 8 and 12 times, especially in children. Crucially, every child who developed narcolepsy carried the genetic mutation mentioned above. Few adults developed narcolepsy, which suggests that late onset is less common.
All of that being said, a lack of hypocretin isn’t the only cause of narcolepsy. About 10% of people who have narcolepsy, but still have the correct levels of neurochemicals in their brain. Scientists are unsure why this is the case.
Narcolepsy isn’t necessarily related to chemical changes, however. ‘Secondary narcolepsy’ is caused by brain injury, specifically to the hypothalamus. This region of the brain regulates sleep, and if damaged, can’t do its job correctly. People with secondary narcolepsy don’t tend to experience the same symptoms as those with normal narcolepsy. So, for instance:
- People with secondary narcolepsy don’t usually experience sudden muscle weakness, i.e., cataplexy
- People with secondary narcolepsy may also have severe neurological problems. This is because the condition can be the result of severe brain damage
A brain injury could be the result of an accident, or something even more severe. Tumors, infections, and diseases can all damage the brain. Narcolepsy can, therefore, be a sign of something more serious, which is why you should always talk to a doctor.
Can I Get Treatment for Narcolepsy?
The first thing you should know is that there isn’t a direct treatment for narcolepsy. There isn’t anything you can do that directly gets rid of it. That being said, there are many things you can do to improve your condition and your enjoyment of life.
Narcolepsy treatment revolves around sleep hygiene habits. Since there is no cure, your best bet is to learn how to live with it. You don’t need medication, and you don’t need to spend an awful lot of money either. In fact, regulating and improving your narcolepsy is as simple as following a few basic steps.
In no particular order, you should consider the following:
1) Improving Your ‘Sleep Hygiene’
Sleep hygiene is a relatively new term. It refers to how you prepare for sleep. If you have many poor habits, such as staying up late and watching TV, then you have bad sleep hygiene. By contrast, helpful habits that encourage you to get to bed on time are termed good sleep hygiene.
Try the following:
- Don’t use screens before bed, for at least an hour
- Drink chamomile tea (or other relaxing herbal teas) to help yourself wind down before bed
- Make your bedroom a more suitable environment for sleep, i.e., fewer distractions and more comfortable surroundings
- Use your bed only for sleep or for intimacy.
- Avoid eating or drinking too much before bed.
Since narcolepsy has a genetic and physical cause—the lack of hypocretins—a consistent sleep schedule can only do so much. However, sleep isn’t regulated by one factor. It doesn’t matter how much hypocretin you have in your system; if you do nothing but stare at a screen as you lie in bed, you’ll struggle to fall asleep whether or not you have narcolepsy. Following the sleep schedule and sleep hygiene tips above can therefore still help.
2) Keep to a Consistent Sleep Schedule
Narcolepsy can occur whether or not you get enough sleep. However, going to sleep at different times each night certainly won’t help. Try to keep to a consistent schedule to give yourself the best chance of sleeping better. This, of course, is easier said than done. Try taking sleep aids at scheduled times to increase your chances of sleeping on time.
Above all, make it easy for yourself to start falling asleep. Your ‘sleep schedule’ actually begins much earlier in the night; so, for example, you should eat at a set time each evening too. This helps you get to bed at the right time each night. You should also exercise for a set amount each day, in the evening if possible, to tire yourself out even more before bed.
Consider the following schedule:
- Eat at around 6:30 at night.
- Allow yourself time to relax afterward, whether that’s in front of the TV or reading.
- At 8:00, exercise for half an hour. Either cardio or strength training is fine.
- Shower afterward.
- From 9:00 onwards, avoid using screens, as mentioned above.
- Make sure you’re in bed at 10:30. This allows you time in bed to relax or spend time with a partner before sleep.
Again, these tips will have a limited but positive effect. Stick with them as much as possible to alleviate the worst of narcolepsy.
3) Find Emotional Support
As we mentioned above, narcolepsy can have intense psychological effects. It can make you feel frustrated, angry, embarrassed and more. It’s therefore vital that you find support, in any way possible, that can help you rationalize and understand your feelings.
Fortunately, there are many ways that you can do just that:
- Talk to your family about your narcolepsy. They might be able to give you insights: ways that they helped you with your narcolepsy when you were younger, or things that they’ve learned from reading about the condition.
- Talk to your friends if you feel comfortable doing so. They can help you put any embarrassment you feel into perspective. Make it something that both you and they are comfortable with. That way, you won’t feel as bad falling asleep in public.
- If necessary, talk to a therapist about your condition; there’s no shame in seeking help. A therapist could help you through the difficult emotional parts of narcolepsy.
If all else fails, try and take a more understanding view of your narcolepsy. Offering yourself understanding will help you avoid feeling too frustrated and unhappy. A good trick is to imagine how you would treat somebody else in your situation.
What Should I Do Next?
First things first, measure your symptoms against the early warning signs above.
If you notice at least three of the following symptoms, then it’s likely that you have narcolepsy:
- Excessive daytime sleepiness
- Falling asleep at awkward times
- Seizure-like collapses, where you lose control of your body (cataplexy)
- Hypnagogic hallucinations prior to falling asleep, or hallucinations once you wake up
- ‘Brain fog’ throughout the day due to chronic tiredness
Bear in mind that matching two, three, or all of these symptoms isn’t a diagnosis. If you want a true diagnosis, talk to a doctor. They will be able to give you a definitive answer one way or the other. Either way, they’ll be able to help. Until then, there are a number of home remedies you can try like chamomile tea and improved sleep hygiene.