Many think of narcolepsy as funny, but this sleep disorder is no laughing matter. Narcolepsy is a rare neurological sleep disorder that affects only 0.05% of the population. Approximately, 1 in 2000 have narcolepsy or will develop the condition between the age of 10 and 30. Moreover, the condition seems to affect both men and women equally. The disorder is characterized by the brain’s inability to control the sleep-wake cycle. This means that people suffering from narcolepsy can all of a sudden start feeling overwhelming sleepiness during any time of the day. This can be extremely dangerous, especially if it happens while a person is behind the wheel, operating heavy machinery, or doing anything that could be dangerous if they fall asleep. Unfortunately, narcolepsy is a lifelong condition that can be really hard to live with, however, people with narcolepsy have their ways of dealing with the condition.
Narcolepsy is also characterized by drowsiness and one’s inability to stay awake. It is not that a person could fall asleep during any time of the day, but they also have a hard time waking up, or staying awake. Such a condition can be extremely disruptive to one’s day-to-day life, relationships with people, work, and most importantly, it can affect their health. As this chronic condition has no established cure, the majority of the people suffering from narcolepsy use dose-dependent medications that help them manage the symptoms .
Speaking of symptoms; some people don’t realize right away that they have narcolepsy. Apart from the excessive sleepiness, it can be hard to pinpoint one’s symptoms as narcolepsy. Because it can be easily confused with other sleep disorders, it is important to look at the symptoms that distinguish narcolepsy from other conditions. That is why we are going to look at the narcolepsy symptoms in the following paragraphs more thoroughly.
When it comes to narcolepsy, it is important to notice that this condition is not a result of inadequate sleep; lack of sleep, inability to fall or stay asleep. Narcolepsy appears during the daytime even though a person had a really good night’s sleep. It is believed that narcolepsy is a result of the brain’s loss of neurons that contain hypocretin, also known as orexin. Hypocretin is a protein that helps the brain stay awake and alert. Studies have shown that 90% of people who lack hypocretin also suffer from narcolepsy. Narcolepsy is more likely to appear during monotonous or boring situations, for example, during alecture, a boring conversation, or while watching television.
According to some publications, the symptoms of narcolepsy may be recognized during a neurological disease process. This would imply that narcolepsy itself is a symptom of some underlying processes or neurological conditions. That is why the medical community uses the term symptomatic narcolepsy where it appears due to a medical condition. Nevertheless, the main symptoms of narcolepsy are categorized into five groups. We will now take a look at each of the 5 symptom groups in more detail:
Cataplexy is a symptom of narcolepsy that occurs in 70% of patients with narcolepsy. It is usually referred to as narcolepsy with cataplexy by the medical community because cataplexy is a narcolepsy exclusive condition. Cataplexy is a condition characterized by sudden, involuntary muscle weakness or paralysis during the time of wakefulness. This condition is usually triggered by strong, intense emotions like anger, fear, surprise, and even laughter and excitement. It usually causes slurred speech, sleep paralysis, sleep-onset, REM periods, and fragmented night sleep. The muscle weakness can sometimes affect the whole body, but it usually only affects some parts. Cataplexy can also cause a number of other conditions, like drooping of the eyelids and the face, head drooping, and even falls. Thesymptoms of cataplexy usually last a short period, sometimes just a few seconds.
The causes of cataplexy are rather complex. It is believed, according to the REM sleep dissociation hypothesis, that cataplexy occurs during REM sleep. It occurs due to a loss of the neurons that produce hypocretin. As mentioned above, hypocretin is a protein responsible for the promotion of wakefulness during the sleep-wake cycle. Research conducted by the Journal of Clinical Investigation has shown that the loss of hypocretin is caused by an autoimmune response. The autoimmune response promotes the formation of antibodies, which in turn target and kill neurons in the brain that produce hypocretin. The symptoms of cataplexy associated with narcolepsy include cataplectic attacks with a full-body collapse, as well as:
- Jaw tremor
- Dropping of the jaw or head
- Facial twitching or flickering
- Unusual tongue movements
- Drooping eyelid or face
- Slurred speech
- Knee restlessness or trembling
- Inability to move completely
Cataplexy is usually diagnosed when one is diagnosed with narcolepsy. There are few tests that can actually help diagnose narcolepsy with cataplexy in accordance with the symptoms and the patient’s medical history. One such test is called the Multiple Sleep Latency Test (MSLT) and is usually given to determine whether a person suffers narcolepsy with cataplexy. The medical professional observes a series of five naps during the day, which enables the doctors to observe the sleep patterns as well as the cataplexy symptoms.
When it comes to cataplexy, it is important to bear in mind that a person can lose control of their full body any time. This can be extremely dangerous and is important to prevent and avoid injury. For people diagnosed with narcolepsy with cataplexy, it is essential to do the following:
- The patient should avoid sharp and glass-made furniture and overall potentially dangerous surroundings, as well as heights.
- The patient should be aware of stress management techniques, as stress can be a trigger.
- The patient should also avoid sleep deprivation, situations that are likely to evoke strong emotions, as well as driving and operating heavy machinery.
- Since there is no cure, the patient should follow the prescription medication, practice good sleep hygiene, and maintain a healthy lifestyle.
Excessive Daytime Sleepiness (EDS)
Excessive daytime sleepiness or EDS is the most common symptom of narcolepsy, as well as the first one to be noticed. The name of the symptom is pretty self-explanatory; EDS basically means that you get an irresistible urge to sleep during the day. EDS is usually accompanied by other symptoms, like extreme drowsiness, overwhelming fatigue, and an inability to stay awake even when one is trying their best to do so. As described by narcolepsy patients, EDS feels like a constant battle between sleep and wakefulness; a battle they usually lose.
EDS can vary in the way is manifests and intensifies. Excessive sleepiness can appear as a ‘sleep attack’ where the patient has seemingly no control over their sleepiness. Other times, EDS appears as one having extremely little control over their sleepiness, but they can eventually prolong it and manage it. However, the ‘sleep attacks’ are the most common and can occur at any time, any place. Just as cataplexy, EDS can be extremely dangerous if it occurs when a person is behind the wheel or operating heavy machinery. EDS can also occur during the most trivial situations, like speaking or eating. If a narcolepsy patient is doing something that does not require their immediate response, chances are they will slide into excessive daytime sleepiness as well.
EDS can have many effects on one’s health. However, the effect that is the most concerning one relates to the chronic cognitive effects. Patients with EDS would describe these effects as forgetfulness, confusion, difficulty thinking, slurred speech, blurred vision, and overall brain fog. EDS can leave a person feeling completely lost, aloof, not able to focus, hold a conversation, or concentrate on work. This state can last anywhere between 10 minutes to a few hours. This complete dissociation from the physical world as well as oneself is what makes EDS really dangerous for a person’s day-to-day functioning and life. According to the National Sleep Foundation, nearly half of people diagnosed with narcolepsy have fallen asleep while driving.
Disrupted Nighttime Sleep
Disrupted nighttime sleep is an important symptom of narcolepsy. People suffering from narcolepsy usually describe this as having fragmented sleep, characterized by frequent but brief awakenings during the night. Furthermore, disrupted sleep is also described as having difficulties returning to sleep upon awakening, as well as having an overall poor sleep quality. Approximately 81% of patients suffering from narcolepsy report disrupted nighttime sleep and multiple awakenings during the night.
Disrupted nighttime sleep is characterized by having hot flashes, increased heart rate, and intense alertness. People suffering from narcolepsy find this incredibly frustrating because they experience excessive daytime sleepiness, but during the night have fragmented sleep. Some studies have shown that people who have disrupted nighttime sleep are more likely to experience fatigue, lack of energy, significant weight gain, and can develop chronic sleep deprivation. The immune system gets affected as well, therefore people with narcolepsy are frequently ill, experience mood swings, injuries, headaches, and even seizures. In some patients, disrupted nighttime sleep can turn into insomnia, where they on average receive one to two hours of sleep during the night.
It has been reported that some patients with narcolepsy tend to experience vivid hallucinations during the onset of sleep. Patients have described these hallucinations as related to the feeling that someone or something is their bedroom. That someone or something was intangible for these patients, yet they could see and hear it/them perfectly. This, in turn, triggered intense emotions of fear, dread, and promotes instant wakefulness and an inability to fall asleep at all. These patients also stressed over the realness of their hallucinations, or the fact that they could not distinguish between a dream and reality.
One study revealed that patients who have narcolepsy with cataplexy are more likely to experience these hallucinations. Among 100 patients with narcolepsy, 59% had narcolepsy with cataplexy and hallucinations. Those who had narcolepsy without cataplexy experienced few hallucinatory episodes (28%), and the rest had no issues with hallucinations. Moreover, those who had narcolepsy with cataplexy were also more likely to experience auditory hallucinations than visual ones.
One clinical trial conducted by the Department of Neuropsychiatry in Kurume, Japan, observed a 51-year-old female patient who suffered from narcolepsy. She reported hallucinations and delusional states, even after she had undergone treatment. It was interesting to see that this patient had sleep attacks, sleep paralysis as well as cataplexy. Her hallucinations were described as triggered by all of the previous states and conditions, adding to her delirium and psychotic states. It has been concluded that her hallucinations and psychotic states were directly related to narcolepsy with cataplexy.
It should be noted that hallucinations are a symptom of sleep deprivation as well and can occur in individuals without narcolepsy who become seriously sleep-deprived.
Sleep Paralysis is the last of the five main symptoms of narcolepsy. It usually occurs with the onset of hallucinations, or in the transition period between sleep and wakefulness. A patient suffering narcolepsy experiences sleep paralysis in a rather unique way. Sleep paralysis is described as one’s inability to move while being completely aware of the physical environment. In this state, a patient might also start hallucinating, seeing, hearing, or feeling something that is not necessarily there. At this point, similarly to hallucinating, a patient may start experiencing fear, dread, or panic due to the vulnerability caused by the lack of ability to move. This can cause people with narcolepsy to develop sleep anxiety and an overall negative association when it comes to sleep. It can further their already disruptive sleep pattern and cause even less sleep, more insomnia, with accompanying behavioral and psychological effects. Some of the symptoms and effects of sleep paralysis include:
- Limb numbness
- Rapid and strong heartbeat, increased heart rate and blood pressure
- Sweating and moaning
- Eye fluttering
- Chest pressure and an inability to breathe
The physical, muscle paralysis is in many patients accompanied by vivid, photo/phono visualization of the perceived reality at that moment. The so-called perception of reality while experiencing sleep paralysis can seem as if the patient is completely awake. That would explain the self-awareness and ability to recall everything that happened during this state. Self-awareness and metacognitive abilities seem to always be intact, enabling a smooth transition between wakefulness and sleep. It also enables effective awake interpretation of what was seen or heard. Sleep paralysis allows a smooth transition into hallucinations or a delusional state. Therefore, sleep paralysis can be divided into three stages of sleep paralysis experience:
- Intruder – the first stage is usually characterized by the felt presence, which further evolves into either visual or auditory imagery. Just as with hallucination, this stage is usually described by narcolepsy patients as the moment one feels a presence in the room, near or behind them or somewhere else in the house. It causes a rush of adrenaline and fear, panic, and dread.
- Incubus – appropriately named Incubus, this stage stands for a perceived attack coming from the felt presence. Patients with narcolepsy describe this stage as having difficulty breathing, being choked or smothered, and feeling chest pressure and pain. The patient often feels the presence as being on top of them, assaulting them directly, hence the name Incubus. (Incubus is also known as demon lover, assaulting women as they’re asleep; usually described as burden or weight.)
- Unusual Bodily Experience – this stage occurs rarely and might be the only positive thing about sleep paralysis. The feeling is usually described by the patients as floating, feeling of bliss or an out-of-body experience. It usually provides pleasant sensations, therefore it is not generally recognized as harmful by medical professionals.
Narcolepsy is a truly fascinating condition. It allows us to see how a slight defect in the balance of proteins in the brain can make the whole body fall out of harmony. Because it is such a weird occurrence, and because people aren’t usually aware of its existence, it is important to consult a medical professional with the onset of the first symptoms. Oftentimes, narcolepsy remains unrecognized for years, as there can be delays between sleep attacks. Nevertheless, it should be brought up at the regular medical check-ups. Unfortunately, there is no concrete treatment that can help you get rid of narcolepsy once and for all. However, there are medications that can help manage the condition. The medication is effective in establishing a regular sleep pattern, as well as understand the warning signs before a sleep attack occurs.