Living with Narcolepsy: Symptoms, Causes, and Effective Treatment

Narcolepsy is a complex neurological disorder marked by sudden, uncontrollable sleepiness during the daytime, often accompanied by muscle weakness. Having narcolepsy can dramatically disrupt one’s daily life and well-being and potentially cause dangerous situations.

Since narcolepsy is not just simple sleepiness, it’s crucial to understand the disorder. Below, we will learn about what narcolepsy is, its symptoms, similar medical conditions, and potential causes, and explore available treatment options.

What is narcolepsy?

To completely understand narcolepsy, we have to start with what narcolepsy is not. Narcolepsy and similar sleep disorders like hypersomnia are often confused for plain old sleepiness. However, this is not the case.

One of the definitive characteristics of narcolepsy – compared to regular tiredness – is that you can’t fix it by simply sleeping more. Another hallmark sign of narcolepsy is that it’s different from just being tired, as it causes actual sleep attacks where it’s almost impossible to stay awake and function normally.

Types of narcolepsy

We can distinguish two types of narcolepsy. It’s crucial to get a proper diagnosis to determine which type you have because underlying causes and treatment options are different for the two.

Narcolepsy Type 1

Type 1 narcolepsy is more common. It’s sometimes referred to as narcolepsy with cataplexy. Cataplexy is the sudden loss of muscle tone while one is awake. It causes muscle weakness and the inability to control one’s muscles. Episodes of cataplexy could be triggered by strong emotions like laughter or anger, but they might also occur randomly. These episodes might last from a couple of seconds to a few minutes. Other signs of type 1 narcolepsy might be sleep paralysis, hallucinations, insomnia, and sleep drunkness.

Type 1 narcolepsy is often associated with low levels of hypocretin – also known as orexin – a protein that helps regulate sleep.

Narcolepsy Type 2

Type 2 narcolepsy is more rare and more challenging to diagnose. The main reason behind this is that while it has similar symptoms to type 1, cataplexy is not one of them, which makes the condition less apparent. Another difference is that type 2 narcolepsy might appear even with normal hypocretin levels, which leads scientists to believe that it might be related to how this protein travels in the brain instead of its deficiency. However, the causes behind type 2 narcolepsy are not entirely clear yet.

While this form of narcolepsy might have similar symptoms, like sleep paralysis, hallucinations, insomnia, and sleep drunkness, they usually occur less frequently. On the other hand, excessive daytime sleepiness might cause the same amount of discomfort in both cases.

Secondary narcolepsy

The third type of narcolepsy is relatively rare, and – as the name suggests – it’s always caused by some other underlying condition, like a brain injury, a tumor, inflammation, or multiple sclerosis.

Narcolepsy symptoms

Narcolepsy symptoms in adults are typically similar across both types of narcolepsy. With narcolepsy type 2, these are usually milder and less frequent. One notable difference is cataplexy, as type 1 causes cataplexy while type 2 does not.

Common signs of narcolepsy are:

• Excessive daytime sleepiness – Also referred to as hypersomnia, this symptom often manifests as episodes of extreme tiredness, called sleep attacks, during the day, hindering everyday function and making it hard to stay awake even in situations where maintaining focus is essential.
• Cataplexy – As mentioned above, cataplexy means the sudden loss of muscle tone and sometimes muscle control. It is the hallmark symptom of narcolepsy type 1, but it never appears with type 2.
• Restless sleep – Various sleep problems often go hand in hand with narcolepsy. People with narcolepsy might experience sleep paralysis, automatic movements during sleep, and changes in their REM sleep pattern. These all lead to restless nights and difficulty staying asleep.
• Decreased mental capacity – The tiredness associated with narcolepsy may lead to slower thinking, memory problems, slow speech, headaches, and other problems that make it harder to function during the day.
• Hallucinations – Sometimes narcolepsy is accompanied by hallucinations. These most often occur around falling asleep or right before waking up.
• Sleep drunkenness – Waking up in the morning is usually a challenge with narcolepsy, and some people experience sleep drunkness after getting out of bed. During this time, your mind is not fully awake yet, even tho your body seems like it is.
• Automatic behavior – People with narcolepsy may experience being half awake, talking, and walking like normal but having no memories of events during this time. Automatic behavior can occur during the day or even when you’re asleep at night.
• Mental health problems – Narcolepsy may cause a lot of stress in your daily life, and being tired all the time can hinder your ability to function. These might lead to various mental health issues ranging from anxiety to irritability, depression, and more.

These symptoms might vary from person to person, and not everyone experiences all of them. Furthermore, narcolepsy can appear in tandem with other sleep disorders, making it harder to identify the symptoms.

Narcolepsy causes

The causes of narcolepsy are not entirely clear yet.

Type 1 narcolepsy is associated with low hypocretin levels, but the exact reason behind this is unknown. Some research points to an autoimmune condition destroying hypocretin-producing cells, and there might also be some connection to the swine flu virus.

However, people with type 2 narcolepsy have normal hypocretin levels and still experience narcolepsy symptoms, except cataplexy.

Genetics might also be a risk factor for narcolepsy, but only to a small degree.

Diagnosing narcolepsy

Diagnosing narcolepsy is a multiple-step process, as it shares similar symptoms with many other conditions, like sleep apnea, epilepsy, depression, and hypothyroidism.

First, doctors will ask you about your symptoms and family history. They might also ask you to complete an Epworth sleepiness questionnaire or to keep a sleep diary for a few weeks before your appointment. These could help them assess your sleeping habits and how sleepy you get during various daily activities.

Physical examinations and blood tests can help rule out other possible conditions.

During the diagnosis process, doctors might order a sleep test called polysomnography. This comprehensive test is performed at a sleep center during an overnight stay. Doctors will measure various factors, such as brainwaves, eye movements, airflow, blood oxygen levels, heart rate, blood pressure, muscle tone, etc. In addition, a multiple sleep latency test might help determine how quickly you can fall asleep and enter REM sleep, a hallmark symptom of narcolepsy.

Doctors might also measure hypocretin levels or look for a genetic marker associated with narcolepsy.

Narcolepsy treatments

Narcolepsy is a chronic condition that has no known cure yet. Treatment usually focuses on alleviating the symptoms and lessening their effects on patients’ everyday lives.

There are two main approaches to treating narcolepsy: medicine-based methods and lifestyle changes.

Medications for narcolepsy

Doctors might recommend one of the following medications, depending on the severity of your narcolepsy, if you have other medical conditions, and how effective they prove to be in your individual case.

• Modafinil – Modafinil and armodafinil are commonly used to treat narcolepsy. These are stimulants that affect the central nervous system, improve focus, and reduce sleepiness. Doctors recommend it because they are less addictive than other alternatives and have fewer side effects.
• More potent stimulants – When other stimulants don’t work, doctors might prescribe stronger ones like methylphenidate or amphetamines. Adderall is a well-known example of these medications. While these pills are potent stimulants that may help you focus, they can also be very addictive.
• Medications for cataplexy – To counter episodes of cataplexy, doctors might prescribe one of the following medications: venlafaxine, fluoxetine, sertraline, tricyclic antidepressants like protriptyline, imipramine, and clomipramine, sodium oxybate, oxybate salts, or the stimulant pitolisant.

It’s important to note that some of these medications might have side effects such as sleepwalking, bed-wetting, heart problems, or nausea. Some of them, like amphetamine-like medications, might also lead to addiction.

Lifestyle changes and alternative remedies for narcolepsy

In addition to taking the prescribed medications, doctors might also recommend making some lifestyle changes that might help alleviate the symptoms of narcolepsy.

• Follow a sleep schedule – Going to bed and waking up at the same time, even on weekends, can help your brain adapt to a strict schedule, making it easier to fall asleep and improving the quality of your sleep.
• Optimize your environment – Sleeping in an optimal environment may improve your sleep quality significantly. You can use blackout curtains to make the room darker and white noise to drown out outside noises.
• Avoid certain substances – Nicotine, alcohol, and caffeine can disturb your sleep patterns and worsen the symptoms of narcolepsy, especially when consumed before bedtime.
• Stay active during the day – Daily physical activity can help you sleep better at night, among many other benefits. You don’t necessarily have to hit the gym. Even just walking for 20 minutes a day might do the trick.
• Take naps if you need to – Siesta naps can be beneficial for anyone, but they may be especially useful for narcolepsy patients. Taking 20-30 minute naps may reduce the daytime sleepiness associated with narcolepsy.
• Try alternative treatment methods – Alongside medications, alternative remedies like herbal teas, sleep patches, or meditation may help ease your symptoms and improve your sleep quality.