An overview of narcolepsy 

Are you an individual affected by narcolepsy? Or are you aware of someone who suffers with the condition? In that case, you may know that narcolepsy is a long-term disorder of the brain in which sleep is fragmented and sleep/wake timings (your ‘sleep-wake cycle’) are highly disrupted. You may also know that as the day goes on, you begin to feel increasingly tired and may fall asleep without wanting to, while at night you may wake up at random times and experience altered sleeping patterns.

Since narcolepsy is not a well-informed topic in the general public, it is possible that you would like to know more about the sleeping disorder, particularly how it can affect one’s lifestyle. If so, then this is the article for you.¹

Although narcolepsy shows symptoms throughout one’s lifetime, the condition does not seem to negatively progress much subsequent to its onset and can actually get better with time, particularly with medication and lifestyle changes. Both males and females can be affected, and symptoms generally begin somewhat early in an individual’s lifetime.

Thankfully, research concerning narcolepsy is in full flow due to a considerable impact it can have on the quality of life, resulting from physical, social and psychological dysfunction as well as relationships, education and occupational work.²

Understanding narcolepsy

There are a range of further symptoms that patients with narcolepsy can experience during daily life including cataplexy- the sudden loss of ability to contract your muscles. The occurrence of cataplexy can vary dramatically patient to patient, from once in a lifetime to daily attacks. Furthermore, during the early and late stages of sleep, you can experience sleep paralysis in which you are unable to move or speak but feel consciously awake. This can be accompanied by visual hallucinations which tend to be quite scary.³

To help group symptoms and causes, narcolepsy can be divided into two types. Type 1 Narcolepsy is caused by a low level of sleep hormone located in the brain, and often involves symptoms shifted towards cataplexy.

This loss of sleep hormone in the brain, called hypocretin, can be caused by a self-immune response induced by a combination of genetic and environmental factors. Patients of Type 2 Narcolepsy appear to display regulated levels of sleep hormone, don’t experience cataplexy and therefore appear to have a more unusual diagnosis.²

Diagnosis of a narcoleptic patient 

If you are suspected of suffering with narcolepsy, you will undergo a clinical evaluation often involving a sleep journal to assess your sleep-wake cycle. Further tests may then be conducted to confirm the diagnosis, such as a polysomnogram, which looks at sleep-related characteristics involving eye movement, breathing, brain activity and muscle contractions.

This helps determine the quality of your sleep cycle. When the diagnosis is rather ambiguous, a more accurate measure of hypocretin sleep hormone can be made via a fluid sample taken around the spinal cord.⁴

Impact on your daily life

Various studies on narcoleptic patients consider that complications may occur in daily life associated with physical, social and emotional functions. Individuals with narcolepsy can find general life tiring, due to the lack of quality sleep, which reduces the amount of physical activity carried out. Lifestyles tend to become more sedentary than before and can coincide with a lack of social interactions, leading to a potential breakdown of relationships with family and friends.

Fatigue and weariness during the day also causes difficulties in maintaining concentration and as expected, educational performance can be hampered along with job performances, reflected by the struggle to maintain employment. Studies suggest you are also more prone to automobile accidents or accidents at work and home. In this modern age, employers are expected to cater for narcoleptics by accommodating a disrupted sleep-wake cycle, for example by adjusting working hours appropriately for the individual.^5,6

Impact on your quality of life

As inferred previously, the quality of life of individuals with narcolepsy has been shown to be significantly reduced from a physical, social and emotional standpoint when compared to non-narcoleptic individuals, but also when compared to those with other chronic diseases such as diabetes, epilepsy and high-blood pressure. This takes into account emotional stress, mental health, social functioning, physical functioning and bodily pain.⁷

In emotional and psychological words, you can suffer with mental health problems, commonly depression and anxiety as well as more general implications of reduced confidence, negative mood and lasting fatigue.⁸

As a result of the lack of sleep and disrupted sleep patterns characterised by the disease, energy levels can be low and time constraints can present by compensating for sleep. Due to a more sedentary lifestyle, this may lead to weight gain and, less commonly, obesity. Physical dysfunction also has the possibility of worsening other problems like depression and bad moods.⁹

Management of narcolepsy 

There are a range of routes in which narcolepsy can be controlled and may include medications or lifestyle changes. Stimulants such as modafinil are a safe option which acts on the central nervous system to reduce the build-up fatigue during waking hours with little addictive properties. You may also be recommended antidepressants like selective serotonin reuptake inhibitors (SSRIs) which have been shown to help with symptoms such as cataplexy.¹

Not all reliance should be put on medications, however. Making sure you go to bed and wake up at consistent times can improve the quality of sleep at night. Short naps in the day can help with the accumulation of fatigue.

Stimulants such as caffeine and nicotine should also be avoided around bedtime. In terms of the workplace and schools, there are various acts in place to accommodate napping for individuals with narcolepsy when required and adjust work hours for when workers are least tired.⁴

Future directions

You will be pleased to hear that considerable investment is going into research focusing on the genetic and environmental causes of narcolepsy to help develop further drug-based medications that may actually cure sleep disorder.

Understanding narcolepsy in animal models and testing new wake-promoting substances is likely to be of benefit in the near future. As an example, this has shed light on the impact of viruses in the development of narcolepsy and therefore may present as a target to alleviate the damaging effects on your daily life.⁴

Summary 

Narcolepsy is a condition in which an individual’s sleep-wake cycle is highly disrupted and consistent sleep is fragmented. They also fall asleep at inappropriate times during the day due to severe fatigue. Less well-known symptoms include cataplexy (the loss of muscle contraction during the day), sleep paralysis and hallucinations.

This disruption to sleep can have further downstream effects on the daily life and the quality of one’s life. Physical tiredness frequently leads to lethargy and a more sedentary life, which in turn can reduce social interactions and impact relationships with close ones.

You may also struggle at school or at work due to difficulty maintaining concentration and attention at certain hours of the day, for which the establishment should accommodate. Many individuals with narcolepsy can suffer with mental health problems and reduced mood, along with potential weight gain.

Thankfully, there are ways to manage these complications through medication and lifestyle changes such as modafinil, a stimulant to prevent tiredness during the day, and sleep hygiene to ensure a bed-time routine is maintained. There is also vast research looking into the cause of narcolepsy and potential cures for the disease.