Narcolepsy: Key Facts to Understand Your Sleep

Narcolepsy, even though quite often mentioned in novels and movies, is actually a very rare condition. Even though not many are diagnosed with this disorder, it is a serious condition, that requires medical attention and treatment.

What is narcolepsy?

Narcolepsy is defined as a long-term brain condition that manifests through the inability to regulate sleep-wake cycles appropriately. This means an individual suffering from narcolepsy can fall asleep unexpectedly at any time.

This should not be mistaken for occasions where one might nod off while watching a movie. In the case of narcolepsy, the individual might collapse (due to falling asleep) while standing up, in mid-sentence, or while making a presentation.

Types of narcolepsy

There are three types of narcolepsy, classified into type 1, type 2, and secondary.

Type 1 narcolepsy is also called narcolepsy with cataplexy. Cataplexy is a loss of muscle control evoked by an emotional response, which can vary from seconds to minutes and affect the entire body or just a localized area. Type 1 narcolepsy is usually described as the most severe, with individuals experiencing involuntary falling asleep, cataplexy, nighttime insomnia, sleep paralysis, and excessive daytime sleepiness. In addition, type 1 narcolepsy is associated with low levels of hypocretin — a hormone that is involved in regulating circadian rhythms and your sleep-wake cycles.

Type 2 narcolepsy (narcolepsy without cataplexy) manifests in the same way as type 1, only without episodes of cataplexy. The overall symptomology is milder, too. Given that there are no cataplexy symptoms in type 2 narcolepsy, their hypocretin levels also appear within the normal range.

Secondary narcolepsy is sometimes excluded from general narcolepsy research or prevalence estimates, given that it is a result of a brain injury, specifically the hypothalamus region, which is a deep brain structure, that is involved in regulating sleep cycles. Depending on the extent of trauma, individuals with secondary narcolepsy can experience excessive daytime sleepiness and cataplexy.

How common is narcolepsy?

Narcolepsy is recognized as a semi-rare condition that affects 1 in 2,000 people. Narcolepsy usually manifests itself in the late teens or early twenties. The prevalence of narcolepsy is the highest among 21–30-year-old adults. It has been shown that gender plays a role as well, with women having 50% (or more) higher prevalence rates than men.

What causes narcolepsy?

The main known cause of narcolepsy is the lack of hypocretin, also known as orexin, which is a brain chemical. The loss of orexin neurons in the brain affects the levels of orexin in both the brain and cerebrospinal fluid (CSF). This lack of orexin results in sleep-wake cycle disruptions. Unfortunately, the exact reasons for low orexin levels are unknown.

Research suggests that in the case of narcolepsy, the insufficient amount is a result of a faulty autoimmune response. In healthy individuals, the immune system 'attacks' damaged or infected cells, whereas in narcolepsy, the antibodies produced by the autoimmune system response mistakenly affect healthy cells.

In individuals with narcolepsy, this 'attack' is on healthy proteins called trib 2, which are produced by the same brain area as hypocretin. However, the deficiency of hypocretin does not explain all narcolepsy cases, as some seem to have near-normal or normal hypocretin levels. In fact, up to 90% of type 2 narcolepsy cases have their orexin levels within range. This means that the loss of orexin neurons is a mild factor in narcolepsy.

The research on risk factors suggests several that may trigger the onset of narcolepsy:

  • A severe infection, such as swine flu or streptococcal infection.
  • Major psychological distress, especially in cases of a dramatic sleep-wake cycle change.
  • Large hormonal changes that can be either naturally occurring, such as puberty or menopause, or induced by medication, treatment, or other external factors.
  • Brain abnormalities, such as tumors.
  • Multiple sclerosis.
  • Encephalitis.
  • Severe head injury.

Lifestyle changes that may support people with narcolepsy

Unfortunately, there is no cure for narcolepsy yet. Narcolepsy can't be treated or solely managed with lifestyle changes; therefore, it is essential you contact a healthcare professional for prescription medication and diagnosis.

The symptoms of the disorder can be, in part, addressed by changing one's sleeping habits and improving sleep hygiene. Sleep hygiene involves having a set times for going to bed and waking up, limiting blue light and stimulating activities before bed-time, avoiding alcohol, tobacco, and caffeine in the afternoon/evening. You should try to be active during the day - this can increase your sleep quality during the night.

Aside from general sleep hygiene, there are several things to avoid and consider if you are suffering from narcolepsy. For example, medication for head colds or allergy relief pills can cause drowsiness as a side effect in the general population and, thus, should be avoided by people who have narcolepsy.

Certain foods and drinks are not recommended for those who suffer from narcolepsy. Meals or drinks that contain high sugar and high carb content worsen the daytime sleepiness and therefore are not recommended for individuals with narcolepsy. For example, avoiding such rich carbohydrate foods like bread or pasta, has been shown to have a positive effect on day time sleepiness.

Professional help and diagnosis

It is important to contact your healthcare professional for a diagnosis of narcolepsy. Do not try to diagnose or treat the condition yourself. Your clinician will likely recommend some lifestyle changes described in the section above. In addition, they will suggest other prescription medications that can alleviate the negative impact that narcolepsy has on a person’s functioning through the day and overall well-being.

There are several ways to diagnose narcolepsy. Note that none of those can be self-administered. Most likely, you will need to spend a night in a sleep clinic, where clinicians can monitor your brain activity and how quickly you fall asleep. In addition, you will be interviewed about family history, other health conditions, and your sleep. Finally, in some cases, your hypocretin levels will be assessed, which is done by making a lumbar picture and drawing a sample of cerebrospinal fluid (CSF).

It is important to note that the medications listed here are not treating the disease but rather its symptoms. The most commonly prescribed groups of medication for narcolepsy are:

  • Stimulants, which, as suggested by the name, can counterbalance daytime sleepiness.
  • Sodium oxybate, which relieves the symptoms of sudden loss or weakening of the muscles, can improve sleep throughout the night, and decrease daytime sleepiness.
  • Antidepressants — even though not as commonly prescribed as others, they have been shown to be effective in treating loss of muscle control, sleep paralysis, and hallucinations upon falling asleep and when waking up.

All of the above medications have their own potential side effects and need to be discussed and assessed by a clinician. In addition, if you are using any other prescription medications for unrelated condition, discuss the diurnal dynamic of their effects with your clinician. Some prescription medications can affect sleepiness/daytime drowsiness, and some medications need to be taken at a particular time. Your clinician will recommend the most suitable time of day for taking prescription medication.

Aside from medication, your physician can suggest you see a social worker who can help you manage work, school, and relationships.

There are support groups available for individuals suffering from narcolepsy, which can provide support and a safe environment for sharing your experience. It can be difficult for others to understand narcolepsy, how frightening it can be at times — such as the sudden loss of muscle control resulting in collapse — and how it affects an individual. It’s important you talk to your family and friends about your condition.

Upon a diagnosis of narcolepsy, and with the consent of the individual, the information is submitted to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) in the U.S., which helps clinicians and scientists search for ways of treating, preventing, and diagnosing narcolepsy. The registry is voluntary, and individuals can opt out of it at any time.

Please note
Narcolepsy is a serious condition, and you should not attempt to self-medicate in any way. If you suspect that you may be suffering from narcolepsy it is important to contact your clinician, who can diagnose you and suggest appropriate treatment options.

Effects on your life

Narcolepsy onset is usually reported during adolescence. However, many individuals only seek help and get diagnosed between the ages of 20 to 40.

As it is also believed that many cases fall through the cracks of the healthcare system, it’s vital to see your dedicated clinician, who not only will help to manage the symptoms but also could further the research into narcolepsy.

Narcolepsy can manifest itself with these symptoms:

  • Daytime sleepiness which includes the sensation of drowsiness and difficulty concentrating and staying awake.
  • Extensive and vivid dreaming that is experienced just before or during falling asleep (hypnagogic hallucinations).
  • Frequent awakenings during the night.
  • Temporary loss or significant weakening of muscle control, such as collapsing or stumbling, when experiencing strong emotions like anger or laughter. This is called cataplexy.
  • Sleep attacks, such as suddenly falling asleep at inappropriate times.
  • Sleep paralysis — the inability to move or speak upon waking up. In a nutshell, this happens when the 'mind' is awake but the 'body' is not, and can last from seconds to several minutes.

In children with narcolepsy, the symptomology and manifestation is pretty much the same as it is in adults. However, there might be more severe cases due to maturational/puberty factors. Additionally, narcolepsy will have a significant impact on school performance and, usually, children's behavior.

The last word

Narcolepsy is a serious condition that causes excessive daytime sleepiness, and in the case of type 1 and secondary narcolepsy, cataplexy — the sudden loss of muscle control. Excessive daytime sleepiness or unexpected sleep attacks interfere with an individual's professional and social functioning. Unfortunately, there is no cure for narcolepsy; however, its symptoms can be managed with medication. It is important to contact your clinician for diagnosis and treatment.

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