Narcolepsy. Causes, Symptoms, and Treatment

Narcolepsy, even though quite often mentioned in novels and movies, is actually a very rare condition. It is estimated that only one in 2,000 people is affected by this disorder. However, many clinicians and scientists agree this number represents only the diagnosed individuals and suggest it could reflect only approximately 25% of all cases.

Key takeaways:
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    Narcolepsy is defined as a long-term brain condition that manifests through the inability to regulate sleep-wake cycles appropriately.
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    Narcolepsy onset is usually reported during adolescence. However, many individuals only seek help and get diagnosed between the ages of 20 to 40.
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    Narcolepsy is a serious condition, and you should not attempt to self-medicate in any way.
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    There are support groups available for individuals suffering from narcolepsy, which can provide support and a safe environment for sharing your experience.

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

Description and causes

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 with 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.

The main known cause for narcolepsy is the lack of hypocretin, also known as orexin, which is a brain chemical. This neuropeptide is involved in regulating sleep-wake cycles in humans, as well as feeding behaviors.

In the case of narcolepsy, the insufficient amount of orexin is a result of a faulty autoimmune response. In healthy individuals the immune system “attacks” damaged, or infected cells in the body, whereas in the case of narcolepsy, the antibodies produced by the autoimmune system response mistakenly affects the healthy cells.

Research indicates that, in individuals with narcolepsy, the antibodies “attack” healthy proteins called trib 2, which are produced by the same brain area as hypocretin. However, the deficiency of hypocretin does not explain all the narcolepsy cases, as some individuals suffering from narcolepsy seem to have near-normal or normal hypocretin levels.

It is largely believed that the faulty immune system response causing the hypocretin/orexin deficiency has a genetic basis, and can be inherited.

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

  1. A severe infection, such as swine flu or streptococcal infection.
  2. Major psychological distress, especially in cases of a dramatic sleep-wake cycle change.
  3. Large hormonal changes, that can be either naturally occurring, such as puberty or menopause, or induced by medication, treatment, or other external factors.
  4. Brain abnormalities, such as tumors.
  5. Multiple sclerosis.
  6. Encephalitis.
  7. Severe head injury.
  8. Rarely: Pandemrix vaccine (which has been off the market for over 10 years).

Symptoms

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 and treat the symptoms, but also could further the research into narcolepsy.

Narcolepsy can manifest itself with these symptoms:

  1. Daytime sleepiness, which includes the sensation of drowsiness, difficulty concentrating, and staying awake.
  2. Extensive and vivid dreaming, that is experienced just before or during falling asleep, which are called hypnagogic hallucinations. Vivid dreaming just before or during waking up, are called hypnopompic hallucinations.
  3. Frequent awakenings during the night.
  4. Temporary loss or significant weakening of muscle control, such as collapsing, or stumbling. This symptom is usually triggered by strong emotions, such as anger or laughter. This is called cataplexy.
  5. Sleep attacks, such as suddenly falling asleep at inappropriate times.
  6. Sleep paralysis, which is inability to move or speak upon waking up. In a nutshell, when the “mind” is already awake, but the “body” is not. This can last from seconds to several minutes.

Treatment

Unfortunately, there is no cure for narcolepsy yet.

The symptoms of the disorder can be addressed by changing one's sleeping habits, improving sleep hygiene. Aside from general sleep hygiene, there are several things to avoid and consider if you are suffering from narcolepsy.

Medication for head colds or allergy relief pills can cause drowsiness as a side effect in the general population, and therefore should be avoided by people who have narcolepsy.

If you are using prescription medications, discuss the diurnal dynamic of their effects with your clinician, who can recommend the best suitable time of day for taking these.

Other prescription medications can alleviate the negative impact that narcolepsy has on a person’s functioning through the day and overall well-being.

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

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

Please note: narcolepsy is a serious condition, and you should not attempt to self-medicate in any way.

All of the above medications have their own side effects, and need to be discussed and assessed by a clinician. Your dedicated physician will help you manage the disease and prescribe medication for individual symptoms, if needed.

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 as well as frightening 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.