Q: What is Narcolepsy?

A: Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness. People with narcolepsy experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime. These sudden sleep attacks may occur during any type of activity at any time of the day. (WebMD Jan 2017)

 

Q: What causes Narcolepsy?

A: Many cases of narcolepsy are thought to be caused by a lack of the brain chemical hypocretin (also known as orexin), which regulates sleep.

This deficiency is thought to result from the immune system mistakenly attacking parts of the brain that produce hypocretin. However, a lack of hypocretin isn’t the cause in all cases. (nhs.co.uk)

 

Q: What causes my immune system to mistakenly attack the hypothalamus (part of the brain that produces hypocretin)?

A: A number of factors may increase a person’s risk of narcolepsy or cause an autoimmune problem, including:

  • an inherited genetic fault
  • hormonal changes, including those that occur during puberty or the menopause
  • major psychological stress
  • a sudden change in sleep patterns
  • an infection, such as swine flu or a streptococcal infection
  • having the flu vaccine Pandemrix

Research is yet to confirm whether all of these play a role in narcolepsy. (nhs.co.uk)

 

Q: When is Narcolepsy NOT caused by an auto-immune response?

A: Narcolepsy can sometimes occur as a result of an underlying condition that damages the areas of the brain that produce hypocretin.

For example, narcolepsy can sometimes develop after:

  • a head injury
  • a brain tumour
  • multiple sclerosis (MS)
  • encephalitis

Narcolepsy caused by an identifiable underlying condition is known as secondary narcolepsy.

 

Q: What are the symptoms of Narcolepsy?

A: Symptoms of narcolepsy include, but are not limited to:

  • Excessive daytime sleepiness (EDS): In general, EDS interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night. People with EDS report mental cloudiness, a lack of energy and concentration, memory lapses, a depressed mood, and/or extreme exhaustion.
  • Cataplexy: This symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control. It can cause symptoms ranging from slurred speech to total body collapse, depending on the muscles involved, and is often triggered by intense emotions such as surprise, laughter, or anger.
  • Hallucinations : Usually, these experiences are vivid and frequently frightening. The content is primarily visual, but any of the other senses can be involved. These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when they occur during awakening.
  • Sleep paralysis : This symptom involves the temporary inability to move or speak while falling asleep or waking up. These episodes are generally brief, lasting a few seconds to several minutes. After episodes end, people rapidly recover their full capacity to move and speak. (WebMD Jan 2017)

For more on Narcolepsy Symptoms, please see the section of our website entitled so.

 

Q: What is Cataplexy?

A: Cataplexy is a sudden, brief loss of voluntary muscle tone triggered by strong emotions such as laughter. Cataplexy episodes may include:

  • Facial twitching, flickering or grimacing
  • Unusual tongue movements
  • Jaw tremor
  • Head or jaw dropping
  • Knee trembling or buckling
  • Drooping eyelid
  • Speech difficulty.

(medicalnewstoday.com)

 

Q: Do all people with Narcolepsy have Cataplexy?

A: No, not all people with Narcolepsy have Cataplexy.

 

Q: How common is Narcolepsy?

A: Narcolepsy is a rare disorder affecting less than 1% of the general population. We feel that this figure does not correctly portray the amount of people living with Narcolepsy, merely how many of them have been officially diagnosed. Narcolepsy is very often mis-diagnosed because each person’s symptoms vary and the symptoms most commonly associated with Narcolepsy are not exclusively associated with Narcolepsy. Therefore other ailments which are “more common” may be given as initial diagnosis.

 

Q: At what age do people get Narcolepsy?

A: Narcolepsy usually begins between the ages of 15 and 25, but it can become apparent at any age. In many cases, narcolepsy is undiagnosed and, therefore, untreated. (WebMD Jan 2017)

 

Q: Is there a cure for Narcolepsy?

A: There is currently no cure for Narcolepsy, but there are constant lab tests and advancements being made, so we are hopeful that someday there will be.

 

Q: How is Narcolepsy diagnosed?

A: A physical exam and exhaustive medical history are essential for proper diagnosis of narcolepsy. However, none of the major symptoms is exclusive to narcolepsy. Several specialized tests, which can be performed in a sleep disorders clinic or sleep lab, usually are required before a diagnosis can be established. Two tests that are considered essential in confirming a diagnosis of narcolepsy are the polysomnogram (PSG) and the multiple sleep latency test (MSLT).

The PSG is an overnight test that takes continuous multiple measurements while a patient is asleep to document abnormalities in the sleep cycle. A PSG can help reveal whether REM sleep occurs at abnormal times in the sleep cycle and can eliminate the possibility that an individual’s symptoms result from another condition.

The MSLT is performed during the day to measure a person’s tendency to fall asleep and to determine whether isolated elements of REM sleep intrude at inappropriate times during the waking hours. As part of the test, an individual is asked to take four or five short naps usually scheduled two hours apart. (WebMD Jan 2017)

 

Q: How is Narcolepsy treated?

A: Although there is no cure for narcolepsy, the most disabling symptoms of the disorder (EDS and symptoms of abnormal REM sleep, such as cataplexy) can be controlled in most people with drug treatment. Sleepiness is treated with amphetamine-like stimulants, while the symptoms of abnormal REM sleep are treated with antidepressant drugs.

There has recently been a new medication approved for those who suffer from narcolepsy with cataplexy. This drug, called Xyrem, helps people with narcolepsy get a better night’s sleep, allowing them to be less sleepy during the day. Patients with narcolepsy can be substantially helped — but not cured — by medical treatment.

Lifestyle adjustments such as avoiding caffeine, alcohol, nicotine, and heavy meals, regulating sleep schedules, scheduling daytime naps (10-15 minutes in length), and establishing a normal exercise and meal schedule may also help to reduce symptoms. (WebMD Jan 2017)

 

Q: Does Narcolepsy affect learning/earning potential?

A: There is no doubt that Narcolepsy can affect your life in ways which make learning and earning more difficult. Some people with Narcolepsy have great success with various treatment methods, and live lives that include working full-time and/or attending school/college/university. Most Narcoleptics will require assistance and understanding from their employers and educators to facilitate their nap-schedule (recommended as part of Narcolepsy treatment) and in the case of education; many require assistance when taking exams and/or while attending lectures (note-taking software for example). These concessions make things much more achievable for people with Narcolepsy. Unfortunately, there are still some people with Narcolepsy whose symptoms are so severe that working full-time and attending school is not such a sustainable prospect.