Narcolepsy Information- a Basic Guide

Facts and information about narcolepsy are available to everyone at any sleep clinic in the area. Even if you personally do not have this sleeping illness, knowing about it could help someone else someday. In the world today there are about three million people living with narcolepsy, and even more dealing with the symptoms associated with sleep disorders.

Narcolepsy Facts and Information

Narcolepsy is a sleep disorder that originates in the brain. This neurological problem shares symptoms with other sleep disorders and is often difficult to diagnose. There are two international classifications of narcolepsy: Narcolepsy with cataplexy and narcolepsy without cataplexy.

Narcolepsy is defined by its key symptom, EDS or excessive daytime sleepiness. People with narcolepsy experience the irresistible need to sleep at inappropriate times. They do not sleep more than people with healthy sleep patterns, but their night time sleep is interrupted by other factors associated with narcolepsy such as insomnia, hypnogogic hallucinations, or sleep paralysis. These episodes cause frequent daytime sleep attacks.

Cataplexy is a disorder that has been linked to the deficiency of hypocretin-1 in the hypothalamus.  It’s a frightening disorder that causes its sufferer to experience an involuntary lack of muscle tone. Muscle weakness can be experienced in an almost unnoticeable way like the drop of the eyelid to a complete loss of control that ends up as a heap on the floor. Cataplexy is frightening because unlike with a normal attack from narcolepsy and other sleep dysfunctions, cataplexy is experience while completely awake and alert.

There are four major symptoms of narcolepsy. With this information, narcolepsy can be easily diagnosed and treated.  A person with narcolepsy can suffer from one or more of these symptoms but rarely all of them.

  1. EDS is an abbreviation for the symptom excessive daytime sleepiness. It is experienced by nearly all patients with narcolepsy. It is the defining symptom.

  2. Cataplexy is experienced by 80% of narcolepsy patients. Patients with cataplexy may get injured while falling when there is an episode of sudden muscle weakness.

  3. Sleep Paralysis is not experienced solely by people with narcolepsy. However, it is a common enough symptom.  Paralysis is experienced while falling asleep or waking up.  It can be every bit as frightening to experience as cataplexy especially since it is often accompanied by hallucinations.

  4. Hallucinations often accompany sleep paralysis, thus compounding the fright a person would experience.  These hallucinations are often dark and historically, they were attributed to supernatural phenomenon such as possessions or curses. Although it is rarer, narcolepsy patients without sleep paralysis can occasionally experience hallucinations.

Narcolepsy is not an incredibly common neurological disorder and therefore, the general population tends to be ignorant as to the facts of this disease. A lot of research has been done over the past decade and today, doctors have more resources at their disposal than any time in the past.

Fact: Narcolepsy is suffered by around 3,000,000 people worldwide
Fact: Although there are drugs and treatments for narcolepsy, there is no cure
Fact: The symptoms of narcolepsy can lead to fatal accidents if left untreated
Fact:  Will power alone will not help a person with narcolepsy to control the symptoms

Drugs for Narcolepsy and Information on Lifestyle Changes

Narcolepsy is incurable. The symptoms however are treatable and when the drugs are combined with thoughtful lifestyle changes, a near-normal life can be achieved. There are three types of medications that are commonly prescribed to treat the symptoms of narcolepsy.

Stimulants

Stimulants are helpful to prevent EDS. By keeping the patient awake and alert during daytime hours, more daytime activities, such as work and school can be accomplished and they are more likely to get appropriate sleep at night.  Provigil is the most commonly prescribed stimulant for narcolepsy patients.

Antidepressants

Antidepressants (TCAs) have been combined with stimulants for decades to treat narcolepsy and its symptoms.  The exact mechanism is still unknown, but it is believed to work because TCA’a suppress REM sleep which is useful in treating related symptoms as well, like sleep paralysis and hallucinations. TCA’s had a large number of serious side effects and are not prescribed often today.

Sodium Oxybate

Gamma hydroxy butyric acid (GHB) is sold in the US as sodium oxybate and prescribed under the brand name Xyrem. It is a hypnotic drug; it promotes the deepest sleep and inhibits REM sleep. It is the most effective treatment of cataplexy known. GHB is illegal in many countries and carefully monitored in the US, Australia and Britain because it is often abused and used recreationally and has been used to perpetrate date rape.

Lifestyle changes

Many people with mild narcolepsy symptoms get by without any medications at all with carefully planned lifestyle changes.  Many patients with severe narcolepsy find that without these lifestyle changes, drugs are not enough.  Either way, it is important to take precautions to limit the effects of the narcolepsy disorder. The following table gives practical “do and don’t” type advise for a narcoleptics lifestyle changes.

Do

Don’t

Get informed with up to date research

Stick to a healthy diet

Keep to a bedtime ritual

Take all medications as prescribed

Schedule daytime naps

Involve loved ones in your treatment

Wear a medical bracelet for emergencies

Keep a journal, recording sleep attacks

Find support groups

Don’t take drugs that cause drowsiness

Don’t eat foods that are high in fat, or fiber

Don’t consume illegal drugs or alcohol

Don’t use caffeine or nicotine

Don’t work third shift jobs

Don’t keep your condition secret

Don’t try to over extend yourself

Don’t isolate yourself from others

give up

General Information on Narcolepsy therapy can be found at your local sleep clinic. You may also be able to find information on other sleep disorders such as sleep apnea or insomnia.  You’ll discover that you are not alone.  There may be listings available at the clinic of local support groups where you can connect with other people who suffer from this illness and learn their strategies for success and hear how they overcame by making careful and thoughtful decisions about their lifestyle.  You may also get recommendations for treatment providers.

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