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What is Narcolepsy?

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Narcolepsy is a very rare sleeping disorder which presents with an inability to keep awake during daytime. The disorder is also characterized by sudden attacks of sleep over which the individual has no control. Narcolepsy varies in severity and is often mistaken for other medical disorders like seizures, depression, fainting spells, excess fatigue or other sleep related disorders. Unfortunately narcolepsy has no cure but the disorder does stabilize in the later years of life. In the USA it is estimated that about 1 in 2000 people may have narcolepsy. Narcolepsy is more common in males and tends to occur in all races and cultures.

Excessive daytime sleepiness is the universal complaint. Most individuals complain that the desire to sleep is sudden and uncontrollable. Besides excess sleep, one may also experience decreased alertness and an inability to concentrate. Other features of narcolepsy include extreme muscle weakness and hallucinations or vivid dreams while semi awake. People with narcolepsy may also act out their dreams and during sleep one may notice gross body movements like crying, flailing arms, screaming, or kicking.

No one knows why narcolepsy develops and it has been attributed to genetics, infection(s) or some type of brain damage.

The tragic thing about narcolepsy is that most people are not aware of the disorder and often distinguish these individuals as lazy, hypochondriacs, malingerers, stupid or aloof. Most individuals with narcolepsy have poor performance both at school and at work. The disorder can also affect personal relationships, lead to loss of libido, and/or impotence. For example, many individuals fall asleep during sex. There is no cure for this agonizing disorder but medications and lifestyle changes may help.

Drugs which stimulate the brain have widely been used to treat narcolepsy. Modafinil, Ritalin and anti depressants have been used to treat patients with narcolepsy. Although these medications are effective, they have potent side effects, are addictive and can lead to withdrawal symptoms when abruptly stopped.
Because medications are not a cure for narcolepsy lifestyle changes are a must to ensure a decent quality of life. All individuals should stick a regular schedule of sleep and wake pattern. Short naps during the day may help prevent excessive fatigue and decrease spontaneous sleep attacks.

Both tobacco and alcohol should be avoided since these substances may worsen sedation and increase fatigue. Exercise is a must for all individuals with narcolepsy because they can help induce night time sleep.

Narcolepsy is challenging disorder and one should discuss the issue with friends, colleagues and employers so as not to induce disruption at work and in interpersonal relationships. All individuals with narcolepsy should be aware of the American with Disabilities Act that prohibits discrimination against employee who have a confirmed diagnosis of narcolepsy.

Overall, only 50-60 percent of individuals do benefit from treatment but a significant number can no longer work productively or drive a car. Those with severe narcolepsy remain home bound.

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EmpowHER Guest

This article is incorrect when it says that modafinil has potent side effects, is addictive and can lead to withdrawal symptoms when abruptly stopped. I have used it for five years, only on days when I believe that good concentration and alertness are extra-important. I can use it for a week, stop for a week, use it for a day or two, and stop, without any withdrawal symptoms or perception of "needing" the drug. The side effects for me are an occasional very faint headache, and somewhat longer-lasting erections. Well, maybe that is "potent"!

February 16, 2010 - 7:05pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.



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