Narcolepsy

What is Narcolepsy?

Narcolepsy is a chronic neurologic sleep-wake disorder characterized by excessive daytime sleepiness (EDS) along with the occurrence of rapid eye movement (REM) sleep at incorrect times or for unusual lengths of time.

Although EDS is present in all patients with narcolepsy, there are three other major symptoms that may or may not be present. These include:

• • Cataplexy: a sudden loss of muscle control in response to an emotion. This loss of muscle control can be triggered by any emotion and can range from a slight, overall feeling of weakness to full, sudden collapse. The duration is normally brief, lasting up to several minutes.

  • Sleep Paralysis: the inability or extreme difficulty moving while either going to sleep or waking up. This is thought to be associated with the early onset or late departure of REM sleep, which causes loss of muscle tone and movement.

  • Hallucinations: dreams that occur while the person is either not fully asleep (hypnagogic) or not fully awake (hypnopompic). Like sleep paralysis, hallucinations are triggered by an inappropriate onset of REM sleep while the person is partially awake. As a result, patients often report these to be very vivid and sometimes frightening, and often have difficulty distinguishing these from reality.

Narcolepsy has no known cure. While medications are available, lifestyle adjustments are usually also necessary to properly manage symptoms.

What Medications are Used?

The type of medication(s) will vary from patient to patient and from doctor to doctor, depending upon the doctor's familiarity with the medications and the patient's response.

Generally, patients are given a stimulant or stimulant-like medication to combat EDS. These can include:

• • Ritalin

  • Ritalin LA

  • Ritalin SR

  • Concerta

  • Adderall

  • Amphetamine-like medications

If the patient experiences cataplexy, any one of a range of antidepressants may be effective. These can include:

• • Imipramine

  • Celexa

  • Zoloft

  • Wellbutrin

  • Effexor

  • Effexor XR

Often, patients will need a sedative or hypnotic medication to help them come closer to the correct rythym of natural sleep. These medications can include:

• • Lunesta

  • Ambien

  • Ambien CR

  • Klonopin

  • Xanax

There are two medications specifically approved for use in patients with narcolepsy. These are:

• • Provigil: a wake-promoting medication. Rather than acting specifically as a stimulant, Provigil tends to focus on preventing the patient from falling asleep involuntarily at inopportune times. Efficacy varies from patient to patient.

  • Xyrem: a central nervous system (CNS) depressant. Although the exact mechanism through which Xyrem works is not clearly known, it seems to consolodate nighttime sleep so that less REM sleep and more deep (stages 3 and 4) sleep are experienced. Initially, Xyrem was only approved for use in patients with cataplexy. However, trials have shown Xyrem to also be effective in reducing EDS, and Xyrem has thus been approved for use in this area, as well.

What Lifestyle Changes Should a Person with Narcolepsy Make?

Most doctors will agree that a combined approach of effective medications and lifestyle adjustments are necessary to achieve optimum control of the symptoms of narcolepsy. In general, a person with narcolepsy should:

• • Try to wake up and go to sleep at the same times every day.

  • Try to maintain a daytime schedule, remaining in line with the body's natural circadian rythym.

  • Plan on eight to nine hours of sleep during each night.

  • Plan on one to three naps of ten to twenty minutes each at the same times each day. Naps often can refresh persons with narcolepsy for a few hours.

  • Drive short distances only. If a person with narcolepsy must drive a long distance, it is important to establish points on the route where they can stop as necessary to rest.

  • Maintain healthy eating and exercise habits.

  • Try to take all medications at the same times every day.

  • Put their health and symptom management first - pushing these aside for any reason can often have a "snowball" effect, producing worsening symptoms over time.

What Can I Do to Be Supportive?

It is extremely important for persons with narcolepsy to have a system of support in place in order to provide for complete care. Although certain items should be considered by different individuals and groups, anyone who knows a person with narcolepsy should generally try to be supportive in the following ways:

• • Understand that narcolepsy is a life-long condition that will not go away with time. Although patients may experience worsening or improving symptoms at different stages in their lives, they will always have narcolepsy and need to manage their symptoms.

  • Understand that although media may portray a funny and characteristic picture of narcolepsy, it is rarely a laughing matter. Movies often show persons with narcolepsy going from energetic one minute to asleep the next. Generally, persons with narcolepsy will be more even-keel, instead spending most of their time extremely tired. This feeling has been compared to a normal person staying awake for three days straight and then trying to resume their normal activities. Put those shoes on and it makes it easier to understand how a person with narcolepsy consistently feels.

  • Understand that a person with narcolepsy will often need to cancel plans at the last minute, or even "disappear" for a time. Rather than taking it personally, please understand that patients often are completely incapacitated by their symptoms.

  • Do not be afraid to ask about narcolepsy and its symptoms.

  • Do not tell the person with narcolepsy that they are lazy, unmotivated, or unintelligent. None of these is true.

  • Do not tell the person with narcolepsy that you "get tired too," or "just drink some coffee." It is much more complicated than that, and most persons with narcolepsy will feel insulted by such belittling comments.

  • Accommodate the person with narcolepsy as much as possible by allowing them to take naps, medications, and sleep as they need to - not just when it might be convenient for you. If the person with narcolepsy ignores their body and brain's signals for too long, the results will be even worse than if they had simply been allowed to sleep in the first place.

  • Encourage the person with narcolepsy to attend support group meetings, and offer to accompany them. Learn about narcolepsy so you show your support and know what to do if a patient experiences cataplexy, sleep paralysis, or hallucinations while you are present.

This page is not an all-encompassing guide to narcolepsy; rather, it is an informal, quick guide to the most important points. There are scores of auxiliary symptoms that the primary symptoms cause, and their number is too great to list here. If you want to know more about these auxiliary symptoms, the best thing to do is to ASK the person with narcolepsy!