Narcolepsy

What is narcolepsy?
An individual with narcolepsy has excessive daytime sleepiness and may have sudden, uncontrollable episodes of falling asleep during the daytime.

What are the main types of narcolepsy?
There are two types of narcolepsy: Type 1 and Type 2
Narcolepsy Type 1: Individuals with Narcolepsy Type 1 suffer from both excessive daytime sleepiness as well as cataplexy (or low CSF hypocretin-1 levels).  Cataplexy is a sudden loss of muscle tone during waking hours; this is usually caused by strong emotions.

Narcolepsy Type 2: Individuals with Narcolepsy Type 2 suffer from excessive daytime sleepiness but do not experience cataplexy.


What are the steps to getting diagnosed?
Each person's journey to becoming diagnosed with a sleep disorder is different; however, generally, an individual would first need to bring their concerns to their physician and potentially be referred to a sleep specialist if needed.  Bringing specific information, including detailed information on symptoms as well as concerns, is helpful.

The physician may need additional information regarding your sleep patterns and may require additional documentation, such as completion of a sleep questionnaire or scale, as well as sleep diaries or logs for a period of time (generally at least one week).

If your physician feels that you may have narcolepsy, they may order a series of tests to both rule out other causes for your symptoms, as well as confirm whether or not you have a sleep disorder.  This may include polysomnography (PSG) followed by a multiple sleep latency test (MSLT) to measure your tendency to fall asleep (or stay awake) in a dark, quiet, comfortable place. This includes sleeping overnight in a sleep center (PSG) and then completing a series of naps the following morning (MSLT). 


Depending upon the results of the PSG/MSLT as well as any other tests you may have needed, your physician may be able to make a diagnosis or may require additional testing.  This would be determined on an individual basis.


How is narcolepsy typically treated?
Although there is no cure for narcolepsy, there are several treatment options available to treat narcolepsy, including changes to sleep hygiene and medication. Work with your physician to determine the best treatment option for you. 

Medication: There are several medications indicated for narcolepsy, including medications that treat excessive daytime sleepiness; depending on the medication, these drugs may stimulate your nervous system or reduce REM sleep. You should work with your physician to find the best option for you.

Sleep Hygiene: Sleep hygiene is your bedtime habits, such as what you do to get ready for bed and how your bedroom is set-up.  By improving or changing your sleep hygiene, this can help to improve your sleep.  This may include: instituting a regular sleep schedule, keeping your bedroom cool, dark and quiet, practicing restful activities prior to sleep, and removing electronics from the bedroom.  This may also include introducing scheduled naps into your sleeping schedule.


If you feel that you may have a sleep disorder, talk to your primary physician or a sleep specialist regarding your concerns.

*The information above does not constitute medical advice; you should talk with your physician or healthcare provider regarding your medical care, including appropriate treatment options.


Member Only Resource: Narcolepsy
This informational sheet provides additional information regarding narcolepsy and can be used as a resource for patients or for medical professionals to provide as supplemental information for their patients. AAHS members will have indefinite access to these informational sheets through the file archive on your member account.