TAS Poll #6: Living with Narcolepsy

The Talk About Sleep narcolepsy member population is growing. We strive to meet your expectations in the area of information and support. In an effort to learn more about your needs and requests, we offer the following poll. We receive countless email and phone calls from our Narcolepsy members, most of whom have never met another person with narcolepsy. The following survey questions have been derived from your most frequently asked questions to us. We hope you will find the poll results of interest.

Is narcolepsy your primary sleep disorder?

	Yes
	No

In addition to Narcolepsy, please indicate if you have been diagnosed with any of the following (check all that apply)

    Sleep Apnea
    Restless Legs Syndrome
    Periodic Limb Movement Syndrome
    REM Behavior Disorder
    Fibromyalgia
    Circadian Rhythm Disorders
    Other:

What is your gender?

	Male
	Female

How old are you?

	Under 18
	18-24
	25-34
	35-44
	45-54
	55-64
	Over 65

How old were you when you were diagnosed with Narcolepsy?

	Under 18
	18-24
	25-34
	35-44
	45-54
	55-64
	Over 65

Cataplexy: a temporary decrease or complete loss of muscle control triggered by an emotional response. Your cataplexy is considered:

	Mild
	Moderate
	Severe
	I do not have cataplexy

Please indicate whether you experience the following at least once a week (check all that apply)

    Sleep Paralysis (a brief loss of muscle control that occurs at the onset of sleep or upon awakening)
    Hypnagogic Hallucinations (vivid dream-like images and sounds that are experienced at sleep onset)
    Microsleep (a lapse from wakefulness into sleep that lasts just a few seconds)
    Automatic Behavior (when a person performs tasks and activities while awake and without recollection of the event)
    Disrupted Nighttime Sleep (occurs when a person may awaken several times throughout the night or awaken and remain awake for long periods of time every night)

Have you used the following medications for the treatment of your narcolepsy/cataplexy? (check all that apply)

    Xyrem
    Provigil
    Ritalin
    Dexedrine
    Ambien
    Other Stimulants
    Antidepressants
    Other:

I am currently using the following medications for my treatment of narcolepsy/cataplexy (check all that apply)

    Xyrem
    Provigil
    Ritalin
    Dexedrine
    Ambien
    Other Stimulants
    Antidepressants
    Other:

Is your current medication regime is working to your satisfaction?

	Yes
	No

What are your biggest frustrations as a person with narcolepsy/cataplexy? (check all that apply)

    Finding a medication regime that works
    Social aspects of living with narcolepsy/cataplexy
    Education challenges
    Job related frustrations
    Living on disability
    The process of applying for disability
    Finding the right physician who specializes in narcolepsy
    Building or keeping personal relationships
    Raising children
    Not being able to drive

Are you employed outside of your home?

	Yes
	No

Are you on disability due to your narcolepsy/cataplexy diagnosis?

	Yes
	No

Are you in the process of applying for Disability?

	Yes
	No

You keep your narcolepsy/cataplexy condition: (check all that apply)

    A closely held secret from most everyone
    A secret from your employer and fellow employees
    A topic you freely discuss with family and friends
    A topic you pick and choose very carefully for discussion

What is your source for narcolepsy information and support? (check all that apply)

    Family and friends
    Physician
    Narcolepsy Network
    Talk About Sleep website
    Talk About Sleep narcolepsy message boards
    Talk About Sleep narcolepsy chats
    Other (please specify)
    Other:

Please tell us what more Talk About Sleep can provide for you in the way of information and support