| 1) Is narcolepsy your primary sleep disorder? |
|
Total Responses
|
   100%
|
|
Yes
|
 91.36%
|
|
No
|
 8.64%
|
| 2) In addition to Narcolepsy, please indicate if you have been diagnosed with any of the following (check all that apply) |
|
Total Responses
|
100%
|
|
Sleep Apnea
|
34.81%
|
|
Restless Legs Syndrome
|
22.56%
|
|
Periodic Limb Movement Syndrome
|
 11.90%
|
|
REM Behavior Disorder
|
 7.64%
|
|
Fibromyalgia
|
 15.63%
|
|
Circadian Rhythm Disorders
|
 7.46%
|
| 3) What is your gender? |
|
Total Responses
|
100%
|
|
Male
|
25.19%
|
|
Female
|
74.81%
|
| 4) How old are you? |
|
Total Responses
|
100%
|
|
Under 18
|
2.65%
|
|
18-24
|
15.28%
|
|
25-34
|
31.44%
|
|
35-44
|
22.60%
|
|
45-54
|
16.67%
|
|
55-64
|
8.21%
|
|
Over 65
|
 3.16%
|
| 5) How old were you when you were diagnosed with Narcolepsy? |
|
Total Responses
|
100%
|
|
Under 18
|
9.51%
|
|
18-24
|
22.37%
|
|
25-34
|
35.35%
|
|
35-44
|
18.38%
|
|
45-54
|
12.21%
|
|
55-64
|
2.19%
|
|
Over 65
|
0.00%
|
| 6) Cataplexy: a temporary decrease or complete loss of muscle control triggered by an emotional response. Your cataplexy is considered: |
|
Total Responses
|
100%
|
|
Mild
|
35.11%
|
|
Moderate
|
18.58%
|
|
Severe
|
10.94%
|
|
I do not have cataplexy
|
35.37%
|
| 7) Please indicate whether you experience the following at least once a week (check all that apply) |
|
Total Responses
|
100%
|
|
Sleep Paralysis (a brief loss of muscle control that occurs at the onset of sleep or upon awakening)
|
13.83%
|
|
Hypnagogic Hallucinations (vivid dream-like images and sounds that are experienced at sleep onset)
|
19.70%
|
|
Microsleep (a lapse from wakefulness into sleep that lasts just a few seconds)
|
23.57%
|
|
Automatic Behavior (when a person performs tasks and activities while awake and without recollection of the event)
|
20.45%
|
|
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)
|
22.45%
|
| 8) Have you used the following medications for the treatment of your narcolepsy/cataplexy? (check all that apply) |
|
Total Responses
|
100%
|
|
Xyrem
|
11.99%
|
|
Provigil
|
28.68%
|
|
Ritalin
|
17.79%
|
|
Dexedrine
|
7.82%
|
|
Ambien
|
6.38%
|
|
Other Stimulants
|
11.18%
|
|
Antidepressants
|
16.16%
|
| 9) I am currently using the following medications for my treatment of narcolepsy/cataplexy (check all that apply) |
|
Total Responses
|
100%
|
|
Xyrem
|
17.46%
|
|
Provigil
|
31.16%
|
|
Ritalin
|
13.60%
|
|
Dexedrine
|
6.43%
|
|
Ambien
|
3.95%
|
|
Other Stimulants
|
9.65%
|
|
Antidepressants
|
17.74%
|
| 10) Is your current medication regime is working to your satisfaction? |
|
Total Responses
|
100%
|
|
Yes
|
35.47%
|
|
No
|
64.53%
|
| 11) What are your biggest frustrations as a person with narcolepsy/cataplexy? (check all that apply) |
|
Total Responses
|
100%
|
|
Finding a medication regime that works
|
15.17%
|
|
Social aspects of living with narcolepsy/cataplexy
|
20.10%
|
|
Education challenges
|
9.12%
|
|
Job related frustrations
|
15.67%
|
|
Living on disability
|
3.76%
|
|
The process of applying for disability
|
5.09%
|
|
Finding the right physician who specializes in narcolepsy
|
7.55%
|
|
Building or keeping personal relationships
|
 11.68%
|
|
Raising children
|
 6.52%
|
|
Not being able to drive
|
 5.32%
|
| 12) Are you employed outside of your home? |
|
Total Responses
|
100%
|
|
Yes
|
59.57%
|
|
No
|
40.43%
|
| 13) Are you on disability due to your narcolepsy/cataplexy diagnosis? |
|
Total Responses
|
100%
|
|
Yes
|
14.19%
|
|
No
|
85.81%
|
| 14) Are you in the process of applying for Disability? |
|
Total Responses
|
100%
|
|
Yes
|
15.37%
|
|
No
|
84.63%
|
| 15) You keep your narcolepsy/cataplexy condition: (check all that apply) |
|
Total Responses
|
100%
|
|
A closely held secret from most everyone
|
8.95%
|
|
A secret from your employer and fellow employees
|
10.49%
|
|
A topic you freely discuss with family and friends
|
42.70%
|
|
A topic you pick and choose very carefully for discussion
|
37.86%
|
| 16) What is your source for narcolepsy information and support? (check all that apply) |
|
Total Responses
|
100%
|
|
Family and friends
|
11.11%
|
|
Physician
|
26.43%
|
|
Narcolepsy Network
|
17.12%
|
|
Talk About Sleep website
|
16.81%
|
|
Talk About Sleep narcolepsy message boards
|
17.69%
|
|
Talk About Sleep narcolepsy chats
|
4.16%
|
|
Other (please specify)
|
6.68%
|
