Cynthia I.

The Interview (33-year-old married female)

Name, Sex, & Age: Cyn, Female, 33	Family stats: Married, two children
Website: None	Twitter: None

1. How do you support yourself (If employed, what type of work do you do and what is your work schedule)?I do get Social Security Disability (rsdi), because I cannot work full time. I am very fortunate to work part time as a children's entertainer for a large, well known franchise. I work maybe three or four hours a week, tops. It is fun, and makes me feel productive.
2. Have you been diagnosed with narcolepsy by a doctor or did you self-diagnose? I was diagnosed by a sleep specialist, after several neurologists, psychologists, psychiatrists and other medical docs were stumped.
3. When were you diagnosed and what were you diagnosed with? My first sleep related diagnoses were apnea and periodic limb movements of sleep, about 2 years ago. Even with cpap, my EDS was incredibly bad. After an MSLT with 2.5 minute average time from awake to REM, and a blood test, the diagnosis was confirmed.
4. What is your score on the Epworth Sleepiness Scale? (If you would like to get your score, click HERE). My epworth score, without stimulant medication, is 20.
5. When, if ever, did you first realize that something was wrong with you? Explain. I realized something was wrong when I began to be exhausted all the time. I didn't realize my cataplexy and sleep paralysis were related to the narcolepsy till later, but cataplexy has been an issue since high school.
6. Was your diagnosis a relief, a surprise, or a disappointment? When I found out I had Narcolepsy it was both a relief and a disappointment. A relief because I realized I wasn't crazy, and a disappointment because narcolepsy isn't curable.
7. Have you ever had a sleep test? What was it like? I had several sleep studies. One in the beginning to diagnose why I had such bad eds, one for a cpap titration and fitting, and one full night and day for an mslt. It's odd to wear wires and tubes and straps to sleep, and I felt exposed and uncomfortable but it was worth it in the end for my health. I've also had a four day at home eeg with video monitoring. That was the least fun.
8. Does anyone in your family have a sleep disorder? My son sleepwalks and my mom has restless legs, but no one has anything like narcolepsy.
9. In what ways has narcolepsy negatively impacted your life?Narcolepsy makes it hard to do simple things. I can no longer work full time because I'm too exhausted. I'm afraid to let loose and have fun because laughing makes my knees give out, and horror movies out are impossible as are amusement park rides because my body shuts down and I go limp. My wife gets anxious when I drive, and has expressed concerns about my doing the simplest tasks like cooking and cleaning.
10. In what ways has narcolepsy positively impacted your life? The positive impact is that I don't see myself as lazy anymore, or crazy or stupid or weak. What aspects of narcolepsy bother your life the most? What bothers me most is the constant fear that I will fall asleep doing something important, or I will have a cataplexy attack while performing, cooking or driving. The scariest part of Narcolepsy is sleep paralysis. It is traumatic, and violating.
11. How do your family and friends feel about your illness?My friends don't really understand much about Narcolepsy. My kids know mommy gets tired a lot and falls down if they tickle her.
12. How do you cope with knowing you have an incurable illness? I try to forget I have an incurable illness, and focus on finding tx that works for me.
13. How does narcolepsy affect your romantic life? Romance; I sometimes have cataplexy during intimate moments, so we have to be careful.
14. How does narcolepsy affect your parenting and/or work skills? I am so tired that my kids don't always get the attention they need, and I cannot work full time.
15. What medications have you taken for narcolepsy? What do you currently take? I have tried various stimulants (methylphenidate, etc.) And nuvigil. They don't work well for me. The side effects of nuvigil (severe irritability and massive stomachache) were worse than my tiredness and stimulants make my cataplexy worse. Working on getting apnea under control to try Xyrem.
16. If there was one thing you could get someone who doesn’t understand narcolepsy to understand, what would it be?One thing I'd want people to understand is that PWN are not just tired. We are emotionally, spiritually and physically exhausted. Imagine being awake for a week straight. We feel that way all the time, and no amounts of sleep relieves it.