Frequently Asked Questions about my Narcolepsy

1. So what is that you have?
2. Is that like Necrophilia?
3. How did you get it?
4. What symptoms do you have?
5. How long have you had it?
6. When were you officially diagnosed?
7. Is there a cure?
8. Do you have to take medication?
9. How has it affected your life?
10. Do you know anyone else with Narcolepsy?

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1. So what is that you have?
I have a neurological condition (which means it's a brain problem) known as Narcolepsy (pronounced "nahr-kuh-lep-see"). Basically some of my wires are crossed upstairs, leaving my body unable to maintain a healthy sleep-wake cycle. I feel overpoweringly sleepy all day, and then suffer from insomnia and frequent awakenings at night.

2. Is that like Necrophilia?
Um, no ... not at all. Necrophilia is when your sexually attracted to corpses. Narcolepsy is when your body has issues with sleep. Glad we got that taken care of. Don't bring it up again ya ignorant yahoos!

3. How did you get it?
Unprotected Sex.

No really. That's why I'm here to tell you, that abstinence is the only proven 100% effective measure to protect yourself against Narcolepsy.

Okay, truthfully, don't know. No one's too sure if it's hereditary or caused by environmental factors. Although a lot of progress has been made in the past ten years in figuring that out.

4. What symptoms do you have?
I suffer from the following with varying degrees of frequency.

Execessive daytime sleepiness (EDS) - Basically I just want to, and can, sleep all the time, no matter the circumstances, how much sleep I got the night before, or even if I just woke up from sleeping. The result of being exhausted all the time has led to a severe decrease in my short term memory. I also have incredibly difficulty waking in the morning, concentrating on a task, getting a task done and done well, as well a number of other things. Basically it's very disabling.

Hallucinations - "vivid, [often] frightening dreams experienced while falling asleep or waking. About 25-50% of narcolepsy sufferers experience them." source

Automatic Behavior - "Automatic behavior occurs when a person continues to function (talking, putting things away, etc.) during sleep episodes, but awakens with no memory of performing such activities. It is estimated that up to 40 percent of people with narcolepsy experience automatic behavior during sleep episodes." source

Insomnia and frequent night-time awakenings - I joke around with everyone that my peak hours are like 11pm - 2am. I'm exhausted and sleepy all day, but then I often have considerable difficulty sleeping at night! Crazy isn't it! That doesn't make life easier, that's for darned sure!

5. How long have you had it?
Finals week of my Freshman year of college (May '04) I felt like a train hit me. I just started sleeping all the time. Like I would sleep for two or three days straight practically. I went to the University health center, where it was attributed to stress of finals as a freshman.

I told people at the time that it was so random. Like one day I went to bed fine and the next I woke up and couldn't stay awake. In hindsight, I think I'd been slowly exhibiting worsening symptoms for at least a few years, but for some reason that least week of school it all came to a tipping point and I just couldn't ignore it. So at the time, I felt like onset was very sudden, but in hindsight I think I just realized I had a problem very suddenly.

6. When were you officially diagnosed?
Well, as I stated in the above question, I first noticed an issue during the second of week. Starting with the ISU doctors that week, I went to numerous doctors until eventually I was diagnosed with Narcolepsy during the last week of October '04. Yup, it took six months of seeing doctors, taking pills for depression, getting second opinions, tons of blood work, a cat scan and eventually a sleep specialist to diagnose me.

The scary part is, I was fortunate. My diagnosis was way quicker than most people with Narcolepsy. A lot of people just live with the symptoms, some can't find decent doctors and others have doctors that think it's something else. I may be Narcoleptic for the rest of my life, but at least I'll be treated for Narcolepsy the rest of my life too!

7. Is there a cure?
Nope. I get to be Narcoleptic MY WHOLE LIFE! How sweet is that! (Okay, not very, but life could be worse...)

8. Do you have to take medication?
Silly children with your silly questions ... OF COURSE I HAVE TO TAKE MEDICATION! :)

9. Does the medicine keep you awake?
Yeah-ish. Basically I take an amphetamine. However, it will never make me feel totally "normal". Here's a good way of describing. As you go throughout the day, assuming you got a full night's sleep and all that jazz, we'll say on a scale of -50 to 50, you feel like a zero. So on our scale zero is considered healthy and normal. You're awake, alert, etc. A person taking speed, may be like a 25-50 or something. Without medication I easily feel like -50 all the time. With medication, I'm somewhere between -25 and -10, maybe even -5. So it's very rarely that I'll even break even on feeling awake like the rest o' you lucky schmucks.

And actually medicine isn't even necessarily the best thing I can do for myself. Basic lifestyle changes, such as a predictable sleeping/eating pattern, taking brief 20 min naps, exercising, getting 8 hours of sleep a night and eating healthy all play just as big of a factor some days as taking my medicine.

To cope, lifestyle changes and medicine are both necessary. Without one, the other is only half effective.

9. Do you know anyone else with Narcolepsy?
My cousin, my brother's math teacher's (who was also my ex-girlfriend's sister's high school volleyball coach) husband apparently does. And I have two friends that are currently seeing doctors to see if they have it. So other than my cousin, not really. Maybe I need to get out more, who knows.