Narcolepsy Support Group

Hi NSG,

My name is Sen. I'm in my second year of college and have been tested for, but not yet diagnosed with, Narcolepsy.

For as long as I can remember, I have had odd sleeping habits. It wasn't until my sophomore year in high school that it really became a problem. At first, I just started randomly falling asleep in certain classes, but they were almost always at the same time of day. I would skip class and go to the nurses office to sleep, but I would never wake up rested, and they would "kick me out" for the next period.

Now that I'm in college, and my schedule is more spread out and varied, whatever sleeping issues I had in high school seem trivial. My senior year of high school, I debated not going to college because my grades had suffered so much due to my inability to stay awake in class, or while doing homework assignments/projects. I also didn't know how I would stay awake in class without someone I knew there to keep me awake.

At the beginning of each semester ((except this one)), I have approached my teachers personally, and told them that I have some sort of sleeping disorder that we are trying to figure out. Unfortunately, without consistently falling asleep in each and every class and documentation, none of my teachers believed me, and I even failed a few classes because if I fell asleep, they would mark me as absent. Last semester was one of my worst, and I almost considered dropping out. Handling the work load and screen staring associated with a Comp Sci majour was almost too much to keep up with. I don't always fall asleep in a class, it's random. The same happens with home work. I'm very lucky if I finish it without needing a nap part way through.

Let me explain what happens:

Randomly through out the day, I will start falling asleep, and if I don't have the option to get up and move around, I will not be able to control it or stay awake. I don't know when it's going to come on, or some times when it's happening. Luckily, I have a friend with me in most of my classes, and they will nudge me every so often to keep me awake, but I won't even know I was falling asleep in the first place.

I fall asleep during anything: car rides, bus rides ((my college has two campuses and a shuttle bus that brings students back and forth)), while reading, driving, standing still, sitting, in the middle of a conversation/sentence, etc. I could pretty much be doing anything and fall asleep. It can last anywhere from a few seconds to an episode of falling asleep and jerking awake for a couple hours. If I'm holding something when I fall asleep, I may end up throwing it across the room when I wake up because my body is jerking me out of my sleep. That said, I no longer hold onto my cell phone or ipod when on the bus; I keep them in my pockets. I cannot talk to someone while lying down because I start to dream and my sentences will cease to make sense. Although I have fallen asleep while driving, I have not crashed ((thank goodness)). I almost never wake up rested. Sometimes I will come out of an episode with enough energy to finish the day, and sometimes I will come out of it completely exhausted ((more so than when it started)).

When I finally went to see a sleep specialist in Dec. 2009, she told me that I am almost a classic case for Narcolepsy. I told her about the hallucinations I would have any time that I'm very exhausted, and she told me that they were probably Hypnagogic Hallucinations. She said she would recommend the test as a formality/double-check,and I did and sleep study and nap study ((the day after the sleep study)). By the time I got back to school, I tried to do whatever possible to change daily habits to get better/more rest when I was supposed to be sleeping, and less when I wasn't supposed to be. I regulated my sleep schedule as best I could. Although I can't really control the falling asleep, I get up at the same time every morning.

It has now been two weeks since my tests, and these past few days have been very stressful. I'm worried that I will not be diagnosed with Narcolepsy, and have no way of handling whatever it is that is going on. I see my specialist tomorrow and I'm very stressed.

~Sen

i am sorry to hear about your last semester in college. once diagnosed make sure u go to the disabilities office and get the documentation u need. it helps a great deal. it sounds like u have a good doctor, which are sometimes hard to find. good luck. keep us posted.

Thanks, Sheri.

I was diagnosed yesterday: 2/12/2010

One of my friends had been encouraging me to go to the disabilities office once I had my diagnosis. My friend talked about getting someone from then to help me take notes in class in case I fall asleep and miss part of the lecture.

What, exactly, do you think they can do for me?