Living with Narcolepsy

I am not diagnosed with Narcolepsy,(yet) but I’d like to share my story and receive some feedback from what I consider the true experts. You all.

I have had this problem since early highschool I can remember. I don’t remember so much falling asleep in class, then, but when I would get home I definitely needed a nap. My best friend used to make fun of me ALL the time, after we’d get home I just had to lay down.

I was pretty determined then to just get a better nights sleep so that I don’t have to endure the laughs the next day. But it didn’t seem to matter how good or bad I slept so I just started to hide what I was doing.

College of course, who doesn’t fall asleep in class? I just assumed as many of the othe storie I read and as my dad constantly told me, that I was not getting enough sleep. This was usually true anyway because of the odd hours as a theatre major and many all nighters.

Prior to my first job I can also claim one incident where automatic behavior took place. It was coming home from being out late, and I ended up in a completely different city then where I was supposed to be going. I had no memory of how I got there. Let me tell you this is scary!

My first job is when I noticed it getting worse and really thought I had SOME problem but did not know what. But if I stayed in front of a computer for too long, and I mean just 10 min or so I would fall out, really bad. I would have to get up and just MOVE. Butg fighting it never helped, I eventually started giving in by finding a little place that I could hide myself in for just 10-15 min. I was so ashamed, but this usually did the trick and I could actually concentrate afterwards.

See that was the problem, I have to describe for a moment what I was going through when sleep almost took over me. It was like a WAVE of overempowerment from my body. I can’t believe I was able to fight it (which eventially I stopped) but the problem was when I would fight it, there was just no point because I could not focus on whatever it was I was doing and would be completely unproductive and in turn felt very depressed.

I can honestly say it’s gotten worse. And meetings are the ABSOLUTE WORST. I mean I worked in entertainment at Disney World Orlando, and even when we were having meetings where our VP of Entertainment would be speaking to us (BTW this guy is so interesting and charismatic) I would still fall asleep! I hated it, and I just didn’t understand, and usually I was in a position where I was viewable by many people. EMBARRASSING :o(

Battleing it at work was one thing, but the drive home was another. It never failed, every day on the way home, I would start to fall asleep. I would have to have someone on the phone with me keeping my brain stimulated in conversation, or I’d have to pull over. See I recognized that stimulation was the key. And the people close to me knew. If no one could talk to me on the phone on the way home then I would buy a bag of popcorn and keep it in the seat next to me, because it seemed that the constant movement of going to the bag and to my mouth was enough to keep me up. I realized I needed stimulation, and then my fear was that the popcorn would one day not work since it seems to be less stimulating than driving, but was just new to me.

The other thing is that when I start to fall asleep I go into dreams IMMEDIATELY. If I’m talking to you while I’m falling out I will bring my dream into the conversation of the person with me. Again, my close friends realize that this usually means I’m falling asleep. This always surprised me because I’ve always been a very vivid dreamer and I know the difference of dreams and reality. But if I was falling asleep it was a different story. I would dream before I’m even asleep, haha this is so funny, and not all at the same time.

So now I moved half way around the world and while my body was adjusting to the time difference it was difficult to tell if I was still haveing these problems. But one year later and working I can honestly say it’s still the same. Meetings are a garuntee fall out and when I’m at my desk and this wave comes on I MUST sneak to my car and get a quick nap.

I’m more frustrated with this than ever because I really need to use all the time I have at work wisely and the lack of concentration from fighting sleep doesn’t help much.

I started reasearching this online and would never have even looked at narcolepsy because I thougt it was only the extreme cases where you really just fall asleep and have no control, but after reading up on this A LOT, I would say that I fit many of the symptoms uncannily.

I don’t do the muscle thing, and I don’t get the sleep paralasis, I don’t think. There was at least one time I can recall that I saw I was awake, but it was an awake dream. I could see the room but I could not move AT ALL, or scream thought I was for dear life in my head trying to scream to my roommate who was so close. I just assumed it was a nightmare. Actually now that I think about it that has happened to me twice, the second time though I did not have my eyes open, and was recently the other was a few years ago.

The last thing is that I went to see a nerologist, and now I wish I would have seen a sleep doctor instead. I know I fall into REM immediatley during the day, and those sleep tests I am fairly certain would show that. But the nerologist only suggested to do an EEG. I’m afraid this won’t show the result that I need unless I happen to be falling out when it’s beeing done. He doesn’t seem to think it’s narcolepsly and it seemed that I knew more about it than he did. Especially when I mentioned the dreams/hallucinations. I’m just concerned that if it’s not the result that he wants then I won’t get to go to the sleep tests.

Really I’m just want relief, an answer, a reason for my being like this. It can’t be just because I don’t sleep well because I do. I’ve been tested for hypo glycemia and I don’t have it I’ve already adjusted my life to this I just need the medicals to back it up so I can go public to my work and family and friends, please.