Narcolepsy Support Group

Hello all! I was hesitant to join this group at first because as of now I do not have a confirmed diagnosis...
I went to a new doctor on Monday. Up until this point I had been still seeing a pediatrician because they told me I could stay until I finished college but it just started getting a little weird so I wanted to change even though I still have 1 more year of school left. I have been experiencing what I now know to be symptoms of narcolepsy for several years but it has been getting increasingly worse over the last year. My pediatrician had tested me for mono and other such disorders over the years but never came back with anything. When I went to my new "grown up" doctor on Monday I had to receive a full physical since it was my first visit. (I am awaiting the results of the blood work and such)Upon describing my symptoms of what I was experiencing to him he right away brought up the possibility of narcolepsy and immediately scheduled me for a sleep study at a sleep clinic. I will be doing this on the 13th. After talking with my doctor and doing research online I have determined that I experience the following:
1. Extreme Daytime sleepiness
I take frequent naps during the day and feel as though at any point I could fall asleep. It is very difficult for me to sit through lectures or watch tv without falling asleep. Although… oddly I have a hard time falling asleep at night. I feel as though I almost function better at night time. I typically can not fall asleep until 3-4 am. Then if I do not have anything to do the next day where I have to get up I can sleep until 3-4 pm, waking up for a few brief periods in-between. Then, even when I wake up I am still tired and can still take naps into the evening. I have a very difficult time waking up early due to the fact that I can not fall asleep at night. I have had to strategically schedule my classes so that I do not have to get up as early or so I can take naps...

2. Sleep Paralysis
This happens to me VERY frequently. An example that I can give is the other day my little brother, who is 10, came in my room around 1 pm while I was sleeping. I heard him open the door, walk across my room, and I was aware that he was standing by my bed but I could not wake myself up. I was thinking to myself "GET UP! Why can't you wake up?" But I couldn't. It is always very scary and I describe it to be in like a comatose state. This has also happened to me while the tv was on and I can hear and identify what show is on and what they are saying but I can not wake myself up, move, or open my eyes.

3. Hallucinations
I feel really weird talking about this because it makes me feel crazy (which I assure you I am not) and I do not know if it is normal or associated with narcolepsy. This usually happens to me as I am falling asleep or as I am just waking up, and it is usually very scary images. Once I even thought that someone was touching my arm. I think maybe I start to dream before I go to sleep or something...it is really weird. For an example, although this happened upon waking up...I was sleeping and was experiencing sleep paralysis. When I was finally able to wake myself up I opened my eyes and saw a scary face with red eyes right by my face. I closed my eyes again and then opened them and it was gone. It left me wondering, "was that a dream? Did that just happen?" It was very scary.

4. I jerk a lot in my sleep. I have even jerked and then woke myself up from it.

5. I have frequent nightmares which sometime lead to night sweats.

6. I dream a lot! Even if I am only asleep for a few minutes and someone wakes me up, I will be in the middle of a dream.

I read online about cataplexy, and I do not believe that I experience this. Although my muscles and joints are always sore, I never lose function of them or it never comes on suddenly. Isn't that what cataplexy is, or am I confused?

I am not sure if I have narcolepsy...I was hoping maybe other people who have a confirmed diagnosis could maybe give me their opinion. Another thing I was hoping to get opinions on was the drug Ambien. My doctor prescribed this to me and told me to take it every night up until the sleep study. However, my mom is very concerned about me taking this because she has heard of horrible side effects associated with it. Even though I am 21, she has "banned" me from taking it, and I haven't as of yet. Has anyone ever taken it? Does it have side effects? Does it work?

I guess I will know for sure if I have narcolepsy after my sleep study on the 13th. Although my doctor did say that "he would bet his bottom dollar that that's what it is." I guess I am just nervous and confused and just anxiously awaiting the 13th....if anyone has any advice or opinions I would really appreciate it! Thank you so much for taking the time! God bless!
Posted on 07/03/09, 01:07 am