So Many Stories So Little Time.....

by Lisa
(PA)

I was diagnosed 5 yrs ago, finally at age 30, I began to show signs at age 14-15 yrs old, I was viewed in school as an ignorant teenager who always slept through classes. My 11th grade yr I took a health occupations class, my instructor who worked at our local hospital was disturbed by my constant sleeping in her class as well but she could see that I loved every minute and participated as much as possible but still never could make it through not one class without falling asleep. So one day she had arranged for us a trip to the hospital to see an ultrasound being done and I fell asleep standing up right next to her. So then she took us over to the lab where she worked and aked us if anyone would like to get their blood drawn and she was looking right at me. Of course i am a trooper I have other health conditions so the hospital was nearly a second home for me so I said sure why not, she said great because I would like to see if your iron is low, she thought I was anemic. So she tested me and it was normal. I went home that day and told my mom what happened reluctantly, I was afraid I would get in trouble for sleeping at school. But she said next time we go to the doctor we will ask him about this. Well he just shrugged his shoulders and said I did not fit the profile for sleep apnea because I was a child, not even close to overweight or near obese and no cardiac problems whatsoever. After bugging him over and over he sent me to the University of Michigan Hospital where I had my first MSLT and by this time I was near 18 yrs old and my doctor never got back to me on the results and my insurance ran out and never did find out what the outcome was.

So life went on from vivarin, ephedrine pills, caffeine pills, smoking, anything that said it would help me stay awake that was legal and over the counter of course I tried and finally made it through college. Again annoying all of my instructors, disrupting class and disrespecting them with my sleep problems. I did graduate, got a job at my site I interned at then couple years later moved to the east coast and started working for a cardiologist who referred several of his patients out for sleep studies so I asked him about it one day and I found a sleep doctor to go to and he started me on Provigil 200mg twice a day I couldn't believe it! Here all this time since high school my friends would tease me and say yeah don't mind her she is a narcoleptic and they were right...who would have known!!

Its kind of a funny story to me and my friends they could probably tell stories so much better about me such as hey Lisa are you awake and my eyes were closed as I would be driving and i answered them "yup, I'm awake!!", I have memorized that phrase in my sleep i think and when I hear anything I just say it, just in case someone is listening! LOL!

I have done well with hiding it with excuses and such but its so tiring day in and day out trying to fight this disease! Its like the devil is inside of you and fighting to get him out and keep him out for good!!!

That reminds me of a funny story actually. I dated a guy at age 19 we bought our first house together he was just finishing up school as an RN I hadn't even thought about college at this point but anyway he came from a very religious background and when I finally had the nerve to tell him about my cataplexy attacks he thought I was possessed by the devil and the devil was trying to take me over!! He had me so freaking scared I was crying hysterically and he said that it was because I like to watch scary movies I was inviting him in. So I didn't want to watch anymore scary movies either which I had always loved to watch! I can laugh now but that was not a fun time for me. I would make him watch me in bed when I knew it was going to happen and the more I thought about it the more I believed him because when I would try to open my mouth to scream or try to twitch my finger the feeling would be that much stronger, if I just relaxed and gave up i felt it won the battle and I would eventually just fall asleep.

Another cataplexy attack was on a Friday afternoon at the hospital where I used to work it was about 4:45 pm everyone is standing in a big circle talking, joking and laughing and someone said something so funny I felt my knees buckling beneath me and my arms became limp and my head was heavy and so I was like crouched down and I put my hands on my knees for support and played it off like I was just laughing hysterically-a real knee slapper i guess!! Again this was before I was diagnosed or knew about cataplexy and was embarrassed by it. Now I pretty much am afraid to really laugh at anything, I just do like a fake chuckle in fear of falling. Sounds pretty sad hey?

There is actually one other time I can think of where I had a cataplexic episode that was funny, this was after the diagnosis, treatment and only like 3.5 yrs ago. On sat morning I woke up and my girlfriends kids came in to bounce on the bed and get me up, I was laughing a real laugh at something as I tried to get out of bed to go to the bathroom and my bed was kinda tall and I swung my legs off to the side and as soon as i put weight on them they buckled before I could catch myself so i landed right on my behind on the floor and now I am laughing even harder and everyone is standing around me laughing and I am trying to get up and I keep falling back down and I am getting frustrated and still laughing and I had sit there probably a good 15 minutes uncomfortable as hell waiting to be able to stand up. I was not really embarrassed because they all knew what I had and my friend is a nurse. I'm just glad to know I am capable of still laughing a real belly laugh again!!!

Tanks for reading, it was fun writing. Hoping to read other peoples stories to help me put things in perspective because I don't know anyone who suffers what i do and its very comforting to read others information and experience things similar to me.

Thanks.

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