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Living with Narcolepsy

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God Was My Pilot and I Tagged Along
by: Beverly on Tue, Sep 16 2008
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I’ve always been a sleeper. My mother always called me lazy, though having to wash dishes was like a curse. During the summer of 2001 sleeping took on a whole new meaning for me. I could not stay awake for the world. Going to movies became a waste of money. After lunch I always had to stay behind in the car for a nap. I would tell my friend that if I had not come in in 30 minutes to please come and check on me. Dinner with friends was always interupted by a need to take a nap. You know the saying, “God is my co-pilot”? Well that summer “God was my pilot and I tagged along.”

I had always had bouts with tiredness from being anemic but this was all together something else. It had to be. I couldn’t stop at a stoplight without falling asleep. I would tell my son, who was at that time 14, to wake me up when the light turns green. God was surely my pilot because to this day, September 14, 2008, I have never had an accident as a result. I drove home on autopilot, which is really a auto-response due to the fact I had taken the same route home for 10-years and I was alert enough to know and respond to the stoplights. I can’t count the number of times I got home and couldn’t remember driving.

Everytime I closed my eyes, I had these horrific dreams that seemed real. I thought I was in a spiritual battle. Only the dreams would pick up from where the night before left off. When I woke up I could write them down word for word, know the characters and there names, the music that was playing and all. They would sometimes go on for weeks. Usually until I figured out what was up with the main character that was always my son’s father portraying something evil.

I started having a visitor to my bed every night. As soon as I closed my eyes, I could hear his footsteps coming down the hall. I could feel him look over at me to see if I was asleep. I could then hear him remove his shirt, feel the mattress depress as he stepped over me and lie down. At the beginning he raped me. Because I lived alone at the time and had been celibate for spiritual reasons for about five years, shamefully I started to look forward to the visits and it wasn’t rape anymore. I woke up in the morning feeling as though I had something to confess. When he didn’t come I missed him, questioning him about where he had been ( I could write a movie).

I also started dream flying which was the coolest thing. I was a morphing dream flyer and would wake up in the morning with a cool face as though I had really been flying. Then there were the encounters with Satan when I would wake up with my face burning hot as though I had really been in his presence. Lastly were the creepy crawlies that would pitter patter down the hall and crawl all over me, probing me. They turned out to be alien. Boy oh boy, what a time I had.

The culprit turned out to be narcolepsy with cataplexu. I was diagnosed by way of sleep study in February of 2002. I entered REM four out of five times, the longest time taking 30 minutes and the shortest was three. I was so relieved. I thought I was headed to the Dorthea Dix.

I have tried several different cocktails, the best being Ritalin and Provigil for the daytime sleepiness and Effexor and imipramine for the hypnogogic dreams and hallucinations and cataplexy.

Each summer, the heat makes it worse. Previously being treated by a Neurologist, I am currently being treated by a wonderful sleep specialist. Amazingly, back in 2002, Xyrem (X or the date rape drug), was approved for the treatment of cataplexy and the following year narcolepsy. It is phenominal. There are strict federal regulations that the doctor and I have to adhere to. They can only be gotten from one company, shipped Fed-Ex directly to me. If lost, stolen, or used in a way other than for what it is intended, my doctor and I both could go to jail. I almost feel like a new and normal person. I still take the Effexor but no longer the imiprimene. I was taking two kinds of Ritalin twice a day each and Provigil three. Now, on the average, I take those only once a day. I have experienced no side effects.

Narcolepsy has been many things for me. Where most might consider a curse, it has helped me to find myself. The ritalin I took opened a whole new world to me. One that I had been missing and letting go by undetected. It opened my mind to God’s secret knowledge for me and finally at the age of 44 I know what my passion and purpose is. The thought of sitting in a classroom again frightened me because of the narcolepsy. Now that I am taking the Xyrem, I may actually be able to sit and learn in a classroom.

We mustn’t take our sleep for granted. Too much and not enough will ruin your life. I even just learned that the body keeps up with the sleep it doesn’t get and will attempt to make it up. Sometimes the body never catches up on its sleep.

Good sleep is the most important contributor to our health. Don’t assume a sleep problem will just correct itself and see a sleep specialist for help.


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September 2008

  • MY HUSBAND - by KRISTY - (Wed, Sep 24 2008)
    My name is Kristy my husband just found out about two years ago that he has narcolepsy. [more..]
  • narcolepsy - by Pam - (Tue, Sep 23 2008)
    I am a 59 year old female and have been suffering with narcolepsy since I was seventeen. [more..]
  • God Was My Pilot and I Tagged Along - by Beverly - (Tue, Sep 16 2008)
    I’ve always been a sleeper. My mother always called me lazy, though having to wash dishes was like a curse. During the summer of 2001 sleeping took on a whole new meaning for me. I could not stay awake for the world. [more..]
  • Scary Events - by Jim - (Mon, Sep 15 2008)
    I’m wondering what’s wrong with me. I was in the kitchen at bedtime and was startled to find that I had a stove burner on high; and a box of butter in my hand. For absolutely no reason! [more..]
  • Car Crashes! - by Lady Rose - (Thu, Sep 11 2008)
    Well my narcolepsy was finally correctly uncovered after i had already totaled 7 cars. First time i drove a car by myself i feel asleep and did it for years. [more..]
  • Sleepy hasn’t been so bad. - by Audra E. - (Thu, Sep 11 2008)
    I was just diagnosed with narcolepsy yesterday, but I have been falling asleep inappropriately since early high school. I fell asleep in classes all through college and when it was time to study for the final often found that I couldn’t read my own notes cause I had been automatically writing while asleep. [more..]
  • Trouble w/ Narcolepsy treatment - by Jenny - (Tue, Sep 09 2008)
    I think my sleepiness started in middle school. I’d always come home and take a nap. I always went to bed at 9:00 at night on the week days because it was hard enough waking up to get ready for school the next morning. [more..]

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