Narcolepsy Forum Posting

Posted by PillowGirl on September 25, 2002 at 21:40:34:

In Reply to: Re: Re: Re: Re: Re: Re: Re: Interesting tidbits on Xyrem posted by sleepydog on September 24, 2002 at 22:31:50:

I know that it sounds weird to "forget" something like N. Maybe ignored is a better word.

I was diagnosed when I was 15 after an MSLT. I spent a year having horrible fatigue and falling asleep in class. I had also had a depression around 14. I was having *terrifying* SP and HH five or more nights per week. My parents just said "everyone has nightmares". I had my of phone line, so I would call the house line everytime I had one and make my parents sit with me for about an hour. i thought that I was crazy.

They finally got sick of being woken up all of the time, so they took me to a sleep center. I did take home overnight followed by an MSLT. The dr said that I had a case of "a-typical narcolepsy". I seem to recall that I was a minute off on the time requirement for falling asleep.

The Dr put me on cylert and (I think) Elavil.
That was the last appt that I had w/ the sleep dr. My parents never talked about the dx. They were not at all supportive. I wound up having to drop out of college, because I could not wake up during the day.

I went to massage school and weaned myself off of the Cylert. I thought that it was causing me to make some poor decisions.

After that I just kind of chose to ignore the symptoms. Chalked them up to something else (like that I was lazy, that it was some kind of mental problem with me).

So, I spent 8 years beating myself up for being lazy and a shut in. I asked my parents about my memories of the dx. They said that they did not remember anything about it, that the dr thought that I was depressed. (I now have the medical records, and it turns out that I DID have an N dx).

Over the years I tried all kinds of stuff for my fatigue- accupuncture, food allergy elimination, anti-candida medication, b-vitamins, 5-HTP. None of it worked.

I started having Migraines back in February- even have a blind spot in my eye from them. Saw a neurologist for this. One night I was having HH and SP, and i started shaking in bed. Called the Neurologist and she did an eeg for epilepsy. When that came back fine, she refered me to the sleep dr.

Had the MSLT, and it came back with unambiguos results of the Big N.

Wow, didn't mean to turn that into a novel. Now I feel that I may have a chance of getting my life back. I too have been thinking of art again.

I feel like I have really lost myself. Now that I have more energy, I don't know what to do with it. What do I like to do with my spare time is the question of the month. I really don't know, as my life has previously been spent trying to stay awake ;)

I have been a bit of a shut in, and I used to be a much more social person. I feel like a social moron right now (though my few cose friends would probably disagree). I guess I don't know how people with energy live their lives.

I have been thinking of hunting down a N supprt group in the Seattle or Kirkland area. Maybe see how some other people cope....

Sorry for chatting your eyes off 80)

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