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This section is a place to share stories about Living with Narcolepsy.
Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.
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My teenager son has narcolespy
by: LS
on Fri, Sep 21 2007
My son was diagnosed with narcolepy when he was 11 he is now 15. I wish their was a better medication or more research done with kids & teenagers. School is really difficult trying to keep him awake in classes, he falls asleep. Music tends to help stimulate him but that to in an interference with other students in the classroom. I have reached a point where I do not know where to turn to. He has bursts of frustrations and curses and just can’t stay awake. HELP!
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Comments
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Tue, Nov 20 2007
i am so sorry.. i know what he is going through,i am now 29
but growing up was hard. even before i knew i had it everyone just
assumed i was lazy,and ...Read
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Mon, Oct 22 2007
Xyrem is still working. We gradually increased the dose to 9 ml twice a night (4.5 grm twice per night), but he got side effects of anorexia, nausea a...Read
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Sun, Oct 21 2007
I would like to know if the Xyrem is still working, and if he has to wake up after sleeping 4 hours to take another dose? Also how hard is it for him...Read
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Wed, Sep 26 2007
My son who is 15 also has narcolepsy although it developed when he was 11/12 not diagnosed until last year when he was 14. We tried Provigil which hel...Read
September 2007
- Gone too far. - by Lori - (Mon, Sep 24 2007)
During one of my episodes I drove my vehicle got into two accidents and eventually 4 hours later I drove my vehicle off the road,strangers got into my car, my dogs were in my vehicle initially but I was told I let them run in a field.
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- Can’t stay awake - by GJM - (Fri, Sep 21 2007)
I am a 36 yr old who has been living with this disorder for some time. My father had the same problem but for years we always chalked it up to overwork and just being tired. To overcome this, I thought all I had to do was stay busy. Don’t sit down too long, sing when I drive, keep moving, keep moving.
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- My teenager son has narcolespy - by LS - (Fri, Sep 21 2007)
My son was diagnosed with narcolepy when he was 11 he is now 15. I wish their was a better medication or more research done with kids & teenagers. School is really difficult trying to keep him awake in classes, he falls asleep.
[more..]
- NARCOLEPSY - by AJ KIRK - (Thu, Sep 20 2007)
I WAS DIAGNOSED WITH THIS DISORDER ABOUT 3 YEARS AGO. I HAVE BEEN ON PROVIDGIL, BUT IT IS NOT BEGINNING TO WORK BECAUSE OF THE MEDICATIONS I HVE BEEN ON SINCE HAVING MULTIPLE SURGERIES.
[more..]
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