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Battling Cataplexy And Sleep Paralysis


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#1 sleep42long

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Posted 03 April 2010 - 09:54 AM

I was diagnose about 6 years ago, and have not been on much medication. I can tell that the narcolepsy has progressed over the years. It is not so much the daytime sleepiness that puts a damper on my life, but the cataplexy. I have 4 children plus two stepchildren. My eldest daughter is like my protector. She is the first one to ruch over when she sees my going down. I can't laugh to hard, get upset or mad. I can't even chase my two year old around the house. It really pisses mr off that things I took for granted I can no longer do! Has anyone had any real luck with the cataplexy meds? Also, when I have had a long day and I begin to crash, the sleep paralysis kicks in, and its not that I just become paralyzed, but It's like I am having a seizure. I begin to like convulse, and then when that settles down, even though I am paralyzed, I am still awake and can hear everything going on around me. Does that happen to anyone else or am I just "special"? I don't mean that in a good way either! To get out of the paralysis I have to fall asleep, which doesn't always happen quickly. Also does anyone suffer from headaches after the sleep paralysis and your nap?? Or feel like they have a fever and are really cold????

#2 merrymom1013

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Posted 03 April 2010 - 05:07 PM

In my family, my daughter is the one with narcolepsy. Her symptoms began with severe cataplexy. She had some success with taking SSRI's for cataplexy. (Effexor is one that is often used.) Xyrem made the most difference.
It's been more than 2 years since she collapsed with a cataplexy attack. Her level of functioning is 200% better.
What does your doctor say? If you haven't been on much medication, and your quality of life is seriously impaired, it would be worth considering more aggressive treatment options.

#3 sleep42long

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Posted 04 April 2010 - 12:12 PM

Thank you. I know it sounds easy enough to "just go on medication", but between my husband and I we have 6 kids ranging in age from two to fifteen, and my husbnad is also battling terminal cancer. So it makes things a little difficult. But I will definately look into Xyrem. Thank you

#4 merrymom1013

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Posted 05 April 2010 - 02:46 PM

Wow. My heart goes out to you. Six kids and a husband with a terminal illness sounds like way more than a full plate. While finding the right medications may sound like something you don't have time/money for, making that a priority will not only help your functioning, but allow you to better support your family. Take good care.