1704625 tn?1310708761

Hello Everyone!

I know personally how hard it can be to have a sleep disorder.  I have narcolepsy.  I feel that my family and friends have a little difficulty understanding exactly what's going on with me.  So, I thought perhaps opening my own group where I can feel comfortable and discuss day to day life with others that have sleep disorders would not only help me out, but possibly others that are effected everyday like me.  I am eager to hear from all of you soon!
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Avatar universal
I'm new to medhelp
i was just recently diagnosed with narcolepsy and just wanted to join an online community to see if it could be helpful. I can also just sleep all day but i try to stay awake and try to avoid naps because a half hour nap can turn into 3 hours really easily for me. however, if I do wake up and get up, i still won't be really awake for another half-hour or so, example - i could watch a tv show when i first wake up and later in the day remember watching it but not remember anything that happened in the episode.

i'm trying walks to help wake up faster.
also I am very forgetful because of the narcolepsy and trying to make lists. Any other suggestions to help deal would be appreciated
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Avatar universal
I too just signed up to this site in hopes of finding ways to help my 9year old son manage narcolepsy/cataplexy.  I'm finding diet, sleep schedule and exercise are key to getting thru day happily.  SUGAR and CHOCOLATE never help.  

I'm curious to know if either of you received flumists prior to onset symptoms?
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Avatar universal
Just got diagnosed myself, but considering my history, I think the signs have been there for a lot longer. I just never thought anything of it, because I've been an insomniac from birth (my poor, poor mother!) so "tired" is just a way of life for me.

Recently, though, one of the supervisors started complaining that I was sleeping all the time at work. I didn't believe him, because I didn't feel sleepy, didn't feel like I'd gone to sleep, didn't feel like I'd woken up ... Until the day he sent me a message saying to come see him "when I woke up" and I didn't see it for 30 minutes. Despite that, as far as I was aware, I had been looking at my computer screen that whole time! Told him I'd go see the doctor, and this is where it led.

My current supervisor is making accommodations. Doctor reccommended a 15-20 minute nap every 4 hours, and I work 8. So, mid-shift (I work graveyard shift.), I go out to my car and take a nap. When it isn't safe to do that due to the weather, I'll be allowed to use an empty office in our area, but it's too noisy up here to use it all the time. Plus, I can lie down in my car!

My mother, who lives with me, understands. She was diagnosed with narcolepsy several years ago, when she kept falling asleep at traffic lights. She stopped driving any distance without someone else in the car. If someone else is in the car, she's fine. I've never fallen asleep driving, just apparently at work, and I think once at school.

No one else seems to understand it. The other supervisors here just keep telling me, "well, when you feel sleepy, just get up and walk around." They don't understand that I DON'T FEEL SLEEPY! I just ... fall asleep. Sure, I feel tired, but no more than I always have, and I don't feel like I'm about to fall asleep. They just don't get it.
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