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#1 Linna

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Posted 19 September 2010 - 02:58 AM

So it's 3:00 am and I am awake and hungry!!
I go to sleep ,,,,,,sleep 20 minuets.... and wake up for an hour or so go back to sleep for a whole 20 more minuets the cycle repeats itself....
Often falling back to sleep is difficult....I will be dozing off and gasp for air while flailing around , arms thrashing , still have asleep. I don't have sleep apnea. My husband has told me that I do the gasping thing for about 15 to 20 minuets ,gasping every 45-60 seconds hardly ever opening my eyes until eventually I fall asleep and the gasping stops. I am aware of the gasping as it scares me terribly but I never can wake myself up fully and I fall back to sleep only to repeat the cycle. It is a very scary thing and I hate it!!! Does this happen to any of you ? Is this related to narcolepsy or is it something else completely unrelated to narco? I feel like a waco....
sometimes, most time, the only way I sleep through the night is if
I take Tylenol pm
Some nights I wake up sooooooo hungry and all I want to eat is bread, or crackers or cereal. I don't want to gain weight but sometimes I just find myself in the kitchen in the middle of the night (in the dark) eating a piece of bread before I even know what I m doing!
By the time morning rolls around I am so exhausted that I don't even want to take my meds because I am so sleepy all I want to do is sleep
Is this 'normal ' for a narcoleptic? Does it happen to you? I am so Tired of having narcolepsy
!

#2 hyperlexic

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Posted 20 September 2010 - 12:03 AM

I'm not a doctor, but it sounds like you have night terrors and either night eating syndrome or nocturnal sleep relating eating disorder. The difference between night eating syndrome and nocturnal sleep related eating disorder is the level of awareness. Night eating syndrome is indicated if you wake up multiple times to eat, and if you eat at least 25% of your calories after dinnertime. I have NES and when combined with narcolepsy it can be devastating. It sounds like you are eating because you are hungry, so it's probably NES. There are some things you can do to help combat the amount you eat at night. One important thing to know is that it takes twenty minutes for your body to know that you have eaten. In other words, try eating a small amount and waiting twenty minutes as opposed to snacking for twenty minutes. Another thing you can do is to force yourself to eat breakfast and lunch. Your body won't want to do it, but as your body can't digest food that is eaten at night properly (the digestive system is much slower at night) it's important to get your calories when your body can digest them. NES is a curable syndrome, there aren't many of them. Nocturnal Sleep Related Eating Disorder is more complex. It is indicated if you eat while asleep. If you actually are asleep when you get that first slice of bread, you'll need more help than I can provide. I know far less about NSRES.
Back to the night terrors, my mom experiences them, but as she hasn't sought treatment, I know little about what can be done about them. I do know that some medications can cause them. As for the waking up frequently, that's normal for narcolepsy. It's the thrashing that indicates night terrors. I wouldn't necessarily recommend taking Tylenol PM, try discussing the possibility of going on xyrem with your doctor. Make sure if you are prescribed xyrem that you start out low and take your time getting to the proper dose, close to a month before upping it is normal. Don't quit because you feel a little queasy, feeling a little sick is normal when starting a new medication, your body needs time to get used to it. If you need someone to talk to, email me at hyperlexiclinks@gmail.com

So it's 3:00 am and I am awake and hungry!!
I go to sleep ,,,,,,sleep 20 minuets.... and wake up for an hour or so go back to sleep for a whole 20 more minuets the cycle repeats itself....
Often falling back to sleep is difficult....I will be dozing off and gasp for air while flailing around , arms thrashing , still have asleep. I don't have sleep apnea. My husband has told me that I do the gasping thing for about 15 to 20 minuets ,gasping every 45-60 seconds hardly ever opening my eyes until eventually I fall asleep and the gasping stops. I am aware of the gasping as it scares me terribly but I never can wake myself up fully and I fall back to sleep only to repeat the cycle. It is a very scary thing and I hate it!!! Does this happen to any of you ? Is this related to narcolepsy or is it something else completely unrelated to narco? I feel like a waco....
sometimes, most time, the only way I sleep through the night is if
I take Tylenol pm
Some nights I wake up sooooooo hungry and all I want to eat is bread, or crackers or cereal. I don't want to gain weight but sometimes I just find myself in the kitchen in the middle of the night (in the dark) eating a piece of bread before I even know what I m doing!
By the time morning rolls around I am so exhausted that I don't even want to take my meds because I am so sleepy all I want to do is sleep
Is this 'normal ' for a narcoleptic? Does it happen to you? I am so Tired of having narcolepsy
!