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Does anyone have experience with Narcolepsy?

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I'm concerned about my 14 year old. Some of her hyperactivity is an effort not to fall asleep. She is asleep by 9:00 and wakes up between 6:30 and 7:00but she continues to fall asleep any time she stops moving.


We are suppose to schedule a complete neurological exam to check for brain lesions, seizures and Narcolepsy. Dh thinks being tired all of the time is normal for a teenager, but I'm worried.


Dd just told me that the reason she resists showering is because she bashes her knees when she falls asleep and falls down. She does have Autism, and I've read that there can be a tie between Autism, Narcolepsy and MS.


I just don't really understand how it works.

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Hi Amy,


You might find this forum on narcolepsy helpful. It is moderated by Stanford University, I believe, and has been around for over ten years. Sleepiness can be a symptom of many things.





Symptoms to look for


Narcoleptics can get a kind of paralysis with emotion: laughing most commonly but also excitment, anger etc. It is basically the natural paralysis that kicks in with all normal people when they go to sleep (to prevent you acting out your dreams) but it happens during the day. This symptom is called cataplexy. It is only found in about 60% of narcoleptics but if your daughter experiences it, it is a very strong indicator of narcolepsy.


They are also more prone to 'sleep paralysis'. A similar thing. Normal people get this too. With sleep paralysis you can be drfiting off to sleep and then find yourself totally paralysed. It is a very scary experience but with the same very simple explanation as the cataplexy.


Sudden sleep attacks are also a symptom - which does sound like your daughter; but your husband is correct to say that teenagers get very sleepy too - in fact very close to the sleepiness of a narcoleptic.


To be sure your daughter has narcolepsy, it is worth having a sleep test. Narcoleptics go straight into REM (dream sleep) on falling asleep, normal people take about 30 minutes (I think).


Narcolepsy doesn't get worse and many narcoleptics find good coping strategies. They also have wonderfully vivid dreams (as real to them as real life almost) which they can control as they get more experienced. As a consequence they can be very creative people, artists, script writers. I read somewhere that Gustave Flaubert is thought to have been a narcoleptic.


It isn't something to worry about, like epilepsy etc.


I hope this helps.

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