Possibility of narcolepsy: Sleep specialists please answer?

Posted , 6 users are following.

I'm a 15 year old girl and thought I was just you're typical depressed teen who loves to sleep and thought nothing of the other symptoms I've had or the fact I find myself wanting to sleep a lot... except it's to the point where it's all I want to do. Hanging out with friends, eating, at school, in the car, watching tv, guests over, etc... all I'm thinking about at the time is going back to sleep. Sometimes I'm sleepy but can't sleepand just stay in a guess a kind of hibernation mode for an hour where I just lay with my eyes closed. others I lay my head down or sit down and crash within a minute or two. this has been a majority of my summer, and because I've got nothing to do I've been really paying more attention to it.

because school starts in 2 days, I took it upon myself to look up sleep disorders and look at the symptoms to see if i should get a sleep study done to help me do better in school if they can figure out what's wrong. and it struck me to what I've been dealing with for the last 3 years may not have been just nothing. So in the past 3 years this is what I've dealt with:

12 years old:

(needing 5-7 hours of sleep to feel refreshed for the most part on "normal" days)

•staying up all night

•sleeping all day

•after sleeping all day, also wanting to sleep all night too

•possible hallucinations of voices and feelings before bed

•even with a good night's rest wanting to sleep all day

13 years old: 

(needing 5-7 hours of sleep to feel refreshed for the most part on "normal" days)

•wanting to sleep a lot more often and occasionally staying up for a day or two

•first time ever falling asleep in class, awoken by a teacher who had evidently been talking to me for 2 minutes trying to wake up and did not wake up until my friend punched me (my first recollection of falling asleep against my will, but I've only had a few of these point blank pass out episodes like maybe 2 or 3)

•alarm clocks not waking me up

•staying home because I'm simply too tired to go to school, and sleep pretty much all day even though I had a good 7 hour sleep

•during punishments of writing sentences, I'd fall asleep with a pencil in my hand for maybe 5-10 minutes, depending if my mum walked in or not and how long I could get away with it

•foggy memory, dozing while still concious in class or at  home and forgetting pretty much anything anyone told me

•forgetting what I was doing yet carrying on doing whatever I was doing

•still wanting to sleep after a good night's sleep

14 years old:

(needing 6 to 9 hours of sleep to feel fresher for the most part on "normal" days)

•lethargic for a majority of the day

•staying up for 1-3 days on occasion but mainly wanting to sleep 24/7

•feeling weak in the knees, or legs in general. looking back, I realized it was mainly when laughing and slurring or stuttering while angry(idk if these are related)

•being in a dream while still awake, like right before falling asleep or right after waking up

•falling asleep more often in class even during tests or lunch or gym

•alarm clocks don't wake me up

•fighting falling asleep while walking

•foggy memory, dozing while still concious in class or at  home and forgetting pretty much anything anyone told me

•forgetting what I was doing yet carrying on doing whatever I was doing

•still wanting to sleep after a good night's sleep

15 years old (now):

(needing 8 to 12 hours of sleep to feel refreshed for the most part on "normal" days)

•lethargic almost 24/7

•staying up for 1-5 days occasionally but usually just sleeping all day

•feeling weak in the knees, or legs in general. looking back, I realized it was mainly when laughing and slurring or stuttering while angry(idk if these are related)

•feeling weak and tired so I'd just sit down or lay down anywhere (kitchen floor, living room floor, in the shower, on the way up the stairs, half way  onto the sofa, at the kitchen table, outside on the pavement), but i didnt always sleep. sometimes if I could id sleep and most of the time be able to just go out like a light bulb, and if I can't just sit there or lie there staring off or something

•being in a dream while still awake, like right before falling asleep or right after waking up

•alarm clocks have woken me up twice in the last 4 weeks of having an alarm set for 4 times during each week

•sleeping through phone calls

•answering phone calls or texts that I got while sleeping? (idk if thats related)

•fighting falling asleep while walking

•foggy memory, dozing while still concious in class or at  home and forgetting pretty much anything anyone told me

•forgetting what I was doing yet carrying on doing whatever I was doing

•still wanting to sleep after a good night's sleep

•most days probably sleeping about 16 to 18 hours a day all together

So that's my log from what I can remember over the past 3 years.

And by "normal" days I mean being able to get myself through the day without having to fight the urge to sleep during class or take a nap before 3 pm, but still low energy and groggy usually.

searching my symptoms on google after reading about the different sleep disorders, surprisingly narcolepsy came up as a majority of the results. I thought that was when you just fell down passed out out of the blue but reading more into it, when it first develops you're just tired all the time. Could I be experiencing the beginning stages of narcolepsy?

If you have any other thoughts pleas share. Thanks (:

Thanks.

0 likes, 6 replies

6 Replies

  • Posted

    Hi unoriginal (I can't believe you are really that!)

    I don't know anything about narcolepsy, so can't help with that, but please do go and get yourself thoroughly checked out by your doctor. There are all sorts of issues that cause fatigue, and they can be helped through medication or diet or lifestyle changes.

    Just for an example - low iron or B12 or other things in the blood can cause extreme tiredness. Depression can cause it. Or thyroid problems. Also I would have thought 5-7 hours sleep for a twelve year old is way too low; maybe you have been long-term sleep deprived and your body is simply telling you you need more sleep?  Is your diet good? Are you getting all the nutrients you need?

    I hope you find some help, it must be so frustrating for you to be putting your education and your life on hold while you just want to sleep. But take heart, there will be help out there, this won't last for ever.

    • Posted

      thank you. I had trouble sleeping then haha. varied from too little sleep to too much. 5-7 was average for me going to bed at midnight and waking up at 7 for school haha.
  • Posted

    Hi you are very intelligent young lady, you are very switch on to your body. I'm 39 and was diagnosed with Narcolepsy with catapalxy about 5 years ago, but I have had it since I was a teenager. It affected my schooling and all other aspects of my life. I put alot of weight on in my late teens so you need to be aware of this as it is a problem with people who have Narcolepsy. It would be better for you if you have it you have it address now. I don't know where you live but if you search on internet for sleep consultant in your area. Then go to your GP with your information and ask for a referral. It would be better sooner rather than later to get seen so you can explain to school or future college etc as it is classed as a disability and you should be allowed support. If I can give you anymore help please let me know. It may also help you to go to Narcolepsy UK website.
  • Posted

    Take the summary of all your sleep related problems to your doctor and ask him/her to refer you to a sleep lab.
  • Posted

    Hello,

    I actually work in a unit which deals with sleep disorders, and it certainly appears that you have a problem. Your constant fatigue and deep sleep with difficulty waking needs to investigated in light of your other symptoms.

    In the first instance I would ask your GP to run some basic blood tests to rule out conditions like: Anaemia, Thyroid disease, certain blood disorders (without scaring you, but some conditions can present as extreme fatigue without any other obvious symptoms - do you bruise easily or get frequent nose bleeds?), Hormone disruptions or even Epstein Barr Virus, and even some of the autoimmune conditions i.e. Lupus.

    One of the possibilities is Klein-Levin Syndrome (also known as 'Sleeping Beauty Syndrome') which is particularly common in teenagers. The prolonged periods of sleeping you have would support this rather than Narcolepsy. Narcolepsy is a very complicated condition but is typically presented with episodes of sudden falling asleep for short periods and a relatively quick return to normal function, unlike in your experience where you have the foggy-brain, slurring etc. 

    I would recommend that you speak to your parents and go with them to your GP to discuss in detail your problems. I would also ask for a referral to the nearest Sleep Disorders Clinic in addition to the blood tests I mentioned.

    Good luck.

     

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