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Do You Think I Have Narcolepsy?


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#1 cat_eyes

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Posted 25 February 2010 - 08:39 PM

Hello everyone!

I'm new to this forum and I am happy I have found it.

I joined it to ask this question to people who might know what I am talking about.

I'll start from when I was in elementary school, that I was in a class (don't remember what I was doing other than listening to the teacher) when suddenly my head dropped for a second and then I could hold it normally again. I thought that was weird but never give it another thought to it until now.
I have always had hypersomnia, even as a baby, because I wouldn't wake up at night to eat as most babies do. I would sleep at least 8 to 10 hours straight.
Another thing that happens to me is that if I have a sudden freight, both my legs get really weak. Is is not like they get shaky, but like the force in my muscles goes away.

When I go to sleep, in a matter of minutes I start dreaming. I know that because I am not even totally asleep and I am already dreaming. I have very vivid dreams and can remember some of them everyday.

Do you think I could have narcolepsy? Would it be worth to go to a sleep clinic to get tested?

By the way, I do some other weird stuff while sleeping, like sleep walking and sleep talking and some other parasomnias, so I really think I have a sleep disorder.

Thank you for reading this and any input will be greatly appreciated!

- Cat

#2 LuciasMarco

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Posted 25 February 2010 - 10:35 PM

Hi Cat Eyes, I think everybody should be concerned with their sleep health. Your post describes symptoms pwn can relate to! One overwhelming symptom of N is excessive daytime sleepiness. So much so that it disrupts the ability to function in daily life. This may be what motivates most of us to talk to a doctor to receive a diagnosis.
I spent a lot of frustrating early teenage years visiting doctors to be told my results were normal. Very frustrating! I had never heard of narcolepsy. If your outcome is the same as mine I hope you find a proper diagnosis soon! Good Luck!




#3 cat_eyes

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Posted 25 February 2010 - 11:47 PM

Hi Cat Eyes, I think everybody should be concerned with their sleep health. Your post describes symptoms pwn can relate to! One overwhelming symptom of N is excessive daytime sleepiness. So much so that it disrupts the ability to function in daily life. This may be what motivates most of us to talk to a doctor to receive a diagnosis.
I spent a lot of frustrating early teenage years visiting doctors to be told my results were normal. Very frustrating! I had never heard of narcolepsy. If your outcome is the same as mine I hope you find a proper diagnosis soon! Good Luck!




Thanks LuciasMarco... yes, I forgot to mention this excessive sleepiness I have during daytime. Sometimes it hits me like a truck and I have to go to sleep wherever I am, even if I have to lay down in two chairs. Also, I almost watch no TV because, most of the times, I get asleep. The only problem is that this could be due to some medications I have to take on a regular basis, although it seems odd, that it doesn't matter which med I am taking (they have changed over time) I inevitably have the sleepiness, which makes me think that maybe it's due to something else. I hope I can find an answer to this any time soon. I only worry that when I tell this to any doctor, that doctor will tell me that it is only the medication and that I have nothing to worry about. I have been having this trouble for so many years that I am sick of it!

#4 hathor

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Posted 26 February 2010 - 07:09 AM

hi cat and welcome to the forum. i had to reply to ur post because it made me think of when i was in nursury school. i remember story times so well, we all had to sit down on the rug for our story and i remember doing the whole routine so well but what i dont remember is the ever getting to the end of the story lol. just stopping what we were doing and sitting quiet was enough to send me to sleep. this happened all the way through school and still happens now.the way you describe the head dropping and weak legs sounds just like my cataplexy that ive had for what seems forever aswell.
if i was you though and i was really concerned you have sleeping disorders i would go see my doc. im not a doc but sounds like you got something going on there. keep us posted though on what you decide to do and good luck
clare x

#5 amazingracie28

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Posted 26 February 2010 - 11:15 AM

Hello everyone!

I'm new to this forum and I am happy I have found it.

I joined it to ask this question to people who might know what I am talking about.

I'll start from when I was in elementary school, that I was in a class (don't remember what I was doing other than listening to the teacher) when suddenly my head dropped for a second and then I could hold it normally again. I thought that was weird but never give it another thought to it until now.
I have always had hypersomnia, even as a baby, because I wouldn't wake up at night to eat as most babies do. I would sleep at least 8 to 10 hours straight.
Another thing that happens to me is that if I have a sudden freight, both my legs get really weak. Is is not like they get shaky, but like the force in my muscles goes away.

When I go to sleep, in a matter of minutes I start dreaming. I know that because I am not even totally asleep and I am already dreaming. I have very vivid dreams and can remember some of them everyday.

Do you think I could have narcolepsy? Would it be worth to go to a sleep clinic to get tested?

By the way, I do some other weird stuff while sleeping, like sleep walking and sleep talking and some other parasomnias, so I really think I have a sleep disorder.

Thank you for reading this and any input will be greatly appreciated!

- Cat



Hi Cat Eyes,
I would say definitely go get tested. Like the others have been saying, your symptoms sound a whole lot like symptoms we PWN experience. Its interesting hearing all these stories about childhood symptoms-I remember two specific things from my childhood. The first one was when I was about 6 maybe.....I was just waking up one morning and saw the scary miner dude from the Scooby Doo cartoons standing and staring at me from the bedroom door. I was TERRIFIED!!! The other thing I remember is I was a nut about cleaning my room when I was around 11/12-ish...without fail in the middle of the process I'd always end up sleeping in the middle of my bed amidst the piles of stuff I'd have stacked on it. Then I'd wake up and pick up where I'd left off. Wierd thinking back on it now........

Welcome to the boards Posted Image !
Amazingracie28

#6 hathor

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Posted 26 February 2010 - 01:08 PM

lol gracie i still fall asleep when cleaning now and im 30 years old lol. i used to do the same and if im having a clear out everything gets chucked on the bed or sofa. if i clear a space to sit down for a minute i normally think i have sat down for a min when its actually been like two hours!! i still carry on with what im doing.
i can actually remember right back to being in my cot ( lol my mum must have made me sleep in it until i was about 2 or 3) i can remember my first nightmares as if i still have them. i dont know if its halucinations or what but i still do this. i get stuck in one position and even tho i can be having a god awful terrifying nightmare i can still see the room aswell but i just cant move to snap myself out of it i just have to ride it through and normally hope i dont die in the process. as a baby i think i got tricked into making friends with 2 talking dogs and then eaten by them every night lol.
i hardly watch tv any more because of having narcolepsy. ive lost track of the amount of times ive been watching something and then the advert break will come on and ill be wondering where my programme went. of course the programme has finished and ive been asleep and missed it and woke up with more adverts on. i dont even know ive been asleep.
so what cat writes is just like me!!! and ive been diagnosed for years. so go get checked out ata sleep clinic cat.



#7 cat_eyes

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Posted 26 February 2010 - 10:29 PM

Thanks hathor and amazingracie for your answers, it's nice to know that maybe some of the weird stuff that happens to me could have an explanation. I will certainly go to a sleep clinic ASAP. I have another question for you: what happens if you have narcolepsy and don't get treated? does it get worse over time? can it cause any other kind of problems?

#8 hathor

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Posted 27 February 2010 - 10:52 AM

hi cat. im glad to help in anyway i can. everyone who has narcolepsy suffers differently. i have had narcolepsy more or less my whole life and the doctors suspect i have had cataplexy just as long because i refused to laugh when i was a child because i said it made me feel funny.
for me the N and C has got worse over the years, because of having narcolepsy so long i dont know any different when it comes to being tired but i have noticed that over the years it has got worse. the Cataplexy has definately got worse since it was diagnosed. it affects me every day lots of times a day. for example, today i went shopping with a friend just to the supermarket. we met up with another friend while we were out. being really good friends we make jokes about each other being cheeky (we know we dont mean what we say about each other) but i had at least 3 small cat attacks in the half an hour or less we were in the shop because of laughing with my friends.
i have tried modafinil with prozac and ritalin with clomiprimine for medications over the years but for lots of different reasons i have completely stopped taking meds and prefer to be med free.
i live on my own and even tho having narcolepsy and cataplexy affects me every day i have learnt what i can and cant do. basically it is common sense that gets me by. i dont lie in the bath, if im cooking something that takes a while i make sure i keep busy until its done or just dont bother. if im traveling on a bus i always have my phone with me and headphones so i can listen to my music. it doesnt always help but most of the time it does. i use my phone for the alarm clock aswell.and lots of naps!!!
narcolepsy cant grow into anything else if you dont get medication, it isnt some kind of horrible disease. it is something that you have to adjust to. medications work for some people but they still need to use their common sense for what they can safely do. for others meds dont work so we figure out other ways. lots of people cope by changing their diet aswell. ive heard alot of PWN say that a gluten free diet works for them.
hope some of this helps. u know where we are if u need to ask anything else x