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1704625 tn?1310708761

Hello, would like to talk to others with narcolepsy.

Hello, everyone, I am fairly new to medhelp, and the sleep disorders community.  I have narcolepsy, and was diagnosed about 4 years ago, or close to that.  I was wondering if anybody else who has been diagnosed is still in denial after that long, questioning....maybe it's something else?!  I can't believe I have narcolepsy.  Yet, I had 2 seperate sleep studies done, the first ruled out sleep apnea, restless leg syndrome, and the sort, but showed an extremely high possibility of narcolepsy.  Which sent me into the second sleep study, all night and all day study, which came back extremely high for narcolepsy.  It seems that I can fall asleep in less than 7 minutes, I begin dreaming quickly and much more frequent than normal in extended intervals.  I believe that I have been asleep when I was really awake and awake when I was really asleep.  However, unlike, the 15 minute naps being completley refreshing, they are not always.  In fact, I can sleep and sleep and sleep and still want more sleep!  Yes the naps help though.  I actually caught myself signing a song under my breath today, went something like this, "I just want to sleep all day, that's all I really want....."  Any other narcoleptics want to share their story with me or just start a chat about the narcolepsy topic?
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1704625 tn?1310708761
Well, I was hoping that there was somebody out there that I could relate to, and I'm sure there is.  So, where are you?  Anybody, ever wonder, what if I've been misdiagnosed?  Does anybody wonder?  What are other illnesses that you could possibly have that would cause you to be misdiagnosed with naroclepsy?  Anybody know?
Helpful - 0
2 Comments
I have it too just been told I have it. I’m getting really bad sleep attacks I walk with sticks to hold myself up plus I’ve been told I need a wheelchair
Oh, that's hard.  I have a family member with nacolepsy.  She takes medication and it works wonders.  She has alert times and times she knows she will be tired when the medication isn't on board that she plans around.  She has a pretty normal life complete with raising kids and a job.  Why do you need a wheelchair if I may ask.
Avatar universal
MEDICAL PROFESSIONAL
Hello and hope you are doing well.

Narcolepsy is diagnosed by the sleep onset REM episodes (SOREMs), wherein the person goes into the dream phase or REM cycle soon after sleep onset. This is evident in the Multiple Sleep Latency Test (MSLT). Narcolepsy  is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. It can however be regulated with medications. So, ensure to take them regularly and follow up with your doctor.

Hope This Helped and Do Keep Us Posted.
Helpful - 0
1704625 tn?1310708761
Thank you for your reply.

Well, according to what I have been reading from other posts and what you have written about narcolepsy, I should stop denying to myself that I have narcolepsy.  I just wish that I could find some kind of magic cure!  I have medication that my neurologist prescribed for me, which we had to change 3 different times and than adjust and re-adjust the dosage until we got it right.  Right now I take dextroamphetamine in 10 mg doses up to 4 times a day.  I still get very tired and can fall asleep easily.  I get very irritable when I start going into these "sleep attacks."  Which, I feel bad about, because I have 2 young children that don't really understand why Mommy gets so cranky.  I feel like there is nothing I can really do about it though, because when I go into these attacks it's like a switch flips and all I can think about is SLEEP, SLEEP NOW!!!!  I also have loss of muscle function at times, such as, I may be walking and suddenly my legs just give out from under me and I have to catch myself before I hit the ground.  At times, when I am very tired I may have trouble holding my head up and find myself jerking around and letting out unintentional vocal noises too.  

However, I do have a question for you:  What do you mean by automatic behavior?

Thanks again!
Helpful - 0
Avatar universal
Hi there -

I'm somewhat in the same boat.  I was diagnosed with narcolepsy two years ago, and have only recently recognized my cataplexy as such.  That made me really think about denial, or more importantly, how I've been denying to myself that I haven't made the necessary lifestyle changes to ensure my health and safety.  I just found this forum, so I'm hoping to find a 'support group' online, since there doesn't seem to be any in my area.  Maybe we could lend each other some support and 'adjustment' tips.  :-)

Tracey
Helpful - 0
Avatar universal
I have begun to wonder in the past week or so if perhaps I have a very strange occurance of insomnia, hypersomnia, and narcolepsy combined, which as a person who is two semesters from completing a degree in a mental health profession I find am not sure is possible.  I know that I do have insomnia as well as hypersomnia and Circadian Rhythm Sleep Disorder, but in the past few weeks I have begun to have what I can only call "wakeful dreaming" a sympton which I can only find to be narcolepsy type symptom.  By wakeful dreaming what I mean is that I know for a fact I am awake can hear the clock chiming and feel my girlfriend breathing next to me, but at the same time I am dreaming and when I wake I know it was a dream, and at times I think I even know that it is a dream when it is happening and I actually "wake" myself out of whatever it is that is going on.  Does this sound like anything connected to narcolepsy you have heard of?  
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1704625 tn?1310708761
Wakeful dreaming, such as you are describing, sounds very much like what happens to me at times.  It is a very odd feeling, because it just plain doesn't seem possible, and yet, here you are doing it anyway.  I have woke from dreams before and hadn't realized that what was previously happening was not real, only a dream.  I would even carry on, in my actual life, as though I was still in the dream.  Sometimes, my family would look at me oddly wondering what in the world was I up to.  I just wish that they understood what was and is going on with me.  I've tried to explain to them and offered reading material on narcolepsy for them, but I still feel like they just really don't understand.  By the way, what is Circadian Rhythm Sleep Disorder?
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hello and sorry for the late reply.

Automatic behavior is when you fall asleep during the middle of an activity like eating or writing. This may last from a few seconds to few minutes. Most people don't remember what happened. But this can get hazardous if the person is driving during these episodes. So, until the symptoms are adequately controlled, its best to avoid driving and other activities which require you to be active.

Hope this helped and Do keep us posted.
Helpful - 0
Avatar universal
hi,
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.
Helpful - 0
Avatar universal
i am. new to this chatroom i can be watching a movie see the begining fall asleep wake up in the middle watch for a few minutes and i am at the end its very frustrating i have ben this way for as long as i can remember i feel like rip van winkle. i actually found something called provigel i was actually able to stay alert most of the day but then my insurance took it off there formulary now i am back ware i started from thankyou for hearing me out you all have a blessed night
thankyou Mary Lou
Helpful - 0
Avatar universal
i am. new to this chatroom i can be watching a movie see the begining fall asleep wake up in the middle watch for a few minutes and i am at the end its very frustrating i have ben this way for as long as i can remember i feel like rip van winkle. i actually found something called provigel i was actually able to stay alert most of the day but then my insurance took it off there formulary now i am back ware i started from thankyou for hearing me out you all have a blessed night
thankyou Mary Lou
Helpful - 0
16093005 tn?1445256093
I suspect I am narcoleptic. I am having a sleep study done in a few days. My fear is they will make prior assumptions and fail to diagnose me correctly. I guess I simply have to wait and see. I had cataplexy as a child (and in my 20s). If I still have it,. it's really mild.   I just hope for a correct diagnosis.
Helpful - 0
Avatar universal
I was just diagnose a few months ago, but I've had narcolepsy for 2-5 years. Its depressing sometimes, but the dreams are really cool. I was in denial until I got my results. Because I didnt fall asleep all the time or while talking to people, I was just tired all the time and fell asleep working or riding in the car or in class or watching movies. Yeah
Yeah
I hate it
But I like talking about it
Helpful - 0
Avatar universal
I have, had Narcolepsy since I turned Twelve years old.  I am told it usually starts about that age.  My Grandfather,Father, brother and I have it.
Helpful - 0
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