My experiences with narcolepsy

[BambinoMiko]

Thank you so much for sharing, it's nice to hear when other people go through the same exact thing you are

[blackderby80]

i fail to mention in my previous post, i'm 30 now. so, for 18 years, i had to deal with all the 'he's lazy' (i am), 'you sleep too much', 'are you stoned?' (feels like it sometimes), 'mind over matter' (often cited in a shrill voice, augh!), and my most hated, words i hate when directed as an imperative, 'wake up!'. if you use that on me, or do the cutesy fright thing, to wake me up, you're likely to experience the only time when, if i'm capable of speech, i'm likely to cuss /at/ a person...

[blackderby80]

i began showing symptoms around age 12primarily eds, and went through all the sleep tests to receive a result of 'inconclusive'. i was diagnosed just a few months ago. in the interim, i have developed fairly predictable eds cycles, steady but mostly mild cataplexy, some pretty wild automatic behavior (painted part of my living room... properly, even! @_o), and strong, regular hallucinations, not necessarily just hypnagogic.

(cont.)

[supersmash43]

I love this video. Thanks for the info you presented!

[sofiarune]

@supersmash43 Thanks. I've actually been meaning to do an update since my treatment regime has changed so much, it's led to a big difference in my life. :)

[JevTV]

Thank You.



[sofiarune]

@JevTV You're welcome.

[Rilleys]

Just makes me sad that life has to be this hard. Almost eveything is a chore to do.

[Fyrsiel]

I've always heard the popular misconceptions about narcolepsy... so I started to wonder what it really was. This video has been very enlightening... and that's so much to deal with, too... I hope you are doing better, these days, at least...!

[keechy88]

Following on from first post.....I even have had girlfriends that havent even know i had it cos i deal with it really well. i do still feel tired sum days in the day. i work from 8-4 mon-fri and usually get home, hav a 30min nap, then go out and socialise. My closest friends know and my gf, but lots of friends wouldn't even hav a clue that i had such a thing. I dont hav cataplexy anymore which is meant 2 b strange as its life long but i think it was my pesonality which got me thru it. thanks

[keechy88]

Hi. Im 24 and was diagnosed when i was 16. I started to feel tired at the age of 15 in my last year at school (uk). It was hard to live with at first because i was quite a popular pupil and had lots of friends and a change in my life that people were seeing in me was very tough to live with. I also had cataplexy, not sure if u have it, but it was v embarissing! It took a few years to get thru it but now i work 5 days a week and have a good social life. only my close friends know i hav it.

[zoey6181]

I was recently diagnosed with narcolepsy 2 months ago. I always thought i was just really lazy. After only being awake for like 3 hrs durring the day i was already so tired i couldnt stay awake. There IS hope and you can live a normal life with medicine! I am taking a medicine called Vyvance and it has change my life! Im awake all day, can get my housework done and take care of my 4 children without worring im going to fall asleep! I finally feel like a normal human being! Best wishes to you!

[sofiarune]

Thanks for the comment! I've been meaning to do a narcolepsy update. I'm no longer on the evil modafinil since I was up to 500mg a day and had nasty side effects and was still really tired. I'm on dexedrine now which, from what I can tell, is extremely similar to vyvance. I notice a huge change too. It helps a lot. Maybe I'll actually be able to finish my degree now! :)

[Kye35]

Don't think of your self as being stupid as you said, you can't help feeling sleepy.

You have a disorder, research is being done to better understand it, hopefully better treatments are just around the corner.

[sofiarune]

Thanks for the encouraging words. It's hard not to feel dumb when you're sleep deprived all the time but I'm slowly getting over it.

[lisdk1]

@sofiarune I know how lonely it can make you feel. just know there are others just like you out there. you're definitely in my prayers. I suffer with narcolepsy. All symptoms included. Xyrem helped with them all but I still get very drowsy during the day off and on and need to nap. My daughter just found out today she also has it, and she was devastated. She knows all I went through and she's scared. I'm trying my best to encourage her here. It's so hard. I lost so much from this stuff!

[sofiarune]

It's definitely a tough diagnosis to get since you have trouble on two fronts. First you have to deal with the direct consequences of the disease... then you have to deal with the overwhelming public misconceptions about it. The number of people I have met that seem to think it's a psychological condition or something that can be willed away is mind boggling.

I wish you and your daughter the best of luck.

[greenclock]

I always fall asleep when I go to bed after like 5 minutes, it's pretty awesome.

[SuperHotPinkNailz]

im taking this psych class and we're learning about narcolepsy. im freaking out because ever since I can remember i've been having issues with day time sleepiness. i've noticed with in the past year or two Ive been experiencing excessive day time sleepiness.. im always tired... im scared because ive experienced all the symptoms you've mentioned =(

[sofiarune]

Don't be scared but DO get it checked out. While not curable it is treatable. It's much more comforting knowing what's going and start taking steps to correct it than to be completely in the dark.

[gramagy]

Nice video, inspires me to make one. I really liked how you describe the hyp hallucinations as waking up in the middle of REM. I've been so freaked out that I had to call someone at 5am to make sure what was reality and what was the dream. I was shaking over that one.

[JennyBurke33]

Im thinking I may have Excessive daytime sleepiness or Narcolepsy. Im always tired and I fight with my self to stay awake in class but I cant help it. my teachers always get angry with me when I fall asleep but I cant help it. randomly I just get really drowsy and I cant get out of it.

[sofiarune]

I would definitely get it checked out.

[linkonbrowse]

Hi sofiarune. Im a chinese guy ,I have the situation just JennyBurke33 described,iwith excessive daytime sleeping and sometimes pretty tired. Im a English learning so I can't fully understand what you say ,could u type what u are talk for me ?

thank you

[linkonbrowse]

Hi sofiarune. Im a chinese guy ,I have the situation just JennyBurke33 described,iwith excessive daytime sleeping and sometimes pretty tired. Im a English learning so I can't fully understand what you say ,could u type what u are talk for me ?

thank you

[AtheistAtLARGE]

There are many possible causes for being sleepy during the day, one is having a bad mattress, another is not enough rem sleep.

Are there things that wake you, or are you a light sleeper, are you normally anxious about things or just some thing.

There are more reasons for being sleepy, the key is to rule each one out, find out whats causing it, and deal with it

[blackderby80]

@AtheistAtLARGE

one of the primary symptoms of narcolepsy is a severe shortage of non-rem sleep. according to my sleep test, i average 16 seconds before i start dreaming, though it's often shorter than that...

[Narf0108]

Oh. Passing out in class? I used to sleep all night then all day in school. xD I'm still constantly sleeping it seems. It gets pretty bad how tired I get. So I end up crashing for like 3 days where I'll sleep 8hrs at a time and be awake for 30mins-an hour and then I'll crash again. xD It cures me of exhaustion for about a week. I think I may have narcolepsy. But blegh. I'm not getting a diagnosis xD

[fucktommyspacewhore4]

i have something that doctors cant figure out. Whenever i like stretch or like have all my muscles tight i will just pass out. It happens to me all the time, in school and everything.

[CSKYSK]

:) Inspired.

[Hustino07]

I am a highschool student. I am constantly tired. I am never fully awake. I fall asleep fairly early if I am at a friends house or I can't get to sleep at all. I pass out in class, which gets me into trouble and affects my grades. I can never remember when I fall asleep. I have woken up and acted like I was still in my dream. Do you think I should go to the doctor? He said it sounds normal for a teenager? Doesn't seem that way for me.

[sofiarune]

If it's at the point where you're passing out I definitely think you should get it checked out. It's not normal for anyone of any age group to fall asleep at random.

[mikaylala26]

Whoa. You shouldn't get in trouble for passing out! You should get medical help!

[stonerj0e]

you know what ? when i smoke weed I GET SHIT DONE !!! hope that helps !

[meho41]

i also have narcolepsy, they put me on ''speed'' in order to stay awake. and i feel your pain, i too take a long time to make videos cause i tired all the time. even when im on the meds that keep me just i still feel tried.

[JosephD79]

Thanks for the informative video! I'm researching because I fall asleep all the time and my life is seriously effected.

I get tired before noon, wander around like a zombie. sometimes I blink and my eyes dont open being so tired. i have never fallen to the ground like the stereo type narcoleptic so maybe I dont have it? but in that 1/2 second I have dreams.

Then I sort of wake up and colors dont look right. I just try to pull through it every day. maybe Im just crazy. :(

[writeincode]

same!!!

[Lookansea]

Tagemandbagem is just a prick from 4chan... that's all

[Tagemandbagem]

OMG! KAWAII DESU YO!

[sofiarune]

Wait.. what does that have to do with anything..?

[Tagemandbagem]

wat

[sofiarune]

What's cute? I don't understand the relevance..

[Tagemandbagem]

Stop playing coy.

[sofiarune]

So my medical condition is cute..?

[Tagemandbagem]

...is it cute?

[sofiarune]

No.

[Tagemandbagem]

Really?!

[sofiarune]

Yes.

[agraz7777]

I don't know much about narcolepsy, but your video gave me some good insight on what it might be like for you

Best wishes :)

[laurascog]

You should also join the Narcolepsy Network.

[gollymctabby]

Rats in my bed. That's my thing. Can't tell you how many times I've found my self thinking "wow, that's so weird that there is actually a rat in my bed, since I have dreams about this all the time", and then half an hour later I realise, nope, no real rats. Small comfort.

[Mfisch016]

This is a really random comment, but here goes.

I think its cute how you guys refer to narcolepsy as N (us people with epilepsy call it E ;))

If you have N, or another debilitating diseases find an online support group, it helped me out a lot! Especially with things like N and E, There aren't many with these diseases and its hard to find real people sometimes, and an online group can be just as carrying .

[GeneticistAtheist]

That sucks sofi. :( Do scientists know what causes it, or how to cure it? I don't know much about neurological disorders. Is there a chance you might recover?

[sofiarune]

Nope. They still aren't sure what the deal is. As it stands now, this is a learn to live with it type issue.

[GeneticistAtheist]

Aw.

[mtc413]

Actually, they do know....kind of. They know that it's due to a lack of a chemical in the brain (I believe it's a neurotransmitter, but not sure) called orexin (aka hypocretin) However, as to what in turns cause the loss of orexin, they still don't know for sure. However, current research/thinking is pointing towards an auto-immune disorder.

[moob744]

Hey! picked-up on your self-deprecating comment,about being labeled disabled and calling yourself "stupid".WRONG! you are suffering from a condition! It's taken me several years to "accept" my own disability(yeah,labels suck!but can also be useful?)try not to be so down on yourself,that too can be tough to do!

[mrswolf02]

wrote last comment before i finished your vid

Hubby said he sounds just like you.

husband also has "beetle expeirences"

Last april we got in a car accident when he was driving, He fell asleep and ran into the back of a semi at a red light. It may have been the sleepin disorder(whatever one he has) on top of havin a long day. Ive also ridden when he drove 10 mi to my M-I-L,he didnt remember gettin on the road in front of her apt and we were talkin the whole time and he was smokin a cig,its odd

[mrswolf02]

i think my husband has it, he zones out alot and doesnt remember things. Time when we were dating he missed the exit on the interstate and got lost and he didnt remember the time on the interstate. When he works he zones out and wakes up not remembering what he was working on.

He falls asleep quickly if he isnt doing anything or plays on the comp or ps3. he doesn sleep long either

Going to a sleep study next week. He may have other sleep problems too, may not be N but there is somethin wrong

[PS3PS3PS3PS3]

whats his PSN?

[blackseabrew]

I'm 39 and have dealt with N all of my life, but I wasn't diagnosed until 2002. I can remember falling asleep when I was a kid and having people drip tobasco sauce on my tongue. Modern society isn't much kinder. I'm an intelligent person(degreed engineer) but I can't focus anymore. I've been through 7 jobs and one business in the past 8 years. Not to mention life savings are gone. I hope I can get on disability. Otherwise you'll find me living under the nearest bridge. This stuff SUCKS!!!!!!!!!

[Wilphart]

Having experienced some narcolepsy, I'm very grateful that I don't/didn't have it worse. Only fallen asleep once while standing up, for example. I can feel it coming in time to pull over if I'm driving. My life would not be the same if I collapsed when I got scared or dropped catatonic without warning. I've never had the REM hallucinations or sleep paralysis, either.

But I'll never be a straight A student like I was in HS. Drowsiness retards quick thought and lowers self-esteem/confidence.

[Wilphart]

I'm a recovering narcoleptic. My sleep study 10 years ago told the doctor I was a classic case - fell asleep immediately each time and had REM sleep on every one of the brainwave-monitored naps. I had daytime drowsiness that really hindered studying and retarded my brain power; I would doze off constantly - and into REM sleep. I would mechanically carry on tasks without being awake. Provigil helped back then. But symptoms mostly gone now; still drowsy, but I function & stay awake w/o meds.

[kittycakes2]

i have never heard of a recovering narcoleptic. How did this happen? Being a narcoleptic I really want to know.

[courtenay43]

I have sleeplab scheduled in a couple weeks. I have been dealing with being "tired" for years thinking that was it. I went in for a blood test in December of last year and everything was normal and I was actually bummed because I thought I could find out what was wrong and fix it. It interfered with college *dropped out* and then now work. I don't have cataplexy but I fuction during my attacks and don't remember or realize it until I snap out. It is nice to hear of your same minor symptoms.

[angelaas525]

I live in Canada as well and Im not sure why you are having difficulties with getting a sleep test done. I had two done and was diagnosed with Hypersomnolence, which is sometimes referred to as Non-REM Narcolepsy. I do not dream as much as I should. I too am a university student and my symptoms have worsened while in University, although they have always been there. I have had to lessen my course load significantly to 3.5 courses per year.

[angelaas525]

I also found it very helpful to take classes only during my "good" hours. I took have dealt with feeling stupid. I explain it as if I have had a partial lobotomy and the rest of my brain is trying to compensate for the part that is missing.

[sofiarune]

See, the unfortunate thing is I can just arbitrarily choose courses to fit into my good hours. A lot of the courses I'm taking only have one available section so I get stuck. I also am in science so I have lots of labs and seminars too. Also, without a sleep study I can't drop down to fewer courses without losing my specialization. :(

[Katarineczka]

Thank you for sharing your experiences. It helps me a lot. I don't have narcolepsy myself, but I'm writing a book and my main character has it. I want people to acknowledge this disease and I find it very interesting, because it's actually neurological. Brain the most awesome organ in human body. And the most mysterious.

I know you must endure a lot of pain because of your sleepiness. Must be very hard for you and I wish you the best. Take care of yourself

[kittycakes2]

I have narcolepsy and just wanted to thank you before you are done with your book on trying to help educated those without it. Is it done yet? What's the title I think I would like to read it. Can I help??

[Ov2rkill]

Never knew alot about narcolepsy untill now, looks like you're experiencing what i have in class after being awake and under influence for over 40 hours.

Good luck with it...

[kolan667]

Best wishes for your struggle against narcolepsy.

[XDVDX41]

You sound so inrdiblely strongwilled and wise even dead tired sweetie. :)

[dancexcore26]

I have narcolepsy myself, it sucks. You might want to get a sleep study done, they are hellish, but its results will let you know if you have REM and how your sleep cycles are.

[juizebox]

I hope things get better for you. I think I might have narcolepsy but I'm not for sure. I get so tired after work that I sometimes have to lay down for about 10 minutes to an hour. Sometimes I want to sleep all day. I sometimes suffer from sleep paralyzes and auditory hallucinations. I guess if I do have narcolepsy my nighttime drinking isn't making it any better. Drinking is the only way I can get to sleep at night.

[sofiarune]

Laying down for 10 minutes has nothing on my "naps". My "naps" occur after being awake for 8 hours and last anywhere between 2-3 hours. That's how I spend my time after school. :P

[valiskeogh1]

i sent you a message, but i'd like to leave a comment (maybe two) also. first, have you had your sleep test yet? mine was pretty much my idea of the ideal vacation. go to a hotel room... go to sleep... wake up in the morning... and they TELL YOU to take a bunch of naps the next day!! it was awesome!! course i slept 9 hours that night, then took 5 naps during the day, and then i went home and took a nap cause i was tired... ugh...

[danmckinnon84]

Imagine choosing a lifestyle wherein you didn't have to worry or care about falling asleep?

[sofiarune]

Um.. choosing?

[gr23452]

Are you able to sleep WELL at night or during naps? I have all the SAME during the day, but unless I'm medicated I can't sleep. I also am so tired during that my doc. ordered me to take a leave from work, but I find it impossible to sleep during the day

[RJLoki247]

I have narcolepsy and live a fairly normal life thanks to two medications. On Tuesdays I leave for school at 6:45 a.m. an don't get home until around 10:00 p.m., sometimes I don't need to take a nap.

[kittycakes2]

I have N and am struggling to find the right medication. I am on dexidrine and trimiprimine but became and accidental abuser and have just recently struggled with withdrawl as my dr. reduced my meds to a safe leel, however i do not find it enough now to help so am hoping to try something different. My dr. doesn't think I should want to have a life outside of working part time. Go to work come home and sleep. what kind of life is that??

[danmckinnon84]

I know that face mahn... I know what you are feeling. That dispassionate angst.. that soul-crushing, mind-numbing, alienating destruction of your ego.

You look down while speaking of your condition, and speed up when embarrassed about not being able to complete normal tasks.

You seem somewhat new to this strange fate, are you?

[danmckinnon84]

Yeah mahn, imagine we could choose to live a lifestyle where it didn't matter? I always seem a little ticked that society apparently has no place for me.

[sofiarune]

I don't really feel "soul-crushed" or seriously alienated.. More.. frustrated with sleeping all the time. I don't expect society to mould itself to me. If that's the way it worked with everyone then society would cease to function. I'll just keep doing what I need to do.

[bunnyfields]

Thank you so much for this video. You are the first person I've ever heard describe what i have been feeling for...ever.

Provigil worked for me for maybe a month. I'm in nursing school and have children. I am almost not making it in either area. I dont know how one is supposed to carry out a "normal" life in this condition.

Thanks again, and the best to you.

[sofiarune]

I take a day off each week from provigil to stop myself from getting tolerant to it. That day always sucks but maybe it might help you function better during the rest of the week. On the other hand I'm lucky because I can at least come home and sleep after school. Hope things work out better in future though! I know how hard it is to deal with.

[bunnyfields]

My doc actually called today and we might try Adderll. I'm pretty scared of that, but I HAVE to get thru nursing school. Also, I am causing my children to miss out on alot. I mean, alot. And that causes alot of guilt.

I am so sorry to hear how things are done in Canada! I am so surprised that they make you wait like they are, it just doesnt seem right, but you are lucky to be found out so young.

[neil8468]

does any of this sound familiar.. now i just try and disguise my fatigue and 'brain fog'. enough for one night signing off narcoleptic anon. from manchester england.

[neil8468]

what side effects do you guys get from provigil.... i was prescribed 2 years ago now, I was told to take 2 a day twice daily not realising dr. meant 100mgs i was on 200mg so for 3 months i thought wow great i dont need to sleep anymore i had just moved into a house (with my family) ripping it out completely through the night, painting, stripping paper etc. i lost loads of weight.(all back on now) It is only on reflection that i can now see how wacky I was, my moodswings were terrible.

[neil8468]

narcolepsy disrupts normality. I could fall asleep at every moment in the day. Provigil the miracle cure this IS NOT. I just take half a tablet on a need basis if i have to drive to work but then it does not feel like me. I clamp my teeth and talk ten to the dozen a load of rubbish and then I feel more tired.......

[argenfargabarg]

I think that stuff (Provigil) is poison. It sure as hell was for me. Made me crazy and people thought I was drunk. No sleep all night. I think it's dangerous.

[mrswolf02]

Hubby is on provigil now, he does ok. you can definately tell when its wearing off b/c he goes back to what he was like before. when he first started takin it he was "cracked out", he cleaned our entire apartment and got ready for work in an hour and a half( it takes me bout 2-3 hrs to clean our house) after that first day he hasnt been so "zippy" but i think it does help him

[callokla]

sure matt ask any question that's you'd like to know.

I've been dealing with narcolepsy since I was about 11 I'm 37 now..

[mattyube]

im from australia and i know exactally how you feel, i was diagnosed 2003 and its been hell ever since. it ruined my years of study aswell. i had a similar hynagogic halucination to yours, but myne were mice. i could feel them moving inside the matress and hear them around the room, as i woke up i was trying to squash them, it kept occuring over afew nights and each time it took me a while to snap out of it.

[sofiarune]

I had something like that last month where I was seeing grasshoppers all over my room. It was incredible. I've been really surprised by the number of people that have left comments saying that they relate. I didn't think this condition was so prevelant. I hope you're doing a bit better.

[pmeity]

I'm an Australian, I was diagnosed in 1998. This is the first time I've tried communicating with other narcoleptics, I've been in denial for a very long time. I see spiders all over my room every few months! It's amazing how good it feels to realise that in the world of narcoleptics I'm normal....

[sofiarune]

Yeah that's definitely normal. One night it was all grasshoppers for me. I actually have been meaning to do a new video. I'm on a new treatment because the modafinil doesn't work at all. I'm taking dexedrine now. Glad the video helped though. It's a touch diagnosis to come to terms with.

[callokla]

I also was diagnosed in 1991, I live in Oklahoma city; e-mail me I have loads of information for you Sofiarune

[sofiarune]

Feel free to send me a message with some info and your email in it via youtube! :)

[mastud]

You seem to be a really polite and caring person. I salute you. Well done for making this video. Keep up the wonderful work.

[historicalirony]

wow, I have narcolepsy and I completely identify with the cognitive deficits.

[xepherz]

Hope you feel better

[C0MMentM0NSTER]

Narcolepsy sucks.

[sofiarune]

Narcolepsy totally sucks.

[C0MMentM0NSTER]

LOL, I've finally watched this video fully. Thank you for the video, following health problems/"disorders" are great to me.

[Jehoshephat]

Good point about the effects of narcolepsy on thought-requiring activities. After I was diagnosed, I wondered how many of my negative academic behaviors had developed as a result of the disease. Sometimes I thought I was dumber, but negative thinking is really not an option. If you were cured of it without knowing, the negative behaviors would just continue as a result. Thanks for your video.

[QuarksAreStrange]

Thank you for sharing this. I never met anyone who has narcolepsy so all I knew about it was from movies, tv shows, pop culture, etc.

In a way, I can relate to what you're going through - we should talk about it sometime. Take care and good luck.

[foryoursplendor]

I also live in Canada (Winnipeg) and am currently waiting for a sleep test. It's crazy how similar your explanation is to mine of all the symptoms. Where do you live?

[sofiarune]

I reside in Alberta.

[BaraNoMori]

Hello, I have narcolepsy as well and I want to thank you for posting this. Most people just don't understand it at all, and just think its a joke. Its very brave of you to come out and make this video

[sofiarune]

Thank you. It's really hard to try and communicate what's it's like. It's been extra hard for me lately too so I appreciate your support.

[slawek7]

It sounds like you don't let things slow you down, which is great. Making vids, uni, and smart too. :) Anyway, thanks for sharing.

[sofiarune]

It's actually been frustrating me lately. I'm mich more tired than usual.. but what can you do? Life goes on. Thanks for the support :)

[slawek7]

Time of year? Heat, allergies, humidity? I know they can drain me, and I have no pre-existing conditions that tend to make me tired... High 40s an low 50s out here in S. Manitoba. Bloody hell - as the Brits would say. :)

[sofiarune]

I'm pretty sure it's the heat. My apartment is west facing and I have no air conditioning.. which means I have to deal with 30 degree conditions in my home :( Low 50s must be absolutely insane!

[slawek7]

Carman, MB, about an hour from the 'Peg set the new Canadian record a few days back: 53 with humidex. Anyway, truly Canadian conversation: The weather. :) Stay cool. Leave the fridge open... or something. :)

[fromtheisland]

hypocondriac

[sofiarune]

It's actually "hypochondriac". Narcolepsy is not a psychological condition. It's neurological. Not that you care. If you have nothing constructive to say I suggest you go else where.

[kittycakes2]

Oh you asshole. Narcolepsy is a central nerous system disorder. Obviously you are connected to the internet so google narcolepsy and read and learn and then comment. Let he who has ears hear....let he who has a brain learn.

[terriebeneveds]

Thanks for making the video. I have "trauma induced" narcolepsy. Helps to know there are other people that share in my pain.

[jennyisberg]

Good video, Sofia. Spot on. It moved me so much to hear you talking about exactly the same things that I'm experiencing. Isn't it a strange condition we have... I find it so hard to describe to people. You did a good job of it. Warm greetings. /Jenny

[narcoleptus]

Hi,

Great video.

[djindika]

Maybe you have 'mono' - how long have you had that issue? Mono put me out for 3 months...I was up for an hour (long enough to eat a cheeseburger) then down for 23 hours....then finally diagnosed with diabetes...

[sofiarune]

I definitely don't have diabetes and I know I don't have mono either. Trust me, they tested for alot of stuff. They took nine vials of my blood.. it was gross. I would rather it be mono actually because it can actually be cured.. :(

[deanndra1981]

They tested me at least once a year for a DECADE for mono. Mono & narcolepsy are very different from each other. Mono doesn't include any of the same symptoms besides EDS. But the problem is many people who DON'T have narcolepsy can't understand what those differences could be. Great video. Very descriptive. I wish there was a way to save it because I want to upload it to MySpace for my friends/family to see. You described the "daily routine" so well. Good luck to you. :)

[parymich777]

I don't know alot about that but I have the ooposite lol, I never sleep. what''s that, insomnia, right. Anyways, it is good that you knwo that now and can work on dealing with it. Thanks for sharing that with us, people need to learn(like me lol)

[BlackSleepingBeauty]

I am so glad you made this video! I've been diagnosed for some time and I am on provigil but I'm still very sleepy.

Oh yeah, your not stupid. We are not stupid. I'm not sure if calling it silly is that much better than "stupid" but that's how I think of it. My friends can accept my silly moments and most of the time I can too. Sleepieness makes us a bit silly, but not stupid. I like to think that narcoleptics have a great capacity for learning and intellect.

:-)

[sofiarune]

Yeah it's hard to get over. I'm still in a bit of denial because I haven't had the sleep test. I'm just so used to thinking you're stupid and lazy that it's mind boggling when you find out that's not the case. I like your description of silly haha. I think I'll try and use that more. Provigil helps me but I still only get about 6 hours out of a day. Hope your experiences are as mild as mine are though!

[websnarf]

Wow that's amazing. I just sound like a robot because I am *like* that ... you actually have an excuse! :)

[gdoyel]

I think it took a lot of courage to speak so frankly about your experiences with this condition. I think most people only hear of narcolepsy as a joke in tv and movies.

Great job. Hope you're sleeping well.

[sofiarune]

Thanks Doyel. I get kind of annoyed with all the comedy associated with narcolepsy. It's not like that for most people and when it is, it's not funny.

[TogetherForPeace]

thanks for sharing...its great that we talk about our disorders and get the word out...im sure it will help someone...it defin helps to know you're not alone :)...peace

[sofiarune]

Yeah. It is really nice to know you're not alone. Thanks for originally sharing!

[arinaga40]

you don't appear as robotic at all. nor anemic.

sleep is fascinating. when i was a teen, i would wake up, but not have the ability to move. sounds and sights would sometimes become exaggerated. it was very scary.

[sofiarune]

Sounds like you have night terrors. I'm glad I've never had to deal with something like that.

[InReasonWeTrust]

This is a good video. I think it will help others.

[sofiarune]

Thanks for the support. :)