Narcolepsy Info and Experiences

[Shalixxa]

Hey Callie,Great job of explaining narcolepsy on your video. I have fibromyalgia. I don't know if you are familiar with fibro but it imitates a lot of other things like lupus, MS, etc. with a lot of "side dishes" like IBS, sleep apnea, RLS, etc. Lately I've been having some of the symptoms you describe when you were talking about narcolepsy and am not looking forward to finding out that I have more on my plate. Thank you for the information you provide. (Btw, I am a 54 yo male) ~Shalixxa~

[LadyRose1985]

I'm 26 and narcoleptic. I know how it is! My friends want to go out late and such, and they don't understand that it can take several days or even weeks for my sleep schedule to recover from something like that! People just don't understand that it isn't just being sleepy--it is the NEED to be asleep RIGHT NOW. I really can't describe it to anybody who hasn't experience it.

I also get the sleep paralysis and hallucinations. Used to be creepy--now just annoying.

[kraken111111]

well i tink the normal narcolepsy. not so bad as the narcolepsy pp get of the the vacine a lot of pp get sick off. Well usa got a vacine whitout that thing we get sick off. On me.

so pretty mutch pp was getting sick

[ashtravel]

I've been living with narcolepsy and cataplexy since I was a teenager.. I'm now 47....this is a very good video explaining our problem. I have never actually met anybody with narcolepsy so watching videos such as this are a great help in understanding the things we have to deal with on a daily basis.

[kandi4561]

Narcolepsy is a very frustrating disorder. I commend this young woman for speaking up about it. It is hard for those without it to understand how difficult it is for us to cope on a daily basis. 

[marcymrp]

I'm SO glad for you that you had a good doctor who clued into your symptoms.

I'm 57 years old & until last year, could NOT get a doctor to listen to me. I didn't think to research narcolepsy as I thought cataplexy HAD to go with it! For 30 years, dr.s told me I was depressed. I finally got a dr to agree to give me adderall after I did all the research, but he didn't REALLY believe & AND didn't ever order test. Last last month, finally got the MSLT and finally PROOF! A LOT of wasted years!

[sweethindi]

I sometimes find myself super drowsy, if i dont sit or lay down, i will fall right asleep. When i was around 18, i had no idea about Narcolepsy. My parents have always called me lazy, telling me they were embarrased their daughter had to sleep so much. I stumbled upon a page a few years back and found out about narcolepsy. Now I understand, but they still don't :(.

[djsaintjoel]

FANTASTIC video! I just began the process of sleep diagnosis, and my doctor wants to spend a month treating my Restless Legs Syndrome before doing a sleep study to test for Narcolepsy, but I feel just like you described! The phrase "Tired to the very core" really does sum it up. I have missed work, missed parties, missed family events, fallen asleep in public, and even had to pull off of the highway for a nap so I wouldn't crash and kill myself. It is good to know that there is hope.

[azultorresify]

es una condiccion

[MsMytube52]

This is a great video! You know exactly how I feel, its not simply a matter of being tired, its extreme sleepiness and lack of energy to do the simplest of things! Diagnosed 2 yrs ago at age 55 and since then have recalled those times in my life where I felt tired, even in grade school. I refuse to let this disorder run my life, yes I stick to a strict bedtime routine but still have days where I am back at zero. Aerobic exercise and eating healthy seem to helping as well. Thanks again!

[queenchichi87]

@aroundy20 i have narcolepsy and cataplexy but i would get yourself checked as im not aware of cataplexy withou narcolepsy

[athenarose28]

I think I have Narcolepsy, I go in Jan for my sleep study. I have hypnagogic hallucinations really bad at least 4 nights out of the week and the excessive daytime sleepiness I don't have the cataplexy and I've experienced the sleep paralysis a couple times I don't know which is the worst symptom they all suck I can't wait till they can give me some meds I'm sick of not having no ambition and being tired all the time :(

[shanesmommee]

@athenarose28 hi athena-did you go? you could have some other sleeping disorder as well-maybe one that can be fixed!. best to get checked...

[shanesmommee]

@aroundy20 hiya- i think your neurologist has misled you...it is true, not everyone has every side effect from narcolepsy. i have daytime sleepiness, yeah-and cataplxy. no hallucinations(thank god!) and sleep paralysis only once....i never just "fall asleep" either-i know when i am going to and can sometimes get up and be active. what i am saying is...if you actually have cataplexy, you have narcolepsy. you CANNOT have cataplexy unless you are narcoleptic.

[shanesmommee]

@aroundy20 --it is the only "side effect" that indicates narcolepsy alone. so...this means you either a-don't really have true cataplexy, or b-have narcolepsy and are being misdiagnosed...

[shanesmommee]

@aroundy20 hiya- i think your neurologist has misled you...it is true, not everyone has every side effect from narcolepsy. i have daytime sleepiness, yeah-and cataplxy. no hallucinations(thank god!) and sleep paralysis only once....i never just "fall asleep" either-i know when i am going to and can sometimes get up and be active. what i am saying is...if you actually have cataplexy, you have narcolepsy. you CANNOT have cataplexy unless you are narcoleptic. You can have all of the other symptoms

[shanesmommee]

@aroundy20 - you can't have cataplexy and not have narcolepsy--it is the one single "Side effect" that determines true narcolepsy....many other things can point to other diseases/disorders--ie, excessive daytime sleepiness, sleep paralysis--you could have a ton of other sleep issues and not have cataplexy.. but-if you have cataplexy, you have narcolepsy...I have read about people with a sleeping disorder specific to their legs-perhaps you have something else? have you been to a doctor?

[kaceylynn00]

I have narcolepsy, and I still struggle with it with 3 girls one is 5 and twins that are three. I am so with you on this. I still struggle with this at work. I totally understand what you go through. I am sorry this happens to people.

[putonyourhat]

@kaceylynn00 i've always wondered what it would be like to be a parent because i have narcolepsy too!

[kaceylynn00]

I have narcolepsy, and I still struggle with it with 3 girls one is 5 and twins that are three. I am so with you on this. I still struggle with this at work.

[callieharlem]

@aroundy20 Wow, that is really interesting. I have never heard of cataplexy without narcolepsy. Have you been able to find anything that helps you? My attacks never lasted that long, I would usually be able to walk within a half hour. I think you would really benefit from a service dog, especially a larger one that would deter people from messing with you while you down! I am so sorry to hear about all the muggings. Feel free to send a message. Best, Callie

[frankensteinmoneymac]

@callieharlem I was really glad that I found your video. I have Narcolepsy/Cataplexy too. I've got the whole excessive sleepiness, the automatic episodes, the Cataplexy...but the mine has never been associated with Emotions...just during my Narcolepsy "attacks". No sleep paralysis, rarely hypongogic halucinations (if I spelled that right!) My Cataplexy seems to have gotten better in the past few years, but was really bad about 5 yrs ago. I actually fell in my apartment and [CONTINUED]

[giersy]

@callieharlem Hi, I also have Narcolepsie. I know so well what you talking about. I heared about that there is al medication for it. Is that stuff just help you with the sleeping of is that helping also in other sectors?

It would be cool, If you can help me with this information.

[klyfly1]

PS.. good video

[klyfly1]

spinal taps UCLA uses them as a last resort---Dr visits are a trigger so at all Dr apts son triggers and of coarse the Drs gets to see him in all his glory and the only thing they do is nothing but see you in two months --well what they really say is see a shrink and take worthless pills and you'll get better but since this has been going on for over 10 years hes not trying hard enough--now if they just dump him off to the Drs at UCLA-son DX with cats at UCLA -Drs here refuse to except it-

[KristalynJ]

You need a spinal tap to check for if your body is prouducing "Hypro-cretin' in the brain. Hypocretin is the chemical produced in the brain that tell the body when to be awake and when to sleep. 90% of ALL Narcos tested have little or none. They are pretty sure it's an "auto-immune" disorder. They know our brain makes it but something is killing ot off-----we are getting closer!

[callieharlem]

@KristalynJ Thanks for posting, I read up on it after somebody asked about it and at the time I had no idea they were doing such things. Pretty cool really, although I really don't want a spinal tap!

[GerwynT]

I always insist upon holding someone elses hand when I cross roads or parking lots. So much so that the time I didn't my husband grabbed my hand and kept me from getting hit by a car.

[GerwynT]

@callieharlem Spinal taps are now considered more accurate than the MSLT. The doctor is checking for hypocretin cells in the spinal fluid, a lack of them means that the person has narcolepsy.

[callieharlem]

@GerwynT That is true, but a person can have narcolepsy and have normal levels of hypocretin. At least that is my understanding of the studies from Stanford.

[callieharlem]

@GerwynT That is true, but a person can have narcolepsy and have normal levels of hypocretin. At least that is my understanding of the studies from Stanford.

[frankensteinmoneymac]

@callieharlem [2nd PART OF CONTINUATION]...lets see, I was asking you if you had tried the new version of provigil, called nuvigil (again, not sure the spelling). My experience with it was horrible. I tried it for about 5 days, & lit. slept around 20 hrs each day!!! Im weird though...even Provigil sometimes affects me opposite(like if I go off it for a while, then start back up) Anyway Great vid! Hope to talk 2 U more! PS R U single...your cute! LOL! (sorry, but I had to at least ask!) :)

[putonyourhat]

@frankensteinmoneymac wow i have narcolepsy too and just read your posts because i'm taking nuvigil PLUS dextroamphetamine. i tried provigil too, but liked nuvigil better. i'm surprised it doesn't work for you!

[frankensteinmoneymac]

@putonyourhat Yeah, I think I just have strange body chemestry. Most pills that are supposed to actually make me sleepy dont work either. I don't know why but nuvigil was just a disaster for me. And I wouldnt say that if I hadnt given it a real good chance to work. I took it for 5 or 6 days straight But it just literally knocked me out the whole time! I've never taken dextroamphetamine. How good does it work for you? Mainly I use provigil & self medicate by drinking Red Bull constantly! LOL

[callieharlem]

@GerwynT That is true, but a person can have narcolepsy and have normal levels of hypocretin. At least that is my understanding of the studies from Stanford.

[frankensteinmoneymac]

[CONTINUATION]....as I was saying...I Once had a really bad fall in the Apartment I lived in at the time. This was about 5-6 yrs ago...I ended falling in a funky way and snapped my shin bone in two! It was pretty horrible...the bone was sticking out & everything!!! LOL! I've still got the titanium rod they used to keep my leg together! (actually I need 2 get it out soon, its starting 2 bother me) I take Provigil, too. A question...have U tried the new stuff, Nuvigil (sp?) For me it [CONT again]

[GraandHustleMafia]

why didnt you get a Narcoleptic segment during this video?

[MrDeadlySounds]

Respond to this video... thank you so much i also suffer, and get so frustrated trying to explain to people how difficult it is just to keep my head up, or even keep my eyes open takes so much energy that you can't think straight. Or listen to others clearly, only catching bits and pieces of something and never making sense of it and just pretending you do so you don't make others angry at you for not paying attention when your trying to with every sense of your being.

[patchworkz7]

@callieharlem I know Stanford here in San Fran does spinal taps for narcolepsy because there's a missing protein found in MOST people who have narcolepsy w/ cataplexy. Personally, I wouldn't want a spinal tap for it (yes, I have it and take 150mg of nuvigil to make it through the day) because the symptoms are all there. Also, I have the automatic behavior and hynogonic hallucinations and both can be pretty scary.

Thanks for the video, glad to hear from someone else who has it.

[MeLarryO]

Girl I watched the same videos and they SUCK beyond belief. My 23 year old girlfriend has narcolepsy. It's not funny... You ROCK girl!

[Saracide666777]

Thank you so much for this video. I am undergoing tests on Thursday for the possibility of having narcolepsy and sleep paralysis. I've been scared, not just because of having symptoms of narcolepsy but because of the cost for treatment. But after hearing you talk about how much your quality of life has improved and how much it has helped you, I can see it will be well worth the money.

[callieharlem]

@Saracide666777 I am really glad to hear that. Hopefully insurance will cover more than you think. Good luck!

[lili7903]

you will get better I HAD since 10 and now and 35 2010

[callieharlem]

@manitobasuntanner Cataplexy is not necessary. Just the EDS with the limited REM cycles. Who is she being treated by?

[callieharlem]

@manitobasuntanner Sleep walking at that age is not unusual. If she continues to have problems press on with your general. Most likely he will refer you to a cardiologist, as it is more important to rule out any cardiac possibilities. I hope you find some answers.

[MINISTRMOM83]

@manitobasuntanner - The spinal tap would be to check if there is orexin/ hypocretin present in the spinal fluid. People with narcolepsy have very low levels or none at all.

[mcluvin83]

is it dangerous for ppl who smoke cigarettes or marijuana with narcolepsy to be doing such activities and is there any warning signs of early stages of narcolepsy i have a friend that is narcoleptic the only experience i had was seeing him asleep with his eyes open but5 thats the only experience i had with being with a narcoleptic

[callieharlem]

@mcluvin83 Probably a risk, but I don't do either so I cannot say if it would be anymore dangerous or not. Marijuana is a sedative so that seems beyond stupid for somebody who is already tired.

[chuckbassislife]

i was actually just recently diagnosed with narcolepsy. :(

changed my whole life.

[Minuteman1969]

Hi, I think it's great that you're putting out facts and sharing your personal experience. I take medication for another condition that makes me go to sleep, and now that after more than 5 years of taking it, if I forget to take it, I'm unable to sleep until it kicks in several hours later... and when it does kick in, I go to sleep pretty much "whether I want to or not". I can relate to your situation, even if mine isn't the same, because it's a sleep issue. I hope people benefit from learning

[MrFrafen]

i have epilepsy and i know it is not the same but i no how you feel theres a lot of misunderstandings withe it to

[wiigzee272181]

Hi :) I live in Britain and my dad has just been diagnosed with narcloepsy and cataplexy......have you got any advice for famiy members because its kind of freaking me out I don't know how to deal with him i know that sounds selfish but i want to make it easier for him....also with medication will the cataplexy stop altogether currently he suffers a lot with cataplectic attacks sometimes over 10 a day. Any advice would be hugely appreciated :)

[callieharlem]

@wiigzee272181 Hi, I would simply ask him what he wants you to do for him-everybody is different. I just ask that they make sure I am in a position that I can breathe in, as it is possible to collapse in such a manner that it is very hard to breathe. Hopefully the medications will reduce the attacks dramatically, but I don't want to say they will be able to go awake completely. It sounds like his case is pretty severe and I have no idea what meds he is being treated with.

[perfecttense]

Hi, nice to hear a positive story, thanks. The lowest point in my history was coming back from a narcolepsy conference by train. I was suddenly aware that every person on board was staring at me in bewilderment. I wasn't aware that I'd slept. Then one of two elderly ladies sat accross the aisle said to the other "Should I tell him?" and her friend replied very quickly and assuredly "No!" I am still embarrassed. I get morning wood in public too when I go into REM. It's very hard. Lol or cry?

[greenalgaebiodiesel]

thank you soooo much for makeing this video. I live in upstate NY and have severe Narcolepsy and Cataplexy, and have lost everything. I lost my buisness, my home, my wife and my 2 beautiful little girls because of a gross misunderstanding of this condition. Your video has given me strenght and insperation to not give up and has also inspired me to reach out to others. Thank you for shareing your courage with me and everyone else who suffers from this invisible illness.

[Musicofthissphere]

You should go to a sleep disorders treatment center. There is hope

[Theklaful]

Thank you for speaking up. It is so hard for people with narcolepsy because there is hardly any information out there about them. No one knows the real facts about it. My husband has it and we both struggle dealing with it. I get so tired of people making fun of him and calling him lazy because they don't understand.

[TheGrifFAN]

Hello, I was diagnosed with narcolepsy with cataplexy roughly 6 years ago. I'm on a cocktail of cymbalta and topamax. I still have what I call "sensations" sometimes if I'm tired and if I'm really tired I might have a full out episode but for the most part I'm great. Unless I try to be sarcastic and for some reason that drops me every time. LOL Anyway, I thank my renegade of a neurologist for coming up with this cocktail and wish others could get on it so they too could have the same freedom

[callieharlem]

Great, sounds like you have really found something that works well for you. It seems to take a renegade to be able to figure out what is happening in the brain!

It cracks me up that sarcasm is what gets you. I am always dropped by things that overwhelm me. That sounds weird I know, but I am starting work in a hospital and seeing somethings just gets me every time.

[Musicofthissphere]

Have you tried Provigil, adderrall, or any other stimulants?

[TheGrifFAN]

Hello, just wanted to let you know that I have narcolepsy with cataplexy. I was diagnosed roughly 6 years ago. I'm on a cocktail of cymbalta and topamax which suprisingly controls my cataplexy really well. I still have what I call "sensations" from time to time or if I'm really tired I'll have a full out spell (especially if I'm being sarcastic) but for the most part I do really well with this cocktail. I'm glad my neurologist came up with this. I don't know why it's not used by more.

[xxsexyxkissesxx]

i really would love to meet you. i was just diagnosed about 2 months ago and all i do is cry

[callieharlem]

Just hang in there, it will get better!

[jezebeldawm]

I was pleased and inspired by your video, I was diagnosed in 2005 with narcolepsy after YEARS of excessive daytime sleepiness. I explored every part of my life to figure it out - current meds, lifestyle, boredom...?? Finally at age 35 I went for the sleep study and was diagnosed. Thankfully I do not suffer the cataplexy or paralysis and usually feel the sleepiness coming on. I tried Provigil for some months but found it to mess with my hypoglycemia and made me jittery as well as very costly.

[callieharlem]

Yikes, that is a very long time to go! Have you tried Nuvigil or Xyrem?

[careyotis]

hey there....i have been in and out of sleep studies and no clear cut diagnosis has been made for me..i have 0% of 3 and 4th stage sleep..i have sleep paralysis, wicked daytime sleepiness which i struggle just to listen to someone talk..i dont fall asleep that often during the day but i feel like i just want to close my eyes all the time..it physically hurts to be tired all the time..they have suggested maybe epilepsy with a small case of narcolepsy..?? do you have email?

[narcolepsyblog]

I just started Xyrem and also just started a blog and some videos last night... you can link to it from my channel here. Thanks for sharing your honest experiences and being so open! I am glad I came across this and will check out your other videos.

[jamesrdegen]

Great video. I'm so tired of searching narc. and getting these terrible 14 year old kids' impressions. Anyhow I was diognosed when i was 21. Strict bedtime? All I want to do is party! But that denial catches up with you real fast. I'm so much better now that im getting treatment, I hope more people watch your video and get diognosed. Thanks Callie

[xRaquelSHillx]

- This Video is Very Helpful .

Thank You ! i'm Fourteen & Also Have Narcolepsy . .

[icre8arch]

thank you so much for taking the time to make this video for the general public and those that have this condition. I had my 6th cat spell this afternoon out of 2years. So mine is mild but i have not discovered the trigger yet. I have had EDS for 7 years and had to endure peoples negative opionions of me because of it. Terrible on the self-esteem. Your willingness to share is a help to us all; people with N or without and their families. Thanks

[MetaKittie]

I usually fall asleep the same times! Its always either 7-10am. On friday I fell asleep in the middle of a video and missed most of the notes! After 12noon I usually don't fall asleep. I have fallen asleep in choir though. Is that normal?

[callieharlem]

If you are constantly falling asleep even after a normal night of rest, you should probably see a sleep doctor. It could be sleep apnea or narcolepsy. Normal is very different for everybody, and it is very hard for me to say one way or the other without knowing your story.

[NamekianPikkoro7]

Did you read that they finally found out that Narcolepsy is an Autoimmune Disease?

My doctor wants me to take a night and daytime study, but I can't afford to pay 1000 dollars, right now. I understand how you feel though. I have day time sleepiness all of the time, hypnagogia hallucinations and sleep paralysis. I have mild cataplexy, once in a great while. I just wish I would have an attack in front of my doctor so I wouldn't have to take the sleep test. LOL

[callieharlem]

Unfortunately, even if you had one in front of the doctor you would still have to do a sleep test. This is the only way to know for sure you are not having seizures-which is much more dangerous. The tests are expensive, but so is the medication. Health insurance has been really important to me in the past few years.

[NamekianPikkoro7]

My neurologist set me up for the night and day time study, again. I'm going to talk to my husband and try to get it done, this time. It's just a money issue, although, 1000 dollars isn't too bad.

You should have seen how serious my neurologist was. I was like...wow...

[klais02]

Great video, I'm also a person with narcolepsy.  :)

[callieharlem]

Thanks!

[Degarve2]

Hi there, very nice video. I'm 35 and having Narcolepsy for 23 years, and had it all: Cataplexy, hallucination, sleep paralysis, seemly realistic Dreams. I can assure you Narcolepsy doesn't become worse throughout the years. Today I'm only struggling with sleepiness during the day, all the rest disappeared. hope to hear from you.

[callieharlem]

That is good news!

[carliabella]

Thank you so much for your video. It's so wonderful to know I'm not alone and someone else has the same experiences I've had. People don't understand unless they have it. You've helped so much.

[carliabella]

I have been taking adderall and it does help the cataplexy. I still have sleep episodes during the day but not as bad.

[callieharlem]

Adderall is more damaging then other medications out there. Have you discussed the other options with your doctor? I was on effexor and provigil until very recently and that worked much better and more reliably than adderall.

[NamekianPikkoro7]

For me, the hypagogic hallucinations are the worst. I experience paralysis during them most of the time. The worst part about my hallucinations, is when I come to full awareness, thing person or things I were hallucinating are still there for just a couple of seconds and they usually fade away or rarely they will shrink in a morphing type way, it's very weird. The hallucinations are just terribly frightening, the ones I have, however.

[ourioni]

Well said!

It cannot be impressed enough that many people suffer the sleep disorders in the quietness of their heads...ever wondering, often afraid to breath, or move or to enjoy.

If you seem to be "sleepy" more than you think u should be, or if u awake to a snap, or breathless...If u have allergies, think about getting tested if u can.

If you do not have a sleep disorder then u can go from there.

Chances are that if u believe u have something like this, and for a long time...u probably do.

[themadchipmonk]

Hey - thanks for the video! I think I suffer a very mild form of narcolepsy, although I haven't been tested to confirm it. I did go to the doc one time, and he said I would have to take a test and keep journal - didn't apeal to me so didn't do it.

Anyways, I definately have sympthoms of falling asleep uncontrollably in ALL my classes (currently in college) - i'm okay OKAY gpa wise, but can definately do better. I've also fallen asleep during meetings for my internship and while driving.

[themadchipmonk]

cont'd: so obviously...those sleeps attacks are embarrasing and annoying, but I can't help it...the more i struggle to stay awake, the more sleepy i get (heavy eyelid, and extreme discomfort). At the same time, it only happens once or twice a day - when im in class, watching movie/tv, driving, READing (omg, can't read ever w/o sleeping), etc...(oh yeah, i even fell asleep during a couple final exams).

[themadchipmonk]

but otherwise, im pretty energetic - love to run/swim - no prob in getting sleepy when im doing physical activities. I love coffee...and caffine don't seem to work for me b/c i can sleep great afterward.

Im wondering, in a milder case like mine (and a lot of people would say im lazy/crazy/its just all in my head), what do u suppose I should do?

[callieharlem]

You really should go to a sleep doctor. Caffeine is not good for people with sleep disorders, but I understand the difficultly in stopping. I am also fine when I am doing something physical, but when I stop...

Seriously, the only way to know what is going on is to see a doctor who understands and deals with this frequently.

[haagendazs]

I have that shirt...

[AnotherOtherMe]

How often do these sleep attacks come?

[callieharlem]

Hi, Sleep attacks come in different ways and amounts for every person. Before I was on medication I would estimate 10-15 sleep attacks throughout the day. Now on medication and using vigilance I probably average 2-4. However, I don't have caffeine in my diet, so I cannot say if that would improve this. Do you suffer from sleep attacks as well?

[AnotherOtherMe]

I don't have narcolepsy. In our psych class at my high school, we have what is called disorder day where every student is assigned a disorder and must act it out for the entire day. I acted out Narcolepsy. Although I cannot feel what narcoleptics feel every day, I got a hint of what it's like. I think it is disgusting for people to find the condition," funny," seeing as It can be quite hazardous to the narcoleptic's health and other people that may be involved.

[Justjason271]

...but before he left the room he told me "try not to laugh"...i felt so stupid...i felt like he thought i was lying. needless to say i did not go to the appointments and for that i have no one to blame but myself. but you're right it's not well known. anyway my big worry about getting diagnosed after having done my own research and discovering what i have, is the medication. but it sounds like the medication is only a good thing. anyway, thanks.

[callieharlem]

Wow, you have had a rough time. I am sure you are going to be pleased to meet with a doctor who is an expert in the field. You may not need the same medications that I do, each person is different. Best of luck and thanks for commenting!

[StormyNoMore]

I'm 30 and I was diagnosed when I was 17 yrs. old. Being female, and pregnant at present, I can't take medication while I'm pregnant and I recently decided to stop driving due to my 4th car accident caused by narcolepsy. If you haven't been seen by a neurologist, do it ASAP. Seeing a specialist will begin a new chapter in your life. Also, if you do have narcolepsy, it takes a little weight off of your shoulders just knowing that it's not your sleep attacks are not your fault.

[callieharlem]

Have you been in to see an expert yet?

[Justjason271]

wow...you have made me very excited. i'm 34...not yet diagnosed...but i have my first appointment on feb 18th to see a doctor who specializes in sleeping disorders. i have had symptoms since i was 16. 7 years ago i made an attempt to see a doctor. at that time i had no clue what was wrong with me. i told him about my "laughing episodes" (catoplexy)...and he told me he never heard of such a thing. in his defense he did schedule some tests for me, .....

[mamaoctopus]

I think your description pretty much nails it. I've very recently been diagnosed, and it's so true that people just don't understand, and the mocking gets old very quick. All I could add is how commonly this is misdiagnosed. I've been told in the past year I had everything from bi-polar disorder to a brain tumor, also making it even harder for me and others to accept this true dx. Thanks for taking the time to put this out there.

[sleepyvlog]

I'm glad the treatment works for you. So you have no side effects from provigil then?

[callieharlem]

I have had no side effects from Provigil personally. Have you had problems with it?

[r3t4y5]

Practicing Ki-training/belly awareness should become a daily habit if you really want to change anything.

[r3t4y5]

I think you can change a lot by practicing Ki-training. There is a book called Book of Ki by Koichi Tohei which gives very good exercises. Practicing Shiatsu is also very benificial; it workds with Ki, which is energy and it's measurable. In science it's called bio-electricity. You can also do tai chi, qi gong and yoga or such.

I can understand that for a lot ppl this is not their cup of tea, but consider 1 thing: you can also just feel sorry for yourself and do nothing.

[callieharlem]

Thanks for the advice. I practice yoga and other exercises several times a week. I don't think this video is about sitting around feeling sorry for myself. I am trying to encourage others to take action to take care of their health.

[StormyNoMore]

How does the yoga and exercising help with the sleep attacks?

[narcoleptus]

Thru exercise we take in and absorb oxygen which is a stimulant, regular deep breathing will mean your blood, brain, whole body will be more oxygenated

If you only do a little exercising/yoga, it doesn't have much effect. I used to do 2 to 3 hrs of hatha yoga, breathing exercises and meditation every day, my daytime sleepiness which became barely noticeable and I slept much better at night!

start with an hour a day, 1/2 hour of hatha yoga, 10 min breathng excercises, 20 min meditation.

[callieharlem]

I have not been able to practice lately because of school conflicts, and I have noticed that my sleep is not as deep. I agree with what narcoleptus points out. It is medically very difficult to pinpoint cause and effects with the brain. I have noticed and had reported to me by dozens a wide variety of improvement. As a nursing student I have started to realize that only downside of exercise is the time commitment and delayed onset muscle soreness.

[StormyNoMore]

Do you have narcolepsy?

[r3t4y5]

No.

[daud8472]

Thanks very much for your video, and wow I'm loving the hair!

[narcoleptus]

Hi,

I'm sure this video will help and encourage many people to feel a bit better, if not a lot better, about their own narcolepsy, especially younger people!

You've truly done a great job!!

..and you come across wonderfully,

Your positive demeanour, outlook, vibe is so heartening!

.....and your red hair is great!!

....a million stars**********etc

[callieharlem]

Thank you so much!

I just hope it convinces a few people to get proper treatment and not fight it like I did. Looking back I realize how heavy a price I paid for ignoring my doctors requests.I love the red hair as well, it even glows under a black light ;)