Living with Narcolepsy

[buymodavigil]

the excessive daytime sleepiness & the features that go along with it are the easiest to consider if you’re wondering whether you suffer from narcolepsy. the newest and best treatment available comes in the form of modavigil. Modavigil is a brand new treatment that is proving very promising to all suffers of extreme sleep deprivation.But of course you have all the option to seek for medical attention.

[TheLiviawest]

God this is really scary

[LDSPAIGE]

You said when you have thoes emotions, you go into a rem sleep.... isnt that Cataplexy?

[CalciteSage]

@LDSPAIGE Cataplexy is being unable to control your muscles for a short period of time. REM sleep is Basically just dreaming.

[ladyofanda]

he needs soul time, and to self discipline and to fulfill his shamanic self once he has mastered other parts of his self should he so choose, and a detox in thailand which includes yoga to actually ground and reenergise his body, he also needs to do a twice daily meditation which can be found type in raym to google.

[mellowello]

I am 22 years old.

I have ALWAYS BEEN VERY SLEEPY!

i suspected that i had some sleep disorder but everyone just thinks i am lazy.

TODAY i was properly diagnosed with narcolepsy

and i can totally relate to ALL your comments! :(

[ladyofanda]

tried everything in the book? he talked about taking acid and tripping, that causes hallucinations. he's a lazy westernminded person who assists like you in the destruction of the planet by lazy methods of drug dependance and excuses of science

[n1246860]

@ladyofanda He said he never took acid but is explaining how vivid and strange Hypnogogic and Hypnompic hallucinations are. Having almost played for his country going to University, playing for University I would hardly call that lazy. He can come off the medication should he choose to but I suspect since once again he has severe narcolepsy he might decide it better to stay on some medication if it helps. Why do you not ask instead of assume because your comments look even stupider

[ladyofanda]

@n1246860 you are a very negative and insulting person. i have a hernia and am sick as a dog. what healing knowledge do you claim to have? if you were a professional, you would be sued for abuse.

[ladyofanda]

From what he says, he doesn't try much to sleep by natural methods, just expects his body to sleep without balancing his life and switching his mind off, and goes out partying, destroying his liver and other body organs. An ill functioning liver is a major cause of sleep disorder. And to feed the body with allopathic synthetic medication that the liver has trouble assimilating will ensure long term dependence, becoming a negative cycle of stronger medications.

[n1246860]

@ladyofanda Cataplexy = no hypocretins in his cerebral spinal fluid. Consequently he has no control of his sleep wake cycle. After 5 years of relentless insomnia, sleep deprivation, sleep maintenance insomnia plagued by hallucinations and cataplexy Xyrem is an obvious, safe no brainer. Dependence is not necessarily negative if the medication in question mimics what hyprocretins do. Are you privy to his EEG. No. Ill advised comment but since you like Enya I think you're OK.

[ladyofanda]

@n1246860 you seem to think your answer is the only possible answer that there is. well i tell you what, if he were to change his lifestyle then he would see a change in his chemicals. i had no advice, i've been an insomniac myself since childhood, and i know for myself it is do to with food eaten, doing exercise, spiritual life, and focussing on what is important for health for my sleeping patterns to reinitiate as a natural cycle.

[n1246860]

@ladyofanda He has almost certainly tried everything there is in the book before starting medication as well as the medication he will already be on before trying Xyrem. What you say may 'help' or complement but you're throwing flowers against a brick wall. He has severe narcolepsy with severe EDS and yes my answer is his particular case is almost certainly correct because he is so obviously severe. I do not argue on youtube. I made an exception. There is always one. Voodoo bloody voodoo.

[ladycav09]

My dad has narcolepsy and he was diagnosed in his 50s. He noticed things changed for him in his teens after having a cold or some other infection. Has anyone else had this experience?

[SuperFaheem11]

I am 35. I've was diagnosed with narcolepsy when I was 15 years old . I think it started around that time. I think mines was started from trauma to the head because no one in my family has narcolepsy. It only makes sense, since i got into lots of fights at that age.

[sparklingsspit]

I would love a report on exactly how his life changed after the xyrem. I feel so far down a hole that even if xyrem worked for me as the absolute miracle drug, the transformation into a functional human being will be a long and complicated journey. Excited to to hopefully get a prescription with an insurance appeal. In the meantime, I can't find much about it on the internet.

[n1246860]

I believe what he is trying to say is that cataplexy is idiosyncratic. Whilst humour may be the predominate trigger, understandably getting angry with the condition and/or any hint of emotion precipitates an attack - loss of muscle tone. Narcolepsy is an interesting phenomenon but deceptively debilitating especially when you consider narcoleptics are themselves the expert hiders of their illness - avoiding triggers and leading reclusive sedentary lifestyles not through choice.

[BIasphemer]

One of the very few perks or narcolepsy is that some of my crazier waking hallucinations makes for pretty entertaining storytelling among friends. Once, I was battling an unknown entity below the floor that was stealing a stream of liquid protruding out from my nighttable/drawer. I had no idea what the liquid was, but god damn it it was MINE! So I did the only rational thing in such a situation; I burst into my dad's bedroom, yelled at him, stole his blanket, and covered the drawer with it

[depeche609]

I just got diagnosed with narcolepsy (without cataplexy thank god!) and ppl seem not to believe me. They think I'm lazy, depressed, anemic, ect, even AFTER I went to the doc, got diagnosed, and started taking medication. It's almost like they are jealous and want to sleep as much as me. They have the wrong idea. Sleeping this much has effected all parts of my life and relationships.

[sofiarune]

I feel for you. I have a significantly less cool video about my experiences with n on my channel. I keep meaning to update but I've been too busy and tired. Maybe I'll send you a personal message latter but I need a nap. I'm sure you understand.

[queenvelvet]

Xyrem saved my life. I don't know how I lived without it.

[extremedusk]

I really hope that Xyrem becomes a more widely accepted form of treatment for Narcoleptics and Cataplexics. It has been the only thing that has made my life return to almost normal. It's comforting to hear that I'm not alone in this and that I'm not the only one who has lost jobs or been dropped from classes due to my disorders. I hope that someday people will be made more aware of the seriousness of the condition. Most people think we just sleep too much... it's so much more than that

[nthambu22]

what really causes narcolepsy??

[zhn0k]

legal meth ftw

[emeluttan1]

im so sorry for all of you that have a family that dont understand and support you !! Life is hard for you as it is. I have a son that is 6 years old and has Narcolepsy. Fore me its natural to help him and accept him the way he is. I get so sad and angry when i read that parents can act like you describe. I hope that you all ahve other persons in your life that you can lean on !!!! Sorro for my bad english ;O))

[EclecticTones]

I can totally relate to this, Every thinks you are normal and that it's not that bad. but its hard to mantain a wakeful state and if you resist the urge to sleep for too long your body will make you sleep. I've collapsed and hurt myself at work, I've been fired for sleeping, made fun off. I get Depressed alot. My mother thinks that I'm just useing narcolepcy as in excuse for everything wrong with my ablity to mantain my life. that's only cuz she doesn't undrestand wut its like.

[hummer0328]

@EclecticTones

I have found that one of the toughest things about dealing with Narcolepsy is family. And I know we aren't the only people who have had the same problem. For some reason a persons own family has a hard time accepting and understanding what we are going through. My dad is in complete denial, and my mom thinks I use it as an excuse.

I mostly just try to remain calm and patient with my family and try to realize they would totally change their opinion if they knew how it felt.

[engelmohr2006]

@hummer0328 fuck them then if they don't believe you just disown them as your parents its not worth it I suffer from a minor version of this and it is annoying as hell I can't imagine what a extreme version of it can do

[lili7903]

@EclecticTones TAKE RITALIN I have narcolepsy since I have 10 YEARS OLD and now and 35 for the lats 3 years I beaing taking also at nigth tine CLOMIPRAMINE it help me to sleep somtime better at night and more strong during the day.. DON'T WOORY PEOPLE at ignorant and they dont' know anithing about us but we arre especial i we have to make ourself stronger and live our live as normal posible dont' give up you have a lot to acomplish and people make funn with sleepiness are idiot they sleep

[olfan92]

@EclecticTones Its not an excuse and u shouldnt work with narcolepsy...

[kartherton]

Thanks for the video.

All the same here.

Diagnosed at 27yrs and now 45yrs.

I learnt to deal with this a lot, the cataplexy mostly, but this takes a lot of time.

All the best to you.

Keith. Norfolk. UK.

[matjcarter]

Good to hear that the drugs are working Damien

[kimmeh143]

I met him at the UKAN conference... He is really intimidating and talks lots really really quickly. Scary.

[kimmeh143]

And I should probably add that he got the xyrem. :)

[samtubed]

Internet's not working, might just be a glitch in the matrix, lol.

[pmeity]

Thankyou for providing such an accurate depiction of narcoleptic life. Informative & entertaining without commanding self pity, in the future I will be using this to explain my condition to friends & family.

[MrPicks321]

i know the feeling. used to be a top national table-tennis player. lived with this diagnosed as m.e. after glandular fever for 15 years maybe it was.... now narcolepsy would seem a better label falling asleep at the wheel is my worst pulling over for layby sleeps after 1 hr of driving in morning is too common. reading a book forget it this triggers me.

[jamesrdegen]

Story of my life...

[OnDarkCloud9]

that's called cataplexy nieloz

[missb8609]

@OnDarkCloud9 actually that's sleep paraylisis which is usually acommpanied by hypnocognic hallucinations. Catapley is muscel paralyis invoked by an extream emotion like anger or laughter.

[missb8609]

@OnDarkCloud9 actually that's sleep paraylisis which is usually acommpanied by hypnocognic hallucinations. Catapley is muscel paralyis invoked by an extream emotion like anger or laughter.

[nieloz]

They still dont know what i have, sometimes i cant move when i awake.. i'm just paralyzed

[frozenlime]

sleep paralysis.

[nieloz]

I dont have the dreams or hallucions, but what i do have is all of the other facts of narcolepsy except cataplexie and the hallucions..

[Koroush51]

I get Narcolepsy everytime i go to math class.

[MetaKittie]

OMG me too.

D:

[LetsChaseDucksx]

im 15, ive had it since i was 8

i dont want people to feel sorry, i want them to understand how hard it is to do normal things.

[hhuluhhulu]

@LetsChaseDucksx Im 14, Ive had it since i was 9

I have everything but cataplexy and sleep attacks its just the sleep paralysis and hallucinations that rocks me

Thumbs up for all the Narcoleptic Soldiers

[neanderslob]

@LetsChaseDucksx Right on man; I got diagnosed when I was 24 and have been medicated for two years. Since then, I've earned a masters degree in physics. It was frustrating having these symptoms for SO long and being called a slacker because of it. You're dead right, without medication, it was fucking ridiculous to do anything.

[ladyofanda]

@LetsChaseDucksx maybe you should understand that hard work is more appreciated by the world.

[deere1750]

im 21 to just got told from my sleep doctor that i have narcolepsy and since i was about 12 my life changed real fast i know exacly how he feels some people say it most be nice to fall asleep all the time but they have know idea what comes with it only use how have it knows how it feels i get mad at my self couse i cant keep my self awake it sucks the doctors have me on three difrent drugs and there doing nothing the one to keep me awake is MODAFINIL its not working does any one have any ideas

[hummer0328]

xyrem has been the only drug I have found so far that has managed to event take a dent out of my symptoms. But as I understand it, its hard to get funding for Xyrem outside of the US. Mine is fully paid for by NORD (although I think Jazz Pharmacuticals has a new provider). The cost is over $2000 USD per month! I still need high doses of dextroamphetamine to function, along with Lexapro for cataplexy. But the Xyrem has been the key for me!

[MrPicks321]

i have been on it for 3 years just took myself off it as i feel it changed my personality. i was more awake which was great but lots of side effects. i became intense, mood swings, speaking too quickly before the brain could process, aggressive, on edge, memory disabled.... waiting for reassessment now.

[estervit64]

@deere1750 i am using modafinil too and it shows best effects when i take it just before go to bed

[mayat730]

I take adderral and Xyrem for my narcolepsy it has made a huge improvment in my life. I hope it dose to you as well.

[brealey08]

cant remember half of my life, memory problems i am still waiting for medication. people say have a strong coffee. ha ha i wish i could i live on lucozade maybe 4 bottles a day it would be just the same if i drunk 40 a day. somedays i get up and my arms and legs dont even want to move. theres so many things besides being sleepy. i dont go out much if i do im late..... my life has been 1 big excuse, sorry im late ive ? and so on

[brealey08]

cant remember half of my life, memory problems i am still waiting for medication. people say have a strong coffee. ha ha i wish i could i live on lucozade maybe 4 bottles a day it would be just the same if i drunk 40 a day. somedays i get up and my arms and legs dont even want to move. theres so many things besides being sleepy. i dont go out much if i do im late..... my life has been 1 big excuse, sorry im late ive ? and so on

[brealey08]

Hi, i;ve had this since i was 12/13 yrs old. im now 37 and been going to my doctors all my life telling them im tired...... i have just been told last month i have narcolepsy , my life has been spent sleeping being called lazy. coping with horrific nightmares. almost like ive been in a coma missed so much,

[brunos6]

i tried xyrem

didn't work for me

it made me feel drugged during the day

i'm at the max of every other drug available

haha what's left for me?

[t850]

When you are "different" ,

than you can really appreciate life,

that so many people take it for granted.....

[hbkskater444]

im 15 and was perscribed with provigil and so far its helped a lottt.. i can make it through the day much much easier but it does have some weird effects. if i stare at an object things around it seem to wander off and sometimes i feel like im on some kind of illegal drug.. but i dont mind that since i like trippy things haha :] it also makes my emotions stronger i think... instead of somethin that would usualy make me a little sad, it makes me really sad.

[ZettaSho]

Really enlightening video, I hope that treatment continues to work for you.

[blackseabrew]

Cheers to Damien and God bless. Xyrem has made a dramatic improvement in my life too. But it's been quite a battle.

Frankly though, I'm quite concerned, even frightened, by the prospect of this terrible economy costing me my job and insurance and the ability to pay for the Xyrem.

Ironically, the raw materials to make a months supply of Xyrem could be purchased for an average of maybe $30 US per month. But our laws in the US drive up the price to $1300 US per month. Curious isn't it!

[chale2126]

some adhd suffers experience similar symptom

[barebowarchery]

Bravo.... I'v spent years trying to come up with his words to describe my experiences......Thank you

CHEERS!

[TeNaeVC]

Wow, I know exactly what he's going through. My insurance won't cover Xyrem. I've experienced most of his symptoms: the EDS, my knees give when I laugh, I see strange things sometimes, the sleep attacks and the general fog, I'll often lose my train of thought. I hope he has good luck with the Xyrem and has the normal AM to PM life he wants.

[actionjackthomas2]

Production quality & editing of this video are top notch. Damien & the producer manage to depict the personal aspect of life w/ narcolepsy more empathetically & accurately than almost any other I've seen. Plus, there are an amazing # of details & little insights into the disorder jammed into Damien's dead on descriptions. This entertaining video has additional value as an educational & investigational resource for sleep disorder docs & researchers. God bless Damien, his parents, & his docs.

[italianman004]

Wow I never knew the extent of such a condtion. Kinda funny story to tell, During a job interview once the guy interviewing me fell asleep many times during it, just nodded off , alot, I thought he was bored with me,come to find out he had that disorder too.

Damien i am happy to hear you have found some meds that are helping you ....Stay strong and awake..LOL....keep you sense of humor, humor gets us through lifes trials.

God bless.