Living with Narcolepsy
Damien is a 21 year old narcoleptic who lives in York with his parents, who run an old fashioned guest house. His unusual condition has had a devastating impact on all of their lives. He often finds many of the things that we take for granted a real struggle: paying attention, learning, getting and keeping a job, communicating, sleeping (ironically).
Duration : 0:6:17
September 13th, 2009 at 2:42 pm
I take adderral and …
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.
September 13th, 2009 at 2:42 pm
cant remember half …
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
September 13th, 2009 at 2:42 pm
cant remember half …
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
September 13th, 2009 at 2:42 pm
cant remember half …
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
September 13th, 2009 at 2:42 pm
cant remember half …
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
September 13th, 2009 at 2:42 pm
Hi, i;ve had this …
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,
September 13th, 2009 at 2:42 pm
i tried xyrem
…
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?
September 13th, 2009 at 2:42 pm
When you are ” …
When you are “different” ,
than you can really appreciate life,
that so many people take it for granted…..
September 13th, 2009 at 2:42 pm
im 15 and was …
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.
September 13th, 2009 at 2:42 pm
Really enlightening …
Really enlightening video, I hope that treatment continues to work for you.
September 13th, 2009 at 2:42 pm
Cheers to Damien …
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!
September 13th, 2009 at 2:42 pm
some adhd suffers …
some adhd suffers experience similar symptom
September 13th, 2009 at 2:42 pm
Bravo…. I’v …
Bravo…. I’v spent years trying to come up with his words to describe my experiences……Thank you
CHEERS!
September 13th, 2009 at 2:42 pm
Wow, I know exactly …
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.
September 13th, 2009 at 2:42 pm
Production quality …
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.
September 13th, 2009 at 2:42 pm
Wow I never knew …
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.