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).
Tags: paying attention, struggle, Living, narcoleptic, guest house, Narcolepsy
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And I should probably add that he got the xyrem. :)
I met him at the UKAN conference… He is really intimidating and talks lots really really quickly. Scary.
Internet’s not working, might just be a glitch in the matrix, lol.
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.
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.
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.
Story of my life…
that’s called cataplexy 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..
sleep paralysis.
They still dont know what i have, sometimes i cant move when i awake.. i’m just paralyzed
OMG me too.
D:
I get Narcolepsy everytime i go to math class.
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.
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!
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
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.
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
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
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
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
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,
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?
When you are “different” ,
than you can really appreciate life,
that so many people take it for granted…..
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.