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).

Category:

Education

Tags:

• Narcolespy
• Cataplexy
• Hypnagogic
• Hypnopompic
• Hallucinations
• Sleep
• Paralysis
• Microsleep
• Xyrem
• Provigil
• Modafinil
• Deprivation
• Automatic
• Behavior
• REM
• Rapid
• Eye
• Movement
• Narcolepsy
• Hypnagogia
• Dr
• Emmanuel
• Mignot
• Stanford
• Center
• for
• Hypocretin
• Orexin
• Lateral
• Hypothalamus

[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.

[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!

[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.

[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.

[CalciteSage]

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

[TheLiviawest]

God this is really scary

[LDSPAIGE]

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

[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

[ladyofanda]

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

[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.

[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.

[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! :(

[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.