It must be good having someone caring about you. I have a disease that I can feel pain... and I'll probably don't reach 30 years... but i'm prepared, good luck to you.
I am so glad to see your video. I too am going to start a you tube series of what I go through with Narcolepsy w/Cataplexy. I do thank God that I am not as bad as daud, but they still haven't found a good med for me. I am on the last stimulant there is & if that doesn't work I am hoping they will then put me on the Xyrem. Best of luck daud. I admire you & respect you.
@kimmerhawk48 Thanks for your comments mate and best of luck with your Youtube about narcolepsy. Let me know when you have made some videos! All the best...
I am very fortunate in that I have narcolepsy but not cataplexy. I get that horrible overwhelming need to sleep (you know the one) but fortunately maintain muscle control.
It's so good to see other people online with narcolepsy, so people can see we really aren't how the media portrays us--we are like everybody else, just very, very, very, very sleepy. LOL.
very informative. im learning about this now in psychology class and I now have a clear understanding about what narcolepsy really is and how it affects those who are unfortunately diagnosed with it. thank you and I hope things are well with you.
wow....ummm this is INTENSE! i hate to say this but at some point in this video I started laughing because this is just unbelieveble (not sure if that's how you spell it) i'm so sorry.
Have you looked into the LDN (Low Dose Naltrexone)? Narcolepsy as you know is an autoimmune disease and there are people who have taken LDN for various autoimmune diseases and have seen improvement or cessation of autoimmune diseases like MS.
@antonioj123 I do know about LDN and you are so right. I've thought about asking for it myself because of the pain I have most of the time. I'm not sure if I have fibromyalgia also.
im narcoleptic and I am so lucky coz its not that bad like yours. Ive been in bosnia war and kept me awake, he he, Steemulance its my answer as well, try to do self control, I sometimes feel coming and I find safe place to sit and go sleep. I hate catalepsy and nightmears.
im narcoleptic and I am so lucky coz its not that bad like yours. Ive been in bosnia war and kept me awake, he he, Steemulance its my answer as well, try to do self control, I sometimes feel coming and I find safe place to sit and go sleep. I hate catalepsy and nightmears.my neck sometimes hurts coz my neck relax like I am dead, so why you dont put something around neck so when go sloopy, still stay in safe position. they It.
Bless you. I have Narcolepsy and it's really a pain in the as* for me. People have called me the same names. Lazy, bum, loser, you name it, I've been called it. I do not have Cataplexy though. You are not alone! Thanks for posting your clips on here.
Wow. I've been diagnosed with narcolepsy without cataplexy, and I have for years felt a bit sorry for myself because of it. What a prick I am haha. Compared to this I'm like Captain REM, Master of Healthy Sleep Cycles.
I like the way you don't take any shit from the likes of Life, and just go all Cool Hand Luke on it's ass. Kudos.
I have narcolepsy too. Not this bad, but I have it. It's really angering how even though I told my teachers about this they still yell at me for not paying attention and falling asleep in class. No one cares at all and its so freaking stupid. I wish the general public was educated about sleep disorders because whenever someone is tired they don't think they have a sleep disorder. They automatically assume that I didn't get enough sleep, or that I fall asleep in class or purpose.
I definitely support you for this. I have a best friend who also has narcolepsy and I know I wouldn't leave his side ever. But I have a question, I know memory loss can sometimes be part of narcolepsy but is there any chance that it can come back? He's finding it hard to remember me.
OH MY GOD THAT IS SO SCARY. I HOPE U GET BETTER. I HOPE SCIENTIST CAN FIGURE OUT HOW TO STOP THIS FROM HAPPENING. I WAS WONDERING IF IS THERE SOME WAY YOU CAN COMMUNICATED YOUR CONDITION TO YOUR LOCAL AUTHORITIES AT LEAST. THAT WAY THEY KNOW JUST IN CASE THEY COME ACROSS YOU.
You are truley an inspiration! My 7 yr old son was just diagnosed with Narcolepsy/Cataplexy in April of this year. I wish there was someway that he could meet you and speak with you about what to expect in the future. I dont see how such a devistating disease could hit such sweet people. Are you on medication? My son takes Zyrem 3 grams twice a night. Thank you for being brave enough to share your story. I appriciate it greatly!
did your narcolepsy start slowly or was it a sudden change? asking this as i have had mine develop slowly over the last 5 years but now im getting worried as it seems to be taking every thing over.
i am also so greatful that you posted theese vids as it really does highlight the dangers of the condition, something i have got to know all too well recently.
hope lifes good for you in other respects though :)
Hello Mo, Thank you for sharing your life with us. When I saw this on the sci-channel, I thought immediately; how good God is, we are not all the same and we all are individually created. Not to seem weird or harsh but it is utterly impossible for you to lead a sin-filled life because you are asleep most of the time:) tschuss
hey Mo, just saw a reportage about you, brave stuff to go to that museum, i hope you've done a lot more trips since then! But i can't figger out why you don't use a wheelchair to go out, doesn't it hurt to fall so much? Or can you put some resistance in your fall?
@Miklo111 Yes I do have a wheelchair, and I should use it more than I do. I do gt some warning, but in that documentary I should have laid down. I hit my head rather hard but not too bad. Thanks for your comment...
My partner has narcolepsy with cataplexy. and has had some great progress on a gluten-free diet. Have you tried this? The narcolepsy is not cured, but he is off all meds now and can do many things he could not do before, even ON meds. I know he would like me to share this experience with other narcoleptics, he is busy taking a nap :)
You are brave and couragous!!I was put on a narcolopsy drug over a year ago. I would have to pull over in my car and fall asleep on the side of the road etc. I would get a 5 minute warning at best and im out. They now say I dont have it my "faling out" IS due to pain levels from RA. All I know is I have had to give up anthing intence because I just "fall out" it its to much. Last night I woke and by the time I went to the other room I lay down before falling down. Scarry stuff Hang n there hugs
I just saw about this on TV and cannot even imagine how it must be to fall asleep instantly like that. I hope they find a cure for this so you won't have to worry about when and where you want to go during the day.
I really feel for you - It must be really distressing. Im easily shocked or startled but i do not have any narcolepsy etc. It must be horribly to be in a frightening situation and not be able to get away. I hope they will find some form of cure. I really enjoyed the videos though
Hello! I was watching your program on the science channel, and I really thought it was inspirational that you went out to the science museum. I have the different sleep problem then you, I am just always tired, in a dreamy, drunk, half awake state except at night. I have turned into a hermit myself, being home schooled, and my life begins at about 10:00 pm. Just wanted to say that your story was helpful!
My husband has N and Cataplexy and has been taking Prozac for his symptoms. For some reason the Prozac helps him and he does not have many episodes at all anymore. You might want to talk to your Doctor about it. Good luck to you.
The best drug for me turns out to be a selective-serotonin reuptake inhibitor, SSRI - an antidepressant drug that acts by blocking the reuptake of serotonin so that more serotonin is available to act on receptors in the brain. Wonderful for cataplexy prevention. The one I use is Paroxetine, 60mg a day. Thanks for writing in...
I have good days and bad. I can have cataplexy up to 60 times a day when I'm bad, other days it can be as little at 10 times a day. Thanks for you text.
Yes, my father had narcolepsy and both me, my brother and sister have been diagnosed with it!
It took me 35yrs to get diagnosed but I always knew what it was because of my father and always did lots of exercise and fresh air, so I was otherwise very healthy which made it harder to get taken seriously!
I have a playlist of narcolepsy videos/documentaries on my channel, I try to collect the better one's.
It must be good having someone caring about you. I have a disease that I can feel pain... and I'll probably don't reach 30 years... but i'm prepared, good luck to you.
dandanwii 2 weeks ago
@dandanwii Thanks for your comment :)
daud8472 5 days ago
@dandanwii Sorry can't feel pain*
dandanwii 5 days ago
its not funny this is a very serio- ZzZzZzZzZz
DaBlindKungFuMastuh 1 month ago
I am so glad to see your video. I too am going to start a you tube series of what I go through with Narcolepsy w/Cataplexy. I do thank God that I am not as bad as daud, but they still haven't found a good med for me. I am on the last stimulant there is & if that doesn't work I am hoping they will then put me on the Xyrem. Best of luck daud. I admire you & respect you.
kimmerhawk48 2 months ago
@kimmerhawk48 Thanks for your comments mate and best of luck with your Youtube about narcolepsy. Let me know when you have made some videos! All the best...
daud8472 5 days ago
I am very fortunate in that I have narcolepsy but not cataplexy. I get that horrible overwhelming need to sleep (you know the one) but fortunately maintain muscle control.
It's so good to see other people online with narcolepsy, so people can see we really aren't how the media portrays us--we are like everybody else, just very, very, very, very sleepy. LOL.
I also play guitar :-)
LadyRose1985 2 months ago
i'm 15, and just learned i have narcolepsy. it isnt to bad yet but the cataplexies can get kinda bad when i have friends around.
CalciteSage 2 months ago
have you never tried cholmipramine or anafranel? i have cataplexy also (amybe not as bad as you) and the meds completely cancel it out....
ginicebark 3 months ago
HELLO....did you're symptoms first begin shortly after you got an immunization or vaccination shot? Please let me know. Thanks.
aceshigh8881 3 months ago
@aceshigh8881 No I have it from 7 years old and no vsccinstion shot.
daud8472 5 days ago
Hi please could you share the embedding code, I am apsychology teacher and I really want to share your story with my students. Thanks.
Misskurrst 3 months ago in playlist My day out with Narcolepsy
@Misskurrst Just show them the web page.
daud8472 5 days ago
very informative. im learning about this now in psychology class and I now have a clear understanding about what narcolepsy really is and how it affects those who are unfortunately diagnosed with it. thank you and I hope things are well with you.
r3b3l1n 4 months ago
i'm narcoleptic and i find that zzzzzzzzzzzzzzzzzzz
TheLummz 4 months ago
Hey man, i know exactly how you feel.
i was diagnosed with Narcolepsy a few months ago.
i can sleep ANYWHERE.
i've fallen asleep on pavement, standing, going to the bathroom and so many more.
i can't stand it!!!
it is frustrating and annoying.
your not alone!!!
God bless :)
LuLu4JESUS247 5 months ago
i would just go to sleep ;P
LilHalfHaitiBoy 6 months ago
I have this shit too. Not as hard as you, but enough to make me sleep at traffic lights.
AlbatrossDude 6 months ago
wow....ummm this is INTENSE! i hate to say this but at some point in this video I started laughing because this is just unbelieveble (not sure if that's how you spell it) i'm so sorry.
gossiprumor13 6 months ago
Have you looked into the LDN (Low Dose Naltrexone)? Narcolepsy as you know is an autoimmune disease and there are people who have taken LDN for various autoimmune diseases and have seen improvement or cessation of autoimmune diseases like MS.
antonioj123 6 months ago
@antonioj123 I do know about LDN and you are so right. I've thought about asking for it myself because of the pain I have most of the time. I'm not sure if I have fibromyalgia also.
daud8472 5 days ago
This condition is fascinating but must really suck. My heart goes out to you.
MrChristianRC 6 months ago
I'm guessing the cuts on your face are from falls?
LoniganTheDragon 8 months ago
wow
omijeff1 8 months ago
What a horrible illness.
MaxReinsch 9 months ago
Are there such things as Narcolepsy Service Dogs?
Buffheart 1 year ago
im narcoleptic and I am so lucky coz its not that bad like yours. Ive been in bosnia war and kept me awake, he he, Steemulance its my answer as well, try to do self control, I sometimes feel coming and I find safe place to sit and go sleep. I hate catalepsy and nightmears.
where do u like, ru in uk?
for how long did u have narcolepsy?
miax
porukazatebe 1 year ago
im narcoleptic and I am so lucky coz its not that bad like yours. Ive been in bosnia war and kept me awake, he he, Steemulance its my answer as well, try to do self control, I sometimes feel coming and I find safe place to sit and go sleep. I hate catalepsy and nightmears.my neck sometimes hurts coz my neck relax like I am dead, so why you dont put something around neck so when go sloopy, still stay in safe position. they It.
where do u like, ru in uk?
for how long did u have narcolepsy?
miax
porukazatebe 1 year ago
Bless you. I have Narcolepsy and it's really a pain in the as* for me. People have called me the same names. Lazy, bum, loser, you name it, I've been called it. I do not have Cataplexy though. You are not alone! Thanks for posting your clips on here.
freakypeoplehunter 1 year ago
Wow. I've been diagnosed with narcolepsy without cataplexy, and I have for years felt a bit sorry for myself because of it. What a prick I am haha. Compared to this I'm like Captain REM, Master of Healthy Sleep Cycles.
I like the way you don't take any shit from the likes of Life, and just go all Cool Hand Luke on it's ass. Kudos.
BIasphemer 1 year ago 2
I have narcolepsy too. Not this bad, but I have it. It's really angering how even though I told my teachers about this they still yell at me for not paying attention and falling asleep in class. No one cares at all and its so freaking stupid. I wish the general public was educated about sleep disorders because whenever someone is tired they don't think they have a sleep disorder. They automatically assume that I didn't get enough sleep, or that I fall asleep in class or purpose.
candlewick163 1 year ago 2
I definitely support you for this. I have a best friend who also has narcolepsy and I know I wouldn't leave his side ever. But I have a question, I know memory loss can sometimes be part of narcolepsy but is there any chance that it can come back? He's finding it hard to remember me.
BloodyWolfClaws 1 year ago
@BloodyWolfClaws My memory is really bad also mate, and it's not getting any better :(
daud8472 5 days ago
Hi there, is your condition Extreme Narccolepsy? or is that what any other narcoleptic patient would be having to go through.
supershock007 1 year ago
OH MY GOD THAT IS SO SCARY. I HOPE U GET BETTER. I HOPE SCIENTIST CAN FIGURE OUT HOW TO STOP THIS FROM HAPPENING. I WAS WONDERING IF IS THERE SOME WAY YOU CAN COMMUNICATED YOUR CONDITION TO YOUR LOCAL AUTHORITIES AT LEAST. THAT WAY THEY KNOW JUST IN CASE THEY COME ACROSS YOU.
STUMPYBOY1 1 year ago
You are truley an inspiration! My 7 yr old son was just diagnosed with Narcolepsy/Cataplexy in April of this year. I wish there was someway that he could meet you and speak with you about what to expect in the future. I dont see how such a devistating disease could hit such sweet people. Are you on medication? My son takes Zyrem 3 grams twice a night. Thank you for being brave enough to share your story. I appriciate it greatly!
playcj2007 1 year ago
Hi there
did your narcolepsy start slowly or was it a sudden change? asking this as i have had mine develop slowly over the last 5 years but now im getting worried as it seems to be taking every thing over.
i am also so greatful that you posted theese vids as it really does highlight the dangers of the condition, something i have got to know all too well recently.
hope lifes good for you in other respects though :)
keep smiling :)
zydec2008 1 year ago
Hello man, it's jeff from Chile ,
It's good to know that you have Karen, there not too many people in this world with a heart like that =)
I hope you can have a cure for this,
Greetings.
guitarralaraja 1 year ago
Hello Mo, Thank you for sharing your life with us. When I saw this on the sci-channel, I thought immediately; how good God is, we are not all the same and we all are individually created. Not to seem weird or harsh but it is utterly impossible for you to lead a sin-filled life because you are asleep most of the time:) tschuss
kikibraid 1 year ago
hey Mo, just saw a reportage about you, brave stuff to go to that museum, i hope you've done a lot more trips since then! But i can't figger out why you don't use a wheelchair to go out, doesn't it hurt to fall so much? Or can you put some resistance in your fall?
Miklo111 1 year ago
@Miklo111 Yes I do have a wheelchair, and I should use it more than I do. I do gt some warning, but in that documentary I should have laid down. I hit my head rather hard but not too bad. Thanks for your comment...
daud8472 1 year ago
This is sad.):
iTzxBaSiC 1 year ago
@iTzxBaSiC Don't be sad, there are people with a lot more problems than me out there. But thanks for your comment...
daud8472 1 year ago 13
@daud8472 Like me :-(
olfan92 1 year ago
@daud8472 I'd love to troll this, but I feel for you. I have a similar problem like your dad.
UberLifeTroll 9 months ago
:) I'm happy that you have someone to care for you! I wish you well.
Punkylolita 1 year ago
@Punkylolita Thanks, Karen is a wonderful person and very good to me.
daud8472 1 year ago 3
My partner has narcolepsy with cataplexy. and has had some great progress on a gluten-free diet. Have you tried this? The narcolepsy is not cured, but he is off all meds now and can do many things he could not do before, even ON meds. I know he would like me to share this experience with other narcoleptics, he is busy taking a nap :)
hellehathnofury 1 year ago
you seem like a very nice man,i hope you are complety healed from this disorder ive never heard of this,ive stumbled appon it on accident
martinboy121995 1 year ago
Do you find that a good/bad nights sleep can affect your narcolepsy?
QuiteSimpley 2 years ago
Well I never sleep all the night anyways, but not getting enough sleep is a killer for the narcolepsy yes.
daud8472 2 years ago
omg thats so sad ive got it too but not that bad.
JumpyKonijnJK 2 years ago
i saw in a different documentary as well can anyone tell me the name of that one too?
fredryckphocks 2 years ago
u are very brave and i really hope u get better
Mr0255 2 years ago
Thank you Mr0255, I'm feeling good these days thanks.
daud8472 2 years ago
You are brave and couragous!!I was put on a narcolopsy drug over a year ago. I would have to pull over in my car and fall asleep on the side of the road etc. I would get a 5 minute warning at best and im out. They now say I dont have it my "faling out" IS due to pain levels from RA. All I know is I have had to give up anthing intence because I just "fall out" it its to much. Last night I woke and by the time I went to the other room I lay down before falling down. Scarry stuff Hang n there hugs
SANDMANCASTHISSPELL 2 years ago
Wow, this is intense. You are brave for sharing. It really points out how important having people that understand with you is.
callieharlem 3 years ago 14
I just saw about this on TV and cannot even imagine how it must be to fall asleep instantly like that. I hope they find a cure for this so you won't have to worry about when and where you want to go during the day.
DWDeb 3 years ago
Thanks DWDeb. No meds are working very well for narcolepsy but they help a lot.
daud8472 2 years ago
I really feel for you - It must be really distressing. Im easily shocked or startled but i do not have any narcolepsy etc. It must be horribly to be in a frightening situation and not be able to get away. I hope they will find some form of cure. I really enjoyed the videos though
jenren87 3 years ago
Hello! I was watching your program on the science channel, and I really thought it was inspirational that you went out to the science museum. I have the different sleep problem then you, I am just always tired, in a dreamy, drunk, half awake state except at night. I have turned into a hermit myself, being home schooled, and my life begins at about 10:00 pm. Just wanted to say that your story was helpful!
iamahipo1 3 years ago
My husband has N and Cataplexy and has been taking Prozac for his symptoms. For some reason the Prozac helps him and he does not have many episodes at all anymore. You might want to talk to your Doctor about it. Good luck to you.
CrimsonRosePetal 3 years ago
The best drug for me turns out to be a selective-serotonin reuptake inhibitor, SSRI - an antidepressant drug that acts by blocking the reuptake of serotonin so that more serotonin is available to act on receptors in the brain. Wonderful for cataplexy prevention. The one I use is Paroxetine, 60mg a day. Thanks for writing in...
daud8472 3 years ago
my thing is more like excessive daytime sleepiness. medicine is lexapro and methamphetamine.
but both wear off in effectiveness after a while of taking them regularly. body develops tolerance.
then you have to stop taking for couple days, so they will work again.
it's a nightmare.
eelingstayandlay 2 years ago
Thanks for your thought. I'm on a simular drug.
daud8472 3 years ago
you poor man. how many times a day does this happen to you?
whysoblind 3 years ago
I have good days and bad. I can have cataplexy up to 60 times a day when I'm bad, other days it can be as little at 10 times a day. Thanks for you text.
daud8472 2 years ago
Hi,
Yes, my father had narcolepsy and both me, my brother and sister have been diagnosed with it!
It took me 35yrs to get diagnosed but I always knew what it was because of my father and always did lots of exercise and fresh air, so I was otherwise very healthy which made it harder to get taken seriously!
I have a playlist of narcolepsy videos/documentaries on my channel, I try to collect the better one's.
All the best
narcoleptus 3 years ago
Hey. Thanks, it was really cool getting out for the day. Do you have narcolepsy too?
daud8472 3 years ago
HI Daudi,
I seen the channel 5 documentary,
glad you made it to the science museum!
narcoleptus 3 years ago 3