Living With Cataplexy and Narcolepsy

[ginicebark]

this is some funny shit--especially the marks on the face! i can totally relate though. i have narcolepsy too with cataplexy. are you not on or have you tried chlomipramine (also known as anafranel)? it's a very cheap antidepressant that just so happens to cure most cases of cataplexy. it's changed my life! for real.....

[fiend77flug]

Hello D,

My husband also has extreme cataplexy and narcolepsy and I applaud you for showing the world what this condition is and how it is NO laughing matter. We do wonder, are you on medication? My husband takes medication and also it is no cure, it does help him. I wish you all the luck in the world and let's hope for a cure!

Much love.

[SHREEPALPANWAR]

@fiend77flug my sister is also suffering from Narcolepsy and Catalepsy and she hardly awake..she is awake only for about 2-4 hours a day ..!!

[toasty303]

must be hard man, i cant imagine.

but as for the paramedics and policemen, thats what theyre trained to do (except the salts, ive never heard that one). so you cant blame em too much for doing their jobs. your circumstances arent commonly known or taught in emergency medical classes

[worktosser]

Respect to you mate. I have a small suggestion .. don't know if it's a good one, but perhaps you could have a t-shirt made that says you suffer from this? Wear it just when you are out and about.

[squee3333]

<3

[rusterpus111]

hello friend, I hope you are coping all right. it must be hard, but you get to have more vivid dreams than the rest of us, as I have read somewhere else in the net. anyway, thanks for the upload and take care.

[3kliksphilip]

Thank you, this video is one of the most interesting and human videos on narcolepsy, I enjoyed watching it.

[porukazatebe]

hi

i have narcolepsy too. I am as well fed up of how people and goverment treats me.

I am not that bad like you coz I am beting it, I had it all life, as well my life was hell, as well. I servived BOSNIA WAR, and I WILL THIS TOO.

I WILL DO ANYTHIUNG IN MY POWER TO HELP PEOLE LIKE ME. I AM SUPPORTING YOU 100%

MIAXXX

[klyfly1]

no she will not see him- theirs nothing wrong with him and all he needs is a sleep aid--that copy of that report was not suppose be releases with the other medical records-someone goofed up--lucky for us...

[klyfly1]

hubs was waiting for a flight -some guy was having problems before they cuffed him to hall him off- they asked him if he had cataplexy--he was drunk--maybe we should move to Colorado--down here in these back woods one is called crazy-- got the ok to go to LA again --hopeful a treatment plan -and to find a nur Dr who knows what they are doing here- LA wanted him to see the nur here again for treatment--got a copy of a nur report from Dr Don't Come Back You Hear to the lung DR saying --pt1

[sinclaircats]

My heart breaks for you sweetheart. I wonder if wearing ear plugs would help you because I know sudden noise can effect you . Have you had an MRI scan and if they won't give you one let me pay for it . At least everyone here is routing for you instead of thinking you are fake. TONS OF LOVEAND STAY STRONG

[daud8472]

@sinclaircats Lots of loving back at you hunni, that was so nice to wake up too x

[sinclaircats]

@daud8472 Have they given you an MRI scan ??????? Surely to god they can do something even if they have to make you permanently deaf ( yes I know that sounds horrific ) but if being deaf stops the shock to your body which starts a narcolepsy fit would give you at least a life that would be good. I bet the worst thing is people not believing you and women avoiding you like the plague . I think more is being done now so keep our fingers crossed for you

[JuiceBoxLoveX]

@sinclaircats with cataplexy its not always sound it can be visual . I have it too , and most of the time its touch and visual things that make me go out

[orion9k]

I've heard about people with Narcoleptic taking medication such as Ritalin, I wonder if that might get you through the day without getting hurt

Thanks for sharing

-Orion9k - Denmark

[Conny2405]

hey....hope you are fine....send u lots of luv...take care...

[daud8472]

@Conny2405 Thanks Conny. Love back at you x

[holocaustrecess]

Very informative. Thank you for sharing!

[SuperPowderPuffGirl]

This is definitely a hard thing to live with, more people need to know about narcolepsy and what it's like. My friend who i used to date just got new meds to help with his memory because of his narcolepsy and he remembers everything except for me which is tough. I'm trying to stay strong and doing everything i can to help him. Should I give it time and will he be able to remember me again?

[indianirishfrench]

I didn't realize my problems with narcolepsy and cataplexy until I was 27 years old. When I started falling down because of emotional stimuli, that is when I went to a Neurologist, had to have polysomnogram and mslt tests. I was diagnosed-a severe case of narcolepsy and also sleep apnea. I had sleep paralysis at an early age and dreams that seemed so real, but I had no clue at 13- 26years old. Xyrem&adderall help me to live more normal now. I wish there was more public awareness of this.

[HaloMongoose]

you need a tatto on your neck, with something something like.. CATAPLEXY, NAROLEPTIC.. LEAVE ME ALONE.. haha, terrible that people actually have this.

[Loathinglove92]

Thank you for posting this. I'm so sorry that your situation is so severe. I am 17 and have had it since I was 14. My Narcolepsy isn't very severe. I hope it doesn't get worse. I have hadd a few experiences with sleep paralysis, it usually happened when I was almost asleep and would suddenly wake up. I also have cataplexy but mine isn't so severe that I fall to the floor. I just loose all the strength in my legs, kneesand arms, and my eyes get blurry.

[sueno3]

I'm 39 year old now and have had narcolepsy with severe cataplexy since age 16. I came across your video when I decided to search for cataplexy on you tube to try and explain to an old high school friend what cataplexy is. I've been mistaken for drunk many times and I don't even drink. It is humiliating. Thank you for sharing your story and making me feel like I am not alone.

[extremedusk]

I suffer from both daytime and nighttime Narcolepsy (Insomnia) as well as Cataplexy. My symptoms became so severe that I couldn't even hold a normal conversation. Since I can't sleep for more than a few minutes at a time at night, my daytime Narcolepsy gets even worse so my Neurologist prescribed me Xyrem. It actually helps with both disorders! It's a form of Sodium Oxibate that I take 2x a night (I don't mind since I would normally wake up anyways). It has been a lifesaver!

[memyselfiandanna1]

Hm. This is very interesting. Thanks for your video mate, I'm from Australia, currently studying paramedics, and we are being taught to do all the things you say they do to you...but they haven't mentioned anything about the possibility of a condition like yours. I'll try to spread the word, might mention it to my lecturer! :D Hang in there...:D

[DurtyDominican]

he need a good old fashioned medical bracelet for the stupid people who think pounding on an unconscious person is a good idea in the first place

[mike88mike]

Good on you Karen. You deserve a medal.

It must be so frustrating living with a disorder like this.

I found this video informative and a real eye-opener.

Thanks for posting. x

[CJWild8]

it's unfortunate most law enforcement dont have the necessary training to recognize disorders such as your own. do they offer anything such as a med-alert bracelet for cataplexy/narcalepsy? i realize most people dont think to check for these, but it may help a little. best of luck man!

[daud8472]

@CJWild8 I do have a bracelet but most people don't have a clue what it's saying, and I get all the wrong treatment on the road side. This is why I've done this youtube pae to get the word out there. That's for your coment thogh mate, and takeing the time.

Dee.

[SilverWolf810]

@daud8472 Hi, i'm a student paramedic with south western ambulance service, I came across a girl last night on my way home who had fallen and hit her head due to narcolepsy. What you were saying in the video about painful stimuli by the ambulance service to try and wake Dee is standard practice. I haven't been taught about narcolepsy before, I know what it is, but treatment wise this video has been very educational, thank you.

[Punkylolita]

:( Bless you and the lady who takes care of you. Need more people like her in the world.

[UltimateUlrich]

Bless you Karen for being such a loving person, and I hope that he will live a good long life under your watchful eyes

[PublicIrony]

karen's hot

[jstrings00]

I know you don't need my pity, nor do you probably want it but i feel sorry for you man. but it's good that you don't let it depress you! most ppl would. why live depressed? PROPS!

[jstrings00]

I know you don't need my pity, nor do you probably want it but i feel sorry for you man. but it's good that you don't let it depress you! most ppl would. why live depressed? PROPS!

[jstrings00]

I know you don't need or want my pity, but i feel sorry for you man. but it's good that you are staying in there so strong. most ppl would be depressed about it. what kind of life is that? PROPS!

[2Perky]

Has anyone ever told you that you look a bit like the character John Locke, from Lost? :-)

Thanks for posting this. I am sorry that you've had to deal with such a trying disorder, but your story is very inspiring.

Have you dealt with this all of your life?

[Caligula138]

damn! that sucks....

[hkanderson1]

I am a mother of soon to be 8 little ones 9 and under and have been suffering with narcolepsy since I was about 13 years old but did not get diagnosed until about a year ago. thank god for that. life is a lot better now and i can actually be a mother to my little ones. you are awesome thanks for sharing your story

[alohacaitlin]

I've just been signed off work because of cataplexy. it happens only when i laugh. its only started in the last 2 weeks, but i hate it it's awful.

[SilverSunshine]

she cant remember what she was trying to say. and sometimes she actually has dreams (some scary) in these brief seconds of falling asleep im worried because she' s hit her head before on the cement floor.

[SilverSunshine]

my friend randomly falls asleep and starts snoring in the middle of saying something on the phone at night usually, i have no idea if her eyes are still open or not, then she denies that she fell asleep...does she have narcolepsy or cataplexy? or is she just super tired. sometimes her speech becomes slurred and

[uscars01]

HI , i'm french

i'm 23 years old

i had nacolepsy end cataplexy

its really hard all the days

[zoen23]

I'm 19 years old and I was just diagnosed with mild narcolepsy. I really hope I never have to cope with cataplexy. You've got such a good attitude about everything, I commend you for that! :)

[daud8472]

Sorry, somebody just asked me about smells making me have Caraplexy. The answer is no not as a rule. Sorry for removing your post, I didn't mean too..

[frankensteinmoneymac]

@daud8472 Hello, I can certainly relate to whole 'being awake' part. I have Narcolepsy/Cataplexy and the scariest part is falling like a rag doll, but not being able to stop yourself. I am lucky,mine is not triggered by emotions, such as yours...but I have suffered some bad injuries. About 5 years ago I fell and snapped my shin bone....it came through my skin & everything! Very horrible experience. I still have a Titanium rod in it today...Nice that U have a good woman lookin out for ya though!

[7DrU7]

Shouldnt there be, or you have, some kind of tag or necklace that indicates this? !

Hang in there man!!

[zizwop]

I have narcolepsy-think I got it after suffering from a major concussion when I was only 6. Cataplexy can be very frustrating. Lately episodes only occur several times a month. It used to be worse, and currently I am not on any medication. I don't know why my symptoms have decreased without any medication at all, but they have. I stopped taking meds when I lost my job and health benefits. I was taking Xyrem.

[SimonHPI]

Hey anybody who would like to help me get a diagnosis? I have big problem, I can't read a book so I dropped out of engineering school and nowadays I literally fall asleep driving, standing, talking... I'm uninsured so I can't afford sleep studies etc is there help out there??? Thx

[lilbeatch]

ah nice to see someone who knows what theyre talking about for a change! most people seem to think cataplexy IS narcolepsy and it drives me mad! i was trying to explain to people at work that its called cataplexy and is just a symptom of narcolepsy but no one believed me!

same when i tried to explain that schizophrenics dont have split personalities, no one listens ot me =(

lol

[alaskafreeze]

i am dave, i have narcolepsy , the doctors have given me a drug called vivactil. man does it take care of the cataplexy. it wa getting worse but they added alil more and it does its job with me. i know what youi feel. good luck

[crazeewhitedude]

Yeah vivactil works, but dont miss a day, you will have with draws from the drug!

[410laura]

Hey im 18 and have just found out that i have cataplxy i have lived with it for years now but i have only just been diagnosed! it scares me as to what the future holds but it is really helpful hearing others stories! thankyou and i hope you are well.

[Psykoboy15]

That took a lot of courage to post!!!

God bless both of you. Remember Revelations 21:4 And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."

Lots of love!

[cartercool90]

amen!

[0hBabiix0x]

godbless. <3

[designine]

Thanks for sharing! Im a person with the same disorder and know what its like. Im not afraid of dying, i think the worst thing is the social handicap it gives me. Cant count the number of times ive been thrown out of clubs just because they think im drunk beyond.

[btrueeth]

Shit. If the medical guys do those things, then the medical books need to be revised and teachers need to be sensitized about this things so they will treat students with these problems better. I am really really worried about such medical condtions that we don't understand or have no clue about that science is just discovering and the many that have not been "discovered". We have so many things we have to restructure to suit the needs of such kind of people.

[daud8472]

Please do not swear in your comments...

[simonnicaa]

thanks God I am healthy, you deserve all my respects, it is not easy to talk about this illness when most people don't even know this exists. Hope you'll ok. Take care :)

[daud8472]

Thanks Simonnicaa

[SANDMANCASTHISSPELL]

Get a whelchair and strop yourself in by the chest. Dont get why dont u use one

[oTRIGGA]

Respect and everything man, but i laughed so loud at the last bit, I dont want to sound mean or anything. I really do feel for you man, and all the best of luck.

[1Cocknose1]

This must be awful

[mysweetrosaleen]

It IS very hard to live with this illness. My cataplexy is not as pronounced as it has been in the past. My husband and my teenage boys can tell when I'm starting to 'lose it', they catch me before I can fall or hold my head up so I won't hurt my neck. My fear is one day my head will fall back when no one is around, and I won't be able to breathe. Good luck to you, and thank you for posting this. It's such a misunderstood disorder, even by many doctors, as I've discovered.

[daud8472]

I have your woerries also, but try not to think about them as it's not been something that has killed me yet anyways. All the best to you too.

[SeekingSqueak]

Wear a medic alert braclet or similar that states CATAPLEXY -

[mayat730]

I was recently diagnoist with narcolepsy a few months back i dont have cateplexy nor do i fall asleep suddenly i just can sleep for long hours with out my medication. Have you asked your doctor about a medication named Xyrem its supposed to help with and prevent cateplexy I am on that medication so it will prevent me from getting it later on since I am only 18. But i wonder if Xyrem would help you. Take care.

[klyfly1]

Son 24 has unDx cataplexy 9+ years. Unable to leave the house unless someone is with him.Its been a while how are you doing.

[missann208]

I don't know if people have said this, but in America, we have MEDIC ALERT bracelets for people who have important medical issues. The info is on the bracelet, so that medical responders/police know what to do. If you have something like this in your country, you should get one, or maybe you could give your info and pic to police stations/hospitals etc. so they know who you are and stop torturing you.

[trix1210]

Hi - I am an A&E nurse. Ambulance crews and medical staff may inflict slight slight pain in someone who is not alert or responding to voice. This is for the glasgow coma scoring system we use. I recommend you wear a medi-alert SOS bracelet or necklace with your condition written on it. Paramedics and nurses in A&E look for these clues when we care for you. Doing this will alert us to what the problem is and then we can ensure we tailor our care to your medical condition. All the best mate.

[daud8472]

Thanks for you comment. I used to wear one around my neck but the times I needed help, the doctors and nurses didn't know what narcolepsy was, When I ended up in hospital once my carer came in and was trying to explain that I had narcolepsy, and was in a cataplectic attack, but nobody seemed to understand what she was saying. When I did wake up they really seemed shocked and suprized. there are still a lot of people that have never hurd of it.

[SGUSOMUSA]

Thank you for posting this. I am a third year medical student learning about sleep disorders. It is such a help to be able to see an actual case of narcolepsy. Best of luck to you and the man in the video. Has he been receiving stimulant therapy and is it helpful? Also, does he have hypnogogic or hypnopompic hallucinations?

[barbaric37]

that sucks. i feel bad for him

[potteredwards]

It must be very hard to live with this illness. I have epilepsy, and I experience grand mal seizures. To lose control of my body and mind is terrifying. You will be in my thoughts. Peace & Love

[dalancho354]

poor guy

[Tragedienne3]

You're great people. Stay strong!

[richardkuk]

Karen should get a best human award.

[h0bbitatheart]

I'm researching narcolepsy for a story I'm writing and I feel this video is going to be helpful, so thanks for that. Good luck to you, and I'm glad you have someone to be there for you and help you out.

[tuppnee]

Dee I would so like to get in contact with you, as I've been suffering from Narcolepsy since 1988, and have never had the chance of meeting another Narcoleptic.

[polypeptide4]

very insightful thanks

[greytiger]

thats a great woman by the way!

[Vintage772]

LOL im sorry but the last bit made me laugh

[greytiger]

yeah the video should end with a different shot (you staring into camera or something)... cuz i laughed too and I was really interested & moved by the video. but then at the end i laughed.

[CosmicVisitor]

That's awful. Surely there should be a way to identify cataplexy sufferers like how diabetics wear the silver bracelet. Poor guy.

[vanuvirus]

thats actually a really great idea. i have narcolepsy but i havent devoloped cataplexy (and i pray i never do) but thats difinitely something to look into for anyone suffering from cataplexy

[sergey444]

i think that's why he had that Necklace with a silver token thing, probly said what he is suffering from.

[I4mPj4Life]

At first, I was going to comment this badly, but I watched it until the end and realized 'Gee, this is really sad, I wonder How I would feel If I had this disorder.' This was really informational and will help me out if I ever meet somebody with either of these disorders. Thank you.

[sophieb800]

i saw a video about you today at school in my psychology class :] we didn't watch it all though i found very interesting.

[kizzy5772]

Daud - This is such an excellent expalanation of cataplexy. It is so difficult for people to understand that we are conscious whilst in an attack, and so attempting to bring us round is pointless and counterproductive. You give a great account of how people's well-meant actions can actually serve to prolong the attack. Thanks!

[Mscanman]

That is really and truly very sad. I felt quite badly for anyone suffering from narcolepsy/catalepsy...it must be so very to live a normal life with this disorder.

[viacarlton]

Horrible how you're treated in the streets.

[geordo2001]

Isn't there some way to train dogs to deal with this condition for safety and independance?

[bidlop666]

i've had both narco/cata for 8/9 yrs now (i'm 20) and b4 i was diagnosed it was bloody horrible; i'd feel myself goin down, then the whole family just stand around me, all the time whilst i'm having a panic attack, cataplexy and trying to tell them to just leave me and i'll be fine in a few mins. most annoying when people who don't know u think ur drunk when cataplex happens - fortunately since i went on meds i at least don't hit the floor anymore. sympathies to a fellow sufferer

[winston2412]

I know how you feel,I've had it for three years now,although over the past 18 months my life has improved no end.this is down to 6dexatrine,2venlaphaxine during the day and a miracle liquid medication called Xyrem.

But I must add,you take it during the night and I have fallen several times between dosages(as you take 2dgs a night)resulting in cuts rather than grazes/bruises,be warned!.

Go see ya doctor and ask them to inquire for,worth a try,good luck..

[20nuttynatz09]

aww blees him

i no how he feels cos i suffer from the same ilnees

i am natalie age 15yrs old and i gt diagnes with narcolepsy cataplexy 3 yrs ago

[20nuttynatz09]

aww bless him i no how he feels beaucs i have the same condtion

i am natalie aged 15 yrs old and i gt diagnosed with narcolepsy and cataplexy 3 yrs ago

[CGreenbush]

Any experience with acupuncture? I feel for brother. I was diagnosed at 19 but probably had attacks back to 10 or so. F ing religious Dad dismissed it, even though his own brother had it. Thank god(or whom ever) that I didn't kill anyone or myself driving my car. I didn't know that cheese was a stimulant. WOW. I love cheese. I will have to cut it out close to bedtime. Carbs knock me out in the daytime. Protein seems better for awakeness.

[CGreenbush]

Daud- How does it work in the UK with medical coverage? I'm in the US. I feel for all the people that have Narcolepsy and/or Cataplexy and because their country's lack of social medicine. What have you found about high fat diets? I know that there has been great studies about Epilepsy and high fat diets. Something about the fat is a insulators for neurotransmitters. I have Narco but near nil Cataplx but I do feel it in my knees or neck when telling a real funny joke. I'm on 20mg SR Ritalin

[HugeDickNick]

how do you know if you have cataplexy and Narcolepsy? I feel tired during the day but ive never fallen asleep or passed out. I do have GAD anixety disorder.

[RockingInMyBlood]

I don't suffer, but I think when pub drunks do that, to you is unfair and ridiculous! Sorry to hear about this, I was intruged by a Channel 4 program when I came to find this video, I first thought it was weird and humorous in a light way, but after watching you sir, I have actually changed my opinion on how I reacted, and I am sorry for that.

[krazylynch]

man im sorry life must be such a struggle

[xste72]

i use Spirulina to help me .

[daud8472]

A cyanobacterium of the genus Spirulina, valued as a food or nutritional supplement for its high protein content. How is this helping you?

[apaulinaria33]

Maybe it's the protein that does help it. It could be it's the absence/limitation of the myelin sheath that isn't letting the brain fire signals correctly. And the myelin sheath is made up of 80% lipids and 20% protein. It could be that the Spirulina is one protein that is more easily digestible than say cooked animal protein.

[natgeo72]

Sir, you should get a medical ID bracelet so the medics won't do the painful things to rouse you. :( Please do take care.

[Sinan97082]

Ouh, once i felt in front of a cable car after i had an cataplexy-attack...nobody helped me! These years were the hardest of my life, nobody understood me or listened to me. Now i only have sleeping attacks, once or twice a day...but my last kataplexy-attack was one year ago THANK GOD. I stopped taking the medicine, i started playing soccer again and now i take care on my food. The most horrobile thing are my lucid dreams and hallizunations at night. :D But i ascertained, that this is handleable

[ChrisRedmanDotCom]

A terrible affliction but glad to see (and read) that people are managing and living full lives :)

[djoli13]

OMG, this seems so dangerous...

[glynnyboy4]

I suffer from both but not to the extreme you do. I have only fallen down a couple of times to press. It is a big strain on my marriage at the moment as my wife just can't understand or maybe fully accept that i am not putting it on. Your clip is good to help people understand the strains, thankyou.

[natalie21178]

I'm glad you have Karen, she is a good friend

[daud8472]

Life isn't so bad when the people around you except you have this condition, but it can be hell to live with if all people think is your putting it on to get away with having to do something.

[Vakrian]

as brutal as this might sound i thurt it was kinda fun...but now i see its a big problem and i feel your pain i cant imagen keeping a life togeather thinking about you can fall to the floor at eny moment and see and hear what people are doing but cant say enything to them...

[CSKYSK]

I need a Karen. :)

My cataplexy usually affects just a part of my body. I fight it like mad. It burns inside my head. I usually don't go down, but I do struggle a great deal to remain standing.

People usually think I'm on drugs. :(

[itayshimonov]

it's hard(!) but try not to struggle.

[meho41]

i also have narcolepsy and a little Cataplexy, doesnt happen often but in school sometimes i sit up with my arms on my desk and i cant move.

and i often slur my words or type wrong cause im just always tired.

[vsimoul]

damn this is a bad situation, but there must be something that could help.

like maybe a device that will explain your condition when you fall in crowded places, or a hat-looking helmet that would prevent head injuries

[oArtVandelayo]

Narcolepsy. What a big pain in the arse. That should be made into one of those motivational posters.

[fieryfrets2000]

i have that i fall asleep in roller coasters

[kittycakes2]

By the way you are very lucky to have Karen, as you have stated. I have to commend people like Karen who are there to help us. I have, (I like to refer to him as my caretaker, because he pretty much goes everywhere with me and takes care of me and keeps people from doing things like you've said,in public places with the smelling salts),Joe. My gaurdian angel really. Bless you Karen.

[CrimsonRosePetal]

Have you ever tried Prozac for your cataplexy? Someone I know takes it and they have very few if any attacks anymore. In the US GHB/Xyrem (same thing) is very expensive! Take care!

[daud8472]

I take Provigil 200mg twice a day for my daytime sleepiness and Paroxetine 30mg twice a day for my cataplexy. I find they are working very well compared to what I was like without anything before.

[kittycakes2]

what do you use to control your daytime sleepiness? I have narcolepsy and for years have been told I was faking the symptoms. hated it when I'd be talking to my Momand go into one of these trying to continue to talk, she'd say "stop it, I wish you wouldn't talk that way, what's wrong with you" The Dr's told her I was faking my symptoms. I take dexedrine and trimiprimine under a sleep specialists care. Careful of accidental overdose, its easy, unintentional and ugly to have to have to reduce

[meho41]

same here mate, i feel your pain.

[fibroking]

i can really empathise with what you must be suffzzzzzzzzzzzzz..

[daud8472]

Ha ha lol ZZZzzzzz

[kittycakes2]

Please arrange to see a sleep specialist asap. I missed some of the best years of my life because of going untreated properly don't let the same happen to you

[daud8472]

Thanks for that Kittycakes2 good advice.

[daud8472]

Yes. Ask your doctor about getting on Provigil to help you keep awake in the day. It's an expensive drug and not all areas in the UK will provide it to those that need it. But it's really good at keeping you awake and to concentrate.

[ashtravel]

Hello daud, this is a very informative video and thanks for posting it. I have been living with narcolepsy and catplexy since adolecence, I'm now in my forties. I don't suffer to the same degree as you do. I can live a relatively normal life. There must be quite a varying degree to the intesity of these deseases. I found cutting out dairy products helped a bit. Too much cheese puts me in a right spin. The info about GBH is very interesting though. Thanks.

[daud8472]

Thanks for writing in, and yes cheese is a stimulant and would prevent a narcoleptic from sleeping deeply, which as you know I'm sure, narcolepsy does anyway. So yeah cheese isn't a good idea just a coffee before bed and so on. Best of luck to you with your sleeping.

[whysoblind]

aw poor thing. im glad you have someone with you.

[daud8472]

Thank you for your thoughts...

[Bo6us]

they should have some kind of wrist band or necklace to show officials that u have that disorder so u arent given off as some drunk or anything like that

[daud8472]

I do have something around my neck as you can see in some of my videos. The problem is that not many people know what Narcolepsy is and so it's not much help to me, even when I've ended up in hospitals!

[Conny2405]

you have done a good job with this video. u gave a very good describtion about cataplexy which is hard to understand for people who don 't know this desease. a few years ago I did a short documentary about narcolepsy with the german channel rtl...but it wasn't very good...they only wanted to see me fall...

take care...

[daud8472]

Thank you for your thoughts.

[KarlFromEstonia]

Hey dude im afraid that i have narcolepsy too because i have sometimes sleep paralysis and i read from somewhere that sleep paralysis is a sign of narcolepsy... is this true

[daud8472]

Yes this is true but narcolepsy isn't the only reason you could have sleep paralysis. See your sleep doctor for a correct diagnosis.

[PetesBloodyHand]

I saw a program on The Learning Channel last night called My Shocking Story: I Woke Up In A Morgue. Its was all about this horrible condition. Is this condition most common in English people? Every person i've seen with this condition have been English.

[daud8472]

No not only English people get it. People all over the world have narcolepsy.

[radrat666]

Yes its true, my father has it.... And I have watched him fall down a set if stairs when I was younger.... And on everything really. I know how you must feel, and I hope you keep going. :D

[KarlFromEstonia]

Dude can you tell me do you have sleep paralysis too because im afraid that i might get Narcolepsy too because i read from somewhere that sleep paralysis is a sign of Narcolepsy.

[daud8472]

Sleep paralysis can be something that people have for other reasons other than narcolepsy. If you are having this problem you really need to ask your doctor to send you to a sleep clinic for tests. It's the only real way to find out why.

[darthuv]

daud8472, thank you so much for posting this. I was diagnosed about 2 years ago but have been having symptoms since my teens. I know what you mean about smelling salts, I hate them, they send me into convulsions. The annoying thing was that when I was given the salts by an ER doctor, it was right there on my medical chart that I have narcolepsy with cataplexy.

[Mrgyn]

Hey, are you the man in this video? If so, I never realised it was like sleep paralysis when you have a fit. How you can look around and still sense things but you can't move, it's such a terrifying feeling... Am I anywhere near the head of the nail here?

[daud8472]

Hey. Yes it is very like that I guess at times. Only I don't always have REM dreaming if the cataplexy attack is a short one, but if I'm laughing too much then yes.

[surferjimbob]

I find things like this relly interesting

I do not understand it at all but i find it fascinating

Do you ever need to sleep cause your doing it so much in the day?

[daud8472]

Hi. Yeah I go to bed to sleep, but I wake up a lot and get up a lot too. I seems to dream a lot when I go to bed and when I wake up Im still dreaming, sometimes for most of the day.

[kittycakes2]

Do you see a specialist?? There are medications that can help with daytime sleepiness, and to help reduce REM sleep. It's not perfect but it does help. You are aware that you dream most of the time because you are skipping the other stages of sleep?

[daud8472]

I first showed signs of Narcolepsy when I was only 7 years old. Now at 45 I've given up thinking doctors can help me any more than they have. I do take meds for my condition and they work well but are not a cure. Xyrem is something a number of people have written to me about and recommend but it's not something I take myself.

[narcoleptus]

Hi, It took me 35yrs to get diagnosed properly, even tho my father was narcoleptic. You have a video of my sister by jennysburg in your favourites. From my early 20's I did 2 to 3hrs of hatha yoga/meditation/deep breathing everyday, for many years.

The more 'unsettled' I feel, the more the symptoms play up.

Not on any meds, tho the neurologist wants me to take GBH and Provigil

Very good video!

[newbienurse08]

DO NOT HESITATE on the GHB (brand name=Xyrem)!!! It is an unbelievable Godsend. My life before and after treatment with Xyremn are utterly incomparable. I weep with gratitude that it only took 15 years (at age 27) for me to finally get diagnosed and to gain the ability to function in my daily life without constant, utter agony of torturous EDS. Good luck.

[kittycakes2]

I have narcolepsy and am taking dexedrine and trimiprimine, but am not happy with the results, they help but not that much. is GHB a medication and what does it do?

[daud8472]

GHB also known as Xyrem puts one into a very deep sleep used at bed time. As I understand it; it helps people with Cataplexy, and in some people stops them having cataplexy altogether.

[daud8472]

I'm so please for you. I've not had anybody tell me yet that Xyrem didn't do him or her a lot of good. Do you know if Xyrem is expensive?

[hummer0328]

Xyrem is very expensive (at least in the US). Luckily, my insurance has $15 copays for medications. Otherwise it would cost me $1000 US every month. It really does help me, but really bad side effects keep popping up: elevated HR&BP, anxiety, depression, RLS, confusion. When I was taking it at higher doses it cut the cataplexy in 1/2 and I finally knew what it was like not to be tired.

[daud8472]

Thanks for your comments.

[geofftsjy]

i was an undiagnosed narcoleptic for 10 years starting from when I was a freshman. I finally got diagnosed so at least stuff makes sense now. I don't have much cataplexy at all. Thank you for the informative video.

[daud8472]

Thanks for writing in Geoffsjy, I hope you are doing ok.

[daud8472]

Thank you Parallax79, that is my hope.

[daud8472]

It's amazing how long it takes some people to get a diagnosis. I had my first catapletic attack at 7 years old, they really become a problem in my early 20's. I was 36 before I see a video about it and took it to my doctor. It's only by people getting this information out in the public that more doctors are recognising the symptoms. I'm sorry it was probably hell and victimisation before you got help. Can I ask, what meds are you on if any?

Thanks for writing something up.

Dee

[Parallax79]

I'm sorry to see how much you have to suffer with this disorder. I have narcolepsy as well and understand some of the difficulties you face on a daily basis.

Hopefully, spreading awareness of this disorder will help people to better understand it and for those who are undiagnosed narcoleptics it may help them to recognize thier symptoms and seek appropriate treatments.