the people who think one should get over it have not walked in your shoes--as for someone saying they seen people with this problems the odds of this being true are slim ---as for the post with fake nar /cats who are looking for look this is funny and the ones who say I know all about it so get over it are fakes
you chose for it to overcome your life. i havent let it one bit, and im 14. when i see people with the same condition as me so miserable it makes me think how someone could make this more of a problem? Because if you have the right meds, most of its in your mind and you have to power to overrule what your brain is making your body do. maybe you should open your eyes to different possibiltys for your life instead of sitting around making videos of your depressing life.i think you shud get help.
I am not choosing to just sit around and suffer... I try to have a life the best I can, but is difficult to get around when you combine N with severe C, SP, HH, Fibromyalgia, and RA and cannot drive. I am helping raise awareness for N while Vlogging what my life is like with said disorders. N comes in many different severities, and is not the same for all of us. I applaud you for your positive outlook, but do not chastize people for not being chirpy all the time.
As you get older, if your Narcolepsy has not yet onset completely... as it does for most, you will see what I mean. Chronic Depression is common place with any chronic disorder. This video was made primarity as an Education Video. I am not sure how you onset, or how young you were initially, but imagine if you had no idea what was wrong with you, and you did not know what cataplexy was? It makes feeling any emotion an injury most sure of having.
I wish you the best, but let's be united in attempt to Open the Public's Eyes to Narcolepsy so that those who onset with N and have NO idea what is going on, can atleast get some idea by searching videos on youtube or other source. Best, Rachel
I'm sorry to hear your disorder, it hurts me to see others suffering. But isn't there some way to lessen the effects of narcolepsy? Like using a steroid or exercising? There has to be something chemical going on.
Thank you! When I can get my Rx's, which is often difficult via Individual Rx assistance Programs, as I am uninsured. So during the many times I am forced to forgo Xyrem, Effexor XR, Xyrem, etc, It becomes often dangerous just to live in my apt and definitely scary to do anything in public like grocery shopping, as my cataplexy is severe. Narcolepsy IS chemical... we lack Hipocretin producing Neurons in the Brain. These cells have been theoretically destroyed by the immune system.
Hi, I am 56yrs old now and still have narcolepsy. I was about 10/11 yrs old when looking back it must have been when even at a young age i knew something was'nt right. In my day all you got was a clip round the ear telling you that you needed to get to bed earlier. Its like everything has got an abbreviation these days. I'm glad that there is more awareness of the problem today, but there were lots of people that were misunderstood in my day. Good luck to all who has this condition.
I am sorry you are going through this. Change your lifestyle if you can. I mean this in a good way. you have to try and try. I wish you the ultimate recovery. Dont give up and stasy around people that love you and care about you.
It brings me pain seeing others suffering, usually in person, or real life, but you, although it's just through youtube, the internet, & can feel your suffering and sorrow! It hurts me to so others like this...
I mean I guess it's because I suffer from something too, but something different though. But um, I just wish you good luck!
& I hope you will find a way in life!
I mean, I know you will, just hang in there ! Im sorry I can't do much to help though. =/
Same here. Brings me ambition too though. The way I see it for every problem there is a solution. Lifes hell before we find these solutions but when we find the solutions the hell we went through seems well worth it cuz of what we learned from it. The solutions are there its just a matter of finding them.
It makes me sad, what your going through, how alone you are, how much your suffering, and that not many people out there are willing to help you at all! Despite how much you need the help, and company! =[
I swear, if I were older, and knew you or something, I'd be wiling to help you out big time! I don't have narcolepsy, but I do get SP from time to time. And Im not like the others, who would abandon you. I swear, I love making people happy, and helping them!
(3) So you have to open your own eyes and see how the world works - adjust to it, and love it. Because even that some have it worse than others, the world is still a world of opportunities to achieve great goals. But without trying, nothing will happen.
You must stop caring for what other people say, and you have to stop feeling embarrassed about who you are.
2. Adjust to the fact that you have a life-long disorder and do the best out of it! How about working with people with narcolepsy/cataplexy? Maybe as a therapist? Or does the fact that you fall asleep while studying keep you from trying? Because my experience is that without trying for the best, the disorders will crush you from inside.
Nope, You're the one who has to open your eyes. 1. It is not possible to make people understand this disorder. Try to look through their eyes; They see us fall asleep without any knowledge about the disorder. It looks weird and funny, and the best medicine to the embarrassment is to laugh with them, even thought it's hard. It's impossible to make everyone understand, and it's impossible to explain it - so adjust to other peoples reactions and laugh with them!
Have you tried a company to help get you disability.. I have fibro. and I hired a company to help me get it and it took 6 months and people say that is a short time but we got evicted from our apt. because of it.. if you want more info comment me I will try to help in any way I could.. good luck
i feel really bad for you and hope that your life gets better, i think i understand how you feel. i haven't been diagnosed with narcolepsy but i've researched it and it sound exactly like me.
the reason i haven't ever found out for sure is purely for the fact that my family ould be less than supportive and tell me im lying so i just deal with it. (if that's possible)
I hear ya girl. I have it too, but I am medicated..life is much better on meds. I'd be in the same place if not for the meds. I still don't have any where near a perfect life..but I am working on it with the right doctors and medication..you sound like you do not take meds...it is horrible and life shattering...I am happy to pass on what has worked for me if you are interested.
I don't think you understand what she is going through though!
For her, it's more then SP, its something more serious, more severe, something that controls her throughout her day and night, each & everyday of her life...
Just normal SP, is nothing compared to this...
You usually just get it every other time, & its not as frightening or severe, doesn't affect your life as much!
To her it feels that way, like if I demon controlled her life, becuase thats how much seh suffers & how bad it is.
Yeah your right. I've seen it for myself. Sleep paralysis you just get bombarded by crazy sensations its only when you start thinking about entities and demons that you hallucinate them. I never had any of these "demons" or "entities" messing with me until I read about them. Its like dreams if your thinking about something while your dreaming you'll dream about it.
@DrFishNips no i do not agree with you. I don't want to be attacked by any demon but the hallucinations do come to me during SP. I try to control them by taking long breaths and convincing myself through will power. It is veryy scary, but it can be over come. I think it takes years and most likely a lack of melatonin and not eating right. So I took synthetic melatonin but it will take a while.
Jay, you make me wonder why the fortune of good health is sometimes squandered on incompassionate scabs like you. She was using a METAPHOR you yogurt. And if you have the super-human courage to not fear loosing control of your own mind, then apparently it's because you don't have one to loose.
I am not able to drive, and cannot work a normal job. I am Your Sleepy AVON Lady, and that definitely helps. It is a tough life, and I hope to raise awareness though my videos.
I used to be that way, I could not wake up, i had sleep paralysis, I used to just pass out for no reason. I was suffering sever sleep deprivation I did not sleep for 6 months then sudenly i couldnt wake up. Its horrible. Ill be praying for you. May THE MOST HIGH BLESS and keep you dear.
I am only suffer from sleeping paralysis with my eyes open
If I use cannabis my dreams will go away and i will sleep much better , and not exp a paralysis can not move or not breath and seeing peoples 2 minupto5.
(I am not crazy just a normal man with a good job)
But your case seems like you got this thing permanent and can not controll sleeping or awakeness. I have no idea tho I am not experience it at this level. But i really whish you good luck and are hoping you will findsomewaytogetbetter!
the fact that some of you sit there and find her cry for help funny makes me absolutely sick. your lack of moral righteousness and integrity is shameful to not only yourself, but to our society. shame on every single one of you who chuckled and grinned the slightest. i wish you the best of luck, discuscatcher, and i will pray for cure.
there ARE medicines... pff dont make people feel srry for you, is what you got... learn to live with it instead of pitting your self...! there are people with WORST things... suicide? come on!
I am on medications. This is about awareness, not mere pitty. Narcolespy/cataplexy is just one of several chronic debilitating conditions of which I am afflicted: Fibromyalgia, RA, and Chronic Lyme's Disease.
I suffer under Narcolepsy too, i suggest you to visit the HEPHATA sleep labority. In my nightmare, i see the same things like the girl in this movie "the story of emily rose"! And in my case, I had my LAST cataplexy-attack one year ago!!! How is that possible? Organize your life, i don't take medicine..this stuff isn't good for your state of health. Don't stay at home, do sport! Take care on what you eat and DONT THINK TOO MUCH ABOUT NARCOLEPSY...! Good Luck!
I think I have Narcolepsy, when I don't take medication for AD/HD and on the information leaflet for the proper maintainence of that disorder is a segment for the use of Methylphenidate to alleviate Narcolepsy. I have no health problems as a result but have major problems if I don't take the medication. Suggesting to people they don't take proper medications is grossly ireesponsible and I hope the lady who made the video doesn't listen to you. Proper medications are GOOD.
I can't stand ignorant people. I have N- no cataplexy or paralysis. This girl has it bad and if you knew what it was like, you would know that you just can't make yourself better. There are some meds out that can help decrease symptoms- best advice: find a great neurologist (I found one in the Bronx, NY)who can also help witjh Disability.
My niece has narcolepsy w/cataplexy. She has lucid dreams, and sleep paralysis. Like you she has been robbed of life. Her's is post traumatic. I can only feel for you since you probably have had it life long. She feels the same way you do. I began to show her your video and I could see she needed me to stop as she would have an attack. I agree. PEOPLE OPEN YOUR EYES TO NARCOLEPSY!
alright so i left a comment a while ago and got like 3 thumbs down, which i deserved. since then i did look up the hallucinations(explains alot personally) and i apologize. but thanks and keep fighting, and ur right nobody really gives a damn, especially my math teacher.
Thanks. Several folks do care, but the ones who do not even try to understand can ruin our lives if we let them. There is so much misinformation out there about Narcolepsy.... Oh.... Like Duce Bigalo or Rat Race, right... Uh, no, not really.... Narcolepsy is alot more complicated than Media Protrayal.
cherryeater your stupid and herryorch i would give up a kidney to be cured of narcolepsy. Your mom probably live a normal life until she had kidney trouble which she problably caused from having an unhealthy lifestyle. You will never understand the effects of never getting restful sleep has on your body.so basically think before you speak loser.
herryorch i would give up a kidney if it would cure my narcolepsy. You mom probably live a pretty normal life till she had kidney trouble which she probably brought upon herself. You will never know the effect not ever getting restful sleep has on your body. why don't you try staying up for 2/3 day and tell me how much willpower you have. so basically think before you speak idiot
Good for you! I am proud of you for posting this video. I am also glad that you have offered replies to those who have questioned or suggested things. I think you are doing incredible things. As a fellow narcoleptic I know that we need to do our best to accept what the condition allows us. The fact that you sell Avon and do whatever you can to help yourself and to be with your husband - that is AMAZING! You deserve recognition just for that. Hang in there.
The US does not recognize Narcolepsy as more than just a joke. My Narcolepsy is nowhere near as bad as Rachel's but I can tell you that when she says there is no escape she is not lying.
An expert from Stanford told me that Narcolepsy does not endanger your health. Cataplexy=Paralysis, Sleep=Sleep, and so on. Unfortunatly, the fact that you cannot do minor duties in any job because you WILL fall asleep. ...Cont'd on next comment...
Get over yourself anyone can overcome anything if they want to. You don't depend on anyone but yourself at the end, my mom was about to die needing a kidney transplant and she got it just 3 months after she was given 3 months to live. So don't post this kind of crap, its pitiful!!! You are just one more in the group but you can still make a change for yourself, so look for it don't expect pity from others.
Thank you for this video. I too have narcolepsy and it is such a struggle. Sometimes I wish that it was more visible to see what it does to us because then I feel people would take us more seriously and not belittle what it is.
I dont want to come across as a heartless or ignorant but at the end of the day I, nor anyone I know makes fun of people with disorders. Im Aussie and im not really sure what you mean by open my eyes. People in AUS as far as im aware who have disorders like yours receive payments from the government for carers fee pension, rent assistance, standard disability pension and on top of that get rebates and tax cuts. Sounds like your having a rough trott because of your government.
Your Government is better than the US at helping the disabled. In the states, at least, Narcolepsy in particular is the Joke of choice whenever instantaneous sleep occurs, though Narcolepsy is not really like the movies. We do feel the sleepiness coming on enough to lay down first. We don't fall into our soup, unless you tell us a really good joke and give us Cataplexy. I get absolutely Nothing from the US Governement, though Social Security has determined me too disable to work.
Though approved medically, I was 2 work credits short of getting SSDI, and SSI is based on cost of living rates from the 1970's! I get nothing, though I often go hungry and without prescriptions. We lost our home to Foreclosure. I am Your Sleepy AVON Lady, but only make $200 a month.
Hello discus.. by the way.I dont mean to sound like an expert but I'm just trying to help. Paul said that in his weakness or infirmities he was made strong, He found the Grace that he needed through Jesus because of the afflictions. It sounds paradoxical but you already new this and I know it helps when people remind us anyway. Amen? bye
okay 1, ur depressed. 2, i have never hallucinated or heard of someone hallucinating. 3, i can work and drive, its called medication. 4, whenever i have a desire to sleep, i get up and do something like go outside or jump roping. it really helps. and when it gets really bad, i go 2 sleep for 15 mins. no more no less. i get up and i feel fine.
I am on medication, the best, my case is severe. When I fight sleep attacks, I get cataplexy, esp. in my legs. Hypnogogic Hallucinations are one of the Four Major Symptoms of Narcolepsy... look it up. Just google Narcolepsy. Naps do help, I agree, but I am sleepy again quickly after that. You can only fight it so long, before it gets you in the end.
0smiley0,How old are you? It's sad when there are people like you who have no understanding or compassion for those who struggle in life. You obviously have NO CLUE what Narcolepsy is and the many side affects it has and how drastically it can affect someone's life, both physically and emotionally. I hope when you need some compassion or understanding; you are surrounded by people who are NOT LIKE YOU. My 6 year old has more compassion and understanding than you!
First off, you're obviously an old soul. No young soul is going to develop the problems you have. The key is, you have to take responsibility for this and find a way towards A.Money B. Healing. There are tons of great self help books with affirmations, and thought exercises that can help you. You really need to think outside the box with your situation. It's an opportunity for change and transformation.
Cry me a river... I know all about embarrassing disorders. I had my first seizure in front of my 7th grade science class, if anyone thinks their early teenage years were tough, try going through them completely alone because no one wants to talk to the kid who has spontaneous fits. And yeah, I know all about not being able to drive, I know I can't do whatever I want with my life. Do I bitch about it? Put "pity me" videos on youtube? You're making it worse for people like us.
This is an educational video about Narcolepsy. Epilepsy is a different neurological disorder, very dibilitating like Narcolepsy. Alot of times folks confuse Our different disorders, esp. an Epileptic Seizure with a Cataplectic Attack or Episode. I really feel for you, I know you, too have gone through alot of hurt and isolation. No need to be nasty, esp. to one who would have been your pal back in school-- I wasn't exactly the most popular cheerleader, plus I was very empathic and intelligent.
i am in sleep psychology and currently writing a review paper on narcolepsy. to the comments that pass judgement: you should read some academic articles and educate yourself. narcolepsy varies in severity. for many, it is literally impossible to keep a job or stay in school. the decline in quality of life is devastating. there is little social support. but i believe there is hope. this video broke my heart a bit. i really feel for you. this is where i'd give you a hug. have strength.
Thank you. You have empathy, a very valuable characteristic going into sleep psychology. We just lost our house, I also have untreated RA and FIbromyalgia, but I do have hope. This video I posted to EDUCATE the public. Thanks, I was going to become a psychologist, too, before my Narcolepsy got so severe.
I am saved already. Jesus is my Lord and Savior. Once Jesus was asked why God allowed people to have disabilities, and He replied, "To show My Love, that my love is ever-extending."
I too have N. I too am a born again Christian. I prayed and cried for years to the Lord until I finally understood that yes N is a horrible dibilitating disease but there are others out there who have things much worse than I do. The Lord has given me strength and much insight into myself. Even with this disorder I have to say I do feel that He has richly blessed me, surrounding me with love.
hey.. i am thinkig the same way you do! After a time of crying and cursing, i realized that god has given me strength... Now i can help others through their hard times!
Look, I also have narcolepsy and cataplexy and although I assume yours is much more severe than mine, I know that your definitely in the wrong state of mind.
Your condition wouldn't be better if people opened their minds and hearts. YOU need to open YOURS and take control of yourself. It's exhausting and difficult but you have to push yourself and not tolerate that your body controls you. I know that if you pushed yourself that extra mile (I know that's not easy) that you could take control :)
Mine is quite severe, also I have very untreated RA and Fibromyalgia, as well. The public DOES need to learn about what Narcolepsy really entails.... not the Duce Bigalo Stereotype. I push myself extremely hard, of course I wouldn't expect you to know that. I can't drive anymore or work a normal job.... but I am still the best Darn SLEEPY AVON LADY EVER!!!!
I am very sorry to hear about this terrible condition you suffer! I knew the term narcolepsy but didn't realise what a hellish life the sufferer has until I watched your video! I hope you can find a way of getting better!
Any person of any age, ethnic background or health can get Narcolpesy.
It is as random, and sometimes as debilitating, as Parkinson's Disease or Multiple Sclerosis or Alzheimer's. Most people who laugh at cataplexy or EDS would never laugh at the tremors of Parkinsons or visible symptoms of other diseases. Narcoleptics simply want the same basic dignity given to them.
With everything in life it's always easy to assume it's easy until it's in your life... "People who are depressed should just get over it" or "People with narcolepsy are just lazy" I guess my point is to not listen to people who make stupid comments on this because only truly ignorant people who haven't experienced a single hardship in their life make such uneducated remarks about the pain and troubles of others.
*continued* feel won't somehow force people to care, no matter how bad it is. In fact, as you've probably already seen, people are likely to make fun of you. I feel for you and your disorder, and that's why I'm posting this. If you want to get the word out, you have to present yourself as a person of strength and not as a victim. If you are unable to do this, find a support group for others with your condition and find someone who can In fact, just joining the support group would help a lot. :D
Narcolepsy is not something I find funny. I understand that it is a serious, debilitating disorder. However, I do believe that, in this video at least, you are greatly overplaying your hand. It's great that you're trying to educate people about your disease, but in this video you don't sound very influential. Truthfully, you sound sad, defeated, and weak. People who are drawn to such tactics will listen wholeheartedly, but what about the general public? Simply telling people about the pain you
i have Narcolepsy also and im no pussy by any means but and its a pretty fucked up thing to deal with...its like u have no control over ur body...o and when i do go to sleep i get trapped in horrible night terrors...
This is definitely not bitching, but rather a grassroots campain for educating those with out Narcolepsy, those who have yet to be dianosed and are freaking out because they fall when they laugh(cataplexy), and to provide a unified supportive front on behalf of my many fellow friends also living with Narcolepsy. I started on Myspace, and now it makes me smile whenever I can help someone else adjust to living with narcolepsy, a most debilitating disorder.
There are lots of people who do care and do not have narcolepsy. I am not "crippled". Though I suffer with Rheumatiod Arthritis-- totally different medical disease- I can still walk.
Cocaine is illegal. Adderal is used by many with Narcolepy and can be very effective. However, I have Mitral Valve Prolase Syndrome, a separate heart mumur, and thus, must take Provigil, which is much gentler to the heart.
Sorry you're going through this :( Did you know that there are theories that N is an autoimmune disorder? It definitely makes sense given your other diagnoses. Also, have you checked your insulin (not sugar) levels in your blood? N is linked with that, and a diabetes pill may help in that case... alternative therapies such as valerian and l-tyrosine? Have you ruled out a sleep apnea component to your N? Do you go to N forums online and chat with other people with N?
Maybe an online support group could help you and other people who suffer with this. Please keep in mind that where there's breath, there's hope. My prayers have reached you before this email has. God Bless You!
Race, disability, and gender are all factors in which people are judged by and discriminated agaist in modern society. Though you cannot see my Wheel Chair, the degree of Debilitation upon my life which Narcolepsy, Fibromyalgia, and Rheumatiod Arthritis have had upon my life remain profound and have crippled many aspects of my life. No longer able to drive or work a normal job, I find myself abandonded and neglected by our cold cruel society.
Hey girl..I feel ya..I dont know how I am able to travel and sing like I do..Provigil really helps but makes me cranky.. My heart is with you...Angela
Cherryeater, yeah it is funny to watch every now and then, but if you've never had anything to do with this weakness you really have no idea what the hell you're talking about. Actually, shut the hell up, it aint funny at all, shut up!!!!!!!!!
You can heal anything. I promise. I would love you to check out this video. Just type narcolepsy cataplexy healing into youtube. You can do it.. There is help...
Might be a dumb question but could narcolepsey or sudden passing out when frightened have a corelation between what some animals do such as possums when they are frightened almost like playing dead or passeing out from extreme mood changes. I have heard of this occuring in bi-polar disorder...
I am so sorry to hear this. I can't even imagine how difficult it must be for you. Although my life has been made a nightmare by refractory depression, you have really given me some insight into what pain and suffering really is. Just realize that there is always hope, no matter how remote it may seem. That's the only thing that keeps me going. One day, your life will become easier, with all the unforseen advances in medicine and technology. I wish you all the best.
I have cataplexy, EDS, hypnos, and paralysis. I'm young and my narcolepsy is just now peaking. A year ago I had a perfect GPA, an understanding girlfriend, and a clearly defined future. That is all gone, but I move on. I fall asleep lifting weights, visiting friends, and necking girls. I can't drive, so I walk. I get a ride and socialize. Stop with the "prison," "no escape," and "demon." Wipe that pouty shaggy dog look off of your face, and quit being so maudlin. YOU LACK HYPOCRETIN!!!
First off..Not everyone has the insurance to afford the meds,nor is she able to get Disability..It sounds like her degree of N is worse than yours.I have N,A Musician,A mother and A wife and let me tell you,It is Damn hard!Provigil,makes me hurt and my heart beats out of my fucking chest.Since you suffer from this too,you could be a Little more understanding..Not everyone is like you,Not everyone can go to school and get a 4.0 grade Average..She knows what she lacks asscrack!!
I was just diagnosed with narcolepsy/cataplexy and was wondering what blood type you have? I know that sounds weird but I'm trying to find out if blood type o negative has anything to do with this rare disease. Just looking for some answers. Thanks for your time & I hope things get better for you.
as far as i know i had genetic bloodtyping done with my narcolepsy something to do with Hla + or - but other than that i'm pretty aware that your bloodtype doesn't have anything to do with it
I know what you're going through, I have the full tetrad myself.I always thought I had insomnia,but when I turned 29 my knees would buckle and I'd get this pulling sensation in my face muscles when I laughed or angry. Within 3yrs I had nearly severed my arm falling through a storm window,busted my tooth out,dislocated my shoulder,sprains,stitches, from full body collapses. Of all the tortures this disease brings into your life, the worst is one at a time your friends stop coming around.
heh, i'm sorry, i guess only the biggest men and women can laugh at themselves..
it is funny, there is no denying. i met a narcoleptic and they kept falling asleep every other sentence, apparently it was an acute time for them, and they LAUGHED about it, rather than lecture me.
stop whining and telling everyone you're worse of than they are. i'd respect you more if you posted a clip show of funny times you fell asleep
God Bless you. And everyone with your condition. God will help you just pray and he'll be there for you. DOnt give up, I cant tell you how bad I feel for you I just know you'll be alright. Take GOd bless.
what i meant to say.. is get off your pedestal. it's a disorder, sad but true. my uncle has terminal cancer, and i'll be damned if he has EVER sat around telling people how worse off he is.
This is an awareness video for educational purposes. I am on no pedestal, I am in a deep valley screetching for air to breat trying to survive. You're 14, I was 19 when I onset with Fibromyalgia and 20 when Narcolepsy took charge. I have lost relatives to cancer, too, and it is very hard.
I think it's clear that the purpose of your video was to explain the seriousness of Narcolepsy. cherryeater987 is either a troll who was hoping to make you angry with that comment or they've watched too many bad comedies and got upset when their search for narcolepsy resulted in something serious.
Narcolepsy... A Funny Disorder That's No Laughing Matter by Margarite Utley, a friend of mine. You should read it sometime. No Dibilitating Disorder is a laughting matter.
I'm not the person who made the video but I do have Sleep Apnea, according to the people I sleep with, I wouldn't know for sure, I'm asleep at the time. I have Narcolepsy, I discovered, when I didn't experience an overpowering urge to sleep from time to time, after I started taking Methylphenidate, aka Ritalin. Try it, you may well discover a brand new miracle?
I do not suffer from Narcolepsy but I do suffer from a stomach disease so although our diseases are completely different, I can still relate and understand what your going through. The only thing I can say is: Ignorance is anyone who considers this a laughing matter. One day something awful will happen to you and you'll be miserable remembering the times you made fun of this woman that has a disease. So laugh it up.
Hi, I have been taking Provigil, Effexor XR, and Xyrem for my narcolepsy, and several other RXs for my fibromyalgia and other conditions. Stress has made me have worse symptoms and wake up more at night even with Xyrem which usually knocked me out pretty fast and lasted at least 3 1/2 hrs. each dose.
I too am a narcoleptic...im living in mexico and actualy am studying medicine. One of my profesors detected it, and tested me ect. I discovered that it can be controled with modafinil and fluoxetine for the depression. ask your neurologist if you could try it out. Modafinil dosnt afect heart conditions.
Thank you and very well done. I was Dx with MS an Narcolepsy in the same month. U feel like life passes you by, its hard to leave the house. So your only social connection to people is the internet thus the reason some folks with disabilities share what its about online. We are misunderstood. as of now I am not typeing well and not alert. Its like working 48 hours strait and sleepy, trying to fight it. The brain never gets restfull sleep yet we sleep and it then takes a toll on health
also diagnosed with Narcolepsy and Cataplexy.I am on Provigil and generic for the cataplexy.Without the Cataplexy medication,I a ragdoll.I invite you to my video, 'Hypnogogic 14011' - I am a choreographer with my first attempt at sharing our disease with an audience to educate them of the severity that disables us from having "normal" lives. The number, 14011, was my patient ID number in the last sleep study. My "Halo's" were so terrifying that I thought I was going crazy.Good luck.
You are so brave, little one. You stand up to the world and speak the truth--not out of self-pity but out of righteous indignation at the ignorance that imprisons the narcoleptic. Thank you.
Yes, I take provigil, a wake stimulant, and effexor and xyrem for cataplexy, sp, and hh. My cataplexy is greatly improved, but my sleepiness severity has only been moderately improved. Thanks for asking. I am a more severe case than others. Plus I also suffer fibromyalgia.
God bless you for standing up to the idiots who laugh at one of the most debilitating conditions there is. Some of the idiots who still refuse to listen don't realize they can get narcolepsy at any stage in their life and become the target of sick humor.
I was diagnosed 4 months ago and I am 45 and it has turned my world upside down.
I honour your bravery and honesty. I am sorry,on behalf of my fellow humans, to everyone who has life threatening,life-altering episodes of this misunderstood and maligned disorder.
YES,we are strong,resilient people.
Yes,we help each other.
YES,there is real hope and help out there if we keep looking - Like this courageous young woman!
Good... maybe people looking up the word "narcolepsy" for a quick laugh will see this and understand its not a joke for those of us who live with it every day. Thank you so much for sharing this
If I didn't, The so many undiagnosed with narcolepsy and recently diagnosed, and the rest of society would not receive my enlightenment and Narcolepsy Awareness.For if it were not for me posting my experiences on the internet, the world would continue to be utterly blind, and essentially uneducated on the reality of Narcolepsy, and its profound affect upon our lives.Imagine if Martin Luther Kind were to have kept quite and just taken the racism and kept his convictions to himself?
I'm not saying your a bad person for putting these videos up, I'm just awareness videos should be for t.v were they awareness program can give a serious message to thier audience. Where as on YouTubewhen people typed in Narcolepsy they were probably looking to get cheap laught out of it. Sure its not a great thing to be laughing at, but hell it is a picular, and a bit funny of a condition.
Oh *poor* wittle BLaCkMeTaL98. He searched "narcolepsy" to get a cheap laugh at other peoples' suffering, and didn't get what he wanted. Aww. And then he bitched at this woman doing a great public service. F*ck you, you waste of oxygen!
Personally, I suffered many years of being undiagnosed as a direct of public ignorance about what this disorder really is. Ignorance perpetuated by all the damn jokes.
Wow that must suck. You can't swim, drive, or really do anything that requires constant alertness. At first when I clicked on this I thought maybe you would be a whiney hyponcondriac with no life other than to yell at everyone who doesn't sympathize with you but you actually did this quite classily. Kudos
I feel so sorry for you, I bet its so terrifying to have to deal with the "hallucinations" every day, As much as other people might not care, i really do, my best advice is to just not be scared but i know it isnt easy when something has such a possession over your life.. Your a very strong person.
I have narcolepsy too! So i know how you feel. Meds don't work with me ~Sigh~ So no matter what i have to live with the full blow of sleep attacks-and everything else.. But anyway.. I feel for you!
Hi. Thanks for opening up to the world with your comments. Very moving. I was very interested in your comments and am going to research this more. I think it's important to accept people and their differences. Deep down we are all different in our own ways and this is what makes us unique and special. A lot of people out there are just ignorant and live inside their own egos and never think outside the box. Don't give up hope. Take Care now.
You say that Narcolepsy has become a fundamental part of your identity. I can understand that, but it is clear from your video that it does not diminish your strength of character, and your responses to the assholes who find it amusing to insult you in their comments display qualities that are rare in most people.
I don't know much about Narcolepsy, but I'm sympathetic to your situation. Do your best to find ways to make the most out of your life, even if it just means finding enjoyment in small things like reading a book or posting videos on youtube.
Just remember that there are those that live free of diseases and yet still waste their lives.
Have you tried Modafinil (aka Alertec) yet? It is an anti-narcoleptic. You remind me of myself pre-Modafinil. It could very well make a huge difference in your life & mood- you probably know this already, but depression is very common in narcoleptics- no great surprise- I sure hope you can find yourself a great sleep doctor, who can help you- It sucks to feel helpless over your inability to stay awake/alert.
It is not a magic pill, but it definitely can improve the quality of your life & give you a fighting chance to get things done! Don't feel bad- you DESERVE help & hopefully you will have the same good experience with Modafinil (Alertec) that I have had.
WOW. How did you do that if you were sleep? I have Narcolepsy also and I don't think I would be able to put the right words into a video while going through one of my "spells". Do you take anything? I have to take medicine to keep me up and then I have to take medicine to make me go to sleep. I wish you well.
Meth would be way to dangerous for anyone to take. In fact I have a heart condition which will not let me use any stronger stimulants than Provigil. Plus we like the natural wakefulness that provigil stimulates as opposed to ritalin or adderol.
I hope you'll continue making videos. You are so courageous, and YouTube is a great vehicle to increase awarenes. Looking forward to seeing you again.
the people who think one should get over it have not walked in your shoes--as for someone saying they seen people with this problems the odds of this being true are slim ---as for the post with fake nar /cats who are looking for look this is funny and the ones who say I know all about it so get over it are fakes
klyfly1 9 months ago
you chose for it to overcome your life. i havent let it one bit, and im 14. when i see people with the same condition as me so miserable it makes me think how someone could make this more of a problem? Because if you have the right meds, most of its in your mind and you have to power to overrule what your brain is making your body do. maybe you should open your eyes to different possibiltys for your life instead of sitting around making videos of your depressing life.i think you shud get help.
MsMicahh 1 year ago
I am not choosing to just sit around and suffer... I try to have a life the best I can, but is difficult to get around when you combine N with severe C, SP, HH, Fibromyalgia, and RA and cannot drive. I am helping raise awareness for N while Vlogging what my life is like with said disorders. N comes in many different severities, and is not the same for all of us. I applaud you for your positive outlook, but do not chastize people for not being chirpy all the time.
discuscatcher 1 year ago
As you get older, if your Narcolepsy has not yet onset completely... as it does for most, you will see what I mean. Chronic Depression is common place with any chronic disorder. This video was made primarity as an Education Video. I am not sure how you onset, or how young you were initially, but imagine if you had no idea what was wrong with you, and you did not know what cataplexy was? It makes feeling any emotion an injury most sure of having.
discuscatcher 1 year ago
I wish you the best, but let's be united in attempt to Open the Public's Eyes to Narcolepsy so that those who onset with N and have NO idea what is going on, can atleast get some idea by searching videos on youtube or other source. Best, Rachel
discuscatcher 1 year ago
I understand completely I was diagnosed with narcolepsy about 2 yrs ago and it really has changed a lot for me in my life too
msbobbiewilliams 1 year ago
i really feel for you, sleep disorders suck ass. I been getting better over the years but I still get insomnia from time to time.
Fpockets 1 year ago
I'm sorry to hear your disorder, it hurts me to see others suffering. But isn't there some way to lessen the effects of narcolepsy? Like using a steroid or exercising? There has to be something chemical going on.
Victordove 2 years ago
Thank you! When I can get my Rx's, which is often difficult via Individual Rx assistance Programs, as I am uninsured. So during the many times I am forced to forgo Xyrem, Effexor XR, Xyrem, etc, It becomes often dangerous just to live in my apt and definitely scary to do anything in public like grocery shopping, as my cataplexy is severe. Narcolepsy IS chemical... we lack Hipocretin producing Neurons in the Brain. These cells have been theoretically destroyed by the immune system.
discuscatcher 1 year ago
Hi, I am 56yrs old now and still have narcolepsy. I was about 10/11 yrs old when looking back it must have been when even at a young age i knew something was'nt right. In my day all you got was a clip round the ear telling you that you needed to get to bed earlier. Its like everything has got an abbreviation these days. I'm glad that there is more awareness of the problem today, but there were lots of people that were misunderstood in my day. Good luck to all who has this condition.
RG247365 2 years ago
I am sorry you are going through this. Change your lifestyle if you can. I mean this in a good way. you have to try and try. I wish you the ultimate recovery. Dont give up and stasy around people that love you and care about you.
whatwasthat75 2 years ago
im 24 and ive got fibro too.
guai has helped to me and to friends..
please contact me.
i promise im not selling anything i just wish to help others with this horrible invisible syndrom
crucifixionanyone 2 years ago
im so sorry you have to go threw this
im not sure if this is cureable or anything but u will be in my prayers
Sandreeziee 2 years ago
It brings me pain seeing others suffering, usually in person, or real life, but you, although it's just through youtube, the internet, & can feel your suffering and sorrow! It hurts me to so others like this...
I mean I guess it's because I suffer from something too, but something different though. But um, I just wish you good luck!
& I hope you will find a way in life!
I mean, I know you will, just hang in there ! Im sorry I can't do much to help though. =/
I woudlnt mind& bye & good luck!
DarkAngelrace 2 years ago
Same here. Brings me ambition too though. The way I see it for every problem there is a solution. Lifes hell before we find these solutions but when we find the solutions the hell we went through seems well worth it cuz of what we learned from it. The solutions are there its just a matter of finding them.
DrFishNips 2 years ago
Oh, I feel sooo sorry for you!
It makes me sad, what your going through, how alone you are, how much your suffering, and that not many people out there are willing to help you at all! Despite how much you need the help, and company! =[
I swear, if I were older, and knew you or something, I'd be wiling to help you out big time! I don't have narcolepsy, but I do get SP from time to time. And Im not like the others, who would abandon you. I swear, I love making people happy, and helping them!
DarkAngelrace 2 years ago
(3) So you have to open your own eyes and see how the world works - adjust to it, and love it. Because even that some have it worse than others, the world is still a world of opportunities to achieve great goals. But without trying, nothing will happen.
You must stop caring for what other people say, and you have to stop feeling embarrassed about who you are.
Open your eyes, to the world.
triggerhappygunnerm 2 years ago
2. Adjust to the fact that you have a life-long disorder and do the best out of it! How about working with people with narcolepsy/cataplexy? Maybe as a therapist? Or does the fact that you fall asleep while studying keep you from trying? Because my experience is that without trying for the best, the disorders will crush you from inside.
(And why is my comments pending for approval?)
triggerhappygunnerm 2 years ago
Nope, You're the one who has to open your eyes. 1. It is not possible to make people understand this disorder. Try to look through their eyes; They see us fall asleep without any knowledge about the disorder. It looks weird and funny, and the best medicine to the embarrassment is to laugh with them, even thought it's hard. It's impossible to make everyone understand, and it's impossible to explain it - so adjust to other peoples reactions and laugh with them!
triggerhappygunnerm 2 years ago
Open your eyes to Narcolepsy?
how can you open your eyes when your asleep?
lolol
goggles341 2 years ago
Have you tried a company to help get you disability.. I have fibro. and I hired a company to help me get it and it took 6 months and people say that is a short time but we got evicted from our apt. because of it.. if you want more info comment me I will try to help in any way I could.. good luck
heyjude311 2 years ago
i feel really bad for you and hope that your life gets better, i think i understand how you feel. i haven't been diagnosed with narcolepsy but i've researched it and it sound exactly like me.
the reason i haven't ever found out for sure is purely for the fact that my family ould be less than supportive and tell me im lying so i just deal with it. (if that's possible)
eddie280392 2 years ago
Contact me....
SaihatAlhaq 2 years ago
I hear ya girl. I have it too, but I am medicated..life is much better on meds. I'd be in the same place if not for the meds. I still don't have any where near a perfect life..but I am working on it with the right doctors and medication..you sound like you do not take meds...it is horrible and life shattering...I am happy to pass on what has worked for me if you are interested.
colemama35 2 years ago
hope u get better...REALLY
i expirienced this yesterday.......NOTHING to joke about.
ill pray for you
calfan3 2 years ago
sleep paralysis- not scary. you make it scary. no such thing as demon sleep paralysis
Jay12341235 2 years ago
I don't think you understand what she is going through though!
For her, it's more then SP, its something more serious, more severe, something that controls her throughout her day and night, each & everyday of her life...
Just normal SP, is nothing compared to this...
You usually just get it every other time, & its not as frightening or severe, doesn't affect your life as much!
To her it feels that way, like if I demon controlled her life, becuase thats how much seh suffers & how bad it is.
DarkAngelrace 2 years ago
Yeah your right. I've seen it for myself. Sleep paralysis you just get bombarded by crazy sensations its only when you start thinking about entities and demons that you hallucinate them. I never had any of these "demons" or "entities" messing with me until I read about them. Its like dreams if your thinking about something while your dreaming you'll dream about it.
DrFishNips 2 years ago
@DrFishNips no i do not agree with you. I don't want to be attacked by any demon but the hallucinations do come to me during SP. I try to control them by taking long breaths and convincing myself through will power. It is veryy scary, but it can be over come. I think it takes years and most likely a lack of melatonin and not eating right. So I took synthetic melatonin but it will take a while.
sairaj1 2 years ago
Jay, you make me wonder why the fortune of good health is sometimes squandered on incompassionate scabs like you. She was using a METAPHOR you yogurt. And if you have the super-human courage to not fear loosing control of your own mind, then apparently it's because you don't have one to loose.
TheJediCharles 2 years ago
You make me feel sad. I feel bad for you. :( I don't mean that in a mean way.
I'm just curious though, how do you get a job and stuff and do they allow you to get a drivers liscence is you are?
UsedandAbused027 3 years ago
look at her opther videos. She is having a lend.
Focoist911 2 years ago
I am not able to drive, and cannot work a normal job. I am Your Sleepy AVON Lady, and that definitely helps. It is a tough life, and I hope to raise awareness though my videos.
discuscatcher 2 years ago
I used to be that way, I could not wake up, i had sleep paralysis, I used to just pass out for no reason. I was suffering sever sleep deprivation I did not sleep for 6 months then sudenly i couldnt wake up. Its horrible. Ill be praying for you. May THE MOST HIGH BLESS and keep you dear.
Messanayah 2 years ago
I hope with all my heart that doctors will find a cure for this terrible disorder.
sebring98 3 years ago 6
try cocaine
renndragon 3 years ago
My prayers go out 2 you & 4 a cure. Try & keep your head up, honey.
Love,
The B.L.A.C.K.
blacklannmuzik1 3 years ago 3
I am only suffer from sleeping paralysis with my eyes open
If I use cannabis my dreams will go away and i will sleep much better , and not exp a paralysis can not move or not breath and seeing peoples 2 minupto5.
(I am not crazy just a normal man with a good job)
But your case seems like you got this thing permanent and can not controll sleeping or awakeness. I have no idea tho I am not experience it at this level. But i really whish you good luck and are hoping you will findsomewaytogetbetter!
nicke22nicke 3 years ago
the fact that some of you sit there and find her cry for help funny makes me absolutely sick. your lack of moral righteousness and integrity is shameful to not only yourself, but to our society. shame on every single one of you who chuckled and grinned the slightest. i wish you the best of luck, discuscatcher, and i will pray for cure.
tanglewordMRBOGGLE 3 years ago
Yeah it's too bad we can't make a living at sleeping. We'd be rich.
sleepyvlog 3 years ago
I laughed.
arseymcass 3 years ago
Take Ritalin, Methylphenidate, Narcolepsy COULD disappear?
Rogue1Kiwi 3 years ago
there ARE medicines... pff dont make people feel srry for you, is what you got... learn to live with it instead of pitting your self...! there are people with WORST things... suicide? come on!
coquitah 3 years ago
I am on medications. This is about awareness, not mere pitty. Narcolespy/cataplexy is just one of several chronic debilitating conditions of which I am afflicted: Fibromyalgia, RA, and Chronic Lyme's Disease.
discuscatcher 3 years ago
I suffer under Narcolepsy too, i suggest you to visit the HEPHATA sleep labority. In my nightmare, i see the same things like the girl in this movie "the story of emily rose"! And in my case, I had my LAST cataplexy-attack one year ago!!! How is that possible? Organize your life, i don't take medicine..this stuff isn't good for your state of health. Don't stay at home, do sport! Take care on what you eat and DONT THINK TOO MUCH ABOUT NARCOLEPSY...! Good Luck!
Sinan97082 3 years ago
I think I have Narcolepsy, when I don't take medication for AD/HD and on the information leaflet for the proper maintainence of that disorder is a segment for the use of Methylphenidate to alleviate Narcolepsy. I have no health problems as a result but have major problems if I don't take the medication. Suggesting to people they don't take proper medications is grossly ireesponsible and I hope the lady who made the video doesn't listen to you. Proper medications are GOOD.
Rogue1Kiwi 3 years ago
I feel sorry for you.. I have the opposite, I am awake too much, I've got sleeping problems sometimes..
AvengeJoker 3 years ago
I can't stand ignorant people. I have N- no cataplexy or paralysis. This girl has it bad and if you knew what it was like, you would know that you just can't make yourself better. There are some meds out that can help decrease symptoms- best advice: find a great neurologist (I found one in the Bronx, NY)who can also help witjh Disability.
laurascog 3 years ago
My niece has narcolepsy w/cataplexy. She has lucid dreams, and sleep paralysis. Like you she has been robbed of life. Her's is post traumatic. I can only feel for you since you probably have had it life long. She feels the same way you do. I began to show her your video and I could see she needed me to stop as she would have an attack. I agree. PEOPLE OPEN YOUR EYES TO NARCOLEPSY!
supersportsmom 3 years ago
alright so i left a comment a while ago and got like 3 thumbs down, which i deserved. since then i did look up the hallucinations(explains alot personally) and i apologize. but thanks and keep fighting, and ur right nobody really gives a damn, especially my math teacher.
scginda803 3 years ago
Thanks. Several folks do care, but the ones who do not even try to understand can ruin our lives if we let them. There is so much misinformation out there about Narcolepsy.... Oh.... Like Duce Bigalo or Rat Race, right... Uh, no, not really.... Narcolepsy is alot more complicated than Media Protrayal.
discuscatcher 3 years ago
cherryeater your stupid and herryorch i would give up a kidney to be cured of narcolepsy. Your mom probably live a normal life until she had kidney trouble which she problably caused from having an unhealthy lifestyle. You will never understand the effects of never getting restful sleep has on your body.so basically think before you speak loser.
pufthamagcdragn 3 years ago
herryorch i would give up a kidney if it would cure my narcolepsy. You mom probably live a pretty normal life till she had kidney trouble which she probably brought upon herself. You will never know the effect not ever getting restful sleep has on your body. why don't you try staying up for 2/3 day and tell me how much willpower you have. so basically think before you speak idiot
pufthamagcdragn 3 years ago
Check out this heroic video about Narcolepsy
watch?v=kq535FhS70E
0smiley0 3 years ago
Good for you! I am proud of you for posting this video. I am also glad that you have offered replies to those who have questioned or suggested things. I think you are doing incredible things. As a fellow narcoleptic I know that we need to do our best to accept what the condition allows us. The fact that you sell Avon and do whatever you can to help yourself and to be with your husband - that is AMAZING! You deserve recognition just for that. Hang in there.
mmain02 3 years ago
The US does not recognize Narcolepsy as more than just a joke. My Narcolepsy is nowhere near as bad as Rachel's but I can tell you that when she says there is no escape she is not lying.
An expert from Stanford told me that Narcolepsy does not endanger your health. Cataplexy=Paralysis, Sleep=Sleep, and so on. Unfortunatly, the fact that you cannot do minor duties in any job because you WILL fall asleep. ...Cont'd on next comment...
EnergyImpaired 3 years ago
Get over yourself anyone can overcome anything if they want to. You don't depend on anyone but yourself at the end, my mom was about to die needing a kidney transplant and she got it just 3 months after she was given 3 months to live. So don't post this kind of crap, its pitiful!!! You are just one more in the group but you can still make a change for yourself, so look for it don't expect pity from others.
herryorch 3 years ago
Wow, ignorant much?
illusionaryswirlz 3 years ago
Thank you for this video. I too have narcolepsy and it is such a struggle. Sometimes I wish that it was more visible to see what it does to us because then I feel people would take us more seriously and not belittle what it is.
mahouteki 3 years ago
I dont want to come across as a heartless or ignorant but at the end of the day I, nor anyone I know makes fun of people with disorders. Im Aussie and im not really sure what you mean by open my eyes. People in AUS as far as im aware who have disorders like yours receive payments from the government for carers fee pension, rent assistance, standard disability pension and on top of that get rebates and tax cuts. Sounds like your having a rough trott because of your government.
guinesspie 3 years ago
Your Government is better than the US at helping the disabled. In the states, at least, Narcolepsy in particular is the Joke of choice whenever instantaneous sleep occurs, though Narcolepsy is not really like the movies. We do feel the sleepiness coming on enough to lay down first. We don't fall into our soup, unless you tell us a really good joke and give us Cataplexy. I get absolutely Nothing from the US Governement, though Social Security has determined me too disable to work.
discuscatcher 3 years ago
A friend of mine who suffers from chronic back pain is on around $450 AU a week ($410 US). Does your government help you at all?
guinesspie 3 years ago
Though approved medically, I was 2 work credits short of getting SSDI, and SSI is based on cost of living rates from the 1970's! I get nothing, though I often go hungry and without prescriptions. We lost our home to Foreclosure. I am Your Sleepy AVON Lady, but only make $200 a month.
discuscatcher 3 years ago
"I wish there was some way to escape this other than suicide."
Added: December 07, 2006
Last Login: 4 days ago
b3nnic3 3 years ago
Hello discus.. by the way.I dont mean to sound like an expert but I'm just trying to help. Paul said that in his weakness or infirmities he was made strong, He found the Grace that he needed through Jesus because of the afflictions. It sounds paradoxical but you already new this and I know it helps when people remind us anyway. Amen? bye
redentado 3 years ago
This almost made me cry...I understand...
Invisible disabilities are no less disabilities than the visible ones.
lrosmond 3 years ago
okay 1, ur depressed. 2, i have never hallucinated or heard of someone hallucinating. 3, i can work and drive, its called medication. 4, whenever i have a desire to sleep, i get up and do something like go outside or jump roping. it really helps. and when it gets really bad, i go 2 sleep for 15 mins. no more no less. i get up and i feel fine.
scginda803 3 years ago
I am on medication, the best, my case is severe. When I fight sleep attacks, I get cataplexy, esp. in my legs. Hypnogogic Hallucinations are one of the Four Major Symptoms of Narcolepsy... look it up. Just google Narcolepsy. Naps do help, I agree, but I am sleepy again quickly after that. You can only fight it so long, before it gets you in the end.
discuscatcher 3 years ago
narcolepcy isnt funny... its fuckin hilarious
0smiley0 3 years ago
We sincerely wish cataplexy on you!
discuscatcher 3 years ago
0smiley0,How old are you? It's sad when there are people like you who have no understanding or compassion for those who struggle in life. You obviously have NO CLUE what Narcolepsy is and the many side affects it has and how drastically it can affect someone's life, both physically and emotionally. I hope when you need some compassion or understanding; you are surrounded by people who are NOT LIKE YOU. My 6 year old has more compassion and understanding than you!
HEwillreturnagain 3 years ago
First off, you're obviously an old soul. No young soul is going to develop the problems you have. The key is, you have to take responsibility for this and find a way towards A.Money B. Healing. There are tons of great self help books with affirmations, and thought exercises that can help you. You really need to think outside the box with your situation. It's an opportunity for change and transformation.
manifestintention 3 years ago
Cry me a river... I know all about embarrassing disorders. I had my first seizure in front of my 7th grade science class, if anyone thinks their early teenage years were tough, try going through them completely alone because no one wants to talk to the kid who has spontaneous fits. And yeah, I know all about not being able to drive, I know I can't do whatever I want with my life. Do I bitch about it? Put "pity me" videos on youtube? You're making it worse for people like us.
Chase55 3 years ago
This is an educational video about Narcolepsy. Epilepsy is a different neurological disorder, very dibilitating like Narcolepsy. Alot of times folks confuse Our different disorders, esp. an Epileptic Seizure with a Cataplectic Attack or Episode. I really feel for you, I know you, too have gone through alot of hurt and isolation. No need to be nasty, esp. to one who would have been your pal back in school-- I wasn't exactly the most popular cheerleader, plus I was very empathic and intelligent.
discuscatcher 3 years ago
I think hearing that other people have similar struggles can help a person in need to feel less alone in their disorder.
lrosmond 3 years ago
You're pathetic, you make it worse for others with narcolepsy.
Chase55 3 years ago
Pathetic is being a nameless, faceless nobody tearing down a chronically disabled person for your own amusement.
discuscatcher 3 years ago
i am in sleep psychology and currently writing a review paper on narcolepsy. to the comments that pass judgement: you should read some academic articles and educate yourself. narcolepsy varies in severity. for many, it is literally impossible to keep a job or stay in school. the decline in quality of life is devastating. there is little social support. but i believe there is hope. this video broke my heart a bit. i really feel for you. this is where i'd give you a hug. have strength.
marthaboyce 3 years ago 3
Thank you. You have empathy, a very valuable characteristic going into sleep psychology. We just lost our house, I also have untreated RA and FIbromyalgia, but I do have hope. This video I posted to EDUCATE the public. Thanks, I was going to become a psychologist, too, before my Narcolepsy got so severe.
discuscatcher 3 years ago
did u try to seek Jesus Christ? im 100% sure it will work :)
pologeo16 3 years ago
I am saved already. Jesus is my Lord and Savior. Once Jesus was asked why God allowed people to have disabilities, and He replied, "To show My Love, that my love is ever-extending."
discuscatcher 3 years ago
I too have N. I too am a born again Christian. I prayed and cried for years to the Lord until I finally understood that yes N is a horrible dibilitating disease but there are others out there who have things much worse than I do. The Lord has given me strength and much insight into myself. Even with this disorder I have to say I do feel that He has richly blessed me, surrounding me with love.
kittycakes2 3 years ago
hey.. i am thinkig the same way you do! After a time of crying and cursing, i realized that god has given me strength... Now i can help others through their hard times!
Sinan97082 3 years ago 2
I'm so sorry to hear this and what you're going through. I hope that social security straightens up and gets smart and helps you. God bless you!
beccarosado 3 years ago
Look, I also have narcolepsy and cataplexy and although I assume yours is much more severe than mine, I know that your definitely in the wrong state of mind.
Your condition wouldn't be better if people opened their minds and hearts. YOU need to open YOURS and take control of yourself. It's exhausting and difficult but you have to push yourself and not tolerate that your body controls you. I know that if you pushed yourself that extra mile (I know that's not easy) that you could take control :)
Lynne007 3 years ago
Mine is quite severe, also I have very untreated RA and Fibromyalgia, as well. The public DOES need to learn about what Narcolepsy really entails.... not the Duce Bigalo Stereotype. I push myself extremely hard, of course I wouldn't expect you to know that. I can't drive anymore or work a normal job.... but I am still the best Darn SLEEPY AVON LADY EVER!!!!
discuscatcher 3 years ago
Haha, power to you!
I also can't get my license or work certain jobs. I know it's frustrating. Just gotta make the best of it :)
Lynne007 3 years ago
I am very sorry to hear about this terrible condition you suffer! I knew the term narcolepsy but didn't realise what a hellish life the sufferer has until I watched your video! I hope you can find a way of getting better!
bardofely 3 years ago
Jesus christ... this video makes ME want to sleep!
stopxthisxfall 3 years ago
Any person of any age, ethnic background or health can get Narcolpesy.
It is as random, and sometimes as debilitating, as Parkinson's Disease or Multiple Sclerosis or Alzheimer's. Most people who laugh at cataplexy or EDS would never laugh at the tremors of Parkinsons or visible symptoms of other diseases. Narcoleptics simply want the same basic dignity given to them.
mcdodd 3 years ago 3
With everything in life it's always easy to assume it's easy until it's in your life... "People who are depressed should just get over it" or "People with narcolepsy are just lazy" I guess my point is to not listen to people who make stupid comments on this because only truly ignorant people who haven't experienced a single hardship in their life make such uneducated remarks about the pain and troubles of others.
NekoInKimono 3 years ago 8
Lame.
stopxthisxfall 3 years ago
*continued* feel won't somehow force people to care, no matter how bad it is. In fact, as you've probably already seen, people are likely to make fun of you. I feel for you and your disorder, and that's why I'm posting this. If you want to get the word out, you have to present yourself as a person of strength and not as a victim. If you are unable to do this, find a support group for others with your condition and find someone who can In fact, just joining the support group would help a lot. :D
dynamitespoony 3 years ago
Narcolepsy is not something I find funny. I understand that it is a serious, debilitating disorder. However, I do believe that, in this video at least, you are greatly overplaying your hand. It's great that you're trying to educate people about your disease, but in this video you don't sound very influential. Truthfully, you sound sad, defeated, and weak. People who are drawn to such tactics will listen wholeheartedly, but what about the general public? Simply telling people about the pain you
dynamitespoony 3 years ago
i have Narcolepsy also and im no pussy by any means but and its a pretty fucked up thing to deal with...its like u have no control over ur body...o and when i do go to sleep i get trapped in horrible night terrors...
azrrjrod 4 years ago 2
This is definitely not bitching, but rather a grassroots campain for educating those with out Narcolepsy, those who have yet to be dianosed and are freaking out because they fall when they laugh(cataplexy), and to provide a unified supportive front on behalf of my many fellow friends also living with Narcolepsy. I started on Myspace, and now it makes me smile whenever I can help someone else adjust to living with narcolepsy, a most debilitating disorder.
discuscatcher 4 years ago
There are lots of people who do care and do not have narcolepsy. I am not "crippled". Though I suffer with Rheumatiod Arthritis-- totally different medical disease- I can still walk.
discuscatcher 4 years ago
2 answers
cocaine or
adderall
captainsmurffette 4 years ago
Cocaine is illegal. Adderal is used by many with Narcolepy and can be very effective. However, I have Mitral Valve Prolase Syndrome, a separate heart mumur, and thus, must take Provigil, which is much gentler to the heart.
discuscatcher 4 years ago
Sorry you're going through this :( Did you know that there are theories that N is an autoimmune disorder? It definitely makes sense given your other diagnoses. Also, have you checked your insulin (not sugar) levels in your blood? N is linked with that, and a diabetes pill may help in that case... alternative therapies such as valerian and l-tyrosine? Have you ruled out a sleep apnea component to your N? Do you go to N forums online and chat with other people with N?
lcozzarelli 4 years ago
you wouldnt give a fuck if you werent crippled. You arent dead. you can still do shit. theres more than bitching about it
SeanGroovyTime 4 years ago
Maybe an online support group could help you and other people who suffer with this. Please keep in mind that where there's breath, there's hope. My prayers have reached you before this email has. God Bless You!
erinandcompany 4 years ago
quit complaining, at least you aren't black
dickwangs 4 years ago
Race, disability, and gender are all factors in which people are judged by and discriminated agaist in modern society. Though you cannot see my Wheel Chair, the degree of Debilitation upon my life which Narcolepsy, Fibromyalgia, and Rheumatiod Arthritis have had upon my life remain profound and have crippled many aspects of my life. No longer able to drive or work a normal job, I find myself abandonded and neglected by our cold cruel society.
discuscatcher 4 years ago
Hey girl..I feel ya..I dont know how I am able to travel and sing like I do..Provigil really helps but makes me cranky.. My heart is with you...Angela
AngelaWilkins919 4 years ago
Cherryeater, yeah it is funny to watch every now and then, but if you've never had anything to do with this weakness you really have no idea what the hell you're talking about. Actually, shut the hell up, it aint funny at all, shut up!!!!!!!!!
trottee69 4 years ago
You can heal anything. I promise. I would love you to check out this video. Just type narcolepsy cataplexy healing into youtube. You can do it.. There is help...
manifestintention 4 years ago
Might be a dumb question but could narcolepsey or sudden passing out when frightened have a corelation between what some animals do such as possums when they are frightened almost like playing dead or passeing out from extreme mood changes. I have heard of this occuring in bi-polar disorder...
jakedasnake160 4 years ago
I am so sorry to hear this. I can't even imagine how difficult it must be for you. Although my life has been made a nightmare by refractory depression, you have really given me some insight into what pain and suffering really is. Just realize that there is always hope, no matter how remote it may seem. That's the only thing that keeps me going. One day, your life will become easier, with all the unforseen advances in medicine and technology. I wish you all the best.
turbod16y8 4 years ago
I have cataplexy, EDS, hypnos, and paralysis. I'm young and my narcolepsy is just now peaking. A year ago I had a perfect GPA, an understanding girlfriend, and a clearly defined future. That is all gone, but I move on. I fall asleep lifting weights, visiting friends, and necking girls. I can't drive, so I walk. I get a ride and socialize. Stop with the "prison," "no escape," and "demon." Wipe that pouty shaggy dog look off of your face, and quit being so maudlin. YOU LACK HYPOCRETIN!!!
Dagronaldson 4 years ago
First off..Not everyone has the insurance to afford the meds,nor is she able to get Disability..It sounds like her degree of N is worse than yours.I have N,A Musician,A mother and A wife and let me tell you,It is Damn hard!Provigil,makes me hurt and my heart beats out of my fucking chest.Since you suffer from this too,you could be a Little more understanding..Not everyone is like you,Not everyone can go to school and get a 4.0 grade Average..She knows what she lacks asscrack!!
AngelaWilkins919 4 years ago
I was just diagnosed with narcolepsy/cataplexy and was wondering what blood type you have? I know that sounds weird but I'm trying to find out if blood type o negative has anything to do with this rare disease. Just looking for some answers. Thanks for your time & I hope things get better for you.
shellynichole71 4 years ago
as far as i know i had genetic bloodtyping done with my narcolepsy something to do with Hla + or - but other than that i'm pretty aware that your bloodtype doesn't have anything to do with it
jassabep 4 years ago
mine 0+
AngelaWilkins919 4 years ago
I know what you're going through, I have the full tetrad myself.I always thought I had insomnia,but when I turned 29 my knees would buckle and I'd get this pulling sensation in my face muscles when I laughed or angry. Within 3yrs I had nearly severed my arm falling through a storm window,busted my tooth out,dislocated my shoulder,sprains,stitches, from full body collapses. Of all the tortures this disease brings into your life, the worst is one at a time your friends stop coming around.
searchin4thesound 4 years ago 2
zzzzzzzzzzzzzzzzzzzzzzzzzz
stopxthisxfall 4 years ago
We Think One Of My Horses Has Narcolepsy...
It's Certainly Not Funny.
I Really Understand How You Feel.
Xxxx
paterson861209 4 years ago
heh, i'm sorry, i guess only the biggest men and women can laugh at themselves..
it is funny, there is no denying. i met a narcoleptic and they kept falling asleep every other sentence, apparently it was an acute time for them, and they LAUGHED about it, rather than lecture me.
stop whining and telling everyone you're worse of than they are. i'd respect you more if you posted a clip show of funny times you fell asleep
cherryeater987 4 years ago
Its not fucking funny..If you dont want to be lectured,go eat a cherry!!
AngelaWilkins919 4 years ago
God Bless you. And everyone with your condition. God will help you just pray and he'll be there for you. DOnt give up, I cant tell you how bad I feel for you I just know you'll be alright. Take GOd bless.
templeofdog11 4 years ago
what i meant to say.. is get off your pedestal. it's a disorder, sad but true. my uncle has terminal cancer, and i'll be damned if he has EVER sat around telling people how worse off he is.
cherryeater987 4 years ago
This is an awareness video for educational purposes. I am on no pedestal, I am in a deep valley screetching for air to breat trying to survive. You're 14, I was 19 when I onset with Fibromyalgia and 20 when Narcolepsy took charge. I have lost relatives to cancer, too, and it is very hard.
discuscatcher 4 years ago
I think it's clear that the purpose of your video was to explain the seriousness of Narcolepsy. cherryeater987 is either a troll who was hoping to make you angry with that comment or they've watched too many bad comedies and got upset when their search for narcolepsy resulted in something serious.
RectPropagation 4 years ago
as debilitating as it is, you can't deny it's a funny disorder.
cherryeater987 4 years ago
Narcolepsy... A Funny Disorder That's No Laughing Matter by Margarite Utley, a friend of mine. You should read it sometime. No Dibilitating Disorder is a laughting matter.
discuscatcher 4 years ago
I've had narcolepsy for 15 years and live a fairly normal life thanks to two medications.
RJLoki247 4 years ago
I just discovered that I have sleep apnea and narcolepsy as well as this post of yours. May I ask what the two meds are that you take???
HEwillreturnagain 3 years ago
I'm not the person who made the video but I do have Sleep Apnea, according to the people I sleep with, I wouldn't know for sure, I'm asleep at the time. I have Narcolepsy, I discovered, when I didn't experience an overpowering urge to sleep from time to time, after I started taking Methylphenidate, aka Ritalin. Try it, you may well discover a brand new miracle?
Rogue1Kiwi 3 years ago
no, still funny no matter how much you insist it's not./
cherryeater987 3 years ago
Open...my...eyes...*sleeps*
Heirbringer 4 years ago
I do not suffer from Narcolepsy but I do suffer from a stomach disease so although our diseases are completely different, I can still relate and understand what your going through. The only thing I can say is: Ignorance is anyone who considers this a laughing matter. One day something awful will happen to you and you'll be miserable remembering the times you made fun of this woman that has a disease. So laugh it up.
Postedwar 4 years ago 3
Hi, I have been taking Provigil, Effexor XR, and Xyrem for my narcolepsy, and several other RXs for my fibromyalgia and other conditions. Stress has made me have worse symptoms and wake up more at night even with Xyrem which usually knocked me out pretty fast and lasted at least 3 1/2 hrs. each dose.
discuscatcher 4 years ago
I too am a narcoleptic...im living in mexico and actualy am studying medicine. One of my profesors detected it, and tested me ect. I discovered that it can be controled with modafinil and fluoxetine for the depression. ask your neurologist if you could try it out. Modafinil dosnt afect heart conditions.
Mexicancolocho 4 years ago
Thank you and very well done. I was Dx with MS an Narcolepsy in the same month. U feel like life passes you by, its hard to leave the house. So your only social connection to people is the internet thus the reason some folks with disabilities share what its about online. We are misunderstood. as of now I am not typeing well and not alert. Its like working 48 hours strait and sleepy, trying to fight it. The brain never gets restfull sleep yet we sleep and it then takes a toll on health
shinnob 4 years ago 2
also diagnosed with Narcolepsy and Cataplexy.I am on Provigil and generic for the cataplexy.Without the Cataplexy medication,I a ragdoll.I invite you to my video, 'Hypnogogic 14011' - I am a choreographer with my first attempt at sharing our disease with an audience to educate them of the severity that disables us from having "normal" lives. The number, 14011, was my patient ID number in the last sleep study. My "Halo's" were so terrifying that I thought I was going crazy.Good luck.
trinofrities 4 years ago
bahahahahahahahahahahahahahahaahahahahahahahahahahahaha
BandagedSkater 4 years ago
You are so brave, little one. You stand up to the world and speak the truth--not out of self-pity but out of righteous indignation at the ignorance that imprisons the narcoleptic. Thank you.
wiinterrr 4 years ago 2
Hope you never give up. =( god bless you
xepherz 4 years ago 2
Is there any sort of treatment for this disorder?
kurukururock 4 years ago 2
Yes, I take provigil, a wake stimulant, and effexor and xyrem for cataplexy, sp, and hh. My cataplexy is greatly improved, but my sleepiness severity has only been moderately improved. Thanks for asking. I am a more severe case than others. Plus I also suffer fibromyalgia.
discuscatcher 4 years ago
a human sloth like state
wyrwich 4 years ago 2
God bless you for standing up to the idiots who laugh at one of the most debilitating conditions there is. Some of the idiots who still refuse to listen don't realize they can get narcolepsy at any stage in their life and become the target of sick humor.
I was diagnosed 4 months ago and I am 45 and it has turned my world upside down.
mcdodd 4 years ago 4
Oh, so true. I was 20 and in college when narcolepsy decided to take charge of my body! nice to meet you!
discuscatcher 4 years ago
REd bull gives you wings
cspan0 4 years ago 2
Not enough for narcolepsy in the least. However, cafinated beverages, etc. can provide a little pick me up when used along with prescriptions.
discuscatcher 4 years ago
God bless you
xinnocentdancex 4 years ago 2
I honour your bravery and honesty. I am sorry,on behalf of my fellow humans, to everyone who has life threatening,life-altering episodes of this misunderstood and maligned disorder.
YES,we are strong,resilient people.
Yes,we help each other.
YES,there is real hope and help out there if we keep looking - Like this courageous young woman!
I honour her.
narcalot 4 years ago 2
Good... maybe people looking up the word "narcolepsy" for a quick laugh will see this and understand its not a joke for those of us who live with it every day. Thank you so much for sharing this
BaraNoMori 4 years ago
Im very sorry but dont put your sarrow and depression out on the internet to share it with the rest of the world
BLaCkMeTaL98 4 years ago
If I didn't, The so many undiagnosed with narcolepsy and recently diagnosed, and the rest of society would not receive my enlightenment and Narcolepsy Awareness.For if it were not for me posting my experiences on the internet, the world would continue to be utterly blind, and essentially uneducated on the reality of Narcolepsy, and its profound affect upon our lives.Imagine if Martin Luther Kind were to have kept quite and just taken the racism and kept his convictions to himself?
discuscatcher 4 years ago
I'm not saying your a bad person for putting these videos up, I'm just awareness videos should be for t.v were they awareness program can give a serious message to thier audience. Where as on YouTubewhen people typed in Narcolepsy they were probably looking to get cheap laught out of it. Sure its not a great thing to be laughing at, but hell it is a picular, and a bit funny of a condition.
BLaCkMeTaL98 4 years ago
Oh *poor* wittle BLaCkMeTaL98. He searched "narcolepsy" to get a cheap laugh at other peoples' suffering, and didn't get what he wanted. Aww. And then he bitched at this woman doing a great public service. F*ck you, you waste of oxygen!
Personally, I suffered many years of being undiagnosed as a direct of public ignorance about what this disorder really is. Ignorance perpetuated by all the damn jokes.
Go to hell.
cjpmmp 4 years ago 4
Wow that must suck. You can't swim, drive, or really do anything that requires constant alertness. At first when I clicked on this I thought maybe you would be a whiney hyponcondriac with no life other than to yell at everyone who doesn't sympathize with you but you actually did this quite classily. Kudos
DarkMageKnife 4 years ago
i fell asleep watching this.. DAHAHAHAHAHHAHA!!!
im just kidding, i think narcolepsy sucks, but this girl sounds emo.
swimfan3210 4 years ago
I feel so sorry for you, I bet its so terrifying to have to deal with the "hallucinations" every day, As much as other people might not care, i really do, my best advice is to just not be scared but i know it isnt easy when something has such a possession over your life.. Your a very strong person.
spiritofsyth 4 years ago
omg i haev sen de lite nd i think i r moer aware 2 u and senstive :)
arseymcass 4 years ago
I have narcolepsy too! So i know how you feel. Meds don't work with me ~Sigh~ So no matter what i have to live with the full blow of sleep attacks-and everything else.. But anyway.. I feel for you!
OliviaMB790 4 years ago
Hi. Thanks for opening up to the world with your comments. Very moving. I was very interested in your comments and am going to research this more. I think it's important to accept people and their differences. Deep down we are all different in our own ways and this is what makes us unique and special. A lot of people out there are just ignorant and live inside their own egos and never think outside the box. Don't give up hope. Take Care now.
arcticfox1 4 years ago
I'm narcoleptic as well. Very nice video.
Size18 4 years ago
You say that Narcolepsy has become a fundamental part of your identity. I can understand that, but it is clear from your video that it does not diminish your strength of character, and your responses to the assholes who find it amusing to insult you in their comments display qualities that are rare in most people.
Stay cool!
dogstand 4 years ago 2
I don't know much about Narcolepsy, but I'm sympathetic to your situation. Do your best to find ways to make the most out of your life, even if it just means finding enjoyment in small things like reading a book or posting videos on youtube.
Just remember that there are those that live free of diseases and yet still waste their lives.
Vinifera7 4 years ago
Have you tried Modafinil (aka Alertec) yet? It is an anti-narcoleptic. You remind me of myself pre-Modafinil. It could very well make a huge difference in your life & mood- you probably know this already, but depression is very common in narcoleptics- no great surprise- I sure hope you can find yourself a great sleep doctor, who can help you- It sucks to feel helpless over your inability to stay awake/alert.
mashedpatat 4 years ago
It is not a magic pill, but it definitely can improve the quality of your life & give you a fighting chance to get things done! Don't feel bad- you DESERVE help & hopefully you will have the same good experience with Modafinil (Alertec) that I have had.
mashedpatat 4 years ago
Woman,Im happy to know you..Fromone narcoleptic to another..I know that it is REAL..Im proud of whatyou are doing here.. Angela Wilkins
AngelafreakinWilkins 4 years ago
WOW. How did you do that if you were sleep? I have Narcolepsy also and I don't think I would be able to put the right words into a video while going through one of my "spells". Do you take anything? I have to take medicine to keep me up and then I have to take medicine to make me go to sleep. I wish you well.
terriebeneveds 4 years ago
i have narcolepsy i know how you feel
caitdyer 4 years ago
ok but if you did meth wouldnt that keep you up??
not trying to be a dick i just wanna know.. :/
Hessian 4 years ago
Meth would be way to dangerous for anyone to take. In fact I have a heart condition which will not let me use any stronger stimulants than Provigil. Plus we like the natural wakefulness that provigil stimulates as opposed to ritalin or adderol.
discuscatcher 4 years ago
I hope you'll continue making videos. You are so courageous, and YouTube is a great vehicle to increase awarenes. Looking forward to seeing you again.
Suzanne42 4 years ago
wow, terrible feeling which I cant describe.
damiancopado 4 years ago
open your eyes to Narcolepsy, ha thats funny
you know because your always sleeping....
open your eyes.....
....who said it was a joke anyway? stop bitching.
h0axd3m0n 4 years ago
This was for ASSHOLES like you..hO!
AngelafreakinWilkins 4 years ago 3
All I can say is wow... I never thought about how brutal living with this disorder can be. Thank you for sharing.
racinvr8 4 years ago