Just been diagnosed with Narcolepsy, hardest thing in my life so far. Like a lot of things, you just have to live with it and do your best.

It's good more people are becoming aware of narcolepsy. I have of course had it for years, only recently diagnosed at 34. Having to go through life with everyone thinking you are lazy or high, not understanding why you can't keep up with everyone else, getting fired for falling asleep.... It's tough

If I take a nap, I'm out... for a while. wish I could nap for an hr :( I wish I could have energy to do chores.... :'( sending love to ALL the narcoleptics out there

People don't know how bad this can be. I had a first Sargent in the Army who was well liked by all of us. I went to see him once and he literally fell asleep in mid sentence talking to me at 10 in the morning. If the Army had known they would have discharged him immediately. He was 7 months away from retirement and we did our best to cover for him, he made it to retirement but this is the kind of thing this condition causes.

I'm 18 and was recently diagnosed with narcolepsy. I've dealt with it my entire life but my family and I always just saw it as me being a sleepy person. When I was a newborn, my mom literally couldn't wake me up long enough to feed me, and I ended up getting jaundice. Even though that's pretty extreme and blatant, narcolepsy never seemed like the answer to why I was always sleepy. In junior high, we had to let my teachers know that when I was sleeping in class, I wasn't just being lazy. All my teachers were cool with it and usually let me sleep for as long as they could because I was a straight A student and rarely got behind in my work. Junior high was also when I was diagnosed with social anxiety and depression. I had self-diagnosed myself after doing research and told my mom about it a few months after. She then took me to a counselor and later a psychiatrist (she is literally the best advocate and mother because she has a background in medicine and doesn't just believe what any doctor says, A.K.A. super diligent and does her freakin' research). After being officially diagnosed, it made sense that that was why I was always tired. In high school I switched to a different psychiatrist at the same clinic and ended up switching my medications around. I finally found a sweet spot with my medications that addressed my anxiety and depression. I was still dealing with extreme daytime sleepiness and trouble sleeping at night (partly because I dream for the majority of my sleep). My psychiatrist mentioned narcolepsy to my mom and I several times on different occasions but we told her that there was no way that it could be. I had always seen narcolepsy as a disorder where you fall asleep randomly or when you feel strong emotions. I can always tell when I'm falling asleep, even during sleep attacks, but I can't always keep myself awake. After seeing a neurologist that my psychiatrist works with and having a sleep study, he confirmed that it was indeed narcolepsy. He also mentioned that cataplexy was sometimes experienced by people with narcolepsy. On many occasions, I experienced cataplexy where I literally became weak or dropped to the floor while laughing. I always thought that everybody experienced that, but clearly it's not normal. Anyways, it was nice to finally be diagnosed. Now I don't have to blame myself or think of myself as being lazy and unproductive all of the time. While narcolepsy has affected me negatively, I try to turn as much of it as I can into a joke. Thankfully, my family has a sense of humor and we all refer to myself as a Narc to keep things funny.

Recently had a narcolepsy episode at work and went to the emergency and the doctor literally tried to say it’s all in my head I’ve lived with it since I was 10 I’m now 25 I absolutely hate everything about this

i have narcolepsy and im terrified to drive right now im almost 22 and have my husband who is very supportive drive me everywhere because my cataplexy catches people off guard. im afraid if i ever drive ill kill someone or myself . i think its my biggest fear and with the fear comes more endless sleep during the summer it gets worse as i get tired earlier in the day when others wanna be awake more. At work i feel lazy because im always explaining to people how tired i am. I get depressed thinking how useless i must be to the company having to takes breaks more frequently :( ive never met someone else with this and i cant talk to anyone in person because when i get emotional i seize out. its seriously debilitating and hope crushing.

The guy said employees don't understand so you have to be better. Hard to be better if you can't be at all when your sleeping. Lol. Wtf? When I nap I nap for hours most the time. Narcolepsy hard. Even with meds which I'm on. I can tell when I'm going to oass out. It takes toll on my social and financial life.

This video gives a good insight of narcolepsy as a disorder. As I was growing up, I always thought that it would be a temporary sleep issue. That it was just due to my body growing, not knowing of what was actually going on, I went throughout high school with this disorder undiagnosed. My wife was really concerned about myself especially since I was in the process of college ROTC to become a military officer. With this schedule that I had on campus, the hours were unpredictable and my internal sleep clock was so out of whack, I finally was diagnosed with narcolepsy without cataplexy at the age of 21. The diagnosis came after 1. seeing a neurosurgeon, which I would describe as a waste of time because that was when I was 18, 2. scaring the living crap out of my wife when she was pregnant with our daughter and grasping her stomach in the middle of the night not being able to recollect such actions occurring from my previous sleep episode. 3. Lastly, in 2017 in about the middle of the winter, I was referred to a pulmonologist who is a doctor that can order sleep studies and being able to diagnose narcolepsy (who knew a pulmonologist who's main job is to diagnose respiratory tract disorders?). After having a polysomnogram (PSG) along with a Multiple Sleep Latency Test (MSLT), the diagnosis was able to be completed. I am just two and a half years of being diagnosed, I still see issues with my narcolepsy, I work a normal evening shift (8 hours) go home and take medication to help subdue my dreams and fall asleep for the night, I then wake up in the mornings and get my kids ready for the day and try to allow my wife a little more time to sleep since she has a rough time sleeping. The neurotransmitters seem to be helping if I am doing something productive instead of sitting on the couch watching a children tv show. One thing that I would recommend for advice, is to not give up hope when dealing with a disorder like this, if you have symptoms that are relevant to narcolepsy, I strongly recommend seeing a pulmonologist and seeing if a sleep study is an option. Life is to short to live by just sleeping, it may seem like a joyous life but, sleeping isn't the only thing in life unless you get paid for doing it, if so please notify me on that. Good luck to all!

I have narcolepsy I was diagnosed at 10 I’m now 19 it’s still a little hard sometimes. I take Concerta to stay awake only last 12 hours. It’s hard tho to fall asleep at night because I’m always hungry due to the Concerta. But I’m ok it’s nice that I have my family and friends to help me through it.

Thank you so much for sharing your personnel experiences. Wish I knew someone else with it that I could get together with. Thank goodness for internet. I cannot imagine life with it without medical support and awareness. My grandmother showed signs

I'm failing school because of it :c I can't stay awake I want to slap myself until I stay awake.

Type 2 narcoleptic here... Really sucks that some of my employers have fired me for sleeping..

I never truly understood this condition until I heard the song Narcolepsy from one of my favorite bands, Third-Eye Blind. It really put everything into perspective, as to the daily struggles and overall difficulties those living with it are prone to experience. The acute bouts of sleep that plague narcoleptics intermittently may seem harmless on the outside, but there is a person suffering inside of that decietful calmness. I can only begin to imagine how quick the isolation and grief is to onset, and knowing therapy isn't always an immediate option for some people, it's difficult no matter how you slice it. I just hope that those affected are able to find clean and healthy means of coping. Sure, it may never begin to fully overwrite that lost sense of control and freedom on the outside, but coming to terms and learning to accept the uncontrollable is a step in a good direction for us all. The state of mind when confronting difficult subjects makes all the difference. Stay strong everyone 🤍

my boyfriend has it...cos am new to it ..is hard but I like the fact that he sat me down and explained to me all about it..i love his free being..i love his willingness to work on himself n also to no me understand it much better..it is new to him but am Willing to love him n cherish him as he is..i hv already started making research n teaching myself about it so dat i be there for him..to all supportive partners to their lives ones..i love u so much..do not be afraid just learn them n adapt they are normal like us..thanx babe for giving me a new life time experience to just be there for some1 who really need me..

I have Narcolepsy along with Central and Obstructive Sleep Apnea. What I do know is that when Sleep Apnea is out of whack, the Narcolepsy follows and is compounded like compound interest.

This was super helpful. I actually live near Weymouth and am going to be going through testing to see if I have it. I fall asleep driving even, so now it’s kind of a major situation. 😴🙁

This is the first post you have made that looks like real narcolepsy.

I have had Narcolepsy since I was 12 years old Im 46 now. I can tell you I had to learn to live. Im a diagnosed Narc since 1996.

Great video, us pwn need this educational awareness.

I have narcolepsy and cataplexy. I wish that I could meet up with others whom understand the condition in Australia. It took until I was in my 40's to be diagnosed. This was after telling Drs that I fell asleep at the wheel and thankfully no other person or car was involved but I hit straight onwards into a concrete pole .The car was wrecked but I walked out shaken without a scratch. Many Drs tried to convince me that I was suffered from depression which I knew wasn't the case as i had suffered depression after my daughter was born .Another Dr gave me antipyschotic meds believing i needed more sleep .I can think of much worse conditions to suffer from but I had to give up my nursing career ,limited driving ,independence,my hubby is my carer and my daughter lost many yrs of her mother .People i know don't understand and even had a few jokes about the fact that what a terrible situation to be able to sleep so much as they wish they suffered from it .I doubt it as try falling asleep on the toilet for hours what normally would be a quick trip, in public that means you spill your drink over yourself or tip your meal everywhere .Not being reliable as i always was,missing important events and fall asleep whilst standing or suffering episodes of paralysis when awake .I am glad I saw this video and if anyone feels that they could suffer from narcolepsy and aren't listened to by the doctor just keep trying or go to someone whom does. A blood test was the first indication and then two sleep studies one being monitored overnight confirmed the diagnosis .Unfortunately important have a severe case and am presently on two narcolepsy meds and waiting for the newer drug with amazing results on sufferers lifestyle is not available without paying $30,000 yrly out of pocket .

I agree with what the girl said. When you are awake, do everything you can! Take advantage of the alertness!

I just got diagnosed with narcolepsy and has drastically affected my ability to do what I do at work. Going through the process of finding out what medicine helps the most. But as much as poeple think it’s nothing is so far off. Glad to see theirs a lot of people that have great attitudes and willing to share thier experiences. I think like everyone is saying is in this video the hardest part is adjusting to include it in your life but not letting it hold you back.

Cannabis works for me before bed, smallest amount. Well, it did when I lived in Canada; now back in the UK it's hard going without.

I was diagnosed with narcolepsy 8yrs ago now am 33yrs .I have changed jobs from relaxed office environment that triggers inevitable sleep attacks to outdoor strenuous jobs.i have had accident while driving alone .

Just decided to search on "disease of feeling sleepy all the time" and this came up. I'm in tears right now. My sister has this condition and no one in my family understands her. I feel so bad right now for judging her.. Is there any treatment for this? How can we support those suffering from this condition?

Damn you are lighthearted

I have sleep attacks and I have had close calls in the car driving but this last Sunday I went through a guard rail and didn't realize it until the car stopped.

I have both and im being medicated with 3 types of amphet which in turn is giving me extreme mood swings so I find myself idling just to feel normal. I wake up at least 4 times a night then take amphet in the morning to keep me artificially awake. My body and mind are exhausted. For the record, before I was given meds I was just in and out of sleep all day and night and could have about 15 cataplexy attacks a day. Sometimes I was even just in and out of cataplexy. The slightest thing would trigger it. Even just a thought could do it.

Just realised tonight that I may have this. Shocked that I never suspected it before.

Grief counseling should come at the front end, not so many years later. Without grieving, denial sets in and causes confusion and inner turmoil. Ongoing damage to sense of self will result. Dealing with a societal wall of misunderstanding and indifference will occur. For some reason with N., treating it emotionally in lighthearted manner seems to be the first thing done often supported by medical community. You can't reach a point of acceptance without grieving. N. is a life long struggle with a diagnosis of brain damage.

I just want answers. I'm over it. I'm also afraid of misdiagnosis with sleep apnea which I know isn't my problem. I woke up no fewer than 4 times last night and was awake for 10-15 minutes each time...then woke up at 6:30am today and could not get back to sleep. The frustration is that I know I'm going to need a nap in a few hours. The sleep paralysis and hallucinations aren't routine but they do happen. I've had episodes of my knees just buckling or giving out for no good reason (while walking). The severe EDS is more sporadic-but have had instances of nodding off at work-even while in meetings with my boss. It's humiliating and frustrating. In my group of friends I'm the "sleepy girl". Have napped at most of my friends houses. :(

I’ve had it for many years. But luckily for me I have periods where it’s mild. But when it gets bad for a few months, I can be drifting in and out of twilight sleep for hours, which comes with hallucinations. I started a new job once during a bad patch. I typed out a bunch of stuff that was like word salad and kept getting a jump scare from what looked like a person looming behind me.

I was diagnosed with narcolepsy at 10 but I've had it since in was 5 I still have it and I'm 28 years old now and even tho I'm growing out of it I still have episodes and had to take several medications for it. Til this day I still don't know how to drive !!!

I’m awaiting a possible diagnosis. Can someone tell me the first signs they recall having? Thanks

I would interested in knowing how many people here have Hypnogogic Hallucinations? I have had episodes of extreme exhaustion for 15+ yrs, (sometimes I can't even make a fist with my hand muscles), need to sleep during the day, Hypnogogic Hallucinations for 10+ (that I can remember), always need to nap. I even used to sleep during lunch at work instead of eating (I snuck a pillow into the office like George Castanza...). Turns out my father has a condition diagnosed similar to Narcolepsy that I have only just learnt about. If there is someone in Australia that can advise on which direction to start in for possible diagnosis? Thanks 😊

I got fired cause of narcolepsy. That was fun. I had it first when I was 17 but lived as if it was nothing. Most people including my family thought I was just a sleepy person by nature. And it got worse by last year at the age of 30.

What are your thoughts on an upcoming once nightly sodium oxybate?

Narcolepsy is a sleeping disorder and so far what I've been told by the doctors is that I have to be hands on with things because of not my body can shut and I get sleepy.... I don't know if y'all have dealt with the same thing ?

It's such an interesting topic. Personality I play video games alot and I can play for hours without incident. I am a type 1 narcoleptic, but I don't have cataplexy when Im playing games. But at times of rest when I tell a joke for example my cataplexy is clear as day. It makes me wonder the relationship between dopamine and adrenaline in relation to how my brain activates. I've learned to work around my condition and while it is a pain its manageable as long as I keep my brain active.

I'm beginning to wonder if I have narcolepsy. I'm a single mom and it's gotten much worse, because all I do is work from 4:00 am until 11:00 or even later, trying to get a full life. And now I cannot stay awake. I don't get sleepy gradually. I feel like my head is going to roll off and it's painful, like I have to sleep very fast and so I get my kid in bed as fast as I can, so she's safe, and lock door check oven. Run to bed, so I don't fall down the stairs, because otherwise I will pass out. It's very severe.

One thing everyone should check first is their thyroid. Rule problems with that out first because low thyroid hormone will keep you sleeping as well.

Have they been tested for vitamins like b12?

Also is it like a thing that if I am shutting down and I eat food I can power back up much more easily? Because I literally get into pass out mode and eat something and it helps me to come back to. My husband is kind of used to like if I am begging for a nap it’s probably because I didn’t eat all day. ADHd probably has a lot to do with that but like I don’t always want to cook and then I go too long without food and shut down suddenly. No I don’t have diabetes and I got checked for like low blood sugar issues too.

i have Narcolepsy

Which is the best treatment for Narcolepsy

I actually knew the guy Charlie working with him at Texas A&M. I would of never known

Is narcolepsy genetic? What is the cause? I found out I have this. I am always exhausted and weak. And fall to sleep for more hours than I am awake.

Hi, I have narcolepsy type 2 since I was 11. I don't know what disease it is until 2 years ago, even now my parents don't believe me they think it's some kind of sorcery or black magic because of that they don't diagnosis me. Now I am 22 and living hell life with humiliation but that's not the problem until now I live the life like mama boy. I studied BSC CPT but what worries me most is future What I do? What kind of job would I do? What I studied next? Because of that long lonely life I even lost my communication skills and struggle to talk. What can I do? Is there any future for me? that questions are kills me more

Not missing out ! Gaining are you kidding me it’s ruining my life! Yeh being at school with it is probably do able with understanding teaches but when your my ages and can’t work !

I want to know if it is possible to live with it by changing my lifestyle instead of taking medication. Because as I understand narcolepsy, you have to live with it, but taking medication has many side effects Please let me know, thanks

I've been having narcolepsy and cataplexy for 12 years and during these years the one who know about it won't be more than 5 people. I never share what i got or tell anyone outside my closest people. The worst part is when you be standing and arguing at work then your feet just out of service and can't control them so would actually fall down and laying down.. Like what the fuck!!!! Other than that would be the sudden hit while driving or having an important meeting.. But nothing can beat being confused about if the event i have in mind is just a dream or reality.!!!! Besides any of these stuff, no medications available in Saudi Arabia to treat them and worst part that most of them are illegal and would go to jail if police find even one pill and would get to 3 years in jail for it!!!!!! Am i wrong to just thinking about hitting my head on concrete wall might help shaking the fuck out of head to wake up!!

I’ve had an idea that I have mild epilepsy but I saw a new neurologist today and he just mentioned that narcolepsy might be also a factor and it intrigued me that lots of things I thought could be like absence seizures or partial seizures or something but also I thought I fainted a lot as a teenager. Anyways just trying to figure out what’s going on with me plus this chronic fatigue that I don’t talk much about it hit me like a train in 7th grade like I suddenly got drugged with sleeping pills that day and I’m an energetic person and ever since that day it is something normal for me. I have shut down spells where I just start falling asleep and my husband has to be patient with it. But anyways hopefully we will get it figured out. I think that it also helps me feel like I found a great neurologist I’m super lucky he is a sleep specialist because none of my sons neurologists have ever like mentioned sleep being a factor when I know lack of sleep triggers my symptoms and all of our seizures have been during sleep/waking or falling asleep. But anyways maybe it’s both because we have had history of seizures so he’s not discounting it either but yeah. I’m excited about maybe getting some diagnosis eventually

我今年21岁 我在大约16岁时确诊发作性睡病。 在那之前，从我出生到我念初中二年级之前的相当长的一段时间内，我都是一个非常乐观非常健康的一个人。 和很多男孩子一样，我喜欢跑步，很阳关很开朗，从来不知道忧伤为何物。 一直到我念完初中一年级的时候，我都还感觉自己能够把自己照顾得很好。 可是在后来，在我念初二后不久的一段时间，我感觉很忧伤，对什么事情都提不起兴趣。 我的好朋友都问我为什么总是这么犹豫，我的回答是我也不太清楚。 （因为那时候我还小，根本不知道精神健康为何物，而且在中国的大多数中学中，学生之间的竞争都非常的激烈，也就是被称为内卷）后来在一次英语测试中，在播放英语听力的时候，我竟然睡着了，并且我的举动都被监考老师记录了下来。 我的班主任注意到了我的反常，于是尝试询问我怎么了，我说我感觉很忧郁，而且我的睡眠变得不太好。 （那个时候大约是2018年，我们是寄宿制的学校，在学校里面管理非常严格，连课外书籍都不被允许，所以我们不太可能熬夜）有一点我必须强调，我和我的同学经常因为要预习第二天的功课而会稍微晚一点睡觉，我们会在洗手间里面看书，写作业，背知识点。 现在我才知道这种透支自己健康来取得成绩的行为是多么的匪夷所思）。 一直这样持续到2019年左右，我开始出现发作性睡病的典型症状，也就是猝倒，莫名其妙的在白天入睡，夜间的梦魇，还有睡眠瘫痪。 （这些都是专业的医学名词，我不知道我描述的是否完全正确，但是我可以保证，我说的都是实话。 ）一直到我完成中考，也就是高中的入学考试，我的父母才带我去我们国家最好的医院，它位于首都。 我们挂了专门研究发作性睡病的专家的号，进行了中医的对症治疗。 幸运的是，在苦涩的草药的治疗下，我的疾病的到了一些改善。 一直到后来，我靠吃文拉法辛（5-羟色胺再摄取抑制剂），一种被用来治疗抑郁症的药物缓解我的猝倒症状

I'm tryna make an OC who has narcolepsy so I'm stocking up on research lol, I really don't want make a bad representation of it

kya narcolepsy ka illj kisi bhi pathy me hai hame jaroor bataye

Over the past year my naps are getting longer every day, now up to 3 hours and if I do not nap I feel like I am going to pass out when standing. I slept 8 hours last night then today had to sleep from 5 pm to 8 pm and it was a strong sleep with much dreaming. I am taking lisinopril for high blood pressure and tramadol for pain both for at least 5 years but one thing that has really changed the past 14 months was the fact I lost 110 pounds with the OMAD one meal/day diet, is it possible OMAD is causing Narcolepsy? I take all the supplements and vitamins every day for many years. It is not a matter of should I sleep if I need a nap it is a matter can I stay awake and not pass out when standing. !4 months ago I was superman I drank one pint of rum for 30 years to sleep at night then had a strong sleep and only napped 30 minuets a day due to an episode with AFIB I stopped drinking went to OMAD and got rid of my AFIB. Any ideas what is causing my problem?

My wife has it...hardest thing ever by far all because a chemical that’s not being received by the brain

Bro imagine swimming & you drown from falling asleep 😅😅

I once feel asleep at a bar with my dad I got a sleep attack in the middle of the day

I don't tell people that i have narcolepsy... I think its better to surprise them. If you tell people right away its degrading to your self image

3.01 - look at the boy in the blue t-shirt: that's what narcolepsy often looks like

Better than epilepsy

Great how her son can advocate himself....not talking and all.

I have to share a strong testimonial. I was too excited yesterday. God previously cured my bipolar, I had another chronic condition WHICH IS narcolepsy, I can fall asleep in 1 minute and has previously need like 10 hour sleep to feel like normal people. Yesterday I sincerely prayed God to also cure my narcolepsy, so I could have more energy to do his calling, from yesterday to today with no medication, I didn't feel any sleepiness I have never felt this in my whole life.

It's not that complicated, I was diagnosed years ago and if you're sleepy just sleep. As long as people around you understand then it's comforting. It's okay to fall asleep, I don't see why it's such a big deal.

Please can someone help me out. I have many symptoms of narcolepsy. I know hallucinations are one of them. so during the day or during the night whenever I feel an overwhelming tiredness right before I fall asleep it feel like something shakes my body awake. Right before I fall asleep. It happens all the time. Sometimes I am so tired that I just ignore it and basically pass out from being so tired. But most of the time it scares me so bad I fight everyday not to fall asleep. Please anyone give me an honest opinion. Is this a symptom of narcolepsy or do I have a poltergeist?

I am biruk 35 years old ,i have 1 daughter and 1 son .and than for 20 years i am with narcolepsy in my life too mach dangerous because in my contry they havnt knowledge and my family is not understand me and than my life is too mach obstacles but i am strong i graduated with surveying eng. but any campany i pass for work and i sleep any time so our staff is lough with me they give anther name but my wife is understand me ,my best friend they understand they study in scool b/c i can't sit in classroom...... But up to naw i havnt solved... Sorry for my rough language

Try mdma while driving it will surely keep awake for 10 hours straight..

I have narcolepsy...

My friends

They are all downing that coffee. That’s how I cope lol

I have narcolepsy after 18 Miller Lites.

2:40 I'm sorry, what?! what school has a class on narcolepsy?

My nap is 3 hours daily, do I have narcolepsy?

I wonder what would happen if they drank a mug of Red Bull...

I feel so sad for everyone with narcolepsy and cataplexy :(

I must appreciate Dr odija on UKposts for helping me in getting rid of Norovirus , Your for healing stomach bug is really the best keep saving lives !!!!!!

I was diagnosed with narcolepsy after 30 years of falling asleep constantly. I would reach REM within seconds every time. I managed it in my twenties by napping, avoiding high glycemic foods like bread, white rice, beer and sugars. A full 8hrs of sleep, not 7, was also critical. I eventually cured it overnight via one session of accelerated resolution therapy for $120. I found out through my therapist that all of my many health issues were due to my childhood traumas. I have since then been able to cure my chronic 15yr back pain and physical feelings of anxiety.

Wish I had narcolepsy, no more insomnia

Did a comment said im 83 years old? Did it really really really really really really really say that

My narcolepsy isnt funny at all. Its fucking tragic.

I have had narco zzzzzzzzzzzzzzzz

Nice video . People with narcolepsy should never drive , with or without a co driver . One slump over the wheel and you could kill someone or yourself . Yeah its crap not driving , i miss it , but i value life over convenience or habit . Its illegal to drive in UK with the condition, licences are revoked. That should be law worldwide .

No one passes out in this video. If you are looking for that.. look again.

I ha...........ve......Nar.....co.....le...pay. Sorry I was falling while commenting.😴.😩😩😩

Especially with woman its best not to tell them because they don't want to hear your problems lol

I though narcolepsy was when you get uncontrollably happy when you have a bunch of your preferred drugs in front of you...