Here's What Causes Narcolepsy

[@CesarGonzalez-zd8gr]

Literally crying, after 8 years of living with narcolepsy I hope they can somehow make a pill with this discovery

[@KazziKolorZz]

My sleep specialist tells me there is a pill being tested in the UK right now that deals directly with the Orexin. She says it should be available in the states within the next few years. If you look into trials you might get first dibs.

[@j.l.spraggins8589]

@@KazziKolorZz Is it Sunosi?

[@tracyfreddie7899]

@LowTempy That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@lavender2453]

Modafinil gud but everyone wants to buy it from u lol

[@Tinyteacher1111]

@@lavender2453 I have that, but was never asked for any. Maybe because I’m 66? Lol!

[@TheMcKenzieHaus]

Kudos for his persistence. 10 years to figure out cause and 15 years to figure out why lol talk about dedication

[@georgplaz]

thats science in a nutshell :)

[@RyanWilliams222]

Agreed. Amazing work!

[@Brandi_Hill]

I have narcolepsy. In 2021 I had a spinal tap to check my orexin levels - they are fine.

[@jethrotull5847]

I fought diabetes for 20 years. I would literally “pass out” during meetings, driving, waiting in line at McDonald’s. I would wake up in my car not knowing where I was. I started loosing muscle control when I heard dry humor... I thought it was my blood sugar. Then I had a stoke at 54 and I knew I couldn’t fight no more. I hung up my car keys. It’s a long road to get diagnosed. You first enemy in this endeavor is yourself, then comes the medical system. While I believe the identifying criteria for narcolepsy is sound it took me many sleep study’s and two years to obtain the medical diag of narcolepsy 1. Very frustrating. Even worse my employment disability is ensured if I can no longer perform my duties... sounds proper but there twisting of things are criminal. Anyway... in my case thank God for Uncle Sam. I paid into the system for many years and they are a God send ! If you have any weird symptoms don’t just try to forget about them, be proactive !

[@flipnasty2296]

I started having sleep paralysis about 8 years ago really bad case it went away I no longer have it but now same thing I'll be just sitting there in my car waiting and all the sudden 2 hours later I'm waking up

[@flipnasty2296]

I'm 41.. happens daily... I'm a plumber when I work I'm a machine full of energy but the second I sit down that's it... I sleep all weekend I can't spend time with my family and even after I sleep 12 hours I can sleep another 6 or 7 more

[@JuliaIndomita]

Thanks for the video. I have Narcolepsy & it has had a massive effect on my life. I’m so grateful for this doctor’s research.

[@william2599]

Toni Castel same

[@higreentj]

George Church has Narcolepsy and he finds it helps with his research. Dreaming is how the brain solves problems.

[@RinsedCheeks]

What were your first symptoms of narcolepsy?

[@JuliaIndomita]

I have never had those episodes where I just fall down. I am EXTREMELY tired during the day. As soon as I wake up, I am trying to go back to sleep. Even on very high dose of 3 stimulants, Adderrall, Modafinil & Vyvanse, I still have to take 2-3 naps per day of 1-2 hours each. I am wide awake at night & often go 2-3 days with no sleep at night so I’m completely inverted with my circadian rhythm. My pain dr sent to have a sleep study done because I was complaining about how tired I was. But if that’s all you’ve ever known, it’s hard to realize how abnormally tired you are. The sleep study clearly showed my narcolepsy. It’s gotten worse as I have gotten older. It affects my life significantly even with meds.

[@gracefulslumber8441]

Same! I also have Narcolepsy!

[@liveforever141]

finally i understand what happened. my grandmother had a nasty flu (she was hospitalized because life threatining case pneumonia), in her 30's and she blamed this flu for her narcolepsy, because shortly after getting better, she became narcoleptic. she lived with this.

[@themac9677]

These videos are so cool! Could you do one on schizophrenia?

[@AlexM-xj7qd]

I second this comment

[@freezeburn1]

I third this comment

[@Mr_Makina]

But schizophrenia is a mental illness not a virus or fungas like this serious is supposed to look at...

[@maryosburn8707]

I fourth the comment

[@fozzz-vb5oj]

COOL STUFF PEOPLE FALLING FALLING APART IGNORANCE IS BLISS

[@sleepingknight9131]

Thank you so much for this incredible video. Now I can share it with some of my friends who don't understand me and think that I just need more sleep at night. I seriously love this channel😊😍.

[@Tinyteacher1111]

I totally agree! No one believes that I have this, unless they’ve seen me have it knock me out! I’m using this to show people who don’t believe me.

[@Doozymoon]

I knew it! I’ve been saying for years now that I felt my narcolepsy started after I had h1n1! Wow....

[@omegaman6193]

His accent makes everything interesting

[@KC-ie2hl]

Great video! Very important that people know Narcolepsy is auto-immune caused brain damage. People with Narcolepsy (PwN) even develop a glial scar, just like survivors of stroke. Also, you can develop Narcolepsy by experiencing a Traumatic Brain Injury (or TBI- like from multiple concussions, or car accidents) if that same area of the brain is damaged. So many tend to write off Narcolepsy in invalidating ways, saying we're lazy or just need to drink more coffee or whatever. Nope, it's actual brain damage. Grateful for this professor and all those who are seeking to understand and better treat Narcolepsy! Hoping for more medications to help increase deep wave/restful sleep (which PwN greatly lack due to high REM and unregulated sleep stages), as there are currently only two meds that do this. Many don't respond to them or have unbearable side effects or reactions. There are many stimulants out there and in development, but many can not handle stims for various reasons. We sorely need more options for the sleep aspect of treatment! The current two medications are GABA-B agonists, but maybe there is even another way we could get the same result. Like how one of the new stimulants acts on histamine receptors which hasn't been done before. Here's hoping.

[@KC-ie2hl]

@@FionnghulaThell Type 1 is auto immune based. Meaning the immune system does the damage. Then the damage leaves a scar. I've read so so many studies and journals and such about N over the years I forget where exactly.

[@hermanshankovitz2700]

I have it and never knew that.

[@myahouston20]

@@KC-ie2hl my neurologist said my brain looked pretty normal, he thought I would have damage

[@UnleashedTraining101]

People have accused me of being on heroin because of it. It’s embarrassing sometimes. There needs to be more attention given to this disease. I’ve fallen asleep walking.

[@praveen840]

​@@KC-ie2hlyour number

[@TheKEDW]

This is the best video on narcolepsy that I've ever seen! I immediately subscribed after watching this! In the future, I'd love to see a video explaining type 1 and type 2.

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@myeyepie]

@@nancywalker-keay8361what's his name and how does he do it? We need some help with it.

[@massimookissed1023]

Yeah, good job with the audio levels.

[@bing0bongo]

*As a person with Narcolepsy, this is a great video!*

[@ryuhayabusa400]

What do you take to treat Narcolepsy?

[@gracefulslumber8441]

I agree!

[@gracefulslumber8441]

@@ryuhayabusa400 I know this is way later, but I take Nuvigil (Armodafinil) via two 200mg tablets twice a day. I take the first when I wake up and the second in the afternoon. I also take Venleflaxine, which combats cataplexy, with the morning dose of Nuvigil. Though I'm not the original person, I hope this helped!

[@kallijminer8304]

After my diagnosis, I was told by my specialist that my family is the rare case of human narcolepsy caused by mutation. My Grandfather, his mother, my aunts, and I all have confirmed narcolepsy. My mom and sister likely do too.

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@sahilverma7045]

How could your mom have it if that mutation is in your dad's side genes ?

[@karthi8537]

Hey seeker do a video on Nipah virus.. recently spotted again in Kerala literally at the day of it's first anniversary.

[@sdfkjgh]

Sarath Bb: Nipah virus: Happy one-year anniversary, sweetie! Kerala: Oh Krishna, someone save me from this crazy stalker!

[@karthi8537]

@@sdfkjgh pardon me is this some kind of joke to you?

[@kshatriya1414]

Sarath Bb Lighten up ffs

[@sahilverma7045]

​@@sdfkjgh wtf ??

[@liani141]

I have narcolepsy with cateplexy and this is straight on. I really don’t have any cateplexy symptoms now because of my medication but whenever i used to laugh i would have muscle weakness in my neck area. Now almost every night i have vivid dreams, nightmares and vivid nightmares every other night. It’s nothing unusual to me. I just wish i could sleep throughout the whole night.

[@xavier4563]

Oof

[@gearhead1302]

Have you tried hypocretin/orexin as a treatment? I'm curious if it could help someone be more awake. I also use to get weak while laughing when I was young and all my dreams were nightmares. The sleep dr says I don't have narcolepsy though. I guess it's normal to miss out on half your life because your sleeping.😒

[@UnchartedWorlds]

Hi Stephanie, i don't have narcolepsy but i have dreams that come fast, and i regularly get nightmare dream, it doesn't scare me but i wish i could sleep through the whole night without any dreams. Have you found a way to do that? Maybe meditation or being active in sport, etc? I'm a very positive person by day but in my dreams all kind of shit happens 😂

[@fugz]

@@UnchartedWorlds Many medications can cause a lack of dreams or an increase in them. Sadly, none are prescribed for just that purpose alone. I'd recommend trying a sleeping pill of some sort (preferably in the hypnotics category) Just tell your doctor you have trouble sleeping and ask if there are any meds to help with that. Tell them you've tried melatonin so they don't recommend you try that first. Worst case scenario, the pills don't get rid of your dreams and you can just toss em.

[@UnchartedWorlds]

@@fugz no sleeping pills, I'm looking for all natural solution. I got experience with sleeping pills, they suck 😊

[@samhaines8228]

Outstanding work by the researchers, and superb video! To have it explained so succinctly by the man himself, Dr. Emmanuel Mignot. Well done, all around.

[@runawayremedies5063]

Thank you for the very informative video, I was diagnosed with Narcolepsy with Cataplexy last November, its been a whirlwind the past seven years, having being misdiagnosed as having schizoaffective disorder due to my really strong hypnogogic and hypnopompic hallucinations back in 2013. It's been an insane one!

[@TommoCarroll]

Haha "Can it be white wine?" - great video Seeker folk! Loved the animations and loved learning about something that I had zero understanding of!

[@johnwirk]

Not sure of my issue but I struggle with fighting an undescribably strong urge to sleep during the first 4 hrs of work and I'm on my feet on into the day. I'll actually start experiencing that beggining of dream state while awake but its more just confusional arousal. If I am fresh and heavily interested I'll remain awake but if its mundane, repetative, and easy, I risk nodding off standing.

[@juannaym8488]

late by several years but I had the same thing in my late teens/early twenties. It started after I had to work 12 days straight, alternating between day and night shifts, at the age of 18. I was so tired afterwards and it somehow never went away until I turned 21. I don't even know why it changed. The docs I saw couldn't figure out why I had it. I have depressions and OCD, I don't know if that plays a role though

[@lyndayates7533]

Wow! I've lived with this for 60 years. Only got a diagnosis at 30. They say it's not genetic and yet my Mother as well as 2 children have this also.

[@dawndrew8313]

I really hate this condition...it's a difficult to maintain my relationships

[@PaulineDyer-c1z]

Until you own it, and use it for good.x

[@ceciliaarevalo1876]

Wow I’m amazed and so grateful!! I just had my first appointment w/ Dr. Mignot 😭🙏🏻

[@smileandshimmy]

I've had Type 1 Narcolepsy for 31 of my 38 years on earth. Type 1, meaning, with Cataplexy, and all the other 'fun' symptoms it comes with. I wouldn't wish it on my worst enemy. The Doctor Mignots of the world, give us hope. 1:01 "Narcolepsy isn't really about falling asleep, it's about not being able to stay awake" Frickin' nailed it!

[@tracyfreddie7899]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@LadyjediDjedet]

@@tracyfreddie7899 You and your friends are gross, attempting to take advantage of people seeking help. Stop spamming! REPORTED

[@Ficus_videos]

​@@tracyfreddie7899hi. Can you pls share the contact of your doctor. I'm suffering from it and my condition is too worse. And the number of episodes are getting increased day by day. I'm having 40- 50 episodes per day.

[@libacus4741]

I got very sick with the swine flu when I was 6 it was awful soon after I developed sleep paralysis and have awful dreams it’s been 10 years later and it still occurs at least once a week, this blew my mind

[@tracyfreddie7899]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@H.C.Q.]

We all go into sleep paralysis every night whether we become aware of it or not. It is a natural process of the body shutting down and going into sleep mode. Your dream body separates from your physical body once the physical body becomes immobile.

[@sBm4ever]

@@tracyfreddie7899 hello Dear.. 🤝

[@sBm4ever]

@@tracyfreddie7899 can I contact with you please?

[@tracyfreddie7899]

@@sBm4ever hello how are you doing friend

[@jethrotull5847]

I was diagnosed with diabetes T2 many years ago. I have progressed to taking insulin. For years I thought my “melting” when laughing, sleep attacks, and lack of energy was due to blood sugar. As these “weird” symptoms got worse I found myself drinking 12 monster rehabs and still falling asleep in the drive thru with my foot on the break. I fall “asleep” in seconds. So I haven’t drove for 2 years. With the addition of a stroke I am disabled... I want to thank everyone who pays taxes because SSDI came through for me. My private insurance however is a joke ! Everyone take care and thanks !

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this situation

[@martintube24]

what brought on the stroke though, if I may ask?

[@spicedlemons]

my narcolepsy symptoms started directly after having a HORRIBLE flu in 2010 that i wondered if it was swine flu. 105 fever for 5 days. i gasped when this video mentioned a major connection!!!!!! its held me back in life tremendously

[@scarytrout8648]

ERROR at 12 seconds. Narcolepsy isn't triggered by joy, this is cataplexy. As a person with narcolepsy, this distinction is important, because during a cataplexy attack, the narcoleptic is still aware of the world around them, they just are limp and unable to respond because of the paralysis of voluntary muscles. Sleep attacks are different from cataplexy attacks, even though they appear similar to the onlooker.

[@dynamic4820]

Struggling with narcolepsy for years now. Modafinil really the homie fr

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@1.21Gigawatts_]

Modafinil takes your sleepiness away?

[@nuancednuancer7052]

Having nightmares manifest in reality before you properly fall asleep causing extreme terror, which in turn causes cataplexy, which in turn makes the brain fall asleep partially again and manifest more nightmares, getting myself stuck in a perpetual cycle of sleep paralysis and nightmare hallucinations assaulting your every sense while getting constantly paralysed. Not a fun time, I became afraid of sleep and insomniac. Thankfully, everything is better now that it's medicated.

[@rhonindemora8793]

Love the video! As a Narcoleptic its good to have a video to show people instead of trying to explain it.

[@midianrise7059]

Thank you. I’m a narcoleptic and I appreciate you bringing attention on this

[@sicsempertyrannis4613]

I’ve had this since I was a kid. I was falling asleep in class and falling over when laughing. We didn’t think about getting it studied until I was in HS and couldn’t learn because I was constantly sleeping.

[@1.21Gigawatts_]

Have you found a treatment?

[@thebusinesswoman23]

Damn, I wasn't expecting everything in the video to line up so perfectly with my daily symptoms. Oh well, at least I am more informed before my sleep study.

[@jabbersinc6218]

my symptoms just started appears about 4 months ago...every night is horrible. i'm always exhausted now, i wouldnt' wish this on my worst enemy

[@SJSOmar]

When your brain is interested in learning in itself -my brain right now

[@rjpoetry3319]

Been suffering undiagnosed for 25 years. But been suffering unmedicated for almost 5 months! Going to sue doctors when I go back.

[@roberthopkins7984]

Thank you so very much. I am truly grateful. I feel at last some hope for a cure.

[@tracyfreddie7899]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@xeasonchan9401]

respect for Professor's great work

[@potapotapotapotapotapota]

Just so others know, you can have narcoeptic symptoms without having narcolepsy per say. That is because this doctor is describing narcolepsy caused by the destruction of hypocretin producing cells, whereas there are also situations where hypocretin production is merely inhibited.

[@SolidSiren]

Hypocretin is actually normal in people with narcolepsy without cataplexy. I don't have a diagnosis yet but I'm sure I will soon. I now almost crumple to the floor *every day* as my legs give out while falling asleep *while walking around at work*. Unfortunately I have a job that requires almost 20 miles of walking per shift with 11 hr shifts.

[@SolidSiren]

It's so bad now that I can be having a conversation with someone and feel my eyes going weird, can't focus them on anything no matter how hard I try, and fall asleep while talking to them. 😢

[@nat.mp3]

this is really informative!! thank you seeker for inviting dr. mignot! thank you dr. mignot for being so determined in your research and explaining so well!!

[@drunkenramble4120]

I used Modafinil for a couple of months, and it totally killed the symptoms, but sometimes I'd be awake for 3-4 Days.

[@1.21Gigawatts_]

Were you sleepy throughout the day and modafinil took your sleepiness away?

[@Rene-uz3eb]

How about sleep debt causes narcolepsy (it raises both orexin and melanin concentrating hormone, latter triggering rem sleep). They did an experiment, it took 20 days of extra sleep to work off accumulated sleep debt, a total of about 50 hours extra sleep in addition to the required 8h each night (they put people in total darkness for 12h+), before sleep went back to only 8h. With much improved mood, vigor etc. This was for normal people without symptoms. Probably a tad more for people with narcolepsy. Sleep Extension: Getting as Much Extra Sleep as Possible, 2005, stanford.

[@renjiaow3742]

The problem is you can’t sleep for more than 4-5 hours continuously with narcolepsy. It messes with your sleep cycle greatly, I was hitting REM sleep within 3 minutes during my study.

[@Rene-uz3eb]

@@renjiaow3742 but you could still sleep 8h per day in total with naps, and more like 9h if you want to work off sleep debt. It's probably limited how much sleep debt you can accumulate, but it's definitely real.

[@zachlochabay5803]

Interesting video. Wish they had described the differences between Type 1 and Type 2 narcolepsy. Quite a substantial difference. People with Type 2 generally have normal levels of hypocretin so it’s kind of strange. Educational video nonetheless tho!

[@bryanjk]

Along with that they could've gone into the diagnosis process using EEG & MSLT. Basically seeing how you sleep at night and how you sleep during naps in the daytime. One of the notable features are hitting REM sleep ridiculously fast during a nap and not getting late sleep stages at night. Things like Restless Leg Syndrome can play a role causing you to kick in your sleep which wakes you many times throughout the night but you're not usually even aware its happening.

[@H.C.Q.]

I am experiencing narcolepsy lately together with autoimmune disease. I also think it may have something to do with blood sugar levels.

[@roxannerodriguez7075]

I wonder the same thing too. Because our body reacts to the rise and fall of blood sugar. It just seems connected.

[@motherboard2.07]

As someone who has narcolepsy I need to tell you that not all people have all these symptoms. Also, I the 2007 case of the bird flu is what causes mine

[@isceaakajessicaogradach9359]

I've had it my whole life and I'm 53.

[@josecastilleo8425]

I really like the hypnogonic hallucinations. When I close my eyes and start trying to sleep I will start hearing people talking and having conversations that I don't know hearing music playing that nobody has ever heard. It's neat stuff.

[@ZezFilmsGH]

IKR, i literally love this disorder.

[@roxannerodriguez7075]

I like it sometimes too. Sometimes I get upset when people wake me and I've told them "I wanna go back to my dream!" And try to go back to sleep. In which, believe it or not- I can return to my dreams sometimes!

[@abigail7496]

If you love it then you don’t have it

[@JayHoga82]

Exactly. If you love it then you don't have it. This condition has ruined my quality of life. It's embarrassing. I developed it years ago. It's only gotten worse. And EVERYONE invalidates the symptoms.

[@abigail7496]

@@JayHoga82 My sleep doctor says it gets worse until age 25, are you older than that and can you confirm or deny that? I’m 24 and it’s the worst it’s ever been, I truly hope it doesn’t continue getting even worse. What age did your symptoms begin (or what year?) I think mine began around age 8-10 when the swine flu epidemic happened, but I never caught the flu (or the symptoms at least) That’s when I started having trouble waking up to play with my friends, letting them down felt awful. Every day I get stuck in sleep paralysis loops. My dreams are unrelenting. I can’t drive or get an actual job. Cataplexy makes me look nuts (because I shake like a leaf at any negative emotion, makes me look way more upset/anxious than I actually am) I took high doses of adderall in my earlier 20s but now I can’t stand stimulants (It triggers focal seizures my neuro suspects) This SUCKS! Then you have idiots saying they love it 🙄 I hope my next life treats me better, I hope I have another chance that is.

[@ianohtheentertainer5868]

I have never experienced anything as heartbreaking as this condition.....

[@catalinacurio]

Can narcolepsy be brought about by stress on a temporary basis? Ok, I answered my own question in that high stress can lead to the auto immune system to be disrupted.

[@DeKosta]

No not only by that you need a host of certain factors to line up like they explain in this video.

[@Provigilman]

It's much more likely that you're experiencing poor quality sleep or insomnia, which can then result in excess daytime sleepiness. Both of those can be caused by increased stress, and result in similar symptoms. One of the ways that narcolepsy is diagnosed is through a sleep study, where they can monitor both the time that you sleep as well as the quality. There is an overnight period, as well as a daytime nap period that they look at. From my understanding, having gone through it myself, normal people will have difficulty sleeping during the repeated nap cycles after they've had a full night of sleep. I, on the other hand, fell asleep within a few minutes of the start of the nap periods, and had difficulty staying awake during the wake cycles. Lastly, the Doctor in the video that talked about the immune destroying the hypocretin cells. When those cells are destroyed they either don't come back, or they get repeatedly destroyed by the immune response, and as he put it: "Then you have narcolepsy for life". So, there really isn't any form of "temporary" narcolepsy, just other temporary factors which might produce similar symptoms for a period of time.

[@francismiklas3646]

He forgot bad head injuries...to. If you lose 5000 or more brain cells at once,ect.my husband battles this.trying to get disability... There making it hard on narcoleptics.

[@FionnghulaThell]

I think so! I had this experience

[@abigail7496]

No. Narcolepsy is caused by your immune system attacking hypocretin. Once hypocretin is destroyed it never comes back. Narcolepsy is always lifelong.

[@sunshine15623]

The most valued information available. thank you.

[@tailorforeman7082]

I'm like the awkward in between. Excessive daytime drowsiness but I'm not showing all the signs of narcolepsy.

[@gamereditor59ner22]

Interesting information and keep it up!!!!

[@BLAZE45]

This is why I got fucked up after getting sick?! it makes so much sense now.

[@ShirleyitsJohn]

FINALLY!!! shout out to my narcoleptic brothers and sister. I've got the fun one with cataplexy and it's about damn time someone does a narcolepsy video that isn't a cartoon guy in a sleeping cap.

[@ShirleyitsJohn]

Ps. Please my dude, find me a cure that isn't adderall or super expensive xyrem, that would be super duper. It's been a fun conversation topic, but I'd mich rather be done with this affliction and not have to jack my heart up before I can drive safely

[@gracefulslumber8441]

@@ShirleyitsJohn ugh Xyrem grinds my gears. I have narcolepsy, and Xyrem worked really badly for me. It would cause me to eat sugary treats from the pantry/freezer like I was a food-zombie. It caused extreme nighttime incontinence and a medium amount of daytime incontinence. I was so depressed and suicidal during the night while taking it as well. I was more sensitive to loud noises while on it, which would actually CAUSE me to have a cataplexic attack rather than prevent the occurance of one. My family was also affected not only from distress due to the expenses of the dang medicine, but also from having to wake me up for my second dose since I couldn't wake up via an alarm or other means. After 3-4 years, I finally told my Mother that I'd rather fall than take Xyrem. We consulted my sleep neurologist about the problems, and he agreed that it was best to cease taking Xyrem. He told us to start titrating my dose down little by little each night. After a few nights, I was finally free! I lost many years to it, but it's been 1 1/2 years off of it and I'm doing so much better. Unfortunately, though milder than before, both the nighttime and daytime incontinence remain to this day. I honestly think people glorify Xyrem WAY too much. It's treated as some miracle drug for everyone when, just like with any other medicine, it just depends on the person. For some, it works amazingly and they rarely/never have problems. However, when it doesn't work particularly well for a person, it seems to be detrimental. I really haven't seen much/any in-between experiences. In my experience, Xyrem caused way more problems than it fixed. Instead of Xyrem, I take Venleflaxine to combat cataplexy. Originally, I took Venleflaxine for depression since it is also an anti- depressant. I started taking it while on the Xyrem, though at a lower dose. Good luck to you and your family!

[@ShirleyitsJohn]

@@gracefulslumber8441 very interesting experience! Definitely useful to know. I'm currently on just a shit ton of addy everyday and while it definitely improves my day to day I know the amount that it's taking to keep me awake is running my heart hard so it's really only a bandaid to a lifelong problem. Actually took a genetic test since posting this and my doc said xyrem was a no go anyway. I'm sure you understand plenty well that while the narcolepsy definitely sucks cataplexy is soo much more disruptive and also embarrassing at times. Like I've cracked my head on my tile at least 3 solid times just from trying to tell a joke while off my meds. I'm just really holding on to the hope that they'll figure out a drug that can correct the auto immune response in our brains so that this affliction can be cured. It's tough be narcoleptic though since it's not necessarily life threatening and rare that means not too much attention from the medical community 😞

[@CatylisticRevo62]

I like how the narcolepsy expert wears a hairdo as if he just got out of bed

[@jsmith6822]

I used to take a sleep medicine called Lunesta until I started finding my keys in the fridge or a half-made peanut butter and toothpaste sandwich on the counter in the morning. They switched me over to a medication called Belsomra (Suvorexant). Apparently it is totally different in how it acts. It is an Orexin blocker. It works by decreasing the amount of Orexin that your brain produces and in turn makes you drowsy. It works like a charm. Sometimes too well. I can remember times where I’d wake up to use the bathroom and I couldn’t get on my feet because I had no control of them. I’d get out of bed and fall to the floor because I just couldn’t walk. Strange feeling. I think that this medication was somehow mimicking the symptoms of narcolepsy.

[@taralewis6661]

Thank goodness for Fritz!! I don't have narcolepsy nor do I know anyone who does but I can't imagine how debilitating it is for those who suffer from it. And I can also imagine the frustration in getting a diagnosis. Has there been any progress medically/pharmaceutically in the past few years??

[@raygunbobcat]

New drug coming out soon to replace hypocretin. Ask your dr. Mine’s told me like 3 times now haha

[@j.l.spraggins8589]

Excellent info. I have narcolepsy with cataplexy & parasomnias. I've done 4 sleep studies. A blood test showed I have two genes that most of the population does not have & a few percentage have one gene or the other but rarely both. Having both genes meant I had a 72% chance of having sleep disorders. The sleep study & sleep diary factored in with that 72% & the result was a proper diagnosis (after 15 years of seeking medical help).

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@myahouston20]

@@nancywalker-keay8361 who’s the Dr ?

[@couchpotato498]

Love that I can thank a dog for my health!!!! Thanks fritz! ❤❤❤

[@kdog350]

I had no idea having the h1n1 virus could cause someone to have narcolepsy. Hearing that was a like a light bulb going off in my head. Back in 2009 I had swine flu. Watching this video makes me pretty sure I have narcolepsy in part due to the h1n1 virus.

[@william2599]

I have narcolepsy and ive expierienced all of the symptoms. Honestly it f...ing sucks

[@kookiejk3222]

my brain is watching a video itself. wEiRDddD

[@naomifortin2525]

We gon connect the dots army HAHSHAG

[@Xenonmorph__]

Narcolepsy had me like: hypersomnia all day, insomnia all day

[@JannyMaha]

Very nice video. I think that narcolepsy may be genetic in humans as well. I am the only one diagnosed with narcolepsy in my family; however, many other family members (who seem to be in denial) have many of the same symptoms that I do.

[@LadyjediDjedet]

@@nancywalker-keay8361 Stop spamming with that snake oil. People are looking for real help. REPORTED!

[@miegravgaardxoxo]

It can be genetic

[@sarahparker1414]

For many years doctors thought I had absent seizures, taking the medication for it only made my narcolepsy worse. Here recently they sent me to a sleep specialist that concluded I had narcolepsy. It sucks having this and honestly I wouldn't wish it to my worst enemy... it's just to much to deal with ;-;

[@sumdumguy1234]

hi, i finally got diagnosed with narcolepsy and cataplexy after 10 years, it was a battle to say the least.i consider myself mentally strong, and I find it very hard to cope emotionally.i too feel "its just to much to deal with" I find a good cry helps, pick myself up and carry on.i just wish other people were a bit more understanding of the condition.hopefully vids like this go towards that.anyways good luck and keep on keeping on

[@tracyfreddie7899]

@@sumdumguy1234 That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@ScoolHumorORIGINALS]

seeker literally paraphrased the wikipedia

[@MitsuhashiTakashi]

What's new

[@bryanjk]

The doctor needs a fancy lab coat and it would be an even better video!

[@pareblanur7690]

I almost gave up treating the dreadful sleeping disorders I have encountered for 2 years. But ever since I used this sleep plan *4InsomniaCure. Com* my sleeping trouble was vanished and sleeping in my bed just felt great. Use this product, you won`t regret it. I was the biggest doubter but now I`m the biggest believer.?

[@jackietoole25]

I also have a few questions about this information and wanted to know if anyone knows someone or this doctor could answer them?

[@ristube3319]

Well thanks doc, I guess I really do have the worst luck! The accent was a nice way to hear I’m screwed though.

[@YizzleBerry]

I was thinking the same thing...like jeez thanks for bringing even more sarcasm to an already f*caked up situation. Smh

[@aphelmusonda5253]

Thank you so much for the information, I really appreciate ❤

[@josh-ie6vr]

I have cataplexic tendencies, insomnia, frequent sleep paralysis, abnormal REM sleep (in fact I can dream in just minutes of sleeping), and hypnagogic hallucinations (i feel like my whole body was spinning in all directions and angles) but I don't have excessive daytime sleepiness (as a matter of fact, if i return to sleep hours after having a 2-3 hrs of sleep, I'll get sleep paralysis). Is this still be considered as narcolepsy? Help.

[@somneang87time29]

My symptom as like you So i still to looking for help

[@nancywalker-keay8361]

@@somneang87time29 That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@phpn99]

Could this help shed some light on insomnia too ?

[@ryank1231998]

Science is... pretty sick

[@mariapaz6379]

😆

[@kungfungify]

Fantastic work doctor!!!

[@bhrzy2029]

There’s no way I don’t have this some of the symptoms I had more as a child like sleep paralysis and halusantion nowadays I’m just constantly tired and this helped a lot on knowing what I got I’m gonna see a doctor very soon to help deal with it

[@zants_]

2:36 This whole time I assumed I got narcolepsy after having mono in 2009, but now I have another possibility (swine flu), interesting. Regardless, it at least gives me more evidence that one of these things likely caused it.

[@0neBadMonkey]

Wow, great video. Thanks.

[@mikejeffery8371]

Love these! I’d love to see one on E. Coli

[@HeatherHolt]

Wow. Very interesting. I thought I had narcolepsy but turns out I’m just lazy.

[@naomifortin2525]

HAHAHA OMG THIS COMMENT WINS

[@HeatherHolt]

Andrea Fortin aww thank you 💕 that just made my day friend

[@naomifortin2525]

@@HeatherHolt Omg I thought you won't see my reply because your comment was 1 year ago 😅 but no worries you made me happy too! 💓😊

[@gracefulslumber8441]

I have narcolepsy. I even met Dr. Mignot at one of the NN Conferences!

[@nancywalker-keay8361]

4 years ago I was diagnosed with NARCOLEPSY and I have tried everything I could to get rid of this , but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. including NARCOLEPSY , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for NARCOLEPSY and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now totally free from NARCOLEPSY, all thanks to Dr. Joshua Ighalo for helping me with my situation. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone]. They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@avhuf]

this is very informative. thumbs up.

[@Seeker]

Thumbs up right back at you.

[@lizatanksley9181]

Good information 😁😁😁👍👍👍😁😊😊😊👌

[@jblackbath]

Great! But this is about Narcolepsy Type 1 (with Cataplexy) Now please make a video explaining Narcolepsy Type 2 (w/o Cataplexy), which is what I suffer from since birth. Thanks!

[@rjpoetry3319]

Sleep pulmonologists and a number of neurologists in Nasty New York City didn't give me narcolepsy medicine. I still couldn't get narcolepsy medicine. I tried overseas. I have to sue!

[@TheRealDeal7625]

So what is the Treatment or Solutions?

[@Brandi_Hill]

I have narcolepsy. In 2021 I had a spinal tap to check my orexin levels - they are fine.

[@kana-is-sleepy]

Sounds like you have narcolepsy type 2, aka narcolepsy without cataplexy. Unfortunately, researchers still don’t know what causes N2, although they do have some theories. This video is talking about narcolepsy type 1, aka narcolepsy with cataplexy. I have N1, although we diagnosed it due to my cataplexy, not through a spinal tap.

[@Brandi_Hill]

@@kana-is-sleepy I have cataplexy under the age of 20 mostly, a few times in my 20s, again started up again in late 30s. The low orexin levels alone I don’t believe are a stand alone diagnosis. I will try whatever new drugs come about tho!!

[@zachcrawford5]

It's nice having someone who knows what they are talking about explain a scientific breakthrough (especially when they are partly or mostly responsible themselves for that breakthrough) instead of a parrot who is trying (way too hard) to be "hip" and "exciting" and just comes off as condescending and intelligent.

[@rosannalucas2829]

I have type 1 narcolepsy and my father was a veteran of the First World War. I was born in 1941 and always remember my father as being sick. It is possible he died of flu because my family received support benefits. I came down with symptons after an operation on my leg. I was in the hospital for about 3 months. Do you think there is a relationship?

[@nancywalker-keay8361]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@mrs.cloroxbleach4382]

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?

[@FionnghulaThell]

Could be. I have experienced a deep trembling but its more of an internal tremble. Its due to stress and one of the narcoleptic symptoms. Its your your brain trying to wake your body back up even though your body is going into a natural state of sleep paralysis to help you sleep. It creates a tremble because your literally forcing yourself out of that state whereas normally you would need to go through a compete sleep cycle to come out of it. just go with it it wont hurt you.

[@MisterTonyG]

Hmmm interesting comment. Sometimes I experience this "trembling" too. I'm about to doze off and then I'm jolted awake by a tremble or twitch. When I was younger, I was with some friends and this happened. They made a joke that I looked like I was going to have a seizure. It's not very frequent but a couple of times a month and there's really no pattern that I notice.

[@Icydragon28]

I myself have narcolepsy as well as Idiopathic insomnia. My autoimmune disease is RA/Lupus..

[@userunknownspeechlesswhistle]

Okay so I did a sleep study they showed that I have narcolepsy. I've had many sleep paralysis events and cataplexy. I'm considering going to do another sleep study. Has anyone done multiple ones?

[@jadetaylor2443]

I have had two.

[@Tawkitoutti]

I got the flu around the same time and slowly developed narcolepsy. What can I do. I take modafinil and it doesnt work well.

[@lmaxx8881]

So how do we grow back our balancing cells compounds? There has to be a trigger food? Raw liver?

[@shawnquinn1596]

so can they replace the hypocretin?

[@cy7842]

Please do an episode about Psoriasis. Thank you 😊

[@superministry]

I have been self inducing narcolepsy when experiencing sleeplessness. And wake up amazing in the morning. It has helped me.

[@xfan1119]

I have this disease but I don't sleep in day but I wanted to so much and in night I cannot sleep because of mind distrub

[@kaichey2976]

You guys are almost at four mil! So close!

[@NightcorEDM]

I dunno about sleep paralysis but if i force myself to wake up i wake up....

[@sdfkjgh]

Could insomnia be an overproduction of orexin?

[@DynAmisch69]

What about the swine flu vaccine?