My Shocking Story-Dying to Sleep-part 2

[danceofeternity3824]

So... I'm already 9months w/o sleep or even level 2 sleep. :(

[melchan98]

i got distracted , hold on vsauce

[SongsofInnocence]

Couldn't they have given him euthenasia?

[KgirlHasTheWits]

We can only hope this curse will some day leave them...the thing I don't completely understand is why the people who know the risk have to have kids naturally. They can still be parents if they adopt, and they wouldn't risk passing on the gene. I know I'm in no place to judge...it just seems like it could prevent lots of suffering.

[mickeymouse12678]

@KgirlHasTheWits I never understood this either.

What's wrong with adoption? Why must children be blood-related?

Why people with horrible genetic diseases like this choose to procreate is beyond me.

[baselinez]

praise god i can sleep again thanks to this

[JUSTEPOUR18PIGES]

Wow. After watching at some "my shocking story" episodes i'm so ashamed that I complained about shitty things in the past

[kentandken]

WHY CANT THEY JUST PUT HIM ASLEEP OR SOMETHING... MAYBE PUNCH HIM?

[mickeymouse12678]

@kentandken It doesn't work that way...

[205georgie]

stop having babies!

[Muxxyy]

this is such a rare disease..and yet they manage to marry into another family with same disease?? stop inbreeding, people!!

[anime891]

What about psychedelics? I wouldn't be surprised if by altering some states in the mind through psychedelics can or will most likely change how the brain will function. Sometimes even permanently. I think it's worth a shot.

[hollybee43]

I have experienced the complete inability to sleep, thanks to evil drugs benzodiazepines. Never ever take these drugs.It is pure torture. I imagine the kicker is if sleep meds do not work; that is bizarre. Am I correct in saying they have no idea why sleep meds never work?

[QBisbest]

Hmm it's a Prion? *sigh* curse those bloody things.

[Nullstr1ng]

Can somebody please explain to me what's going on with me when I try to sleep?

Random parts of my suddenly moves as if someone pushed me or, pulled my hands or feet up fast.

The only thing I noticed when that thing happens is when I'm trying to sleep and my brain's still imagining or thinking unconsciously.

[Dachandman13]

@Nullstr1ng

Hey,

could be a hypnic jerk you're experiencing... this occurs just when you are about to fall asleep, you are drifting off and then suddenly you Jump and feel like you've been shaken awake. is that how it feels?

[SangYeopKim]

wait wait.. so if they fall asleep AT ALL, they die?

[69BearPedo]

The man with giant head was way more cool !

[christer12241984]

but my brain same deadpool brain right now

[TheLastCurlbender]

Sleep?...HA!!! I'm IB...We don't have time for sleep... XD

[vashsan71]

*cont that you suffer this condition will be enough to keep you up for days... if you are still convinced that you have this condition go get yourself tested but I guarantee that there is another more common cause to your insomnia and you are going to regret investing all that money into a test you didnt need.

[vashsan71]

Everyone should know that 50 million americans suffer from some form of insomnia... if you suffer from depression or anxiety problems or have a family history of it, then that is gonna be the cause of chronic insomnia...it has been proven to be the primary cause of it... FFI is passed from genes... the chances of your family having it is 0.000001 percent. and the sporadic fatal insomnia youre a 100 times less likely to have that... and another word of advice, watching these videos and thinking..

[bibi5027]

and that what said about medical etc,it wouldnt help because his hypotalamus is destroying by prions

[AmandacooL8]

god bless you

[chesse777]

how sadening may allah bless u guys

[KlayKillProductions]

@chesse777 lol muslim flame war starts here everyone yell at me :D

[chesse777]

@KlayKillProductions drangon ball-z shit is gona go down, dragon ball-z middle eastern style lol

[KlayKillProductions]

@chesse777 lol, im kiddin man, i aint gonna rip on you.

*respec knuckles"

[chesse777]

@KlayKillProductions sweet *return respect knuckles*

[AirbornDragonKite]

What if you were hit with a blow from an ice pick to your stomach or something. Would you pass out from shock if you had this?

[krypekeeper]

anyone ever think to give the guy a joint

[mudcrock]

@krypekeeper Would not work, but DMT probably would :)

[krypekeeper]

@mudcrock all DMT would do is make him dream more

[basslinet]

knock out gas ???

[antigay7]

tranquilizer darts nuff said

[Nadasulaki]

At 9:49, Does that say Bologna?!?!? OMG. 0.o

[weezyfan25]

DAMN YOU FREDDY KREUGER DAMN YOU! B(

[TheMayday101]

i'm not sayin i have this disease alright so fuck off people, i'm just sayin here that i'm usually deprived of sleep, usually i'll only get incroments or however you spell that of anywhere from 15 to 20 minutes of sleep at a time and some days i just won't sleep at all. i'm sure there's a name for it but i'm not so concerned about it because after a week or so of sleep deprivation i'll actually lay down and just pass out and sleep for about 2 to 3 days straight... usually 2 days

[DonkymanCominAtYa]

@TheMayday101 wtf? for reals? u gotta start doing sports at daytime so that ur excausted at night time. pluss u should smoke weed before u go 2 sleep. maybe watch a movie and when theres like 1 hour left of it u smoke some nice weed and try 2 sleep after that 1 hour. yes im fucking serious

[TheMayday101]

@DonkymanCominAtYa i shit you not man i fuckin swear it but i'm extremely active during the day and probabally more active during the night i mean i straight up smoke motherfuckers in sports and shit but i just can't fuckin sleep or anything until i actually just pass the fuck out

[RsV1d3os]

Thats so tragic

[gachman]

Maybe Freddie haunted the,...

[BrandNeurofeedback]

I wonder whether Neurofeedback or Audio Visual Entrainment would help with this type of illness. Has anyone hear of either one being researched/tested?

[dendara100]

what if you knock them out like the pre-surgery anesthetics??

[SSJkiller]

@dendara100

Even the strongest sedatives don't work for this kind of insomnia. It was mentioned in the video that they only made him worse.

[ooMatttyooo]

@dendara100 wow im sure they never thought of that.......

[joestl314]

I stayed up for over 60 hours....after which I only got about 3 hours before staying up for another 16. After about 40 hours it's terrible. It becomes difficult to walk, difficult to stand, and after 60 hours you start losing the ability to speak properly. I know some people will stay up for days with drugs like meth.....but once you've experienced it without stimulants of any kind....it's hell. I can't even imagine what it would be like to die from not sleeping.

[AmberHopePierce]

makes me want to go lay down an appreciate the good sleep i can get!

[sof2finchy]

maybe Thalamocortical Dysrhythmia can also cause Insomnia.

[snoopygonewilder]

Actually being put to sleep wont work... we talked about this in my psychology class...your brain can never fall asleep.. so even if you go under... for lets say, surgery... your brain never really falls asleep... what it is is the part in your brain that lets you fall sleep, deteriorates with the disease.

[BiracialGirl1977]

4. ) I even ask the doc for a horse tranquilizer or just a tranquilizer in general i guess he thought i was joking cause he just kept prescribing other forms of anti-depressants ) But for them pot wouldn't even do the trick WOW what agony they must be in

[BiracialGirl1977]

3. ) Pot puts me right out ( I only use pot after several days not being able to sleep, i dont use it just for the fun of it. I use it as an insomnia medication because over the counter sleep aids dont work nor do anti-depressants which BTW take at least 2 to 3 weeks being in your system before they take effect . And when i need to sleep i need to sleep now and not 2 to 3 weeks from the time i start taking medication. .

[BiracialGirl1977]

2. ) But this.. however, I can't even begin to imagine going through that for nine months. I've found that pot helps with my insomnia.

[BiracialGirl1977]

1. ) Damn I Feel I should NEVER complain about my insomnia again. My record is 6 days with no sleep and even that's agony, wanting to sleep but not being able to or to feel your body start to drift off but as soon as you have that drift off feeling your body jerks you awake or as you're about to drift off to sleep you feel as if you are falling which again causes me to jerk awake sometimes even jump up out of my bed, seriously !!! that's what i go through

[crispycrab]

This is making me tired!

[pokemonprincess1988]

I have never been able to sleep well my whole my life. I remember being in my cot/crib wide awake for much of the night trying to sleep. I was on prescribed sleeping pills by the age of 10 and now at 22 I still get it every now and then. This would be my idea of hell. I suppose that they only discovered it recently because it's only within that past several hundred years that people have been living long enough for symptoms to show.

[gladitsnotme]

omg it's like inception

[kianaahsan]

I love sleeping <3

[Juliabeach]

I would adopt children if I knew I had this

[OneStepInTime]

My heart and sympathy goes out to the family this is truly dreadful.... RIP to all the unlucky sufferers :(

[christer12241984]

i have ffi

[WeatherMondacicci]

@christer12241984 Do you really? Not trying to discount your claim but are you only experiencing a chronic insomnia problem? The reason I ask this is because there are people who watch videos like this and relate it to the insomnia they are experiencing at that time.

If you are being real, I intrigued. Were you genetically tested? Did one of your parents die from it? Are you going through it now? If you don't want to respond here you may PM me about your experiences.

[bibi5027]

@WeatherMondacicci but he probably mixing FFI,with normal insomnia,I had insomnia since my 15,and now I am OK

[CharlieTeague]

@christer12241984

I seriously doubt that.

[bibi5027]

@christer12241984 you have sick brain,cuse If you were normal,so you didnt say such ...

[MURAB1TON]

@christer12241984 bullshit

[miketemify]

@christer12241984

Comment posted 1 year ago

Last login: 1 month ago

If you have FFI, you would have been dead by now (6 months)

[Sprekitek]

People who have tried barbituates to sleep have gone into a coma, without even experiencing REM sleep. I am glad that I only have sleep apnoea, which is treated quite well with CPAP therapy - FFI has no successful treatment - and would be a torturous way to die. I know how prolonged insomnia feels, I am glad that I was able to fix the problem....

[WeatherMondacicci]

@Sprekitek Yes, experiencing insomnia is normal and does feel torturous. Not being able to sleep is probably one of the worst things to experience and that is why mankind has figured out how to use sleep deprivation as a form of torture to get something out of that individual or individuals. It is also used as a form of brainwashing to make people compliant.

[BrightEyes10003]

@WeatherMondacicci I'm not hating or anything, but I just wanted to point out that insomnia is much more uncommon than people think it is. When people cannot sleep at night it usually has to do with nervousness, digestion, running thoughts, etc. But insomnia is actually a sleeping disorder. 'One has insomnia therefore cannot sleep', not 'one cannot sleep therefore has insomnia." i don't mean to be so technical, it's just that many people in my family have it bad (including me)

[bibi5027]

@Sprekitek at this disease ,taking barbituraty or sleep tablets is for nothing,cuse your hypophyza is devasted,she cant produce melatonin,

[MrWestsida1234]

smoke weed and eat a hash bar. that will put you to sleep.

[DragonWing17]

its like a curse...

[Jacarter99]

would opiate's or cannabis help?

[XTheGuvX]

Any drugs to try to force them to sleep don't actually help, they make it worse. Problem is that the part of the brain that makes/allows you to go to sleep is literally being destroyed, you do not have the ability to sleep. So no, they may put you in a coma, but not sleep.

[fenriz218]

I just came from a video about christian creationism theories - u can imagine the Bullshit... how the f**k would they explain stuff like that!

My recomendation to anybody who has any genetic link to FFS: get sterilized. If it doesn't get you, it might get your children, if not the grand-children then the great-grandchildren .... but it will get someone along the line. There is no disease worst than FSI,

[WilhelmDrake]

@fenriz218

I'm sorry but I find that comment absolutely disgusting!

fekfika stutulo!

[rainbowspite222]

what about anesthetic, when you go under for surgery, I wonder if that would work

[WeatherMondacicci]

@rainbowspite222 I am not sure about that, there might be some research on that, but I doubt it would work since the problem is in the thalamus which has pretty much been shredded.

Barbituates have been known to prove ineffective and hasten death. I am sure that GA could render someone unconscious but because the mechanism to sleep has been damaged it wouldn't be a replacement for sleeping.

[Jesusisyhwh]

@WeatherMondacicci I read of one patient who tried anesthesia. It was somewhat helpful at first, but it didn't last as I recall. Even the anesthesia would sometimes only give him 15 minutes of sleep.

[Jesusisyhwh]

@rainbowspite222 I read of one patient who tried anasthesia (among other things) to help him sleep. I did help a little bit. Very little overall.

[bibi5027]

@rainbowspite222 After anestetic your brain is not relaxed,sleep is sleep,anestetic,is anestetic,big different

[iluv2cheer2010]

@rainbowspite222 I've read that sleeping pills just speed up the FFI process. I think that the aesthetic could do the same but you never know.

[Zelithe]

no weed won't help. i heard they gave someone enough barbiturates to cause a coma, and it barely had an effect.

[shorteylove]

oh, I feel so sorry for that lady who lost her husband and her children. /:

[Suppozo]

I am not downing the disease...but it doesnt make sense to me how even if the "control" of sleep doesn't work, you KNOW you need sleep. So even if they try they can't sleep? Are there some type of issues blocking sleep in general, or just FALLING asleep?

Give those people a xanax and a blunt. Tell me your not sleepy, go ahead. :P

[MrBloodyAngry]

couple of beers and a joint will do the job

[WeatherMondacicci]

No, that actually won't help, lol

[kyleslovelylemons]

You fucking idiot if they could sleep they would wouldn't they. They have a disease that makes them so they cant go to sleep. They have told you this all the way through the documentry. Arsehole!

[Fraterculae]

i had years of inability to sleep or wake .. just huge zombie-like fatigue... Eventually i sort of 'borrowed' my partner's brain to help me sleep a bit. !! Now i just have chronic fatigue. Just realised my dad has a problem sleeping and swallowing .. :(

[Sammicsno]

can't they give them something to knock them out?

[WeatherMondacicci]

No, FFI is a prion disease, it destroys the thalamus by creating plaque aggregates IIRC, thus communication between the thalamus and the rest of the cerebral cortex is virtually gone. Barbituates would have no effect and even hasten death.

[CVKent317]

If he was having REM sleep, than giving him some DMT (a chemical which naturally exists in the body and is a hallucinogen believed to be responsible for Near-Death Experiences and the visuals in dreams) would not have done a thing to help him.

Interestingly the REM he was encountered probably kept him from dying within a few weeks, but without deep sleep not to mention the variety of damage done to the thalamus (massive) and temporal lobes (comparitively minor) apparenlty you can't live.

[knuffies2007]

I'm sorry..you were saying? Who are you talking to! Are you ok?

[WeatherMondacicci]

Yeah I'm fine, basically he is talking about the mechanics of how the brain process sleep.

[CVKent317]

Correct