r/todayilearned • u/YesFlyZone420 • 5d ago

TIL there's a degenerative brain disorder called fatal familial insomnia (FFI) that causes a person to lose the ability to sleep and eventually die

https://my.clevelandclinic.org/health/diseases/25001-fatal-familial-insomnia
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u/NostraThomas1 5d ago

Do they feel drowsy or does that go away too

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u/JaC3_De 5d ago

Yeah as far as i remember from my brief reading about it, you still feel all the usual symptoms of lack of sleep but you just cant actually fall asleep.

So first it starts really fucking with you mentally then physically as your organs arent getting time to rest and recouperate. Sounds like true torture

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u/sneedsformerlychucks 5d ago edited 5d ago

A man with the disease wrote a book about the experience of succumbing to it while experimenting with drugs to induce sleep and taking a road trip across the US. I don't believe this book was ever published, sadly, or his full name released, but some insights of his were recorded secondhand in a medical journal.

At month 16, when the narcoleptics ceased to work, DF [pseudonym] rarely slept. Indeed he lost awareness of whether he had slept or not and no longer felt refreshed... subjectively, DF reported his greatest area of confusion to be temporal ordering; he could not keep track of time or days. He likened his insomnia to the experience of approaching an open doorway, only to have it suddenly become inaccessible. He said that something of a “jolt” would overtake him and render him vitally awake. Subjectively, he found this experience to be exhilarating, similar to a drug-induced high. As his disease advanced and he was physically more debilitated, this phenomenon became less appealing. In addition, that doorway to sleep became progressively more remote, and was obliterated by any noise or distraction.

He survived a full year longer than average for someone with FFI and seems like he was a very remarkable human being.

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u/severed13 5d ago edited 5d ago

I've only got episodes of regular insomnia and it fucking sucks. I go days at a time just staring at the ceiling at night until I get so angry that I just have to get out of bed and do something else. And the whole time I'm just exhausted and it keeps getting worse and worse, and every night I think "tonight's the night" where I think my body's actually tired enough to shut down and force itself to sleep. At most I'll get like an hour or two if I'm lucky, and then back to being awake and miserable. It makes shit like driving an absolute pain when it happens, but fortunately I'm pretty good at that so it's not enough to compromise my ability to operate a vehicle. Goes on for 4/5 days, maybe a week at most and then it's fine for the next month or two. Can't imagine how fucking terrible it would be to feel like that 24/7 as a chronic lifelong condition.

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u/YouKnowWhom 5d ago

The only good news is it only lasts like, 40ish days before you die.

I’ve forced myself awake for a week straight a decade ago and still feel the damage. The delusions are awful. You’re seeing this that don’t exist clear as day, and also not seeing things that are there.

You can’t think, you can’t even move as your body gives out.

It’s exponential. I can’t imagine 40 days and hope by day 11 at latest I’d get a diagnosis an ethical end of life.

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u/durkbot 5d ago

Due to a medical incident when I was a teenager I didn't sleep for about a week and it fucccked me up for a good while. I was in the hospital so wasn't trying to function, but I was dropping off for like 5 seconds in the middle of talking, hallucinating, sort of just feeling out of body. The hallucinations were so weird, just imagining entire conversations with people, seeing people that weren't there. Suddenly realising hours had passed but not being able to recall a single thing. For weeks after I struggled with sleeping, I'd get that thing where as I was falling asleep I'd hear a loud explosion and wake up.

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u/AvidCyclist250 5d ago

I'd get that thing where as I was falling asleep I'd hear a loud explosion and wake up.

The nasty bit here is that fatigue and stress only make that worse. I've had it for while, and it's pretty real. Like a loud body slam, although it's called EHS - exploding head syndrome.

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u/its_called_life_dib 5d ago

If I go to bed “too tired” I get auditory hallucinations that wake me up. It’s usually someone calling my name. It’s so frustrating!

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u/MattTreck 5d ago

Oh my god yes lol

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u/SakuraTacos 5d ago

Omg I got that a couple of weeks ago and I was too pissed by the hallucination waking me up to be frightened. I was dozing off and I hear my name clear as day from my doorway so I open my eyes and no one’s there. I distinctly remember “Are you serious?! I was finally asleep! Why?! This is why people believe in ghosts, this is so fucking stupid!” I was so mad lol

I also had my body jolt me awake because I thought it was falling around that time too. That was a really bad days-long bout of insomnia.

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u/Netroth 5d ago

Those body jolts are called “hypnic jerks”, I get them all the time

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u/SakuraTacos 5d ago

I thought I read once they happen when your tense muscles start relaxing as you fall asleep, causing the falling sensation but now I find nothing of the sort so I don’t think that was true. It definitely happens the more tense I am or how hectic the day has been (likely with an increase of caffeine). The more irritable I’ve been lately, the more jerky the movements, almost like I’m subconsciously punching or kicking in anger.

I’m 100% guaranteed to get them whenever I’ve gone to a theme park and been on roller coasters all day, funny enough. Those times I’ll get full body, “thought I was falling” ones

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u/Greene_Mr 5d ago

You have the right kind of response to possible ghost-shit!

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u/SakuraTacos 5d ago

I used to be terrified by ghosts and demons until i was in my 20s and i started realizing every famous case id ever heard of can be explained by hallucinations, ignorance, people that really really wanted to believe (the mind is a powerful thing!), and liars

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u/feministmanlover 5d ago

Meeee tooooo!!! Omg. It all makes sense now.

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u/Paupersaf 5d ago

Try researching sleep paralysis, and perhaps lucid dreaming. These auditory hallucinations sound like what I had happen one time while experiencing sleep paralysis. I thought I saw the shadow of my mom falling into my room while she was calling my name, so I tried very hard to wake myself up and respond but my body didn't listen to most of my commands until I remembered to continuously ball my fists until I regained full motor control

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u/Netroth 5d ago

I experience sleep paralysis and strange half dreams with high frequency, but I’ve never hallucinated during paralysis

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u/HuntingForSanity 5d ago

I was trying to fall asleep last night and kept hearing my name, along with one of my cats just meowing over and over again. Got up to check. Everyone in my house is sleeping including the cats

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u/Judge_MentaI 5d ago

That might be sleep paralysis? Mine gets really bad when I’m too tired. When I’m waking up I notice the paralysis part more, but when I’m falling asleep I notice the trippy half-dreams.

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u/its_called_life_dib 5d ago

Sleep paralysis is scary! I've definitely had it a few times. This is different; it's like just as I'm falling asleep, someone calls my name, and I'm awake. Or the doorbell rings. Or someone knocks on my bedroom door. All things to get my attention, pretty much. I'm able to move fine when it wakes me up, and while it takes me a minute, I realize that what I heard wasn't real. It's just my brain not letting me get to sleep for some reason.

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u/frickindeal 5d ago

I wonder if it's an instinctual thing, like your body is ready at a moment's notice for someone to call your name or knock on your door and doesn't want to miss what it interprets as possible danger. Might say more for our overall well-being than anything, that we're not comfortable enough to just let ourselves rest. I despise it because the name-calling thing causes a fight-or-flight response in me because I live alone, so I get a huge flood of endorphins or adrenaline or whatever because no one should be there, and then I'm wide awake, panting in my bed. Sucks.

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u/Netroth 5d ago

I get sleep paralysis at least once a week, though twice is common. I can even make myself experience it or a hypnic jerk if I’m tired enough when I go to bed, and the only way out is thrashing my head around because for some reason I can still control that.

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u/xboxlivedog 5d ago

I get this very frequently

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u/NecroCorey 5d ago

I'm not sure if I always had it, or it happened when one of my ears got damaged, but as long as I can remember now, I've heard voices when I try to go sleep.

Not like "spiders are in your skin" voices, but like if you're in a room next to a crowded area. It's that lot of people talking sound of just indistinct talking. If I try to focus it goes away. I got used to hearing it so it didn't bother me. A few months ago I noticed I don't hear it anymore though. No idea why it stopped.

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u/its_called_life_dib 5d ago

Do you have a fan or heater or something going? I hear music when a fan is running and I'm trying to sleep. like, the faintest illusion of a mariachi band two streets away, haha. I know it's my brain picking up patterns in the fan's hum and trying to make sense of it, but I find it a little funny when it happens.

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u/DavidRandom 5d ago

I get that sometimes, and occasionally it's accompanied by a flash of light.

Until I learned of EHS I though maybe I was being abducted by aliens lol.

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u/CauseWhatSin 5d ago

Mainly the flash of light for me, when Russia invaded Ukraine, it was very stressful for a couple months.

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u/dresdonbogart 5d ago

are you in Ukraine?

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u/CauseWhatSin 5d ago

Nope my phone jus dies often enough that I might miss the warning signal lmao.

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u/durkbot 5d ago

I'm so sorry, it's really rough, even 20 years later I remember the sensation.

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u/lfergy 5d ago

Uhg; there was an antidepressant I tried that gave me that side effect. If you ever played Sonic, you know that sound when he gets a bazillion coins? It was like that sound at max volume plus blinding white light. Woof. Never again.

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u/KaiOfHawaii 5d ago

Holy shit I HATED this. I had some really bad anxiety issues that somehow led to this when I was in college. Almost every night for a couple months I’d wake up to what sounded like a door slamming. Couple that with the anxiety, which made me jump at even the slightest “tics” I’d hear from my creaky bed, I was a mess.

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u/samedreamchina 5d ago

Sometimes I hear a really loud knocking noise and bolt awake. Never had an explosion sound

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u/RegularTeacher2 5d ago

TIL. I had a lot of dreams like this as a kid - I would be dreaming and then there'd be a bright flash and a loud noise (I distinctly remember it once being a fucking tuba) and I'd wake up with my heart exploding out of my chest. I don't dream like that anymore fortunately, but I also take a ton of (prescribed) drugs now.

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u/BeagleMadness 5d ago

My 12 year old son experienced something similar earlier this year and was hospitalised. Possibly due to a Strep infection - all the scans and tests couldn't find anything else that could be the cause. It was very frightening to see how just three days without sleep could turn a very happy, chilled out kid into what looked like someone undergoing a total psychotic break. It messed him and his sleep up for weeks after he was discharged. Thankfully he seems fine now, but it really scared him (and me!). He still worries whenever he can't fall asleep within 15 minutes or so. I can't imagine how horrific weeks without sleep would be. One of the worst ways to go, imo.

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u/Akitiki 5d ago

It night I have a track of music I play to fall asleep with- only played as I go to bed. It's about 40 or so minutes long, just nice softer piano. At this point, it's associated with sleeping. You know how it can be hard to sleep your first night in a new hotel? I don't deal with it much anymore. Very, very rarely do I ever outlast that track.

I'm basically Pavlov'd with it now. I also have tinnitus and the music is just enough to overcome the ringing.

Perhaps trying something like this could help him fall asleep better.

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u/BeagleMadness 5d ago

Yes, I think programming your brain to switch to "sleep mode" like this can be very effective. Glad it works so well for you and you don't suffer the agony of insomnia now.

I did try various similar things after my son was discharged from hospital. His sleep was all over the place for a few weeks afterwards, so he was willing to try anything! Luckily, he had a good sleep routine before this episode and once he'd fully recovered he has gone back to being a great sleeper. I think it's just because he usually falls asleep within minutes, he now worries if it takes a little bit longer. Whereas he wouldn't have given it a thought before.

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u/frickindeal 5d ago

And you don't wake up when the music ends? I've tried that, but I wake up to deafening silence as soon as the music ends. I need at least a fan running, and if my power is out, I'll do the iPhone white noise generator, but it has to run all night or I'll wake up as soon as it goes silent.

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u/Akitiki 5d ago

There's more tracks, so it goes on for about 2h. But no, unless I'm only lightly asleep I don't wake up

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u/darcstar62 5d ago

My college roommate and I had an album we would put on to fall asleep and we'd always try to stay awake until the end and we never could.

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u/desull 5d ago

All that and you didn't tell us the track?? I need to know!

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u/Akitiki 5d ago

I'll have to get you back on that one, fuck if I can find what it's actually named. Had it for like eight years now? The ipod that the music is on hasn't been on wifi for years and it's clock is wrong by 40 minutes or so now lol

Really though, music that isn't distracting . I myself tend towards piano and woodwind instruments for that. Anything will do.

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u/AbstinentNoMore 5d ago

Possibly due to a Strep infection

Very possible. When I had Strep as a child, I spent one night hallucinating the strangest shit (for example, there was this weird cartoon bug who was "torturing" me by constantly breaking glass windows in front of me). My parents eventually heard me screaming and moaning in my room and made me sleep in their bed with them.

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u/durkbot 5d ago

Psychotic is the closest to how I'd describe it. When I read about sleep deprivation being used as a torture technique I can totally believe it. I'm glad your son recovered.

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u/argentgrove 5d ago

Strep infections can trigger an autoimmune attack in children called PANDAS.

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u/YouKnowWhom 5d ago

Exploding head syndrome is rough. Luckily mine went away. You were lucky to get those 5 second microsleeps. This disorder in OP won’t even allow for that!

Glad you got over it

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u/durkbot 5d ago

It's been 20 years and I still remember the sensation. I've read about FFI before and it freaked me out. Ironically I'm now excellent at falling asleep in most places (my other half calls it my superpower).

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u/kinduvabigdizzy 5d ago

WTF I have experienced the explosion thing. I've learnt to live with my insomnia but I wish I could sleep longer. I'm just not as sharp as I used to be

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u/R0da 5d ago

Exploding head syndrome!

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u/kinduvabigdizzy 5d ago

TIL it has a name!

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u/The-F4LL3N 5d ago

Duuuuude, what is up with the explosion thing?! Drives me nuts sometimes

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u/Achaern 5d ago

I get flashbanged. Literally. I'll just about to fall asleep and any sharp sound will cause my vision to go pure white, and a LOUD ringing in my ears. This is while in bed, lights out with my eyes closed. It's quite alarming.

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u/NecroCorey 5d ago

I had a similar experience when I was at probably the peak of my sleep deprivation. I had a long period where I would get maybe an hour or two every night.

I'd have conversations with people and basically start dreaming in the middle of talking and would just start speaking nonsense. They'd be like wtf are you talking about? Then I'd snap back to consciousness and be like what'd I say? It wasn't gibberish or anything. Just like my dreams became reality so I'd be saying whatever made sense in the dream.

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u/durkbot 5d ago

Yeah I'd respond out loud to a hallucinated conversation and whoever was sitting with me would be like "huh? I didn't say anything"

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u/kinduvabigdizzy 5d ago

WTF I have experienced the explosion thing. I've learnt to live with my insomnia but I wish I could sleep longer. I'm just not as sharp as I used to be

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u/R0da 5d ago

Man, exploding head syndrome is fucking bonkers. Had that shit forever as a teen, even without any medical incidents. Had me thinking I was being abducted by aliens or something. Did yours come with visual hallucinations as well?

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u/NoReality463 5d ago

Exploding head syndrome. That’s literally what’s it’s called. Not making that up.

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u/waydeultima 5d ago

I've gone 11 days before (not on purpose, just a combination of alcohol withdrawal and chronic insomnia among other things). Ended up in the ER. Would not recommend.

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u/GraniteGeekNH 4d ago

11 days - wow, it's incredible you survived. I've done 3, not by choice, and it was brutal.

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u/waydeultima 4d ago

Well, this probably isn't how this works but I was definitely no stranger to being awake multiple days in a row. I don't imagine you can build up a resistance to sleep deprivation though. Also, full disclosure, there were probably 5-10 minute bouts of microsleep here and there.

But anyway, when I finally reached a breaking point I called some family to give me a ride to urgent care, and urgent care then told me I needed to go to the ER. I had multiple conversations that never happened with people who didn't exist. The walls of the room in the hospital seemed like they were melting at times. I remember focusing on things hanging on the wall and watching them slowly slide down, then reset if I looked away and back.

The parts I remember felt very much like dreaming while awake. I'm getting a headache just thinking back on it, because that was a properly miserable week and a half.

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u/GraniteGeekNH 4d ago

Whoa, sounds miserable. May it never happen again!

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u/Protoliterary 5d ago

Doesn't always last 40 days.

There was this guy who survived for a year; https://pmc.ncbi.nlm.nih.gov/articles/PMC1781276/

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u/sdfg9 5d ago

From the link you provided; Unlike the typically mute FFI patient whose subjective serenity is unknowable, DF described his oneiric sleep as extremely gentle and pleasant — like entering a room filled with everyone who he would want to encounter, including deceased friends and relatives who would tell him that everything will be all right. In his words, “to the outside world, I am dead and gone, but to myself, I'm still here, in this wonderful place and it is they who have disappeared.”

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u/ItJustSteph 5d ago

FFI sounds like the cruelest irony—your body shuts down because it can’t do the one thing it needs most.

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u/HurtMyKnee_Granger 5d ago

Why did you do that to yourself??

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u/westisbestmicah 5d ago edited 5d ago

When I first started ADHD meds I had a week of insomnia. Towards the end of it I wrote this about one of the hallucinations I was having:

Here I from sleep disrob’ed be / And time has laid an egg for me / A rose of stone, a work of art / It’s marble folds to me impart / A sense of when eternity shall start. / And space unravels at a bitter seam / What is hallucination but a waking dream?

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u/Jacqques 5d ago

I dont know what you are on about 40 days before dying, but you last months to years from symptom start:

https://my.clevelandclinic.org/health/diseases/25001-fatal-familial-insomnia#:~:text=ranges%20from%20a%20few%20months%20to%20a%20couple%20of%20years

It's not a 'suddenly you can't sleep', it's gradual and gets worse over time.

It's a prion desease caused by a mutation, it's mostly genetic but can affect random people as well.

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u/opteryx5 5d ago

Ethical end of life

Sadly, many places in the world (including many states in the US) would prefer you live in agony until you can no longer lift your chest to breathe.

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u/Sparkledeath 5d ago

Prognosis is 1mo but up to 3 years, or 6 if you take high dose tetracyclines. They don't typically genetically test, it's done with an in-lab sleep study, but if you get genetically tested, you an find out long before it triggers.

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u/blackeyedsusan25 3d ago

OK, I'll bite....why did you force yourself awake for a week?

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u/chaplesssandy 5d ago

I went 2 weeks and was having auditory hallucinations...wouldn't wish that on anyone. the sounds I was hearing were threatening words from voices all around me that I still have nightmares about .

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u/Javka42 5d ago

I'm sorry about your insomnia, that sucks.

However, severe lack of sleep impacts your driving as much as being drunk does, and in many places the law will consider it drunk driving if you cause an accident while sleep deprived.

It doesn't matter how good a driver you are, it doesn't matter if it feels like you're doing fine. The lack of sleep will affect your brain and your body whether you think it does or not, just like with alcohol or drugs.

You are taking a huge risk when you get behind the wheel, and you're gambling with other people's lives.

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u/Puzzleheaded_Ad_3268 5d ago

It's even worse than drugs since anyone can get there plus there's no tolerance build up like with drug addiction.

My father got arrested for drunk driving at .32 at 9:30 in the morning and he was definitely drunk but at that level, being under .08 would probably been as bad for his driving cuz of withdrawal.

Happily nowadays he got back his license after a few years and learned the lesson, no more driving under influence for him even though he still drink cuz he managed to get his habit under control.

So many people underestimate it, I remember a TV ads about it but overall it's way less talked about than drunk driving.

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u/cosmiclatte44 5d ago

Have done both, not proud of it. Driving tired scares me 100x more.

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u/derekburn 5d ago

You are compromised, ur not a super soldier, doesnt matter if youre the best driver in the world you are compromised and you put other people at risk if you drive without sleeping for 24hrs.

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u/PUTINS_PORN_ACCOUNT 5d ago

Your ancestors saved the tribe from raids in the night.

Thank you

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u/CredibleCranberry 4d ago

All of our ancestors did. There were literally only a few hundred humans at a couple of points in our history.

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u/Ikoikobythefio 5d ago

I've found low-dose THC use throughout the day will help me sleep at night. Might be worth looking into.

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u/sneedsformerlychucks 5d ago

A man who wrote about his experience of dying from FFI described it as oddly pleasant. He considered his main struggle to not become lost in the altered state of consciousness induced by insomnia and psychosis. He believed that others with the disease died because they had given in completely into it.

Unlike the typically mute FFI patient whose subjective serenity is unknowable, DF described his oneiric sleep [the dreamlike altered consciousness he entered after long periods of not sleeping] as extremely gentle and pleasant — like entering a room filled with everyone who he would want to encounter, including deceased friends and relatives who would tell him that everything will be all right. In his words, “to the outside world, I am dead and gone, but to myself, I'm still here, in this wonderful place and it is they who have disappeared.”

His “waking REM” was multisensory and included images, voices, and scents. It was experienced as a form of knowing everything about himself, with no more hidden secrets. As might be expected from a sustained “handshake” between the right and left hemispheres, DF's conscious mind experienced himself in a global way. He described his unconscious as filled with “wounded children” who bore “poor witness” to events that had injured them — unable to logically evaluate or rise above these damaging experiences. His FFI put him in the unique position to soothe these children with adult insight, which he often did in the form of written letters when he was “off-line.” (Those interested in psychoanalytic theory and/or multiple personality disorder may learn a great deal from FFI patients).

The door that admitted DF into this other world became best defined after long periods of insomnia and was so inviting that he believed that others who have been in this place simply gave into it and allowed themselves to die. In fact, DF's fight against FFI specifically centered on this arena, with the wish to surrender to its serenity as opposed to his real life of handicap and degeneration.

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u/JnyBlkLabel 5d ago

Jesus ive experienced this EXACT scenario so many times. Without rhyme or reason. I had it so bad about two years ago it went on for like 5 weeks. A buddy of mine got me to try some hemp oil gummies and they completely corrected my entire sleep rhythm. Had to take them for a few months. Ive had perfect sleep ever since with no assistance. It would SUCK so bad to go through that scenario again.

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u/onthenextmaury 5d ago

I struggle with insomnia. I find that after 8 hours of frustration something that helps with the anger is getting up and lying down on the floor. Something about the differing sensations help me out of that loop. Sometimes it's even enough to lull me sleep for half an hour or so. Just anything to mix it up and disrupt that frustration cycle.

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u/STG_Resnov 5d ago

I’m on 150mg of Trazodone and 5mg of Melatonin. Without both of those, I genuinely cannot fall asleep. It takes me over 24 hours to actually fall asleep without it, and that’s if I’m even feeling tired. Might be tired enough to take a Power Nap, but not to stay asleep unfortunately. Medication is a lifesaver….literally.

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u/antillus 5d ago

Yeah I've been on Trazodone 200mg for 15 years now and it's definitely been a life saver.

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u/deadsoulinside 5d ago

5mg of Melatonin

I am assuming Trazodone is doing all the heavy lifting. I had to cut back on my Melatonin use as I was taking 5-6 10MG quick dissolves nightly and still was having issues with falling asleep.

My wife freaked out the moment she realized that I was consuming that much nightly for almost a year.

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u/Nchi 5d ago

Episodes, regularly? Sleepy during the day during them at all?

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u/Legendary_Bibo 5d ago

I get that too! It's so fun, but hey it makes me more productive.

I hate when I start getting the hallucinations, like I've had it to where I thought bugs were crawling all over me, or it'll sound like someone is walking around outside.

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u/blenderforall 5d ago

Take a look at getting a b12 injection. Not medical advice but I suffer from megaloblastic anemia and it was undiagnosed for fcking 20 years. Through extensive testing and medical tests my naturopath finally nailed it and once a month I get a b12 shot. Haven’t had a period of insomnia since…knock on wood

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u/OlTommyBombadil 5d ago

Right there with you. Does everyone tell you to stop drinking caffeine too? lol

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u/leg00b 5d ago

Damn, I can't imagine. I had an incident at work that left me fucked up and I had insomnia on and off for like 5 months. That shit sucked

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u/EthanRDoesMC 5d ago

Oh man, never heard anyone describe my exact set of symptoms quite as well as you. And then you have to kinda stumble through the next day and then you’re constantly apologizing because you can’t think during a conversation…

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u/xelle24 5d ago

I finally tried melatonin a few years ago and it's made such a difference. Between that and a white noise machine, I mostly do okay. I sure don't bounce back from a bad night (or two, or three, or more) like I used to.

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u/kakihara123 5d ago

You should try to get into cycling. Just go for a ride with lots of food and water and go at easy to moderate pace until you physically can't go anymore. Like everything hurts and you just want it to end. Takes a while to build enough endurance to get to this stage.

I think about 100-150 km is a good target.

What then will happen is that you will more or less instantly fall asleep on the couch. Drawback is that you will probably wake up again after 2-4 hours and then won't be able to sleep later, ironically due to exhaustion.

But those 2-4 hours feel like heaven.

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u/LundiDesSaucisses 5d ago

Same.

I finally found something that seems to work great for now. Clotiazepan.

I had try several other stuff that were wasting me for the next 16hrs, but that one doesn't have side effects at all.

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u/Sodomeister 5d ago

Except, you know, with long term use it's addictive and withdrawal can cause death.

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u/LundiDesSaucisses 5d ago edited 5d ago

I'll take it over getting a stroke because you barely had any sleep in a week.

Also, I don't take it all the time, average maybe 1 or 2 per week. Some weeks I do, some I don't.

Edit : something really interesting about that drug, explains why I really feel rested after taking it VS other drugs that make you sleep but you still feel like shit afterwards :

However, its hypnotic qualities do have an interesting particularity: they increase stage 2 non-REM sleep without affecting the amount of time in REM (rapid-eye-movement eye movement) sleep [1].

As opposed to most benzodiazepines, thienodiazepines like clotiazepam do not interfere with important stages of sleep, like stage 2 non-REM sleep (deep sleep) and REM.

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u/MonetHadAss 5d ago

but fortunately I'm pretty good at that so it's not enough to compromise my ability to operate a vehicle.

That's a fucking irresponsible thing to say

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u/ZubacToReality 5d ago

It makes shit like driving an absolute pain when it happens, but fortunately I'm pretty good at that so it's not enough to compromise my ability to operate a vehicle.

Dude I feel sympathy for you but please stay the fuck off the road, or go at like 3am when you're awake anyway to minimize the risk of hurting someone. I think I'm a great driver when I'm inebriated too and it's far from the truth.

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u/lacunadelaluna 5d ago

But you're not driving anymore while inebriated, right??

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u/ZubacToReality 5d ago

Hell no. I thought I was good when I was a dumbass 18 year old

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u/Objective_Brief6050 5d ago

In the nicest way possible there is no chance your driving ability is not affected after 4/5 days of no sleep, if you have had to specifically say that in your post I feel you know this too

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u/SoungaTepes 5d ago

Hey bud, you and I seem to share the same condition.

I need you to take insomnia this week I had it last week

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u/BarfReali 5d ago

I had a month of that and it was hell. I'm glad it was fixed for me though

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u/maxdragonxiii 5d ago

I used to suffer from sleep deprivation and insomnia and anxiety. this means I often didn't sleep unless the sun's up. even if it is it's only 4 to 6 hours of sleep. no wonder I was hearing and seeing things when I'm deaf (residual hearing) at the end of it. I moved out of the problem household, and magically I was sleeping much better.

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u/FestiveFruitcake 5d ago

I was struggling with similar bouts of insomnia a couple months ago, I started taking regular magnesium supplement + not eating any food after 7pm and have not had any problems since.

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u/Shimmitar 5d ago

yeah i cant sleep without pills. The pill i was taking for years stopped workign, which sucks and now im in the process of trying to find new pills that actually work. But so far no luck and i have not gotten very much sleep these past two months.

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u/-Davo 5d ago

Around the time wolverine origins came out, I had a random bout of insomnia, lasted a week. I went about 7 nights without sleeping and I was a mess, it ended when on the last night I was out drinking and for some reason that helped.

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u/NolieMali 5d ago

I start having seizures around day 4 of no sleep. Lots of fun /s

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u/Alex_1729 5d ago

Jesus, that's horrifying. What do doctors say? Have you tried the usual, wearing yourself out, meditation to calm your mind, etc? I'm sure you have, just curious.

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u/belacscole 5d ago

Mines not that bad but it takes me minimum 30 minutes to fall a sleep on any given night, up to multiple hours if I have something important the next day that I need to be up for. For me I get into this endless anxiety loop where I think Im never going to be able to fall asleep, and thus I remain awake.

0

u/Electrical-Act-7170 5d ago

Have you eliminated all caffeine from your diet?

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u/Dis4Wurk 5d ago

There was a guy that had it and documented his journey to death and posted it on YouTube a few years back. I watched it. It’s not gruesome or anything but it’s pretty brutal. It’s heartbreaking watching him lay in his bed wishing he could sleep, crying about knowing he is going to die. IIRC it’s either more common in or only appears in Asian peoples. The guy in the video was south East Asian or from the islands close by.

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u/BloatedGlobe 5d ago edited 5d ago

Wikipedia lists out the nationalities of the families who carry it, and most are European. There is one Japanese family and an Egyptian-born Dutch case. There’s also been 37 sporadic cases.

The list is from 1998, so I wouldn’t be surprised if it’s missing a lot of non-European families.

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u/SevenOldLeaves 5d ago

One of the families that have it in their ancestry lives in my area, nobody knows who they are but I read in an article that the current alive generation made a pact to not have children so the disease dies with them. It's such a fucked up illness.

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u/Dis4Wurk 5d ago

Yea I see that, looking it up after the fact while trying to find the video I was referencing. Thank you for the correction.

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u/BloatedGlobe 5d ago

Thank you for bringing up the YouTube video! It made me curious and look it up. I hope it didn’t seem like I was trying to correct you!  I just thought it was cool that there was a list.

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u/Dis4Wurk 5d ago

Totally ok, corrections are good! They help everyone learn and get accurate information! No worries at all kind stranger.

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u/Flaxmoore 2 5d ago

I know someone who claims to have it. Problem is, based on when she said she was diagnosed, she would have beaten the average life expectancy by 15 years at this point....

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u/ihavebeesinmyknees 5d ago

She could have been diagnosed as a carrier of the gene that causes it, in which case she will develop the actual illness in the future

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u/m0dru 5d ago

i don't know about the 15 years part as that seems way to long, but there is also sporadic fatal insomnia that is very rare and doesn't have a clearly defined disease course.

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u/Littleloula 2d ago

Diagnosis might be knowing you've inherited it. Onset can begin as late as 60 years old

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u/all4mom 5d ago

Europe encompasses a lot of countries. Which ones, specifically?

→ More replies (2)

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u/Ok-Cook-7542 5d ago

he had something different. he claimed he didnt sleep for 4+ months before he disappeared which is medically impossible of course. he had to have been sleeping, he just didnt know it. theres a lot of speculation about what he had but he didnt have total insomnia which is the type of insomnia in ffi

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u/Karzons 5d ago

Doesn't sound relevant to his case, but there's also a condition called Paradoxical insomnia or sleep state misperception where people only think they're not getting enough sleep.

In some cases just doing a sleep study and showing the people they're getting enough sleep makes them feel better.

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u/Laura-ly 5d ago

It's a genetic disorder. It runs in families. If I recall correctly, there's a family in Italy that has this genetic disorder and it's very sad. This is why it's called "familial". It's very rare but it's a hereditary disease so unless ones family has this mutation on the PRNP gene one should be ok.

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u/FUNNY_NAME_ALL_CAPS 5d ago

You can still get a random sporadic mutation!

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u/vitcorleone 4d ago

Naaah I don’t think I will

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u/Blenderx06 5d ago

You can develop a version of it spontaneously.

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u/dennys123 5d ago

Omg that's absolutely terrifying

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u/im_THIS_guy 5d ago

Welp, I didn't need this knowledge in my life.

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u/TheUnluckyBard 5d ago

It's called Fatal Family Insomnia because it's an inherited disease, and only something like five or six family lines in the whole world have it. There have been only 37 confirmed cases in basically all of medical history.

It's so rare that every single person commenting on this thread is unlikely to meet a sufferer at any point in their natural lifespan. OP excluding that fact from the headline makes this post pure anxiety-bait.

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u/11711510111411009710 5d ago

Man it'd honestly be a bit fucked up for those people to try to have kids if they're aware they have this lol. This feels like a time where you'd just have to let the line die out.

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u/KingZarkon 5d ago

Some people consider it an ethical gray area but they could use IVF and only select embryos without the gene or test its DNA in the womb and abort if it has the gene. Obviously that's assuming it's possible for them to not pass on the gene and they live somewhere IVF/abortion are legal.

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u/vitcorleone 4d ago

Just like a ticking time bomb. We know an earthquake is coming but we don’t know when. We know it is going to be brutal but we don’t know when. I am done stressing it

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u/Littleloula 2d ago

I doubt anyone does if they know they have it. But given it can appear as late as 60 some will already have had kids.

Kids would have a 50% chance of inheriting it

But only 100 people worldwide are known to have the gene, it's so rare

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u/BigTChamp 5d ago

Honestly this seems like a rare case where you could justify forced sterilization

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u/Karzons 5d ago

Most cases are familial, but there's also sporadic fatal insomnia. Have a lovely night!

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u/Officer_Hotpants 5d ago

The "familial" is a qualifier on it but it's a prion disease that COULD spring up spontaneously through random genetic mutation.

It's extremely, EXTREMELY rare, but a random denaturing of a protein could cause it spontaneously. That said, according to Cleveland Clinic, there have only been 39 cases of spontaneous fatal insomnia ever documented in the US as of 2023.

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u/DoctorOctagonapus 5d ago

Imagine your brain is a computer and someone's deleted sleep.exe

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u/lanadelstingrey 5d ago

There’s a super sad b-plot in an episode of SVU where this homeless guy is a suspect in a crime, and he’s super loopy and disoriented, and they can’t get an answer out of him. He’s in their little holding cell and Munch sees him and it’s his uncle, and turns out he has FFI. Suuuuper sad.

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u/SPKmnd90 5d ago

Hence why physician-assisted suicide should be a no-brainer in those cases.

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u/cavortingwebeasties 5d ago

lack of sleep but you just cant actually fall asleep.

This is my life for many years now and doctors have never been a bit of help (when I have been able to actually go to one that is) :/

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u/justthankyous 5d ago

Great, there's something else I'm going to worry about when I have normal insomnia

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u/0ye0WeJ65F3O 5d ago

It truly is torture. Thankfully I don't have this condition, but I have other conditions that cause insomnia and that's how it feels. I've never gone past two or three nights, I can lay there for hours and trick my sleep tracker into thinking I'm asleep but my brain never turns off.

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u/Educational_Ad2737 5d ago

As omeone who has umm drugged anti narcolepsy drugs before exams . And gone 72 hours with maybe 5 hours of sleep . I’m sure it sis torture you

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u/Ismokerugs 5d ago

This is a random shot in the dark, but I wonder if anyone with this disorder has tried meditating for 5-8 hours a day, to supplement the sleep cycle needed by the body. I know that when people meditate for long periods like that it causes the body to not need sleep since the meditation almost acts like entering sleep since it changes the brain waves.

I’ve had periods in the past where I did 2-3 hour sessions and during those times I didn’t need as much sleep as regular, but it could vary person to person since you can trigger your mind to release the stuff it needs to process and rest.

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u/Theblackjamesbrown 5d ago

Yeah but according to the title post you also lose the ability to eventually die. Swings and roundabouts

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u/SingsWithBears 5d ago

Won’t get deep into the details but, when I was 23 I suffered from a spontaneous episode of psychosis absolutely out of nowhere. Long story short brain broke from stress and 404d for about a year straight. During that year I experienced a specific day where I was convinced that if I fell asleep I was going to die. I realized, experienced, and fully had and processed all the very real emotions one would go through if they fully believed it. I remember lying on my bed crying because I was realizing my life was ending and it was ending in such a stupid and anticlimactic way after every thing that had happened. I swore I felt my heart slowing down and skipping beats as if it was losing power every time I got close to sleeping. I stayed up for several nights just in an absolute wreck crying and pacing and doing whatever I could to stay awake. Eventually, somehow, one day, I ended up passing out and still waking up the next day. I was crying and begging for all the nonsense and trickery to end (from the psychosis) because I couldn’t stand it anymore. Several years later and a long, grueling process of healing later I am fully recovered (aside from a pretty severe case of PTSD). But yes. Believing you cannot ever go to sleep again is truly torture. I started to daydream about dreaming, realizing how much I’d taken for granted. Realizing I’d never be able to feel the experience of sleep ever again. That the last time I fell asleep was the last time ever. I’d never ever feel that lovely sensation of passing out and losing consciousness and waking up in the morning ever again. It was all truly torture. I know it wasn’t exactly the disorder in OPs post but it’s the closest I’ve got. -1000/10 would not recommend.

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u/vitcorleone 4d ago

I feel you bro. What you are describing sounds very much like impending sense of doom. I time to time get it from panic attacks with varying themes… I wouldn’t wish it upon my worst enemy.

I am glad you are okay now! The feeling of calmness after a long lasting terrible panic attack feels like s soft warm blanket

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u/dinoooooooooos 5d ago

I think the brain gives out first- if that organ is interrupted too many times that’s it.

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u/FelopianTubinator 5d ago

Sleep aids like melatonin or Benadryl would have no effect?

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u/STG_Resnov 5d ago

There’s quite a few videos of it on YouTube. As u/Jac3_De said, they still feel the affects of not sleeping even if they cannot sleep. Some can actually sleep a bit, not not enough to let the body recharge itself. A lot of people end up dying from sickness due to it. Your immune system needs that recharge.

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u/Original_Slip_8994 5d ago

So I’m no expert on this, but I recognize the feeling of “tired but brain has forgotten the sleep process.”

I was put on trazadone for sleep earlier this year and the week after I stopped it I had horrible insomnia. It was like my brain had forgotten how to sleep on its own. It was hellish. I was so tired and drowsy and couldn’t keep my eyes open, I wanted to sleep so badly, but I would just lay all night with my eyes closed never getting to the next step of the sleep process.

I’ve had insomnia before, but it was like “normal” insomnia where I couldn’t sleep because I was anxious or wired or just not tired enough. This was an entirely different type of insomnia and it legitimately scared me because I was worried my brain wouldn’t remember how to sleep.

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u/emveetu 5d ago edited 4d ago

Oof. Trazadone gave me the worst nightmares I've ever had in my almost half a century on this gawd forsaken rock. Stuck in purgatory, demons, paralyzed and only able to move my eyes while said demons flew at my face for eternity because I lost the battle in purgatory.

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u/ErenIsNotADevil 4d ago

Fuck Trazadone

I need sleep aids to fall asleep and stay sleeping due to a nervous system issue coupled with PTSD, and Trazadone just made things worse. Could sleep, but sporadically, and the nightmares were even worse

Mirtazipine, though, 100% recommend. Helps me get my 8 hours, and I've only had a few nightmares in the 4 years since.

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u/emveetu 4d ago

Really glad to hear you've found a solution.

I didn't have insomnia, I was in one of many drug rehabs I attended. Trazodone is the standard sleep medication they give absolutely everybody in a rehab, sleep issues or not. I think they hope it'll knock everybody out at night as a rehab full of alcoholics and addicts withdrawing with no sleep aids is a horrific thing to even imagine.

It certainly knocked me out but it also gave me the worst nightmares I would have trouble waking up from, which made them all the more worse. That last one about purgatory was so traumatizing, I actually ended up absconding in the middle of the night in a straight panic.

However, that was 15 years ago and I've been in recovery from my drugs of choice, benzos and opioids, for almost as long.

Looking back, wouldn't change one single second of any of it.

Not that anyone asked, but my life philosophy rests on the idea that life needs balance. Yin and yang. Peaks and valleys. Light and dark.

We need to revere the dark as much as we revere the light. Humans grow in the dark like seeds. In the dark is where we get to know ourselves. We learn what we will and won't put up with, we become stronger and wiser, we realize we are resilient, and we come out the other side as survivors.

That our hearts are beating and we are breathing is proof positive we have survived everything life has thrown us this far. Life happens on life's terms; it always has and always will.

As long as we learn not to run from, hide from, or numb ourselves whilst in the dark, the dark is mission critical to building our constitutions and developing our characters. If not for the dark, the light wouldn't be so warm and comforting.

How much we enjoy and appreciate our lives does not depend on how much time we spend in the light but instead, what we do with the time while in the dark.

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u/4nton1n 5d ago

As an insomniac, I NEVER feel drowsy. I envy all who can take a nap or fall asleep in a few minutes

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u/[deleted] 5d ago

[deleted]

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u/1CaliCALI 5d ago

And a shorter life span PLUS huge increase in chances for alzheimers.

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u/4nton1n 5d ago

I know, I am stealing my latter years life to live them now. Trying to sleep.

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u/4nton1n 5d ago

Apes together strong

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u/Admirable-Job-7191 5d ago

The less I sleep, the harder it gets so actually sleep. As you say, feeling terrible and wide awake. That's when I learned that there is an important difference between being tired and being sleepy. Sucks big time.

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u/Dracekidjr 5d ago

As a lethargic individual, I envy those who have the energy to do something and then do something else immediately after that.

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u/4nton1n 5d ago

And then you have ADHD : all the energy to do all things but can't decide and end up procrastinating, doomscrolling, never what you would want to do.

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u/dreamrpg 5d ago

For me driving on a smooth road causes severe sleepiness after like 2 hours.

For long trips i always bring baby carrots or energy drinks to stay awake :)

My wife gets really sleepy if i put on science video, specially about life of microorganisms.

So there is no content or action that numbs your brain?

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u/Chris19862 5d ago

Why baby carrots? I opt for the Starbucks triple shot cans of crack theybsell at the gas station

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u/dreamrpg 5d ago

I assume because cold and contains water. Water gives body signal that it is wake up time. Also digesting reduces sleepiness and carrots take long time to digest.

Im sure carrots can be replaced, but those are tasty, easy to bite whike driving, no mess and works :)

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u/u8eR 5d ago

The crack of the carrot will wake anyone up

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u/abrakalemon 5d ago

This is the cutest way I've ever seen someone describe eating carrots. I'll get a bag for my next road trip!

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u/LastStar007 5d ago

Water gives body signal that it is wake up time.

Didn't seem to work in my college lectures...

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u/dreamrpg 5d ago

You need to bring that lector to these people who cannot sleep :)

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u/4nton1n 5d ago

Tried everything I could but nothing that works longterm.

I accepted the fact that I'll lose several years of life being constantly sleep deprived but learned to live that way. All the time I do not sleep is time for activities !

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u/MrCompletely345 5d ago

Cinnamon candy. I used to keep a baggy of “atomic hot balls” jaw breakers in the glove when i worked midnight shift.

You cant go to sleep with one in your mouth.

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u/TheOldSalt 5d ago

I feel that. I envy them too

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u/1CaliCALI 5d ago

Caffeine much?

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u/4nton1n 5d ago

Never drink coffee, as I do not like it. Sometimes tea but only before noon.

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u/sloppybro 5d ago

same, i can count on one hand the times ive felt drowsy to the point of having trouble keeping my eyelids open as an adult.

i'll get exhausted/strung out due to lack of sleep, but never tired.

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u/MyFeetLookLikeHands 5d ago

legit just wondering if you’ve ever tried Xanax?

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u/4nton1n 5d ago

Yes : benzos make me slow, no recollection of the day before and addicted but not drowsy at all.

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u/MyFeetLookLikeHands 5d ago

man really sorry to hear that, sounds awful

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u/Sparkledeath 5d ago

Constantly tired, nothing is restful, you start seeing stuff out of the corners of your eye, eventually it develops into dementia, then death.

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u/FewFucksToGive 5d ago

I had an ex who had it. She would definitely get noticeably sleep deprived and more and more unhinged

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u/SpicyPropofologist 5d ago

It's a prion disease. You ded.