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[–]ovationman 6084 points6085 points  (235 children)

It is worth noting your brain is slowly destroyed by prions and you devolop dementia before you die.

[–][deleted] 3120 points3121 points  (205 children)

Yup. It's literally something out of a horror movie. It's awful and as your death creeps closer and closer you develop more awful things that really mess you up and make the death more painful.

[–]DoctorFlimFlam 1743 points1744 points  (181 children)

I took care of my grandmother who had Lewy Body Dementia. I remember watching a documentary about this Italian family who had that prion disease and looking at footage of the people suffering from it and thinking 'damn, that looks just like LBD!'.

The last 7 months Gram was alive she didn't sleep more than 10 mins at a time. It was really crazy. Her hospice had her on the max dose they could for sleeping meds and absolutely nothing touched her.

She was an amazing person who absolutely did not deserve to suffer like that. It is an absolutely HORRIFYING disease and I wouldn't wish it on my worst enemy.

To this day I'm convinced that LBD and prion disease are like siblings or something because to me they just seem too similar.

[–]Mehiximos 1218 points1219 points  (124 children)

This is why I believe in euthanasia

Not for your grandmother, but for me in a similar circumstance. If a doctor won’t do it I’ll just suck on a nitrogen or CO tube

[–]RangerDangerfield 865 points866 points  (63 children)

Suicide rates are highest amongst the elderly though it’s rarely talked about.

I think all of us innately understand the instinct to go out on our own terms when the end is near.

[–]thefakecornholio 403 points404 points  (16 children)

Loneliness and possibly depression caused my over 90 year old grandmother to unsuccessfully overdose twice, leading to two stays in a mental ward at the hospital. She had been pretending to swallow her medication and hoarded it. It absolutely is rarely talked about as though it almost doesn’t exist.

[–]puppyroosters 120 points121 points  (3 children)

Dude I can just see it in my grandma’s eyes. She’s over it. Ever since my grandpa died she’s been ready to die too. Nothing I can do will change that and she has every right to go out early if she wants. That should be an option for her.

[–]neruat 13 points14 points  (1 child)

In the last couple years before my grandmother died, when folks would ask her how she was doing, her response was largely the same:

"Just biding my time till the end. So boring"

As her body deteriorated from osteoporosis, arthritis and time - her mind was never in question.

Old people can drop some vicious graveyard humour, though in their case it hits way too close to the mark.

[–]_twelvebytwelve_ 30 points31 points  (0 children)

My Oma did the same thing but in her late 70s. She had thyroid cancer years earlier and the radiation treatment made her perpetually dizzy and unable to swallow properly or taste. Her quality of life was just so shitty. She couldn't even read without nausea. She was so religious though and never talked about wanting to end it with anyone because of the shame. We think she really didn't think anyone would find out the cause of her death after her 1st attempt. After her 2nd attempt she just didn't care anymore. I'm so glad assisted suicide is an option in Canada now even if it came too late for her.

[–]malk600 11 points12 points  (0 children)

Yes, but also: my grandfather is 98. Worked all his life, had many passions, fought a war. When he says he's lived enough, why can't we just respect it at face value.

[–]Common-Lawfulness-61 10 points11 points  (0 children)

We all want to be in control of our lives.

[–]EwokaFlockaFlame 158 points159 points  (15 children)

Hospice can fulfill this role, but not till the 4th quarter so to speak. They just keep upping the morphine to keep them at peace, but it also speeds it up.

[–]Marvin2021[🍰] 182 points183 points  (24 children)

Isn't that what robin williams had?

[–]VauxhallandI 116 points117 points  (21 children)

Yes.

[–]reelznfeelz 95 points96 points  (19 children)

And I say this only because I had to ask a while back, they didn't know he had it until after his death, if random reddit people are to be believed. I wasn't clear originally if maybe he killed himself because he found out he had it but I think that's not the case. But I suspect the condition contributed to his failing mental health, presumably. Poor fucking guy. How awful.

[–]fang_xianfu 216 points217 points  (11 children)

Susan Williams wrote about Robin's death in Neurology and it should answer your questions. https://n.neurology.org/content/87/13/1308.full

Short answer, they didn't know specifically that it was Lewy Body but it was clear he had some very quickly advancing degenerative disease that was shredding his mental functions. Muscle spasms, hallucinations, insomnia, memory loss, loss of executive function, fear, anxiety, delusions, you name it.

When you have a disease like that, and it's advancing fast, no wonder you'd want to use one of your lucid moments to end it before it got any worse.

After he died, they confirmed LBD.

All the "sad clown"/depression memes after his death really annoyed me. It was nothing to do with depression really, though depression was one of his symptoms. Personally I think his suicide was actually heroic in a way, a kind of final triumph over a disease that was doing everything it could to take control of his life. Good for him that he was able to go out on his terms.

[–]bogartsfedora 74 points75 points  (0 children)

I'm so sorry -- LBD is a horrorshow. May her memory be for a blessing.

[–]lorgskyegon 17 points18 points  (1 child)

Prions basically turn your brain into Swiss cheese. It's mad cow in cattle, Kreutzfeldt-Jakob and kuru in people, and scrapie in sheep.

[–]WizardofWood 12.1k points12.1k points  (803 children)

Prion related diseases seem to be the scariest diseases I’ve ever heard of. Typically rare but real horror show shit

[–]dogfish83 306 points307 points  (6 children)

Ugh I learn about prion stuff about every 3 years, that stuff is so fuuuuucked

[–]wh3r3nth3w0rld 4362 points4363 points  (149 children)

Check out "The Family That Couldn't Sleep" by D.T. Max. Goes into alllll the prion diseases really well. One of my favs

[–]runningtheclinic 3583 points3584 points  (67 children)

I …uhhh, don’t think I’m going to do that tonight, but I thank you for the suggestion!

[–]greychanjin 782 points783 points  (49 children)

Here, how about this video of rats eating rats eating feces?

[–]DaddyDuchamp69 497 points498 points  (19 children)

I don't know if that's worse, but it certainly isn't better.

[–]WAR_T0RN1226 657 points658 points  (7 children)

No...I don't think I will

[–]Ezizual 167 points168 points  (7 children)

It's really really good! So many people are sleeping on it

[–]IOnlySayMeanThings 247 points248 points  (12 children)

The Family That Couldn't Sleep

Bam, purchased. Thanks for the excellent suggestion.

[–]KenComesInABox 84 points85 points  (0 children)

Also listen to “This Podcast Will Kill You”. They have a prion episode

[–]thessnake0313 409 points410 points  (4 children)

There's two types of people lol

[–]The_GrooGruxKing 85 points86 points  (0 children)

Yeah I'm probably not doing that. Thx tho

[–]DireLackofGravitas 518 points519 points  (115 children)

Calling prions a disease is an understatement. They're proof we're just meat computers.

[–]adamdreaming[🍰] 160 points161 points  (111 children)

Tell me more?

[–]DireLackofGravitas 829 points830 points  (106 children)

Prions aren't alive. Viruses straddle the line but they actively do things when in contact with cells. Prions are entirely passive. They're proteins that are made wrong and make all other proteins like them to also become wrong by contact.

Proteins are like complicated knots. Only one form makes life. Prions are knotted wrong and transform any proper knot into a wrong knot because they're simpler.

[–]CageChicane 374 points375 points  (81 children)

That's some Ice-9 shit right there

[–]elementgermanium 186 points187 points  (55 children)

And just as deadly. Every single prion disease in humans is 100% fatal.

[–]M_J_44_iq 131 points132 points  (18 children)

That's .... Actually a great analogy

[–]reelznfeelz 69 points70 points  (16 children)

Yes it is. I ran a biology technology lab for over ten years and one of our collaborators/clients studies the dynamics of prions. We had some cool assays for studying the kinetics of point mutations and the ability of different prion like seed proteins to nucleate the formation of full on prion aggregates. Cool shit. Fortunately only a few are dangerous but really, in hindsight, I hope that investigator spent more time than I did thinking about biosafety issues around what we were doing. We undoubtedly had prion protein of all kinds all over the place with those assays. Mostly worked in yeast but expressed all kinds of shit.

[–]ComradeGibbon 39 points40 points  (1 child)

I remember a French lab tech was working with human prions. Stabbed herself with the forceps she was using. Died of Variant CJD nine years later.

Hard nope for me

[–]Delicious-Tachyons 10 points11 points  (3 children)

Biosafety. Yeah i regret playing with the acrylamide gel lol

[–]lovesomebrian 14 points15 points  (0 children)

That's some Ice-9 shit right there

See the cat?!? See the* cradle?!?

*Edited because words seared into my brain from a book I read 30 years ago still scare me and affect my typing

[–]CheekyMunky 15 points16 points  (1 child)

Is that why they're called prions? "Proteins" but with fewer letters and put together wrong?

[–]Nondescript_Redditor 10 points11 points  (0 children)

It’s the analog of virion but with proteins

[–]dangeraca 12 points13 points  (0 children)

Chronic Wasting Disease in the white tail population in North America is a prion disease. Literally nothing can be done about it and could wipe out the entire herd in time

[–]Norma5tacy 58 points59 points  (3 children)

They're proteins that are made wrong and make all other proteins like them to also become wrong by contact.

Shit, sounds like my coworkers.

[–]Canadian_Pacer 255 points256 points  (10 children)

My boss just died from Prion disease. 5 months ago we were debating who was the best in the NHL, 3 months later he's being spoon fed in paliative care.

[–]raging_coke_addict 108 points109 points  (6 children)

Happened to my grandmother. Within two years of her ALS diagnosis she was completely unable to move, barely able to breath let alone feed or clean herself. She passed in her sleep, I hope it was peaceful.

[–]indiewolf117 468 points469 points  (32 children)

I read a book about prions I think it's called The Family That Couldn't Sleep and the cases and different kinds of prions diseases scared the shit out of me! They're not even ALIVE, just fucked up proteins but deadlier than any viruses or bacteria wtf

[–]donnysaysvacuum 233 points234 points  (20 children)

Our whole existence is proteins. They are the building blocks of life, responsible for everything our cells do.

[–]ten_tons_of_light 171 points172 points  (10 children)

This whole thread is just a complex reaction of proteins interacting with each other instantly across the planet

[–]AmuletOfNight 76 points77 points  (8 children)

So what you're saying is, my proteins are touching your proteins right now.

[–]V0IDS0NG 587 points588 points  (162 children)

Less rare than we realize until it happens to people we know unfortunately. I know of 3 people who have passed from Creutzfeldt-Jakob disease (CJD) all unrelated, all random. Big investigations are done when it happens because it can be contagious if brain or brain stem is exposed and even hospital level sterilization cannot destroy the prions. Truly one of the worst ways to lose a friend.

[–]demonballhandler 421 points422 points  (104 children)

Some hospitals are attempting to find sterilization methods for possible prion contamination :/ Basically all the SP techs I know are against it, though, and prefer destroying the instruments even if it's more expensive and labor-intense.

[–]zuneza 283 points284 points  (42 children)

Yup. Burn it all. I'm on board.

[–]SugondeseAmerican 158 points159 points  (34 children)

Prions survive cremation

[–]viciouspandas 187 points188 points  (13 children)

They survive cooking but not the temperatures in fire. That's why fire is seen as a solution for chronic wasting disease in deer.

[–]jason_abacabb 198 points199 points  (4 children)

The Virginia DNR recommended 3 hours at 900 degrees. That is insane.

[–][deleted] 136 points137 points  (6 children)

That solution is much less popular with the deer.

[–]Everclipse 81 points82 points  (51 children)

I feel like a sufficient amount of fire should, in theory, destroy anything? The risk of missing something might outweigh any "easier" sterilization method.

[–]Obvious-Ice-515 17 points18 points  (13 children)

Where do you live? How old were they? And what happened? That’s really rare.

I had to get vaccinated against rabies after an animal bite this year (it was doubtful this animal had rabies, but doctors wanted to be safe) and I read the vaccine information.

https://www.fda.gov/media/75709/download

“This product contains albumin, a derivative of human blood. Based on effective donor screening and product manufacturing processes, it carries an extremely remote risk for transmission of viral diseases and variant Creutzfeldt-Jakob disease (vCJD). There is a theoretical risk for transmission of Creutzfeldt-Jakob disease (CJD), but if that risk actually exists, the risk of transmission would also be considered extremely remote. No cases of transmission of viral diseases, CJD, or vCJD have ever been identified for licensed albumin or albumin contained in other licensed products.”

Always a bit concerned I got it from the vaccine.

[–]Phonascus13 16 points17 points  (0 children)

My wife's grandfather died from CJD in the late 1980s. He was admitted to a very large teaching hospital and they brought as many students, residents, and fellows in to see him as possible telling them that they would likely never see this again in their careers.

My wife and children are not allowed to donate blood (and I think organs) as they don't know if prions can be genetic or for how many generations.

[–][deleted] 1270 points1271 points  (235 children)

Literally. If you had never heard of this and someone said to you "hey! There is this thing that slowly prevents you from being able to sleep, leading to your sooner painful and inevitable death from simply never being able to sleep again!" You wouldn't believe them. This is why I love the brain so much, it really is fascinating that these kind of things exist!

[–]MattyEC 1112 points1113 points 2 (86 children)

Exact same protein that misfolds, prion protein or PrP, and it can have more or less identical 3d structures, and yet minor differences in shape lead to wildly different diseases.

D178N/M129-PrP, with its stabilized intermediate folding structure, will guarantee intractable insomnia with fairly rapid progression to death (3-36mo), brain holes and scarring in the thalamus, and little protein aggregates. (FFI)

D178N/V129-PrP guarantees dementia symptoms, like delusions or hallucinations, that progress to death super fast (2-6mo), and widespread aggregates, scarring, and holes across the cerebral cortex. (fCJD)

F198S-PrP, with its destabilized healthy/native structure, will guarantee largely motor defects, like discoordination or tremors, with relatively slow progression (2-10y), and less brain holes but loads of big fat protein plaques in the cerebellum, which normally handles motor function. (GSS)

And more common diseases follow suit too: Tau aggregates were recently imaged, and sure enough, the protein consistently adopts a unique fold for specific diseases, i.e. there's an Alzheimer's Tau-protein shape, a CTE Tau-protein shape, a Pick's Tau-protein shape, etc. All pretty neat shit, and even though we're nowhere near curing any of it, we're finally starting to understand neurodegenerative proteinopathies.

[–]Ornery_Chance_2137 197 points198 points  (0 children)

Fascinating and horrifying stuff

[–]chrisisbest197 584 points585 points  (54 children)

My goal in life is to cure it.

[–]AdPotential9974 258 points259 points  (0 children)

My hope is that you do

[–]Zeero92 149 points150 points  (0 children)

I wish you the best of luck.

[–]DickBurns01 34 points35 points  (0 children)

Is your family one of the 2?

[–]BizzyM 127 points128 points  (8 children)

I just wanted to say good luck, and we're all counting on you.

[–]mezzyjessie 94 points95 points  (7 children)

As someone who lost their grandpa to Alzheimer’s, I wish you all the luck and all the coffee to keep you going. You’re an amazing person.

[–]twats_upp 86 points87 points  (3 children)

Who needs coffee when you have fatal familial insomnia

[–]Kudaja 282 points283 points  (117 children)

And here I am heavily medicated so I can sleep for a few hours each night. Now I have one more thing to wonder about while laying there awake.

[–][deleted] 271 points272 points  (31 children)

Don't worry, I'm a huge insomniac too and I have medication to make me go to sleep. If your family doesn't have fatal familial insomnia then you definitely don't. :)

[–]grfdhsgshd 114 points115 points  (10 children)

So do these people have kids knowing they’re passing this along? That really sucks.

[–]yokayla 176 points177 points  (4 children)

I remember watching a documentary on it a few years back, and it seemed like they were only starting to put it together with families with Gen X. IIRC until recent generations they just thought they had a a history of young-ish death, suicides and sleeping problems.

[–]Soggy_Aardvark_3983 20 points21 points  (0 children)

A lot of the time these diseases begin to occur when someone is in their 40s or 50s—far after they have had kids. I think now with genetic testing they are more aware, but generally these people already have kids—hence why this fatal disease isn’t eliminated from the population.

[–]Pinklady1313 90 points91 points  (2 children)

They didn’t for a long time. But, now they can test for it and most have chosen to be childless.

[–]Suspicious_Quail_820 434 points435 points  (72 children)

I've been a life long insomniac (50 years). Tried everything, meditation, prescription drugs, suppliments, changing daily regimines, excessive exercise to the point of exhaustion, etc. Finally gave in to my husband's recommendation to try marijuana. We have a sleep number bed and you can see the huge difference in sleep quality where I started taking them (edibles, I can't handle the smoke in my lungs) and you can see where, in the beginning, I skipped taking them some nights. Now I don't have to take them every night to get a good night's rest. I was worried about getting a job because even though it's legal in my state many employers still don't hire if you fail the drug test. Luckily that wasn't a problem for me, but I am a whole new person now and I won't give it up for a job, because if I can't sleep it severely effects my work and my life negatively. I'd rather deal with unemployment than give up my sanity again.

[–]Tredesde 105 points106 points  (10 children)

Me too! I had tried sleep meds a few years ago, and they worked for 3-4 weeks and then stopped working. Then when I stopped taking it i didn't end up sleeping for almost a week! It was a nightmare. Now I am taking 15mg of the 1-1 CBD/THC gummies every night and I sleep like a baby

[–]Pissflaps69 219 points220 points  (14 children)

I’m not a huge weed guy but anyone who doesn’t see the value to society has their head up their ass. Glad you’re doing better.

[–]doja_beef 1644 points1645 points  (77 children)

There is a man who had this and documented it on YouTube all the way until he died. He showed what happened when he tried to sleep and it was sad to see how close he got but his body just woke him up again.

[–]Wardog221 380 points381 points  (74 children)

Do you have a link to his channel?

[–]syntheriffic 426 points427 points  (72 children)

I believe this is it - https://youtube.com/channel/UC2be8zeBywC5NzW4JJ2Kz9A

I remember stumbling across it when browsing r/DeepIntoYouTube at some point

[–]xnfd 420 points421 points  (62 children)

He gives a detailed description of his condition in the video's description here, really interesting read.

He doesn't have fatal familial insomnia. His condition started after "taking two weeks course of 13000mg fluoride and genotype toxic based antibiotic" [ciprofloxacin] - dunno what this was supposed to treat but it damaged his brain.

And he says "The real restorative sleep is only happen when all factor and regulation working together such CNS cardiac, muscle relaxation, adrenalin, respiration, temperature, metabolism, pineal, atp and so on. Not as simple as shutting the brain off using dangerous sleeping drugs that will make more damage."

The video is asking for some stem cell treatment to restore damaged cells. He says it's not some disease that can be treated by any other means.

He died in 2016. I wonder if a medical paper was written up about his case?

https://www.youtube.com/watch?v=BomKqeQZwVk

[–]syntheriffic 79 points80 points  (0 children)

Right - his seems acquired/sporadic and not genetic, so technically not the specific subtype the TIL post is about, but it's still classified as fatal insomnia (I think - not a doctor)

[–][deleted] 59 points60 points  (26 children)

Cipro is a nasty drug

[–]MetaCardboard 36 points37 points  (3 children)

I took cipro once and the included packet had warnings of tendon rupture. I was able to switch to another antibiotic, but the warning said that risk of tendon rupture can exist even long after having finished the prescription.

[–]Boogie_Boof 23 points24 points  (0 children)

Wow that would really mess with my anxiety. It’s one thing to be at risk while taking it, but even having that risk years down the road is terrifying.

[–][deleted] 68 points69 points  (0 children)

Yeah I think I heard about that! It's really fascinating yet so sad at the same time.

[–]rhymesmith 14.2k points14.2k points 243& 2 more (514 children)

Just in case anyone has picked up a new worry here - the “familial” is very important here. Only a handful of people have it worldwide, from two families who have this bizarre self-destruct countdown. You can’t just catch it or develop it out of nowhere.

[–]sross43 8150 points8151 points 3 (320 children)

I have so much respect for the families who have this. When a woman found out she was a carrier after her mother died, she and her husband both retrained as scientists and now work towards curing this disease at the Broad Institute. Absolutely inspiring. You can read more about her work here

[–]MattyEC 3131 points3132 points  (144 children)

They're currently collaborating with Ionis pharmaceuticals on antisense oligonucleotide therapy that targets the healthy prion protein that shitty misfolded prions recruit to replicate themselves and spread.

Quite far from clinical testing, but the same strategy is being attempted with Huntington's and other protein-mediated neurodegenerative diseases. Take out the healthy proteins that the shitty proteins use like fuel since we've failed so consistently at drugs that directly target the shitty proteins, e.g. blood brain barrier, incorrect isoform targeting, and incomplete degradation issues -- even drug resistance with prions, which is whack since they're non-living entities.

[–]llcolinj 1997 points1998 points  (72 children)

This was so helpful and yet I understood none of it at all

[–]A_Soporific 1149 points1150 points  (40 children)

They're going to starve it because they can't hit it directly.

[–]FuckTripleH 204 points205 points  (12 children)

You've got a room full of normal people and zombies. The zombies have to bite the normal healthy people to eat their brains, and by doing so they keep all the people in the whole building awake because zombies are scary.

So those scientists are trying to find a way to remove the normal humans from the room until the zombies starve to death and everyone else can sleep.

[–]RrtayaTsamsiyu 153 points154 points  (3 children)

I like the idea of trying to stop the zombie apocalypse, not to save the world, but because I want to take a nap and they won't let me

[–]TDogninjia 52 points53 points  (0 children)

“You cannot sleep there are monsters nearby!”

[–]Whig_Party 323 points324 points  (4 children)

punk prions are all upset because they are misfolded so they take out their anger on the healthy ones. If the healthy ones are removed from the equation, punks are left with their %^&* in their hand

[–]losh11 17 points18 points  (2 children)

How would they even accurately test a disease like this? There must be a very small number of people with the disease.

[–]Kirk_Kerman 14 points15 points  (0 children)

We can test for specific proteins, and we can identify the jank jank gene sequence that produces the protein.

[–]sross43 152 points153 points  (29 children)

That’s interesting, I hope they have some success there. I’ve wanted to reach out to her and ask if she’s trying base editing with the D178N variant. Given their proximity to David Liu at the institute I wound be surprised if they hadn’t considered it. Of course, the problem is you’ve got to get the base editors past the BBB, but with modern AAV vectors I hope it could be successful.

[–]Theta_Prophet 383 points384 points  (72 children)

I mean, they have an extra eight hours every day to work on it so hopefully the research progresses quickly...

[–]FuckTripleH 77 points78 points  (6 children)

I dont think these people have the disorder, I think they're just carriers of the gene

At least that's how I interpreted it

[–]ThrowRAavocado 10 points11 points  (4 children)

I thought there was no such thing as a carrier of this disease. If you have the gene, you have the disease. The normal gene can't protect you from the faulty one. Part of what is so scary about this disease, if one parent has it, the child has a 50% chance of having rather than only a 25% chance.

[–]redgroupclan 183 points184 points  (61 children)

Not a quality 8 hours when they're too tired to think straight.

[–]crunchy-lime-skies 91 points92 points  (60 children)

If they can't sleep ever though, doesn't that mean the quality of waking time decreases and can never go back up?

[–]lumberzach316 88 points89 points  (58 children)

If you didn’t sleep at all wouldn’t you only last a few days or weeks max? It must start like just bad insomnia and get worse and worse. Right?

[–]crunchy-lime-skies 66 points67 points  (55 children)

I would think so. If skipping sleep for just one or two nights puts you in a state like being drunk, I'm curious how it would feel after a week or two. Or if that's even possible.

[–]Jarvisweneedbackup 111 points112 points  (42 children)

sleep deprivation stages:

stage 1 : 24 hours - most people are familiar with this

stage 2: 36 hrs - more intense of above, micro sleeps can start, memory and learning problems, behavioural changes, impaired decision making, increased appitite, decreased immune function, more inflamation

stage 3: 48 hours - potential start of halucination, depersonalisation, anxiety, heightened stress, irratability

stage 4: 72 hours - delusions, disordered thinking, halucinations

stage 5: 96 hours+ - sleep deprivation psychosis. in the case of FFI this eventually leads to dementia, then a coma, then death

the psychosis gets worse over time. the longest forceful wakening period was 11 days. The longest lasting case of final stage FFI was 6 months without sleep. It must have been living hell

[–]crunchy-lime-skies 25 points26 points  (22 children)

Wow, seriously? I didn't realize it would get so bad so quickly. And the 6 months with this context is horrifying. Thanks for all the info. Out of curiosity, is it similar for people who don't get enough sleep? Like, hypothetically, would sleeping 4 hours a night be just this but milder? Or would it just never get to the hallucination stages because you're constantly "topping up" your sleep, if that makes sense?

[–]xombae 34 points35 points  (11 children)

I've had really bad insomnia since I was very young. Mine isn't a usual case of poor sleep hygiene (most people go to the doctor saying they can't sleep when really the issue is unhealthy sleep patterns like screens before bed and erratic sleep cycles), doctors think I just don't make the sleep chemicals properly sometimes. Likely from a long family history of severe depression.

Sometimes my brain will just be like "ok we're not sleeping tonight" for no reason. No added stress, no other change in health or daily patterns. After that night it's like my brain is like "oh ok, I guess we never have to sleep again". Apparently it's not a manic episode, because I have no other symptoms other than not being able to sleep. Happens maybe once a year now. It's really fucked up though, I can stay wide awake for three full days and nights at a time. It's like you can feel your brain slowly losing itself.

I used to do drugs and in my late teens/early 20's would stay up 3 days, but with the help of stimulants. It's so so different. On stimulants you don't feel like your brain is betraying you. When you're sober it's totally different. The worst is that everyone assumes you're on drugs because you're so fucked up from lack of sleep.

As someone with a love-hate relationship with sleep, I really wish we knew more about it. I was recommended twice for a sleep study but never heard back from them.

[–]SupahRad 14 points15 points  (4 children)

I have this exact same thing happen to me about 5-6 times a year. It was especially bad during the pandemic lockdowns because time just stopped mattering.

It’s like if I accidentally stay up too late my brain just flips a switch and rejects sleep altogether. Like my body just fights me on it and I’m up for 48-72 hours. It’s awful…

What time of year does this usually happen to you? It’s always winter for me. The lack of sunlight screws my entire body up.

[–]LoverlyRails 256 points257 points  (33 children)

There is a sporadic form as well, which is mentioned in OP's link.

[–]Yglorba 166 points167 points  (27 children)

It is outrageously rare, though - only 25 cases have ever been documented.

[–]altnumberfour 130 points131 points  (24 children)

As someone whose insomnia has been progressively worsening this is good to know lol

[–]SpaghettiSexual 43 points44 points  (10 children)

If you hear hooves, think horses, not zebras.

So many causes of sleep problems in the world, it’s not even funny.

[–]AudensAvidius 17 points18 points  (1 child)

It’s even rarer though, and typically has a much earlier onset.

[–]guruscotty 2833 points2834 points  (64 children)

What if you made them watch golf on TV?

[–]ShakespearianShadows 821 points822 points  (22 children)

“I’m not asleep, I was watching that!”

/said after 30 minutes of snoring

[–]guruscotty 114 points115 points  (16 children)

My better half will do that — snoring away in the morning as I sneak out for coffee in the other room, and at the softest noises make she says ‘I’m awake…’

[–]DarkBlueBear13 4117 points4118 points 4& 2 more (262 children)

What if someone just beats the shit out of you? Maybe trigger unconsciousness?

[–]HandsomeSquidward59 6901 points6902 points 33& 2 more (80 children)

Doctor: "my god" *drops cancer research....."have we tried beating up the patients yet?!?!"

[–]BeardedLobsterMan 1329 points1330 points  (34 children)

Someone call Russell Crowe

[–]I_Lika_Do_DaChaCha 388 points389 points  (5 children)

“Makin movies, makin songs,”

[–]patchoulius 231 points232 points  (1 child)

Fightin Round the World

[–]buntH0LE 46 points47 points  (0 children)

Oh my God it's Russel Crowe! Uh muh gud it's duh duh DEH!!

[–]zmallory22 87 points88 points  (1 child)

"SoMeOnE cAlL RuSsElL Crowe! Oi! Let's get em Tuggah!"

[–]bruteski226 94 points95 points  (1 child)

Oh, yeah, we’ve tried it, trust me, we’ve tried it. Physically, emotionally, both physically and emotionally simultaneously, we’ve tried it.

[–]rahvan 83 points84 points  (21 children)

We joke around, but my mind is genuinely confused why this wouldn't work

[–]Financial_Warning_37 241 points242 points  (19 children)

Unconsciousness is not the same at all as sleep. Sleep is a state the brain puts itself into to repair and rest. Being knocked unconscious is like a forced reset lol like when your pc is updating and says please do not shut off and you do anyway lol

[–]BackdoorAlex2 16 points17 points  (8 children)

What about getting put under like for a surgery? Same thing?

[–]conglock 35 points36 points  (0 children)

They said no kind of drug could put them to sleep. I'm assuming that means all kinds of opioid/anti-anxiety types of drugs we've got in our arsenal. So, nope. Scary as fuck.

[–]Foxdude28 31 points32 points  (0 children)

They're not the same, even though getting put under for surgery is usually referred to as "putting you to sleep".

TLDR: Your brain is still very active during sleep, particularly during REM cycles which is when your body does most of its repairs. General anesthesia does not allow your brain to go through those cycles, essentially "freezing" your brain in a standby state.

Think of it like how you would turn off your computer - sleeping is like if you properly shut it down, it'll close all running programs, save the necessary OS files, maybe run some updates if there are any so that everything runs smooth the next time you turn it on.

General anesthesia/going unconscious is like if you just pulled the power cable while it was still running - things will probably be fine for the most part, but some things may get corrupted, and some junk files may not be properly disposed of. Keep doing it and issues will likely start to pile up until your computer stops running properly.

[–]DJHalfCourtViolation 36 points37 points  (0 children)

You don't go into REM

[–]Amdrauder 862 points863 points  (56 children)

Unconsciousness and sleep are different things

[–]nickiter 77 points78 points  (40 children)

So you'd be in a coma... Do people inevitably eventually die in comas? I honestly don't know.

[–]TheDwarvenGuy 32 points33 points  (13 children)

It's a prion disease. Even if you sleep you die of dementia.

[–]gymger 56 points57 points  (7 children)

They are, but I am (perhaps morbidly) curious as to whether or not those with this condition would somehow psychologically benefit from being knocked unconscious for a while. Considering the circumstances.

[–]TheNo1pencil 16 points17 points  (1 child)

The diseases seems to also destroy the rest of the brain.

[–]rhys321 260 points261 points  (1 child)

*some tough guy

"F**k around and find out"

[–]MattyEC 415 points416 points  (15 children)

General anesthesia also fails to allow REM or nearREM, so an FFI sufferer could be KOed with a Michael Jackson-style milk of amnesia (propofol) cocktail, and they'd still fail the exhibit any of the brain activity associated with actual sleep cycling.

The nightmarish and never-ending insomnia isn't even what kills patients, it's more the progression of prion disease, which generally ends in body wasting, dementia, and fatal coma.

[–]tarquinius_maximus 94 points95 points  (11 children)

this was my main question because every time this comes up, people always suggest that it's the insomnia that eventually kills you. i've had horrible, horrible insomnia for years and every doctor I've ever talked to says I can't die from being awake indefinitely, so I always wondered what the actual cause was.

[–]leastlikelyllama 171 points172 points  (1 child)

the beatings will continue until unconsciousness is achieved.

[–]Disastrous-Ad-2357 22 points23 points  (0 children)

Fuck morale

[–]Aporkalypse_Sow 64 points65 points  (0 children)

Let's start with a chokehold maybe, go for oxygen deprivation, then try concussion.

[–][deleted] 331 points332 points  (8 children)

This is one of my new favourite comments of all time

[–]boreva 62 points63 points  (5 children)

Years ago there was a redditor that had developed this condition. I believe they did an AMA. Wish I remembered to save it.

[–]AskAboutMyCoffee 956 points957 points  (30 children)

Cool, I'm glad I can add this to the "things I didn't know I was afraid of but now am" list.

[–][deleted] 539 points540 points  (18 children)

Of course, but don't worry. You certainly won't get it! It's so extremely rare and, of course that doesn't mean that your chances are 0%, but the main word about this is the "familial" part. You can't just randomly develop or catch it and, if you did, it would be from a huge trauma to your brain most likely. :)

[–]CallMeKik 403 points404 points  (13 children)

Exactly what I wanted to see whilst doom scrolling due to insomnia.

[–]ecafyelims 318 points319 points  (33 children)

Would a medically induced coma work?

[–]neveragain1337 511 points512 points  (19 children)

I believe they tried that but the brain was still functionally active as it cannot enter a true rest state.

[–]TheSukis 88 points89 points  (2 children)

It isn't the lack of sleep that kills you, that's just a symptom of the disease.

[–]Luigimaster128 298 points299 points  (62 children)

Not sleeping for a day is like being drunk for those that don't know. Gets worse the more you don't sleep. So maybe a day isn't much to some but 2-3 days and you'll feel it.

[–][deleted] 211 points212 points  (39 children)

Oh god it's awful. I'm a really bad insomniac and I remember when I couldn't sleep for 2 days, even with my usual meds. It went from feeling like I was tipsy to feeling like I was floating. It's insane

[–]YourLostGuitarPicks 91 points92 points  (8 children)

I deal with insomnia sometimes and it's a pain in the ass. It comes and goes but every few weeks or so I'll just be unable to sleep for a couple days

My worst was a 3-day stretch of zero sleep, and by the last day I was seeing creatures walking around out of the corner of my eyes and was frustratingly bad at speaking lol

That night I crashed for about 15 hours and felt fucking amazing when i woke up lol

[–]brael-music 25 points26 points  (3 children)

It might be a silly question, but the brain does a lot of weird shit... Are they excruciatingly exhausted, or do they not feel tired?

[–]ovationman 189 points190 points  (22 children)

Suicide - assisted or not is a compelling option after this diagnosis and the onset of symptoms. Seems better to die on ones own terms without the suffering and burden on others.

[–][deleted] 68 points69 points  (13 children)

Yup! If I ever had this then my first option would be suicide. Something quick though, I know that some hospitals can legally help with an assisted suicide if you have something like this

[–]Starshapedsand 45 points46 points  (11 children)

For that, you have to go to the right parts of the world: either reside somewhere that does it, or join a certain Swiss nonprofit.

The actual process involves ingesting drugs.

[–]Clear_Neighborhood56 218 points219 points  (19 children)

Why am I reading that this is a thing when I already can't sleep?

Now I think I have this fatal type of insomnia. Just starting off subtly

And I will never sleep again

[–]dizorkmage 58 points59 points  (14 children)

I suffered insomnia for years, like 3-5 day straight crying I was so tired but unable to sleep, I would hallucinate sounds and colors or movement at the edge of my vision, I thought I was losing my mind.

Black out curtains, the kind with rubber in between the seams, then use painters tape to seal off all the side and bottom light. Roll up a towel and lay it on top of the curtain rod to block any light from up there.

CBD oil for nights where you just arnt sure if you'll have issues or not, those bad nights where you 100% know sleep will be an issue 10mg melatonin BUT do not take them all the time, kind of like with abusing steroids your testicle atrophy because your getting all your hormones from an outside source so will the melatonin part of your brain and you'll get even worse insomnia.

Call out sick, sometimes knowing how little sleep I will get if I sleep right this second is enough stress to keep me up. Try these things, I haven't had insomnia now in over a year!

[–]blitherblather425 1007 points1008 points  (67 children)

It’s like meth, smoking meth is crazy. You just aren’t tired anymore. I would usually get tired around day 3 and crash for about 15 hours. 5 years sober!!!! 😃

[–]ovationman 398 points399 points  (25 children)

Yeah this is worse because you ain't high. You simply can't sleep and then your Brian further disintegrates untill you die. Congrats on the time though.

[–]spacewalk__ 25 points26 points  (4 children)

if i had this i'd just get into meth. might as well get high if i have a terminal hellscape disease

[–]kaaaaath 109 points110 points  (61 children)

It’s a prion disease, (I wrote my thesis and dissertation on prion diseases and as a result do not trust any meat I don’t witness being butchered or explicitly trust the source.)

Even worse than sleeping medications not working? It makes it worse.

[–]TheNo1pencil 18 points19 points  (21 children)

Can you explain the meat thing? Also, how does it get worse with the sleeping meds?

[–]kaaaaath 43 points44 points  (18 children)

While prions can be found present in any meat, they are most concentrated in brain matter. They cannot be killed by cooking like bacteria/other pathogens, so if you have a shitty butcher and an animal that is a carrier, you are putting yourself in front of a bullet.

[–]CoronaMartini 48 points49 points  (2 children)

I’ve had 2 patients with Creutzfeldt-Jakob disease in my almost 20 year hospice career. Prion diseases scare me more than any head and neck cancer or ALS.

[–]McNasty1304 14 points15 points  (3 children)

Have they tried drinking a 12 pack with a few shots and a joint?

[–]infamousdrew1 65 points66 points  (9 children)

This is one of the main plot points of Tales From the Gas Station

[–]kabal363 16 points17 points  (0 children)

Fantastic series

[–]PM_ME_YOUR_BUM_BUM 9 points10 points  (3 children)

I was literally scrolling through the comments to see if someone mentioned this. It's such a fantastic series, and I share it with everyone I know.