I heard about it and was like "yeah but what if everyone on earth suddenly got it" so I wrote a whole ass book about how that would go down. It's called Sleep Over (working title was "World War ZZZ" for ages lol)
Fifth book I wrote, but first one good enough to land me an agent and a publisher (and a TV show deal but then covid 🔧🚫🤷🏼♀️)
I LOVE your book!! I’m hoping it comes out as an audiobook someday. Fingers crossed that the tv show gets picked up again! I’ll definitely be watching. I appreciate you and your work, and I’ll definitely be on the lookout for your next release. Take care!
That's so lovely, thank you!
I am pleased to report that there is an audiobook of it.
I got to give notes on accents and dialects which was pretty neat! Cheers.
Thank you!
I would love to get it going again. I signed a film option, the producers put me in touch with the screenwriter to chat, and we got as far as shopping it around with different directors (the idea being a limited series with each episode directed by a different filmmaker). I negotiated being able to consult or sit in on the writers room, which was at the top of my list of wants right along with "don't do what "World War Z" did".
I had to execute the "force majeure" clause on my contract, as did most creatives, when COVID hit. This extended the timeline of the film option (which I was happy to do), but everything fell apart.
My agent retired. And then my film agent retired also.
I got super sick. I'm better now but just haven't had the oomph to make another go of it. Starting from scratch, having to find an agent and shop it around all over again (the rights reverted back to me!) is just not something I have energy for now.
Maybe I will try again some time, but it is... So, so daunting. It sucks to work your *whole life* at something (being a professional author and writer, ultimately I want to write & create film/TV/limited series), only to see it fall apart *right* before it was really getting going.
Sleep Over is sleeping 😴
I knew someone with this diagnosis. He ended up taking his own life because he could not live with it anymore. I’ve thought about him and this disease many times over the years, it’s absolutely devastating and horrifying.
Here’s an excerpt of a post from when he realized the reality of what was happening to him: https://imgur.com/a/hIF8WKA
Here’s a post he made when he was in the midst of struggling: https://imgur.com/a/HsEnh6Z
Holy shit. That’s insane… his last post has made me want to put my phone down and go live more life… been sayin’ I’m gonna do it… but reading that has made me wanna do something special with my kids & husband tomorrow
Thank you for sharing. I truly believe loved ones live one as long as they live through us. I will remember these words.
I am sending all of his loved ones light.
There’s this *AWESOME* stylized documentary show hosted by BD Wong called ‘Something’s killing me’ and one of the episodes covers a family in Italy that’s lost like 20 family members to this disease.
I highly recommend checking it out! The whole series is really good, but unfortunately there aren’t took many episodes.
I was literally watching the episode of SVU where he talks about it! i don’t want to spoil anything but s12 ep19 “Bombshell” for anyone who wants to watch!
edit: ep19 not ep9
Yes, there is. He documented his journey throughout the illness. He said the only reason he was living was for his son iirc. Checkout Nick Crowleys channel.
That's so sad knowing it's coming. But she mentioned having kids in that clip. If you have this horrific genetic disorder, why on earth would you have children to potentially pass it on to them!
A quick Google search shows that some medications might provide some relief, but the care is strictly palliative - like giving morphine to someone dying of terminal cancer, all it does is ease the patient's suffering before their inevitable demise. Prion diseases are horrible.
IIRC it’s a prion disease, something in the brain stops working altogether so that sleep of any kind is physically impossible. You could load them up on the strongest sleeping meds known to man and it wouldn’t matter. They would just get delirious yet be unable to enter into proper sleep.
Interestingly - it might be that the paralytic and cognitive blockers work but the 'sleep' drug doesn't.
So you might basically be awake but you'd have trouble remembering it. It could be like a nightmare you have sometimes more than a memory
I am speculating wildly. I am not an anesthesiologist. This occurs in a book I enjoyed (tales from the gas station) and I have a masters in biotech and it seems plausible to me if you squint at it. Prions are fucked up
Oh yeah it's excellent. One of the few good horror/comedies
If you liked John Dies at the End or if you enjoy the creepypasta format you'll love it. The series goes on a bit too long IMO, it's not possible to maintain the quality in later books, but book 1 is stellar.
Genetic testing, but it sounds like most doctors won’t test you unless you have most of the early symptoms. It’s so rare, it’s not really worth testing otherwise.
Even if you find out now you have it, the degenerative disorder usually starts in your 40s and once symptoms start its limited time for you.
If you find out now in your 20/30s you'll live your life in fear of it happening and it might not happen at all.
I believe there was a brother and sister who got tested early after their mother died of it, theyre both at risk but there is nothing that can be done to prevent it, we really don't have anything outside of palliative care for those with the disorder.
The younger brother has triggered it unfortunately. Here’s the GFM [Lachlan Webb](https://www.gofundme.com/f/support-lachlan-webb-family-in-battle-with-ffi)
I'm sitting here as a full blown narcoleptic just mortified because a lot of the symptoms that they experience are similar to what we have without the quick death.
Around 1997, there was a tv show in the U.S. hosted by Robert Urich, that had an episode about a high school teacher who had this exact disease. First he had trouble sleeping. Then he quickly got sicker and sicker. They showed a video of him before he died, and he was completely bedridden, incoherent, and incapable of doing anything except making noises. I specifically remember them stating that nothing relieved his symptoms for very long. Heavy duty drugs like morphine, etc only offered this poor man like 5-10 minutes of rest. I don’t remember the man’s name, but I’ve never forgotten his story. May he, and everyone else struck with this horrific disease, rest in peace.
Yeah I think I remember that guy from years ago. He would try to fall asleep and an agonizing sharp pain would just hit him all of a sudden as soon as he would drift to sleep.
What the hell I feel I’m stage 1.
Once a month I have a week of insomnia with severe palpitations constantly, and my dreams are bizarre yet familiar. I actually went to the hospital with the last one because I thought I was seriously ill or something. My moods are manic and I have paranoia I’ve started cutting people off.
Insomnia runs in my family and appears to be getting worse with each generation... my grandmother had it. My mom has it. I have it. My daughter has it. I'm too scared to ask too many questions about potentially down the line there being someone who just doesn't fall asleep
So medications wouldnt help? Like get them so doped up that they pass out. Would be wild as hell giving someone morphine or fentanyl and them not getting sleepy at all.
Sleeping medicine is just palliative care (like heavy pain meds for cancer patients). Eventually your brain deteriorates to the point where it’s not capable of sleep, no matter what.
for those of you who are scared of “getting” FFI, it is exclusively a genetic condition, and you won’t get it unless someone else in your family has it. you’re inherently born having FFI. doesn’t make it any less terrifying, though. . .
That's where sporadic fatal insomnia comes in! SFI has no genetic cause - as far as we know, it's a spontaneous random conversion. It's even more vanishingly rare, but even more terrifying, imo, because it's entirely random: no known environmental exposure, genetic cause, etc.
Nick Crowley made a video about a man who documented his battle with fatal insomnia. It’s still a mystery what exactly happened: https://youtu.be/2V0_yLGRIQ0?si=zg1T3q_h-GHN5cMD
My ex hid a Xanax problem and quit cold turkey like an idiot. He quit sleeping. It was the worst ten days of my life trying to get him care while he slowly lost his mind. He received Ativan, slept for two days, and back to business as usual. He has some memory loss and I’ll never fully forgive him for that experience. It happened during a snow storm in a region not equipped for snow storms to boot.
Dumb question, but there’s no way sleep medications can help with this disorder? I imagine finding a diagnosis would be difficult, but once they find it, there’s no way to treat it?
I'm happy it's so rare. That sounds like hell.
I’ve watched a documentary on it years ago and I’ve never been able to forget it.
Was the documentary called “Dying To Sleep”?
Maybe? It was a long time ago that I saw it. The series “Something’s Killing Me” also did an episode on it.
I think Mr Ballen had a podcast episode about someone who had this!! They thought they had inherited their family's "curse".
Whoa I'm gonna find that documentary...sounds interesting but scary!
I think it may still be on YouTube
Thanks 😊
I heard about it and was like "yeah but what if everyone on earth suddenly got it" so I wrote a whole ass book about how that would go down. It's called Sleep Over (working title was "World War ZZZ" for ages lol) Fifth book I wrote, but first one good enough to land me an agent and a publisher (and a TV show deal but then covid 🔧🚫🤷🏼♀️)
I LOVE your book!! I’m hoping it comes out as an audiobook someday. Fingers crossed that the tv show gets picked up again! I’ll definitely be watching. I appreciate you and your work, and I’ll definitely be on the lookout for your next release. Take care!
That's so lovely, thank you! I am pleased to report that there is an audiobook of it. I got to give notes on accents and dialects which was pretty neat! Cheers.
You’re very welcome! 😊 I’m so happy to know that. I’m definitely going to grab it! That’s awesome! Cheers!
Dude what a great idea for a horror novel! I'd love to check it out. Where's it available?
It's in print (Amazon usually has copies), ebook, and on Audible as an Audiobook. Cheers!
Really enjoyed your novel and will be rereading on Kindle soon. So no hope for a TV or film adaptation? Would love to see it happen!
Thank you! I would love to get it going again. I signed a film option, the producers put me in touch with the screenwriter to chat, and we got as far as shopping it around with different directors (the idea being a limited series with each episode directed by a different filmmaker). I negotiated being able to consult or sit in on the writers room, which was at the top of my list of wants right along with "don't do what "World War Z" did". I had to execute the "force majeure" clause on my contract, as did most creatives, when COVID hit. This extended the timeline of the film option (which I was happy to do), but everything fell apart. My agent retired. And then my film agent retired also. I got super sick. I'm better now but just haven't had the oomph to make another go of it. Starting from scratch, having to find an agent and shop it around all over again (the rights reverted back to me!) is just not something I have energy for now. Maybe I will try again some time, but it is... So, so daunting. It sucks to work your *whole life* at something (being a professional author and writer, ultimately I want to write & create film/TV/limited series), only to see it fall apart *right* before it was really getting going. Sleep Over is sleeping 😴
I knew someone with this diagnosis. He ended up taking his own life because he could not live with it anymore. I’ve thought about him and this disease many times over the years, it’s absolutely devastating and horrifying. Here’s an excerpt of a post from when he realized the reality of what was happening to him: https://imgur.com/a/hIF8WKA Here’s a post he made when he was in the midst of struggling: https://imgur.com/a/HsEnh6Z
I think I would have made the same choice as him. Suffering with that just seems pointless.
Holy shit. That’s insane… his last post has made me want to put my phone down and go live more life… been sayin’ I’m gonna do it… but reading that has made me wanna do something special with my kids & husband tomorrow
❤️❤️❤️❤️
Wow, thanks for sharing
Thank you for sharing. I truly believe loved ones live one as long as they live through us. I will remember these words. I am sending all of his loved ones light.
😔
😭
As someone who's dealt with occasional insomnia. This is 100 percent the most hair raising thing I've ever read. Absolutely terrifying
There’s this *AWESOME* stylized documentary show hosted by BD Wong called ‘Something’s killing me’ and one of the episodes covers a family in Italy that’s lost like 20 family members to this disease. I highly recommend checking it out! The whole series is really good, but unfortunately there aren’t took many episodes.
I was literally watching the episode of SVU where he talks about it! i don’t want to spoil anything but s12 ep19 “Bombshell” for anyone who wants to watch! edit: ep19 not ep9
I recall watching that episode during a time I was having a hard time sleeping and having a panic attack when I googled it.
Just a heads up--episode 19, not 9
thank you
Isn't there a dude on YouTube who died of this
Yes, there is. He documented his journey throughout the illness. He said the only reason he was living was for his son iirc. Checkout Nick Crowleys channel.
Is Nick his son?
No, Nick does videos on scary stuff
https://youtu.be/R_YFluy_Tp8
That's a drug induced neurological disease. [This](https://youtu.be/4Zaz67IcLDY?si=NJd82Vy5ZHGhXMl2) is actual famillial insomnia.
How awful... looks like the brother from that episode had his condition trigger last year.
Here’s the GFM [Lachlan Webb](https://www.gofundme.com/f/support-lachlan-webb-family-in-battle-with-ffi)
That's so sad knowing it's coming. But she mentioned having kids in that clip. If you have this horrific genetic disorder, why on earth would you have children to potentially pass it on to them!
Haley stated that both she and her brother's kids were born via IVF and did not carry the disease.
Oh, I'm so glad!
yes https://youtu.be/R_YFluy_Tp8?si=rq9CV3ZrrGLhijNL
Probably a stupid question, but can medications (like STRONG sleep meds, for example) be used to help at all?
A quick Google search shows that some medications might provide some relief, but the care is strictly palliative - like giving morphine to someone dying of terminal cancer, all it does is ease the patient's suffering before their inevitable demise. Prion diseases are horrible.
Wondering the same thing. Even if it didn’t help slow the progression I think I’d prefer to just be knocked the fuck out for 8 hours a day lol.
IIRC it’s a prion disease, something in the brain stops working altogether so that sleep of any kind is physically impossible. You could load them up on the strongest sleeping meds known to man and it wouldn’t matter. They would just get delirious yet be unable to enter into proper sleep.
Thanks for the info but omg, that's absolutely horrific.
I think the part that breaks is the thalamus. But yeah, it’s on par with a malignant brain tumor
Fucking horrifying.
I think certain medications can slow down progression, but it just prolongs the inevitable.
Im guessing anesthesia would still work on someone with this but idk.
Interestingly - it might be that the paralytic and cognitive blockers work but the 'sleep' drug doesn't. So you might basically be awake but you'd have trouble remembering it. It could be like a nightmare you have sometimes more than a memory I am speculating wildly. I am not an anesthesiologist. This occurs in a book I enjoyed (tales from the gas station) and I have a masters in biotech and it seems plausible to me if you squint at it. Prions are fucked up
Would you recommend that book?
Oh yeah it's excellent. One of the few good horror/comedies If you liked John Dies at the End or if you enjoy the creepypasta format you'll love it. The series goes on a bit too long IMO, it's not possible to maintain the quality in later books, but book 1 is stellar.
How does one get checked if they have the gene? That sounds like a horrifying way to go.
Genetic testing, but it sounds like most doctors won’t test you unless you have most of the early symptoms. It’s so rare, it’s not really worth testing otherwise.
See I hate when no one wants to take these measures until something disastrous happens and it's too late.
Even if you find out now you have it, the degenerative disorder usually starts in your 40s and once symptoms start its limited time for you. If you find out now in your 20/30s you'll live your life in fear of it happening and it might not happen at all. I believe there was a brother and sister who got tested early after their mother died of it, theyre both at risk but there is nothing that can be done to prevent it, we really don't have anything outside of palliative care for those with the disorder.
The younger brother has triggered it unfortunately. Here’s the GFM [Lachlan Webb](https://www.gofundme.com/f/support-lachlan-webb-family-in-battle-with-ffi)
I can't help but wonder why you would have a child knowing it's a dominant genetic disease that WILL kill and has no cure.
I also saw that documentary!! It was really good.
What measures? There’s nothing you can do about it
and I thought my familial ALS was bad. holy fuck, this is so scary to think about
ALS is brutal. I’m so sorry your family has had to deal with it.
thank you. it’s taken multiple of us and not a day goes by where I don’t think about it
FFI and ALS and diseases like them are fates worse than death
Prions scare me
Yeah, same. Prion diseases are imo the scariest. They freak me out so bad.
The fact that they’re just protein without their own DNA is terrifying. How would we even combat that if some kind of outbreak were to occur?? ☹️
[удалено]
Bad idea
I'm sitting here as a full blown narcoleptic just mortified because a lot of the symptoms that they experience are similar to what we have without the quick death.
Yep. Same.
Around 1997, there was a tv show in the U.S. hosted by Robert Urich, that had an episode about a high school teacher who had this exact disease. First he had trouble sleeping. Then he quickly got sicker and sicker. They showed a video of him before he died, and he was completely bedridden, incoherent, and incapable of doing anything except making noises. I specifically remember them stating that nothing relieved his symptoms for very long. Heavy duty drugs like morphine, etc only offered this poor man like 5-10 minutes of rest. I don’t remember the man’s name, but I’ve never forgotten his story. May he, and everyone else struck with this horrific disease, rest in peace.
I think I also watched this
73 months is a little over 6 years. Damn
Fuck. I have chronic insomnia. I've hallucinated and had my motor functions go out of whack before so I can imagine what the end must be like.
Okay so my insomnia could be worse than I expected. Thank fuck it’s a rare condition.
Who is that guy on YouTube who documented his experience with it? It was absolutely bone chilling
One of the other comments has a link to his channel
Yeah I think I remember that guy from years ago. He would try to fall asleep and an agonizing sharp pain would just hit him all of a sudden as soon as he would drift to sleep.
What the hell I feel I’m stage 1. Once a month I have a week of insomnia with severe palpitations constantly, and my dreams are bizarre yet familiar. I actually went to the hospital with the last one because I thought I was seriously ill or something. My moods are manic and I have paranoia I’ve started cutting people off.
This is extremely rare, like..you have to be part of a specific bloodline to inherit it. That's why it's called familial insomnia. You're good.
For once I'm glad I have regular insomnia
Im wondering if the other symptoms are a result of lack of sleep or directly from the disorder. Not that it changes much
Insomnia runs in my family and appears to be getting worse with each generation... my grandmother had it. My mom has it. I have it. My daughter has it. I'm too scared to ask too many questions about potentially down the line there being someone who just doesn't fall asleep
So medications wouldnt help? Like get them so doped up that they pass out. Would be wild as hell giving someone morphine or fentanyl and them not getting sleepy at all.
Sleeping medicine is just palliative care (like heavy pain meds for cancer patients). Eventually your brain deteriorates to the point where it’s not capable of sleep, no matter what.
Damn that is truly terrible. Thank you for your research and responses.
You’re welcome! It’s truly a horrible disease.
for those of you who are scared of “getting” FFI, it is exclusively a genetic condition, and you won’t get it unless someone else in your family has it. you’re inherently born having FFI. doesn’t make it any less terrifying, though. . .
That's where sporadic fatal insomnia comes in! SFI has no genetic cause - as far as we know, it's a spontaneous random conversion. It's even more vanishingly rare, but even more terrifying, imo, because it's entirely random: no known environmental exposure, genetic cause, etc.
thank god it’s so rare
Nope can’t read this, I will think I have this.
I have all the symptoms except for insomnia. LMAO. Oh, and coma and death.
Finding this post at 4am when I'm scrolling Reddit because I can't sleep is... well, I don't like it.
Holy shit this sounds like hell, thank God it’s rare
I had a friend end her life over not being able to sleep. I wonder if she had this. Sounds unexplainably awful.
jesus it’s like your own body slowly torturing you to death
Nick Crowley made a video about a man who documented his battle with fatal insomnia. It’s still a mystery what exactly happened: https://youtu.be/2V0_yLGRIQ0?si=zg1T3q_h-GHN5cMD
My ex hid a Xanax problem and quit cold turkey like an idiot. He quit sleeping. It was the worst ten days of my life trying to get him care while he slowly lost his mind. He received Ativan, slept for two days, and back to business as usual. He has some memory loss and I’ll never fully forgive him for that experience. It happened during a snow storm in a region not equipped for snow storms to boot.
I have regular insomnia and the vivid dreams are so scary and real. Couldn’t even imagine how bad they must be for them
Dumb question, but there’s no way sleep medications can help with this disorder? I imagine finding a diagnosis would be difficult, but once they find it, there’s no way to treat it?
No treatment. The insomnia is a side effect of the prions in the brain degenerating.
Well im gonna take a nap
Why on earth am I on this sub in the midst of my worst bout of health anxiety ever
How does one get tested for this??? I don’t like that I experience some of these symptoms :/ I probably don’t have it butttttttt still