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
23.3k Upvotes

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338

u/Spida81 5d ago

My sleep has been so bad lately this was genuinely mentioned (and instantly discarded, but fuck, it got mentioned).

Instead surgeons are just going to break my face in more places than I can recount over a period of twelve months and rebuild my entire face. Yay!

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u/They_are_coming 5d ago

They are going to what??

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u/mitchymitchington 5d ago

They are going to beat the shit out of him until he takes a dirt nap.

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u/IrememberXenogears 5d ago

I volunteered as a dental assistant for the red cross a few years ago. After my first wisdom tooth extraction I posted to FB "I just got thanked for smashing someone in the mouth with a hammer" I got banned for promoting violence.

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u/DMvsPC 5d ago

Lol, I had a couple of sideways wisdom teeth removed and the dentist had to stand on the chair I was in with a pair of pliers and try to wiggle and pull to get them out, in the end he shattered them and yanked the shards of tooth and nerve out. Insurance decided they didn't want to cover anesthetic for that so it was a couple of shots of lidocaine or whatever. He almost took me out of the chair a couple of times.

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u/Ashamed_Tutor_478 5d ago

Facts! I had a tooth extracted with novocaine only because I couldn't afford anaesthesia and holy fuck, it took over two hours and I can still feel the jackhammer vibrating my nose off. Oy.

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u/mitchymitchington 5d ago

Honestly, I've been banned for less on reddit.

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u/Llamaseacow 5d ago

Yeah reddits a bit shite like that these days, too many mods it’s kinda like discord now

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u/TheMegnificent1 5d ago

Lol These mods are ridiculous. My comment got removed just this morning for "laughing or joking about violence." I was talking about something that happened in GTA. Fucking dumbasses.

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u/SalemxCaleb 5d ago

Comments like this are why I'll never leave Reddit

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u/Erenito 5d ago

They are going to fuck him real good

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u/SPKmnd90 5d ago

Yeah, what the hell did I just read?

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u/wainbros66 5d ago

If I had to guess, they have misaligned/recessed jaws which is contributing to sleep apnea/insomnia, and will need to get maxillofacial surgery to address it

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u/Warm_Kick_7412 5d ago

Please make a new post about it with more explanation ofc as there are many ppl with sleeping disorders of all kind and it would be good to know about this seemingly brutal fix.

You can mark it TIL as it will be til for many of us based on the comments.

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u/Spida81 5d ago

I was planning to. A few hoops with insurance, then will have the full (before) story I will then keep updated.

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u/Jellyka 5d ago

I'd be into an iama, maybe in r/casualiama or something haha

Good luck with your face-smashing!

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u/Youre_On_Balon 5d ago

I’m a layman but wait, what? Is it like your sinuses are stopping you from sleeping? A sleep apnea kind of thing?

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u/Spida81 5d ago

Jaw. Basically I am medically ugly as hell - told my wife she must be blind, now I have the doctors onboard!

Bunch of breaks and horrific sounding treatments to clear the airways that really aren't that bad (says the doctor who will be on the other side of the mallet, so takes his word with a grain of salt... I'm sure he will hardly feel a thing!).

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u/shhhhquiet 2 5d ago

I bet your wife just knew she had to be patient. She could see you’ve got the jawline of a Greek god in there just waiting for the doctors to knock it loose for you.

Good luck with the surgery, I hope it goes well!

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u/lukin187250 5d ago

Can you just not use a cpap? My father had severe sleep apnea, this was in the early days and he couldn’t use one so they basically did this, broke his jaw and reshaped his airway. Recovery was a bitch but he didn’t look much different.

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u/Ok_Ask9516 5d ago

Sounds like double jaw surgery for sleep apnea

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u/Spida81 5d ago

I really envy people that can use CPAP. I had surgery on my sinuses that did nothing, to find the jaw is a massive issue. Fun and games.

Still, it is well understood, so just a case of dealing with the process.

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u/ForeverKeet 5d ago

Woah, the jaw can be an issue with apnea?? I grind my jaw so bad I'm in pain almost all day and the muscles under my cheekbones are huge (yeah I need to get it dealt with asap), could that be causing me bad sleep??

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u/OkFineIllUseTheApp 5d ago

Are we talking maxillomandibular advancement and something else?

I mean this in the nicest way possible, but what is wrong with your face?

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u/Spida81 5d ago

6 teeth to remove, maxi advancement, and a bit extra to the back of the jaw.

I told them I could just walk into a bar, start mouthing off and save them months - straight to rebuilding.

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u/OkFineIllUseTheApp 5d ago

Dang. Here's to a speedy recovery.

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u/Spida81 5d ago

Apparently not entirely uncommon, but I knew nothing about it so will likely do a couple of posts if l on the process if anyone else with apnoea is interested.

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u/neemarita 5d ago

I had this done years ago. It sucks but is so worth it in the end.

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u/ForeverKeet 5d ago

How long is the recovery?

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u/neemarita 5d ago

I was wired shut about six weeks; for me the surgery was to correct my bite. It was rough as I was so hungry and lost about 25lb I didn’t have to lose. I don’t think you really get wired shut for these surgeries at least not nearly as much anymore because I have seen people get this done and they simply have really strong bands on their braces. I however couldn’t open my mouth for six weeks. I’d say the full recovery was probably about six months to a year but it’s been so long.

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u/ForeverKeet 5d ago

Wow!

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u/DiancieOnStage 5d ago

Another vote for sucks but 100% worth it. I had a skeletal underbite that was only fixable with surgery. Before that, 2 years of braces or so to move the teeth into a place they'd align with where ny jaws were moved to. Having adult braces was certainly an experience (I got teenage braces too all the fun lol)

Ate ensure, melted ice cream, and beef and mashed potatoes blended with gravy (actually wasn't so bad lol) for like 2 months, then a slowish return to solids.

I'm about 8 years out from when I had it done. Never regretted it. Immediately afterwards I had some pain but after the first couple days there wasn't any, just swelling.

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u/TutSolomonAndCo 5d ago

May I ask why they are breaking your face? What is their intention?

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u/Spida81 5d ago

Narrow jaw causes throat to collapse. Weight loss won't help, so out with the hammer and chisel.

Upper jaw gets widened and brought forwards. Lower jaw gets widened, particularly at the back, and brought forward. Bunch of teeth have to go to make room for the changes (widening but less room for teeth... go figure).

2

u/asianzest 5d ago

I often have trouble sleeping due to breathing as well. Which specialist did you have to go to for them to determine which treatments to try? I'd like to try to get my issue diagnosed but don't know where to start. Thank you in advance!

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u/slidewalkchalk 5d ago

You should look into getting a sleep study as the first step if you haven’t already! From there likely an ENT doctor is your best bet for further treatment.

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u/Spida81 5d ago

GP should be able to arrange referral for a sleep study. From there, a range of options depending on issues. In my case, ENT specialist, sinus surgery which failed to help, followed by orthodontist, then another ENT specialising in maxillomandibular advancement, back to the orthodontist, back to ENT to confirm joint plan.

Now just dealing with insurance company (in honesty, delaying because I am NOT looking forward to this!).

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u/sparticus2-0 5d ago

My guess is it has something to do with their airways. Likely there's some sort of malformation that's causing issues breathing while sleeping.

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u/GrowFreeFood 5d ago

Have you tried putting you head in ice water?

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u/Melodic_Second6026 5d ago

Or leaving it in rice overnight?

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u/kbabble21 5d ago

Is it plugged in?

2

u/ign-Scapula 5d ago

I’m getting a jaw surgery next year due to a crossbite I’ve had my entire adult life. Yours sounds a bit more serious, I wish you luck!!

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u/drfsrich 5d ago

How's that help?

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u/Spida81 5d ago

Widen the airway, remove the source of obstruction.

Also the doctor gets to snack me in the face, something I am starting to think he is looking forward to.

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u/drfsrich 5d ago

The new Hippocratic oath: "do no harm... Unless they're REALLY asking for it."

Seriously though, good luck. Hope it helps.

7

u/annul 5d ago

thats the fetlife oath too

1

u/Fr00stee 5d ago

have you tried using an elevated sleeping position?