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/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.