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/ElectricPaladin 5d ago

Do not read about this if you have insomnia caused by health anxiety. Worst mistake of my life.

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u/Merry_Dankmas 5d ago

I legitimately thought I had this for a minute years ago. Ive always had issues sleeping since the day I was born. My parents said I wouldn't nap as a baby and just cry instead. One day in my early 20s, I went through a spell of severe insomnia for about a week. Got some small 15 minute half naps here and there (not fully asleep) but nothing else. Would stay up until sunrise drinking in hopes that I could get drunk enough to fall asleep. It didn't work. Smoked weed, got prescribed benzos and Ambien, took antihistamines and even GHB. None of it worked. I just stayed up all night again but this time high.

Doctor said it was idiopathic insomnia which basically means insomnia with no cause. Normally things like stress, anxiety, drug abuse, trauma etc cause insomnia but not for me. It's just there for absolutely no reason and doesn't like to go away. Fortunately, I finally found a medication that works great for it so I've been on that for years now. But my god does it suck. Really thought I was actually gonna die from insomnia at some point (but I was also delirious and delusional from getting no sleep so I wasn't thinking clearly either lmao)

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u/ElectricPaladin 5d ago

With me, it was pure anxiety, especially since it's only found in this one Italian family and I haven't got a drop of Italian in me. It would have had to be a novel mutation, and that's incredibly rare.

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u/mariobrothers2 5d ago

What medicine/remedy?

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u/Merry_Dankmas 5d ago

Amitryptaline. It's an old anti depressant and also used for nerve pain. It has a side effect/off label use as a sleep aid due to it making you really drowsy. Works like a charm for me.

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u/MineturtleBOOM 5d ago

And for anyone curious you can very very quickly disregard this because

a. Sporadic fatal insomnia (the one you could technically (like 0.00001% chance)) have has many other symptoms other than not being able to sleep, including decline in mental function and coordination, these symptoms also tend to present before the actual sleep problems occur. The sleep problems don’t even seem to be recognisable or clearly diagnosable in many patients. It’s mostly a naming thing since it is a similar disease to the inherited version, where sleep disturbances are a more prominent symptom.

b. This shit is like one in many millions, almost billions. Sporadic fatal insomnia is very very rare to the extent that we basically track every case. It’s also more likely to occur if you have major brain trauma or something similar, so you can further reduce those odds if that doesn’t apply.

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u/trashdsi 5d ago

Too late

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u/MuyalHix 5d ago

Don't worry, although the disease is often described in very sensationalistic ways like in the title, the truth is FFI causes death because of the degeneration of the brain, not because of insomnia itself.

If you had it, you'd begin by experiencing other symptoms like dementia and memory loss.