2-Minute Neuroscience: Fatal Insomnia
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- Опубликовано: 21 ноя 2022
- Fatal insomnia is a very rare neurodegenerative disease characterized by progressively worsening insomnia and eventual death. In this video, I explain the symptoms of fatal insomnia as well as what happens in the brain during the disease.
TRANSCRIPT:
Fatal insomnia is a very rare terminal condition characterized by difficulty sleeping that becomes progressively worse over time. Although the disease is typically genetic in origin, some sporadic cases without a clear genetic basis have also been documented. The condition usually begins in middle age or later, and early symptoms include trouble sleeping as well as autonomic nervous system disturbances, such as increased body temperature and increased heart rate.
The disease gets worse over time as the amount of sleep patients get continues to decline. Patients will sometimes lapse into a state of unresponsiveness during which they make involuntary movements that seem to be related to acting out dreams, and they can develop a variety of additional symptoms including difficulties with balance and coordination, trouble speaking and swallowing, hallucinations, and personality changes. Eventually, most patients lose the ability to enter deep sleep at all, and fall into a stupor that it is difficult to rouse them from. This stupor sometimes leads to coma, and the disease is always fatal, with death occurring in just over 18 months on average.
Fatal insomnia is a prion disease, meaning it is associated with the conversion of a protein called prion protein into a form that cannot be broken down. The new pathological form of prion protein accumulates in the brain, and its accumulation is associated with the death of neurons and other pathological changes such as the brain taking on a spongy texture. The neuronal death eventually becomes insurmountable and is linked to the death of the patient. In fatal insomnia, the most severe neuronal loss often occurs in the thalamus and inferior olivary nuclei, but pathological changes are sometimes seen through other areas of the brain such as the cerebral cortex. Damage to the sleep-promoting regions of the thalamus is thought to be especially important to causing the insomnia that occurs in the disease.
REFERENCES:
Cracco L, Appleby BS, Gambetti P. Fatal familial insomnia and sporadic fatal insomnia. Handb Clin Neurol. 2018;153:271-299. doi: 10.1016/B978-0-444-63945-5.00015-5. PMID: 29887141.
Montagna P. Fatal familial insomnia and the role of the thalamus in sleep regulation. Handb Clin Neurol. 2011;99:981-96. doi: 10.1016/B978-0-444-52007-4.00018-7. PMID: 21056239.
Montagna P, Gambetti P, Cortelli P, Lugaresi E. Familial and sporadic fatal insomnia. Lancet Neurol. 2003 Mar;2(3):167-76. doi: 10.1016/s1474-4422(03)00323-5. PMID: 12849238. 
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My future step-daughter passed away 8 yrs ago at the age of 35 . She was misdiagnosed several times. Autopsy diagnosis was Sporadic Fatal Insomnia. It was difficult watching this beautiful, intelligent, strong woman radically change and to eventually realize she wasn't going to survive. Knowing would not have changed the outcome but the way things were done, what she went through would have been drastically different had we known what she had instead of being misdiagnosed several times and being lead to believe different than what actually was happening to her. My heart goes out to anyone who has this. I pray that a cure for this or a way to stop this is found. To those of you wondering if you have SFI because you have insomnia issues....that is only 1 of the symptoms of this disease. It is a prevalent one but there are others. If insomnia is your only issue is isn't likely you have this. If you are truly concerned, see your healthcare provider, tell them your symptoms and your concerns. While this is a good video it doesn't cover this disease in-depth enough to self-diagnose.
I'm sorry for your loss. Was there any other symptoms she displayed? How did it start?
Sorry for your lost do you mind explaining other symptoms
earth is hell
Hello do you mind explaining her other symptoms
Me every time I can't fall asleep in 10 minutes:
Aye, nothing like missing the in between bits, where missing a night of sleep, now is literally the same as a Prion disease. 😂 I’m doing that just now at 5 am as the sun is rising!
@@Looshfarmer Thankfully they invented something called Seroquel. Funnily enough, last week I tapered the Seroquel and had horrible insomnia for 3 days and of course, I started thinking about FFI again. I hate health anxiety.
I feel you 🥲@@maestro9765
@@maestro9765 same
He’s back when we needed him the most!
People shud be made more aware of condition like this
Ty👍🏻👍🏻
*should
Why? This disease is extremely rare, like 1 in hundreds of millions.
Now I have one more thing to worry about that will keep me awake. Thanks a lot.....
I am so sorry, please stay hopeful and fight.
Carrying me through my neuro classes rn. GOAT
Finally... You're back!! Thanks
Prions are fascinating but profoundly frightening, as they are almost indestructible. I have heard of this disease under the name “fatal familial insomnia”.
Great video as always, informative and entertaining! I hope some progress can be made towards finding a solution to this soon
It is also called fatal familial insomnia, but "fatal insomnia" started to be used as a more general term after the discovery of sporadic cases with no family history.
@@Neuroscientificallychallenged ah I see thank you for the info! I wasn’t aware of that, haven’t read about prion diseases in some time
Even in molten steel, cryogenic temperature, or acid?
@@veiserexab1428 not sure about those but it’s been proven to survive autoclaves and extreme temperature I believe maybe acid also
@@aamirrazak3467 then we're screwed
Prions are so interesting, can you make more videos on them?
I agree! Yes, I'm definitely planning on covering more prion diseases in the future.
@@Neuroscientificallychallenged thank you!
Agreed prions are fascinating but also terrifying
This is scaring me.
Wow...this sounds like it really sucks.
Hearing about this, especially the fact that it’s genetic, makes like seem so unfair
oh man, 😭 i remember reading a haikyuu fanfic where one of the characters had this and had totally forgotten about it till now
on a side note, thanks for your vids ❤❤ they are great for revision before exams and have helped me so many times
In another life 😭
@@crazycarleycoo9685 yesss😭😭
I remember reading the Soukoku version of that fic
"A Spring Without You Is Coming"
Easely the saddest fic ive ever read
And most frightening now that i know what this disease does
my sister had Sporadic Insomnia in 2022 she went 3 month with no sleep miss her alot... and she never ever flet sleepy at all
What happened to your sister ?
@@GaryFountainHills she had Sporadic Insomnia she did not sleep the Prions misfold and it killed her sleep drive making it where she cant sleep she passed away in the hospital due to lack of sleep the worst part is she was only 13
@@patkzy I'm so sorry this happened to your sister. Did any sleep medications help her?
@@twodeadpxls yeah she took some meds but it did not help her any with fsi u just stop sleeping theres nothing or anything can help
I strongly doubt the authenticity of this story
welcome back!
Thanks!
I have this. Im hanging strong. CBD and THC and meditation with my diet is keeping me functioning. I found out 13 months ago by that point I was so fatigued it was an effort to speak I was so exhausted. But I made a choice. It helps I may live longer than expected but I have my bad days.
How was it diagnosed?
its still 100% fatal
he is simply lying for getting attention. It’s that easy. I’m sure he is ill, but mentally.
Don’t believe him guys! Your comment should be deleted. It only concerns people…
If you found out 12 months ago yet was still able to post this comment and think coherently you're either misdiagnosed, lying or delusional. You probably have normal insomnia and need to chill
Quit lying
These videos are quite informative l see!
But can you please include in your videos the reasons that lead to these diseases and the drug/medicine that cures it (if available) from next time onwards ?
I will be looking forward to know the reason or habit that leads to such diseases.
Thank you... 😨I'm left scared
It's a genetic mutation, people have it from the birth. It has no cure, but come on, there are many other symptoms beside insomnia, don't worry
There is nothing more interesting than neurobiology
Nice
Do you have a email, I can ask a few questions on optic nerve please
What is its prevalence?
Hey I’m scared I might have SFI because last year near the end of august I did lsd for the first time and my anxiety and depression got worse as well as my sleep I don’t get tired or sleepy like I used to when I do sleep it’s like 3-4 hours sometimes 6 hours or 2 my memory is bad kinda and I feel like I’m having cognitive or mental decline feels like I sometimes have dementia. Sleep is the main problem and the intense anxiety and depression and feeling like I have cognitive/mental decline as well as feeling like I have dementia. Should I be worried about SFI??? And even if I’m not anxious or depressed I still sometimes can’t sleep
Fatal insomnia is very, very rare, so I don't think it is something you should worry about. It sounds like you should see a doctor/psychiatrist, though. I hope you get it all resolved!
@@Neuroscientificallychallenged Thanks for getting back with me man I appreciate it! I sure will see a doctor and hope I get this resolved as well. Even tho it is extremely rare and there’s a very small chance of getting it it’s still pretty scary it even exists
@@emptythoughts_8 No, it does not sound like fatal insomnia. Fatal insomnia is incredibly rare; you have a much better chance of getting struck by lightning----twice---than developing sporadic fatal insomnia. I would talk to your doctor if you are concerned, but it is very, very unlikely that you are dealing with symptoms of fatal insomnia.
For the past 3 days suddenly it takes me 2 - 3 hours to sleep. What the hell’s going on here.
thats been my whole life
I have this
Started to panick if I have this. Sleeping has been iffy for a while and last night I woke up everytime I entered REM. As soon as I started to dream I wake up. Fell asleep 3 times last night just to wake up after an hour
how are you now? im having the same problem ive tried melatonin and herbal sleep and so many other but still having a hard time to sleep and when i do i always wake up every 30mins or 1 hour and its hard again to fall back asleep coz my mind is already awake and like havng anxiety of wakng up and worry that i will have a hard time sleepng again, its like im having 2-4 hours of broken sleep a night i dont know what to do.
@@WishZyrushow is it going now
@@WishZyrusbetter now?
@@WishZyrusI’m also having this problem I believe it’s from heavy metals in the brain and I am depressed sometimes I feel I’m not going to make it…I mean how can a person live like this
Me too Mine is getting worse, only getting 2-3 hours of sleep if I even do sleep at all. Anxiety is really bad.
Che tipo di problemi da alla vista?
YIKES
The Machinist moment
How long does SFI last and what age would it happen, is it possible it could happen in 20’s??
Yes
yea anyone can get it my sister had and she passed away :( it starts with never feeling sleepy
@@patkzy Oh damn I’m so sorry for your loss😢What was the duration of it?
@@patkzy Would she still sleep or appear to be sleeping even though she never felt sleepy?
@@CaptainAmericaStarSpangledMan yea she said she it was like she was still aware when she sleep but the thing is she was not sleeping at all
Having been sleeping consecutive days for the past month with progressive insomnia last 4 months. Could this be what I have?? I have like zero sleepiness 24/7
That must be a living hell.
I seem to have it there is a tricyclic antidepressant that binds to the toxic prion tail and thus causes less damage to the nerves. I've been on doxepin 200mg and trimipramine 200mg at night for 10 years. Nevertheless, I often have the typical symptoms of little REM sleep, high blood pressure, muscle fasciculations and dizzy spells. I still thank my discovery of tricyclic antidepressants.
I have progressively worsening insomnia to the point I'm hallucinating. I got an injection of abilify maintena that gave me akathisia for over 2 years, after that passed some disease started that began with night sweats, dry skin and eyes, vision and hearing problems (hyperacusis & tinnitus), joint pain.. I gained 40 pounds since this started. All my autoimmune panels normal as well.. I seriously need sleep, I wake up every hour or 2 over like 8 times a night. Then I'm up for the day. Extremely exhausted.
How are your sleep now?
@@shapeshift13is your sleep okay now?
@@joshuadelacruz2955 no. i take lunesta to try and knock me out, but i get no real sleep,. its way worse. after 4 hours i can't go back to sleep. sometimes i wake up after an hour or two, then i get another hour or two in.
@@shapeshift13 I’m sorry to hear that. I think I’m in the same position I’m taking trazodone for me to sleep and I keep on getting broken sleep takes about an hour for me to go back to sleep again I’m not sure what’s wrong with me I can’t fall asleep for too long.
Should I be worried or concerned about having Sporesoc Fatal Insomnia if I never ever get tired or sleepy no matter how hard I try to get there??? I feel like as if I don’t need sleep at all, sometimes I do sleep for like 3-4 hours even though I’m not tired or sleepy, I have been having problems with sleep for 21 months and I’m scared of having SFI I really don’t wanna die like that it sounds awful, I don’t wanna die young I’m only 24. Last night I didn’t go to sleep and I’m still up, I feel like I’m at the end of the road
How did it start? Did you take an anti depressant or did your insomnia come out of nowhere ?
@@GaryFountainHills It seemed to have started after I took lsd like 2 years ago
@@CaptainAmericaStarSpangledMan is it getting better or worse as of this writing?
@@GaryFountainHills Kinda better
@@CaptainAmericaStarSpangledMan that's good. How many hours are u sleeping?
I don't suffer from this, but there are times I'm asleep and my body gets an "electric shock" or moves by itself. I really hate that, don't like it one bit.
Me watching this while trying to fall asleep 👀
So taking melotonin to help you sleep, getting really drunk off trquila blacking out and smoking indica marijuana till you pass out wont make you fall asleep??????!?!??!
I took CBD and alcohol, it made me fall sleep immediately
The symptoms Sounds like every parent with babies 🥺
Brain tumor opreta after chakup gumma disease doctor was asking radiotherapy treatment
I'm quite worried I might have this (SFI as no family history) as I've had progressively worsening sleep for several years.
I work nights so sleep during the day. I drink quite a lot though and notice regardless of sleeping pill or aide I try alcohol is the only thing that would help me sleep.
8 years ago I was getting about 4 hours.
6 years ago it dropped to an average of 1 hr 15
3 years ago I noticed I was going 1-2 days without sleeping at all.
After the first lockdown being I didn't drink at home I noticed I was awake for maybe 6 days without sleep - and I never felt tired, until eventually I had to start drinking from home just to sleep at all.
As I type the now (21st), the last time I slept was the 15th as I've got a blood test tomorrow and need to be alcohol free.
I know if I did had it I would have soundly outlived anyone but do you know Is there any reports on how anyone has reacted to alcohol that has had this?
Poor guys me too i have italia family
Do some fentynyl buddy
See a doc immediately
You alive?
I drink wine to fall asleep . If I don’t drink I can stay up for two days and nights without closing my eyes. This got worse during menopause and my body heat is hotter then anyone I know . I hate this and doctors don’t take you seriously.
Will this happen to me lmao I can barely get 6 hours of sleep and I’m under 18
Fuck I've barely slept in 3 days, why?
Me 2 bro ive bin strugel9ng to sleep for 2 weeks sometimes no sleep at al but i know its not ffi because no one in my family has it or had it
I'm 14
I really have trouble sleeping
It worsens over time , should i worry
No. From what I’ve read online, sporadic fatal insomnia has only been recorded 25 times ever (as of 2018). Unless your family is also dying from insomnia, you shouldn’t be concerned.
@@sigiligus I am certain I have it, my brain is disintegrating
@@Josh-wu7kz No you don’t have it.
You just don’t. You have an anxiety or another mental illness that needs treatment. But no FFI nor SFI.
Non si riesce con qualche farmaco a bloccare la replicazione dei proni?
frightening... any cures?
nope.
@@Neuroscientificallychallenged preventatives?
No preventatives either. Treatment consists primarily of palliative care and it often isn't very effective as the disease progresses.
Yes but try tricyclic antidepressants before that it will still take a long time. Doxepin and trimipramine help me.
@@rene4245 sweet, thanks
Are doctors working on a cure for this?
Yes but try tricyclic antidepressants before that it will still take a long time. Doxepin and trimipramine help me.
Not even sleeping pills relieve this?
Perche' non si trova una cura???
I hope I die because 18months. I’m going crazy
worst video a neurotic with insomnia could find
That which was uncommon before 2021 will become common going forward.
Only one major change. Yes, it’s the cause.
Sooo whats the change
I’m being
Cen
Sored
Sorry
Can’t reply, three try’s all erased
RUclips, Alphabet, SuCK
take your meds, schizo
Eat ze bugs
it is funny when you read about very rare ilness sudenly start writting people who have all these disease lol
why not induce narcolepsy?