is fatal insomnia a option ? iv freaked my self out

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hi guys just needs some advice kind words at the moment , 
So i was flicking thought tik tok just relaxing and come across a subject on  sporadic/ familia fatal insomnia, iv honeslty never heard of it before .

i know im probably being silly but the person who has one of the variants mentioned literally described the exact same symptoms i have . 

hypnik jerks when falling asleep , hallucinations / visions when closing eyes to sleep , this weird sound that comes from the throat when falling asleep at times / choking breathing feeling . also fast heart rate in the night and pain numbness etc all of this are symptoms & also the pains they describe that keep them  awake i get nearly every night 

ONE of the main symptoms that freaks me out about this is that everyone who has this says about closing there eyes and seeing hallucinations basically instantly dreaming , i get this im currently having it now its 2 am here in the UK it’s hard to explain but it’s like i’ll start dreaming when im not asleep but my eyes are closed . it happens pretty much instbelyy when i shut my eyes 

iv had real trouble with sleep and these have literally been my symptoms down to a T i also see another post on here from the past and someone was mentioning about benzo withdrawal causing it etc . 

iv just freaked my self out a little bit , i have been sleeping okay once i get off i wake up a lot tho still and have vivid dreams every night , also frequent urination through night . 
 

IM 8 months off now from heavy diazepam use i was using for 7 years at high doses , 
any advice kind words , if anyone can relate. thank you 


last night after finding out about this iv had one of the worst nights in  a long time if had under 3 hours sleep horrible hypnagogic hallucinations as soon as i close my eyes horrible dreams when i did sleep , pain in body when trying to sleep , hypnik jerks etc 

 

[[Ka...]]

Hello @[ad...] the problem with internet is there is always something out there that scares us silly! If you find a piece then it should be supported with some medical evidence/research/proper link. I never take things at face value but delve further into it - the benzo experience makes us wary I think. 

It seems to me that you are having WD  symptoms with what you describe & these should hopefully ease over time. 
I hope this helps & so sorry it made the night worse. Take care. 

 

[[Th...]]

Highly Improbable and almost impossible.  SFI is so rare, that you'd have a better chance of being attacked by a shark in your basement (if you have one) and simultaneously being struck by lightning on a sunny day!  Sleep will return, albeit rather slowly and in a very non linear, very up and down fashion.  You might do well for a night, a week or a month, only to return to poor sleep for weeks or months.  Eventually it evens out given enough time.  Just avoid Benzos and Z-drugs for sleep.  The only Rx drug that actually helped me sleep consistently was Seroquel (Quetaipine). However, that left me with a ton of brain fog and DP/DR the next day so I stopped taking it.  Some people have success with modern or old school antihistamines such as Hydroxyzine.  Peace!

Edited April 30 by [Th...]

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17 minutes ago, [[T...] said:

Highly Improbable and almost impossible.  SFI is so rare, that you'd have a better chance of being attacked by a shark in your basement (if you have one) and simultaneously being struck by lightning on a sunny day!  Sleep will return, albeit rather slowly and in a very non linear, very up and down fashion.  You might do well for a night, a week or a month, only to return to poor sleep for weeks or months.  Eventually it evens out given enough time.  Just avoid Benzos and Z-drugs for sleep.  The only Rx drug that actually helped me sleep consistently was Seroquel (Quetaipine). However, that left me with a ton of brain fog and DP/DR the next day so I stopped taking it.  Some people have success with modern or old school antihistamines such as Hydroxyzine.  Peace!

hey thanks for the reply i just freaked my self out with it , i know it’s super rare and has to be in your family also ! 

my health anxiety came back and got

the better of me last night what in turn made me not sleep because i was anxious / stressed . 
 

my sleeping has actually got better compared to what it was a few months back still have the odd rough night but it’s smoother at times , last night i just scared my self awake lol . 
 

thanks for your reply tho i appreciate it helps settle my mind 

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3 hours ago, [[K...] said:

Hello @[ad...] the problem with internet is there is always something out there that scares us silly! If you find a piece then it should be supported with some medical evidence/research/proper link. I never take things at face value but delve further into it - the benzo experience makes us wary I think. 

It seems to me that you are having WD  symptoms with what you describe & these should hopefully ease over time. 
I hope this helps & so sorry it made the night worse. Take care. 

hey thanks for the reply iv been really good with not searching or looking but i can across it on tik tok and just randomly had a look and the symptoms was very similar to mine and it just freaked me out . 
im trying to just put it to the back of mind now and forget it happened thanks for taking the time to reply 

[[Th...]]

I was right where you are now almost 8 years ago.  i remember making at least two posts thinking I had SFI.  I am certain that hypochondria and always thinking the worst are both WD symptoms.  It's super easy to freak yourself out or talk yourself into believing you have some other disease or illness.  At 8 months off I can almost "guarantee" that all of your symptoms and insomnia are Benzo WD related!  You'll get past this for sure.  Your sleep will return.  Promise!  Peace!

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18 minutes ago, [[T...] said:

I was right where you are now almost 8 years ago.  i remember making at least two posts thinking I had SFI.  I am certain that hypochondria and always thinking the worst are both WD symptoms.  It's super easy to freak yourself out or talk yourself into believing you have some other disease or illness.  At 8 months off I can almost "guarantee" that all of your symptoms and insomnia are Benzo WD related!  You'll get past this for sure.  Your sleep will return.  Promise!  Peace!

for sure man i literally convinced my self for a few hours / last night that i had it you know how the hypochondria 

works it’s brutal after research and your kind words i know how rare it actually is and my symptoms are definitely WD as i didn’t have them before stopping diaz . 

i have to just ride out and not try get carried away with thought processes like that , but this is why i turn to this community to talk to legends like your self who have been there and understand ! 

thank you 

[[An...]]

5 hours ago, [[a...] said:

hi guys just needs some advice kind words at the moment , 
So i was flicking thought tik tok just relaxing and come across a subject on  sporadic/ familia fatal insomnia, iv honeslty never heard of it before .

i know im probably being silly but the person who has one of the variants mentioned literally described the exact same symptoms i have . 

hypnik jerks when falling asleep , hallucinations / visions when closing eyes to sleep , this weird sound that comes from the throat when falling asleep at times / choking breathing feeling . also fast heart rate in the night and pain numbness etc all of this are symptoms & also the pains they describe that keep them  awake i get nearly every night 

ONE of the main symptoms that freaks me out about this is that everyone who has this says about closing there eyes and seeing hallucinations basically instantly dreaming , i get this im currently having it now its 2 am here in the UK it’s hard to explain but it’s like i’ll start dreaming when im not asleep but my eyes are closed . it happens pretty much instbelyy when i shut my eyes 

iv had real trouble with sleep and these have literally been my symptoms down to a T i also see another post on here from the past and someone was mentioning about benzo withdrawal causing it etc . 

iv just freaked my self out a little bit , i have been sleeping okay once i get off i wake up a lot tho still and have vivid dreams every night , also frequent urination through night . 
 

IM 8 months off now from heavy diazepam use i was using for 7 years at high doses , 
any advice kind words , if anyone can relate. thank you 


last night after finding out about this iv had one of the worst nights in  a long time if had under 3 hours sleep horrible hypnagogic hallucinations as soon as i close my eyes horrible dreams when i did sleep , pain in body when trying to sleep , hypnik jerks etc 

FFI is a very rare genetic brain disorder. I think Dr. Google is scaring you and making things worse from what if worries.

Congrats on being 8 months off. Practice good sleep hygiene, meditate daily, and get in some light aerobic exercise daily, and hopefully your sleep will naturally improve w/o reverting back to any Rx or OTC sleep aids.

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9 minutes ago, [[A...] said:

FFI is a very rare genetic brain disorder. I think Dr. Google is scaring you and making things worse from what if worries.

Congrats on being 8 months off. Practice good sleep hygiene, meditate daily, and get in some light aerobic exercise daily, and hopefully your sleep will naturally improve w/o reverting back to any Rx or OTC sleep aids.

hey yeah i freaked my self out because someone explained symptoms exactly the same as mine it’s very rare as you mentioned so not rly an option . 

thank you i will continue my journey i just had a lapse of health anxiety and my mind went over board with this idea 

[[Le...]]

sounds like you are going through what we all do. i couldnt even recognize the hallucinations at the time but looking back i can remember a bit.  

[[Tw...]]

I also quit very high doses of benzodiazepines. I quit on March 12, 2024 . I urge you to go to an emergency room or be hospitalized or go to an inpatient detox facility like I did. At least they can put you on an anti-seizure medication to prevent seizures, and the doctor can prescribe something that is not addictive to get your sleep under control. I experienced the exact same symptoms that you are experiencing. I checked into a hospital for observation, because of risk of seizures. I was hospitalized for 22 days and I received the medical attention that I needed. Now I take Seroquel and Trazadone for sleep, Trileptal to prevent seizures, Prozac to prevent depression Hydroxyzine to control anxiety. Hope some of this helps. 

 

[[Tw...]]

6 minutes ago, [[L...] said:

sounds like you are going through what we all do. i couldnt even recognize the hallucinations at the time but looking back i can remember a bit.  

I also experienced hallucinations during benzodiazepine withdrawal. I had to get medical attention, and the doctors really helped me Alot. I take Seroquel for sleep and to stop the hallucinations. 

[[re...]]

Hey there Adam

I hope TheWay chimes in here as he thought all of what you are currently experiencing.

I have been exactly where you are at believe me. I thought I had it too. 2 years ago all this started happening to me from an ER delay and misdiagnosis where i ended up in a long status epilepticus then a coma from low blood sodium that was never taken care of in time. I was given all kinds of poisons in high doses all IV style (Haldol, Keppra, Ativan, Tons of antibiotics, etc in there and when I got home, started losing the ability to sleep and started having jerks, tinnitus, numb arms, etc like crazy. I am still here almost 2 years later so that proves to you that I never had that scary FI. It was just the dysregulation and damage to my nervous system they perpetuated. I am still (fingers crossed) sleeping at a joke dose of valium (.73) so there is NO WAY that if I had FI, I would be sleeping still. Benzos don't work for FI and certainly not a dose that low.   I too go right into a dream state many times. It is ok and don't get riled up about it. It is your brain trying to go into rebound REM which it so badly needs as the Diazepam and Alcohol has taken this away from you. Drug and usually alcohol sleep is very shallow and/or dreamless,  "where has the time gone" sleep. One time I even watched that Christian Bale movie "the Machinist" on you tube and the comments were all scary like this one dude says............ "going right into REM sleep is bad for your organs" That scared the hell out of me. 

 The internet is so full of idiots unfortunately that really have no clue. Going right into REM is actually natural for your brain if it has been hit so hard from drugs and withdrawal. 

I am going to assure you that it is NOT FI. No way. You were on a high dose of Diazepam (and it looks like a fast taper) and doing alcohol at the same time and it is your brain trying to get some balance. I can almost bet that if you took enough benzo the sleep stuff would stop in a minute (i don't recommend). Which FI does not respond to at all. There really is no medical treatment for it. 

You are probably on the internet all night and this is not good for you. I would consider just being in the dark after the sun goes down and try to just rest and don't think about sleep. Easier said than done. I so get it. But just keep easy stretching most of the night if you have to. This will at least relax you a bit as I am sure your muscles are all tight as can be. 

I think what you SHOULD do is every time you want to get on the internet and look at a disease (I did it all the time trust me) or what is wrong with you. Look at the positive studies about exercise, diet, stretching on the brain. This will get your thought pattern in a different place and it's ability to heal in all of this and neuroplasticity will start to take hold and you will feel better. It will take time though as you cannot THINK your way out of drug damage so all the CBTI in the world will not work.   

And for one minute don't think lifestyle changes will be an instant solution like a sleeping pill. They are going to take awhile to work. All studies on efficacy of exercise are usually long term outcomes with the majority being positive on brain health and sleep. 

If I only had ONE doctor tell me about these studies and give me hope. I would be well on my way to healing by now. 

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1 hour ago, [[L...] said:

sounds like you are going through what we all do. i couldnt even recognize the hallucinations at the time but looking back i can remember a bit.  

it’s weird so when i close my eyes to relax for sleep it’s like pressing play on a remote ill get images and situations almost like a dream but different . 

it’s come and gone through withdrawal but is always weird for me 

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1 hour ago, [[T...] said:

I also quit very high doses of benzodiazepines. I quit on March 12, 2024 . I urge you to go to an emergency room or be hospitalized or go to an inpatient detox facility like I did. At least they can put you on an anti-seizure medication to prevent seizures, and the doctor can prescribe something that is not addictive to get your sleep under control. I experienced the exact same symptoms that you are experiencing. I checked into a hospital for observation, because of risk of seizures. I was hospitalized for 22 days and I received the medical attention that I needed. Now I take Seroquel and Trazadone for sleep, Trileptal to prevent seizures, Prozac to prevent depression Hydroxyzine to control anxiety. Hope some of this helps. 

hi i think youv got mixed up there im 8 months post jump , this was about me worrying for my sleeping symptoms iv been having recently 

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21 minutes ago, [[r...] said:

Hey there Adam

I hope TheWay chimes in here as he thought all of what you are currently experiencing.

I have been exactly where you are at believe me. I thought I had it too. 2 years ago all this started happening to me from an ER delay and misdiagnosis where i ended up in a long status epilepticus then a coma from low blood sodium that was never taken care of in time. I was given all kinds of poisons in high doses all IV style (Haldol, Keppra, Ativan, Tons of antibiotics, etc in there and when I got home, started losing the ability to sleep and started having jerks, tinnitus, numb arms, etc like crazy. I am still here almost 2 years later so that proves to you that I never had that scary FI. It was just the dysregulation and damage to my nervous system they perpetuated. I am still (fingers crossed) sleeping at a joke dose of valium (.73) so there is NO WAY that if I had FI, I would be sleeping still. Benzos don't work for FI and certainly not a dose that low.   I too go right into a dream state many times. It is ok and don't get riled up about it. It is your brain trying to go into rebound REM which it so badly needs as the Diazepam and Alcohol has taken this away from you. Drug and usually alcohol sleep is very shallow and/or dreamless,  "where has the time gone" sleep. One time I even watched that Christian Bale movie "the Machinist" on you tube and the comments were all scary like this one dude says............ "going right into REM sleep is bad for your organs" That scared the hell out of me. 

 The internet is so full of idiots unfortunately that really have no clue. Going right into REM is actually natural for your brain if it has been hit so hard from drugs and withdrawal. 

I am going to assure you that it is NOT FI. No way. You were on a high dose of Diazepam (and it looks like a fast taper) and doing alcohol at the same time and it is your brain trying to get some balance. I can almost bet that if you took enough benzo the sleep stuff would stop in a minute (i don't recommend). Which FI does not respond to at all. There really is no medical treatment for it. 

You are probably on the internet all night and this is not good for you. I would consider just being in the dark after the sun goes down and try to just rest and don't think about sleep. Easier said than done. I so get it. But just keep easy stretching most of the night if you have to. This will at least relax you a bit as I am sure your muscles are all tight as can be. 

I think what you SHOULD do is every time you want to get on the internet and look at a disease (I did it all the time trust me) or what is wrong with you. Look at the positive studies about exercise, diet, stretching on the brain. This will get your thought pattern in a different place and it's ability to heal in all of this and neuroplasticity will start to take hold and you will feel better. It will take time though as you cannot THINK your way out of drug damage so all the CBTI in the world will not work.   

And for one minute don't think lifestyle changes will be an instant solution like a sleeping pill. They are going to take awhile to work. All studies on efficacy of exercise are usually long term outcomes with the majority being positive on brain health and sleep. 

If I only had ONE doctor tell me about these studies and give me hope. I would be well on my way to healing by now. 

hey thanks so much for taking the time to reply. I really appreciate it. that makes perfect sense. I kind of knew I didn’t have it but my mind just starts going crazy. I suffered with health anxiety at the start of this withdrawal and it’s been very tough. My anxiety is a lot better now but still comes round to me now and again. 

iv been doing Pretty well back work back in the gym actually slept kind of good some nights better than I was. I was just scrolling watching some videos last night and someone was talking about fatal and insomnia looked at his and he was explaining symptoms that I have and throughout the withdrawal so it just freaked me out . it’s because the symptoms was so similar but then again so are many symptoms in this withdrawal to so many different illnesses 
 

i’m going to do what you said about reading a positive stuff and also putting my phone away at a decent time because if I didn’t have my phone at last night, I wouldn’t have read it up and see the videos. I’ve used my phone as sort of like a comfort throughout this, doesn’t always clearly lol 

I really appreciate your reply thanks so much

Edited April 30 by [ad...]

[[re...]]

Be careful of taking anything else (neurotoxins) in this critical time. Most likely they WILL poop out in time and this is something else you gotta taper and gain nervous system homeostasis ONCE AGAIN!!!!!!!!

I took things prn like mirtazapine and zolpidem, real low dose as well as drinking some nights. I also took all the usual crap from "functional' medical docs like Valerian, Melatonin, chamomile, cbd, delta 8 (oh god was this one a winner suggested from another natural quack and it put me in the ER) and it really messed me up when all I should have been taking was maybe Omega 3 oils, Olive Oil,  probiotics, high tryptophan diet,  exercising like crazy, and staying off the computer when the sun went down. And as TheWay would say................TIME!!!!!!! really is key in this. 

I think it would of saved me. Listening to all the 'experts' on both sides medical AND naturopathic is what got me even worse and severely delayed my healing. People like this won't recommend anything that they can't $ell. It is awful. 

[[re...]]

Yeah I have seen all the FFI people on You Tube. Like that Filipino tattoo artist I believe he said cipro caused his which definitely could be the case. Then there is Karl. Then there is some chick on there. STAY far away from them. 

I also think the sleep 'pros' and people like Daniel Erickson, Matt Walker give off way bad messages and info. I am so sick of these people touting this nonsense. And once again if I wouldn't of listened to these 'experts' every night on you tube then I would be much better by now. 

Daniel Erickson is all about this psychological stuff (which is somewhat valid) but USELESS in benzo/psych med issues and withdrawal.  And one time he even (or one of his guests I am not 100 sure) said exercise is useless in insomnia. WHAT A BUNCH OF MISINFO AND CRAP THIS IS!!!!!!!!!!!!!!! Exercise is proven again and again to have positive effects  in clinical trials and studies with all kinds of brain issues from regular mental health/addiction to parkinsons, tbi, stroke, and yes INSOMNIA. 

And that damn Matt Walker making the rounds with this "7-8 hour sleep or else" myth that if you don't get this then you will shrink your life span. I mean like an insomniac really needs to hear this. They are in hell enough. 

Just tell this to Donald Trump, Margaret Thatcher, Winston Churchill.

They all have/had SUPER long lives past 80 YO and they are/were massive insomniacs or low hour sleepers. And they had super stressful and demanding jobs where they HAD to be on.  

I think the people here are WAY smarter than all of these quacks out there making all kinds of money. It disgusts me the madness they perpetuate. 

I am not saying sleep is not important and that we can go on 2- 3 hours forever. But sleep usually will return and this thing that you need a solid 7- 8 hours in one stretch is odd because back in the romantic era of the  European days they would do biphasic sleep where one would get up after say a 3 hour block of sleep then roam outside and get together with others. Then it was back to sleep for another 2-3 hours and they seemed happier then with this. 

Edited April 30 by [re...]

[[re...]]

And I am gonna go out on a ledge here and say that Coffee can actually HELP healing in your brain and sleep. Once again i listened to all these experts telling me not to drink any coffee and it all seemed to make me worse. I now drink coffee (half decaf) once a day in the morning and it actually seems to be helping my brain heal. There is something in the Adenosine block that comes back flooding in once the coffee wears off and you actually get that tired feeling again. Not to mention the amazing benefits of coffee on the brain and overall health. I have read some studies about stimulants upregulating gaba receptors as well so there is that. 

Just my personal experience of course. 

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4 minutes ago, [[r...] said:

And I am gonna go out on a ledge here and say that Coffee can actually HELP healing in your brain and sleep. Once again i listened to all these experts telling me not to drink any coffee and it all seemed to make me worse. I now drink coffee (half decaf) once a day in the morning and it actually seems to be helping my brain heal. There is something in the Adenosine block that comes back flooding in once the coffee wears off and you actually get that tired feeling again. Not to mention the amazing benefits of coffee on the brain and overall health. I have read some studies about stimulants upregulating gaba receptors as well so there is that. 

Just my personal experience of course. 

hey yeah thanks for sharing i haven’t drunk coffe other the last year as to start with it was making my anxiety worse .

before reading up about the SFI last night i was actually fine with sleep i had the odd bad night etc but i was just getting on with it , i haven’t had a bad night like i did last night ina long while . 

it’s just amped my anxiety up iv still be thinking about it today even tho i know it’s not really a thing and possibly as it’s so rare but my anxiety brain can’t help it’s self once this scare is over i should be back to how i was sleeping okay again 🙂

Edited April 30 by [ad...]

[[re...]]

Well that tells you right there with this statement "before reading up about the SFI last night I was actually fine with sleep"

There is no denying that there is a psychological component to all this, but it is CHEMICAL dysregulation and not something you can just think your way out of. It takes time. Sometimes much longer than we would want. The brain isn't as linear in it's approach to healing like say a broken arm. It does what it wants in due time. But that doesn't mean you can't lend it a helping hand. 

At the same time if you change your lifestyle and habitual ways of thinking of things it WILL change you for the better in all of this. 

Do what you can friend and you will be well on your way. 

[[re...]]

Sometimes all we need is reassurance and it is the one thing that NO ONE in the higher educated/ professional class of society seems to be able to give. 

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15 minutes ago, [[r...] said:

Well that tells you right there with this statement "before reading up about the SFI last night I was actually fine with sleep"

There is no denying that there is a psychological component to all this, but it is CHEMICAL dysregulation and not something you can just think your way out of. It takes time. Sometimes much longer than we would want. The brain isn't as linear in it's approach to healing like say a broken arm. It does what it wants in due time. But that doesn't mean you can't lend it a helping hand. 

At the same time if you change your lifestyle and habitual ways of thinking of things it WILL change you for the better in all of this. 

Do what you can friend and you will be well on your way. 

when i say fine i mean u still had symptoms but they haven’t really worried me , albeit they his has just thrown me off i’m going to put it to the back of my mind and carry on like i was 🙂
thanks for the chat and your reply’s they have helped settle me down 

[[re...]]

I am so so glad Adamstuart that I could help you. God knows I and many others have been there. May you continue to heal and have a drug free life. j

[[Th...]]

Not sure why that post was made telling you to go to the ER?  Anyone reading this post, please do not go to the ER.  ERs are for stabilizing care for life threatening situations, NOT for the treatment of Benzo WD or to "detox" you off of Benzos.  I found out the hard way by going to 4 different ERs in 4 different cities over a 6 week period.  All of the ER doctors said the "drugs were out of my system" and "couldn't be causing my symptoms."  Simply not true.  99% of all medical professionals (my estimate) do not recognize Benzo WD or any related symptoms.  Going to an ER is the worst possible way to get off of Benzos IMO.  I did a CT at the advice of my doctor (not recommended).  Time is the healer and since you are already 8 months off stay the course.  You could turn a corner anytime now.  Peace!