Sporadic fatal insomnia An eye witness account of a non insomnia

[@lilgayboy456]

22 cases- that shows how extremely, EXTREMELY rare. plus, as kasper stated, even he himself didn't think it was SFI. the name SFI likes to draw in us hypochondriac insomniacs. my condolences are sent to kasper. i am so sorry.

[@Fantabbydozy2608]

I wish they would remove all mentions of this being an ‘insomnia’ from the internet entirely. It needs to be renamed. This is far more like CJD than anything else but of course people with insomnia (me included) trawl the internet with anxiety looking for answers, stumble upon sfi and it becomes a nightmare. I’m no longer convinced I have this condition but this was a horrible hole to fall into and one that seemed to take over my life for a while. When you’re already tired and anxious, twitches and strange ‘symptoms’ appear and distort your perception of what it really happening. I only recently found this channel and found out that there are dozens of other people all thinking they have sfi and are literally scaring themselves into hyper arousal and even less able to get to sleep! It’s a horrible trap to get caught up in. Couldn’t there be some kind of petition to get this condition’s name changed?!

[@thesleepcoachschool8192]

Couldn’t agree more with all of this... and especially with Kasper being part of the community, I think we have a good place to start a petition... if someone takes initiative, I’ll do everything I can to support it!

[@shawngilmore3628]

Bro she was sleeping so she didn't have insomnia!!!

[@MoolsDogTwoOfficial]

I went from sleeping 5 hours to 1 and a half hours in just 6 days. It’s gotten progressively worse and I’m convinced I’ll eventually stop sleeping all together. If this is all anxiety, this only reinforces it.

[@thesleepcoachschool8192]

I'm truly sorry to hear about the challenges you've been facing. It sounds incredibly tough. We're here for you and glad that you found our content. Remember, you're not alone in this journey, and seeking support is a positive step.

[@ozlemsibirseyler]

I was like you i couldnt sleep maybe i could sleep half hours or less. then i went to psychiatrist she give pill to me it was xanax and i started to sleep progressively it got better dont worry and talk with an psychiatrist you are not sfi dont forget this

[@Guap303]

​@@ozlemsibirseylerI got klonopin and still can't sleep, I'm terrified I haven't slept in 3 days

[@ozlemsibirseyler]

@@Guap303 I'm sorry. are you still awake?

[@Guap303]

@ozlemsibirseyler yes I finally went to the ER I was starting to lose it. They doped me up and I've slept for like 13 hours straight.

[@rustyblade9366]

I've also read a case where a young boy got diagnosed with SFI, a rather rare case since he was so young, the youngest prion dissease case in the world I think, and in his case, insomnia was also not picked up by the boy's parents nor the doctors. So it clearly wasn't there. The dissease should be renamed ASAP, I can't stress enough how important that is, it would relieve so much anxiety and stress from people.

[@thesleepcoachschool8192]

Hi RB and thanks for sharing. So important to know that it truly isn’t insomnia and 100% - a new name would really help!!

[@Nina_Olivia]

Thank you Daniel - and thank you so much, Kasper, for sharing this authentic account of your mother’s illness. You’ve helped raise awareness about SFI and the desperate need for this condition to be relabelled.

[@thesleepcoachschool8192]

So glad to read these lines Nina. This was exactly why Kasper contacted me in the first place, he will be so happy to see this 🙂

[@sfguy2024]

@@thesleepcoachschool8192 sleep coach, message me and id like to give you details on my wife’s case. This case you just talked about doesn’t seem like SFI, seems a lot more like CJD. My wife’s case lasted 2 years and 5 months. No autopsy but two PET scans of her brain and about 8 sleep studies. I have tons of details and many pictures and videos, my wife was in this constant sleep/awake state. All her sleep studies show zero REM sleep. I’ll come on and talk about it and even share some video and pictures.

[@thesleepcoachschool8192]

Hi Matt, so sorry again about this loss. And I’m touched that you’d consider sharing her last years with us so the community can learn. You can email [e-mail] and we can talk more.

[@caseyv4822]

Thank you for this video, it put my anxieties to rest about this concern of mine.

[@thesleepcoachschool8192]

So glad to hear this Casey, this was what I hoped for when making the video 🙂

[@malena7362]

I’m so sorry kasper . ❤️❤️❤️

[@wxrm]

I'm seeing a doctor in May, but I have so much anxiety right now thinking that I have this. My insomnia started on March 14th, and I started developing muscle twitches throughout my body on April 3rd. I'm 21, and I'm so afraid right now.

[@Guap303]

I'm in the same. I'm laying down for hours and dreams begin but I'm not asleep, my muscles are twitching me wide awake from being drowsy

[@r.xkiiwa2171]

How are you currently?

[@Guap303]

I hope you're doing better I'm finally able to get a little bit of sleep it sucks because anxiety causes it and lack of sleep causes anxiety so it's a vicious cycle that's hard to break

[@wxrm]

@@r.xkiiwa2171 I’m feeling much better nowadays. My sleep has improved, and I’m not as stressed out anymore.

[@lerlo]

My insomnia was getting better. Then I read up on ricard sagian's ordeal and I went back to anxiety insomnia.. Sigh... Its not that I think I have what he has but thinking about what he felt and how much he suffered really affected me. My deepest condolences to Kasper. So sorry for your loss.

[@thesleepcoachschool8192]

Hi lerlo, sorry to hear, but glad you are here. Thanks for thinking of Kasper and, I hope you’ll find something of value to you on the channel so that you sleep better again./Daniel

[@ottoyisanoba5902]

How are you now?

[@sandywhat2429]

My condolences to Casper.

[@leviackk]

An incredible video for who suffers from the anxiety of the SFI And.. FFI its not a real insomnia too. the insomnia its a symptom, the principal symptom, but the disease it’s a different, much larger thing. The destruction of the brain is always the cause of death, not the insomnia. I think scientist can remove from both SFI FFI the damn word insomnia. Big relief from millions with sleeping problems

[@GarryWilliams555]

Such a devastating disease. I hope some day a cure can be found, but with it being so rare I'm not sure how much research has been done.

[@thesleepcoachschool8192]

Indeed… I hope so too, one day!

[@karlmercieca6610]

Hi Daniel, thank you for sharing this story. I seem to have some form of fatal insomnia, similar to what the Indonesian man Ricard Siagian had. I spasm, grin and grimace involuntarily just as I'm about to fall asleep. I'm on 600mg quetiapine, 15mg valium, 20mg olanzapine and 100mg clomipramine - and I still can't sleep! Do you know of a doctor who specialises in this field that can help me? I've run out of options in my home country (Malta) as there doesn't seem to be the expertise here to diagnose it.

[@thesleepcoachschool8192]

Hi Karl, sorry to hear this. I think seeing your doctor is always the best when you’re worried about your health... I don’t know if any expert, but do stay in touch and let us know how things go Karl

[@erahaez4266]

Are you doing alright bro

[@jayw5284]

How r u doing?

[@brunethateiubeste]

I really think I have this... I'm not able to sleep for 2 weeks, I lay with my eyes closed in bed and can't tell if I sleept or not, feels like I'm not sleeping and being aware of everything around the all the time. I can't go though the next stage of sleep. And I don't feel tired at all. I have myonoclus as well and muscle stiffness, agitation, depression and anxiety and I'm not able to do my daily activities anymore. My health is deteriorating day by day. :(

[@thesleepcoachschool8192]

It’s so so scary to imagine ourselves in this place… hang in there!!

[@brunethateiubeste]

@The Sleep Coach School I'm not just imagining myself there, I really think this is what's happening to me, I can't sleep no matter how much I try, not even in the day. I can never sleep again, my autonomic nervous system is not functioning properly anymore. My breathing, my heart, I'm exhausted.

[@brunethateiubeste]

I lost 15 kg, but what's more weird is that I don't feel tired,just my body is exhausted

[@shannonlove44]

@@brunethateiubeste I’m feeling the some thing did you get help?

[@thesleepcoachschool8192]

Hi Georgiana, Oh yes I’m sorry I never want to question or belittle anyones experience… and you know, just one thing that comes to mind reading this is what sleep is this passive process… it happens when we aren’t trying… so sometimes, when we see that we have tried a lot, it can lead us to see why we aren’t asleep… just a little thought

[@dodgdurango6128]

This needs to be renamed absolutely immediately. please. it scares the Hell out of me and I wish I never saw this and I wish it didn’t exist. Same with FFI. but one important thing to note, is that both of these diseases do not start with normal insomnia. the victim is totally unaware the entire time of their sleep patterns and has NO clue that there is anything wrong

[@thesleepcoachschool8192]

I wish that would happen… and your point is so true

[@Salahtruth]

​@@thesleepcoachschool8192 so FFI and SFI has nothing to do with insomnia and anxiety ?

[@thesleepcoachschool8192]

@Salahtruth no medical advice here but - yes that’s our understanding exactly

[@Kami-xb5lr]

Hello doctor, i'm from brazil and suddenly i have difficulties sleeping since last week, i'm really scared about SFI cause i identified myself with some simptoms and i just can't live anymore, i have panick attacks because of it, i just can't sleep more than 3 hours a day everyday, i have spasms while trying to sleep, i've lost weight ... please help me.

[@delak2566]

Hey Daniel was wondering your thoughts on my condition. I’ve been having health issues since having Covid. But things got worse after I took a small weed edible. I had a really bad experience. But then my head started twitching and then I start to get muscle twitches all over my body. The head twitching subsided and the muscle twitching after a few days. Then I started to get tightness in my hands that went away. Followed by balance issues that did go away as well.

[@delak2566]

I am currently dealing with tightness in my right foot that occasionally makes my balance off but it’s on/off day by day as well. And random breathing issues/heart palpitations that keep me up. I started to get insomnia once hearing about this disease I know that almost negates the likelihood of having but I’m still afraid.

[@delak2566]

I know this is a lot but just any context you could provide would be helpful

[@thesleepcoachschool8192]

Hi! Of course no medical advice but perhaps you’ve heard expressions like “I trembled with fear”, it’s very common to have jerks and twitches and shaking when we’re scared. And you’ve probably heard it said “sit down, I have something important to tell you” - because when we are upset we can feel dizzy, not balancing and fall down. It can really help to see that everything we experience can be traced back to fear, and that fear often is amplified by our attempts to suppress it, with edibles for example!

[@Claudio_Mirage]

Excuse the inconvenience, I love your channel, I tell you my situation, in December 2018 I spent 3 days without sleep, I found on the internet about the IFF, I got super nervous, but after months I got better, and I started to sleep normally, now it does A few days the worry returned, I have been sleeping badly, there are days that I do not sleep, these diseases could it be that the sleep improves? or when they start they are progressive without improvements, I don't know what to think, I would like you to guide me if possible, thanks

[@thesleepcoachschool8192]

Hi Cloudrg and - thank you for this comment! I’m guessing you’re from a French speaking country (IFF vs FFI)? This is a very easy question to answer. In fact it’s something I talk with Kasper about in the episode when I speak to him: FFI/SFI are progressive. I’m sure there’s day to day variation, but overall, you don’t get better. It’s not like you can have significant improvement over months and then go back to having symptoms of it again. If you haven’t already, do check the episode with Kasper, you’ll find it in the Ffi/Sfi playlist that is in the description of any new video. I think it will answer all your questions! Be well and stay in touch!

[@Claudio_Mirage]

After about 6 months being well, with some other isolated insomnia episode, I had problems again, I spent more than 3 days without sleep, I went back to look for fatal insomnia documentaries, and I thought that maybe my case is a rare case, in which the symptoms improve but I always read that it is progressive, and that at times leaves me in doubt and uneasy, since very little is said about the sporadic form, I appreciate that you take your time and are quick to respond

[@thesleepcoachschool8192]

@@Claudio_Mirage Argentina! Ok got it, thanks for sharing. You know, I just sent a tweet like this the other day: “Insomnia is not a sign of a rare and unusual condition. But looking for a rare and unusual condition is a sign of insomnia.” My point being, the only thing that causes you to sleep little and worry about it, wonder what’s happening, try to figure it out, try things to sleep more, spend hours and hours tossing and turning - is worrying about being awake at night aka insomnia. Your story is a very familiar one. And that’s good! It will help you see that you’ll also get to a place of sleeping well simply by learning and applying what you learn 👍!

[@Claudio_Mirage]

@@thesleepcoachschool8192 Thank you very much for being interested in my case, do you consider that prolonged use of computers and cell phones can lead to insomnia or is this an internet myth? Because many times I am on the computer all day and I sleep normally, or it will be that prolonged use is affecting little by little and it becomes cumulative, I would like your opinion about it, greetings

[@thesleepcoachschool8192]

@@Claudio_Mirage Anytime! And yes, it is a myth that electronics or blue light causes trouble sleeping. Anything can have some impact on your sleep, like you know what brand toothpaste you use or if you wear sandals or flip flops - those things can add or take away a couple of seconds, but they don’t matter! Same thing with screens or light. On the other hand, worrying about using computers can cause a lot of trouble sleeping!! So the general formula is: X isn’t the problem, thinking about X is!

[@sreyanmukherjee1474]

Recently i have been having high anxiety and behavioral changes....like i get angry and mad and hyper easily.....i am worried symptoms match....i am also having difficulty reading and concentrating and am missing out words and skipping lines... I am also having rough and not smooth sleep....like while sleeping i suddenly wake up and also having vivid dreams sometimes....do you think i might have fatal sporadic insomnia?

[@thesleepcoachschool8192]

Hi Sreyan, thanks for commenting. There's a playlist in every new video description that is about fatal insomnia. There's an interview with Kasper who's mom died from sfi, if you tune in to it you will see that if someone can find a video on youtube and write a coherent comment, then they don't have sfi. What you describe here are very common with insomnia, and I think if you spend some time learning on the channel, you'll do really well!

[@sreyanmukherjee1474]

@@thesleepcoachschool8192 Heyy i wanted to ask you something more. I am noticing that when i sleep there are 2 patterns .... i sometimes get awake during sleep and then fall asleep again. I sometimes fall asleep while remaining awake and then awake again. But in both cases i don't remember when i was awake and when i was asleep. I read online that this is a symptom of SFI i.e. alternative brief spells of awakeness and sleep and not remembering them. What do you think about this?

[@wistolla]

​@@sreyanmukherjee1474how are you doing this days ?

[@thecattoldmetodoit4329]

I’m wondering if I should get bedtyme so I can chat to coaches as I ask way too many damn questions on here.

[@thesleepcoachschool8192]

Sam, without you there would be no channel. The community, the willingness to share what’s happening, the questions, the opportunity for us to reply….this is what brings value and hope. So I’m so very grateful that you’re here 😊 It can help of course having a private conversation and a curriculum to follow. If that’s something you think you’d like, do check it out!

[@dedox2897]

Maybe she had Creutzfeldt-Jakob Disease , Variant Creutzfeldt-Jakob Disease, Gerstmann-Straussler-Scheinker Syndrome, not sporadic fatal insomnia? I found a lot of information and real pathologoanatomically proven cases of fatal insomnia, people really sleep very little and then stop sleeping altogether.

[@thesleepcoachschool8192]

Hi! It seems like sfi may becoming classified as MM2 CFJ according to other comments here. Also, it seems like the familial variety maybe one where there’s less sleep, but overall my understanding of literature is that it’s more inability to classify as wake vs sleep by EEG that happens…

[@7upjello119]

What about Michael Corke? He was hyper aware that he couldn't sleep for the first stages. I can't shake the feeling that this is just an attempt at calming paranoid people down. It's obviously called "fatal insomnia" for a reason

[@thesleepcoachschool8192]

Hi, there’s much more that can be more helpful… check our playlist on sfi!

[@shabifenhong]

Hey, so Michael Corke had FFI, and we are talking SFI here.

[@7upjello119]

@@shabifenhong that has nothing to do with the fact that this man is dishing out potentially dangerous quackery and stating it as fact. People like this cockroach are why illnesses are never taken seriously. Google the library of medicine about the topic and you'll see every word that comes out of his mouth is indeed bullshit.

[@mftai5572]

@@7upjello119 are you a medical professional? If not please shut the fuck up and stop reinforcing fears into people. ffi is different from sfi, though the similar name. So please, keep your dumbass unwanted advice to yourself

[@raneenabed2333]

Hello Daniel, I am really sorry for the many messages, but I am really worried about this disease, but I have a question. Do the fatal familial disease and intermittent insomnia have symptoms other than anxiety? Because I've had this condition for two weeks and I've had no symptoms other than sleep problems

[@thesleepcoachschool8192]

Hi Raneen, no medical advice here but I think it’s the opposite, there’s no anxiety with fatal insomnia, that’s a neurological condition. So if we are anxious and don’t sleep, that sounds like insomnia to me

[@Sydonia108]

Hi Daniel, so in a nut shell you won't have it if you're very aware of your struggle with sleep and is simply just common insomnia?

[@thesleepcoachschool8192]

100%. Exactly how I think about it. And you know, just thinking of yourself having "common" insomnia, that alone is so helpful.

[@Sydonia108]

@@thesleepcoachschool8192 Thank you Daniel, looking forward to starting your course. May I ask if you have experience in clients who also suffer from depression and general anxiety?

[@thesleepcoachschool8192]

Hi Matthew! Look forward to working with you:) I would say this - lots of clients that I work with experience a lot of anxiety, depression is common too. They say I see it, much of what we call mental health today comes from an attempt to escape something that you get more of the more you try to escape it. When you want to have less anxiety, and try to avoid it, the more the brain thinks you’re not listening and shouts more and you have more anxiety. The more you want to avoid feeling sad, the more the brain thinks you’re not understanding it’s messages and the more sadness happens. With insomnia, it’s trying to escape being awake at night that produces so much wakefulness. So, I think very much of what you learn about insomnia can be applied broadly..

[@Sydonia108]

@@thesleepcoachschool8192 Thank you again Daniel for such an insightful and informative reply :)

[@thesleepcoachschool8192]

Anytime!!

[@mariagavril9557]

Oh my God( actually i have an anxiety and had some before, but it all started two weeks ago really spontaneously, i couldnt sleep and plus minus at the same time i started to feel something like not even dizzy but i dont know, weakness and smth with my balance. Now i think maybe it can be called like dizziness but im not sure. Do you think i have SFI?😭

[@thesleepcoachschool8192]

Hi Maria, Hang in there, this sounds like a common experience from many many in our community who realized it was anxiety... there's a video with Kasper here who talks about his mom who had SFI, this can give a picture of what it's like.

[@mariagavril9557]

@@thesleepcoachschool8192 thanks a lot for your reply. Now im really worry. Because it just never happened to me before. After week bad sleep i started to take some sedative pills maybe you know Gidazepam IC 0,02. and it really helped me at first. But during the day i felt weakness and smth like dizzy. I visited psychiatrist and after my story he is sure i have anxiety-fobia disorder, he gave me the recipe of antidepressants with sertranin Zoloft, like the smallest doze. After i started taking it it became worther( like my sleep quality and my balance. He told me its okay because of first days of treatment and because of my anxiety. But actually im so scared that i have that horrible disease and dont know how to calm down and think positive. Because it seems like smth really bad happening to me, and i started to wait for getting more symptoms, unfortunately i don’t believe that it will be better( im really pessimistic about my health now. I just want to overcome this hell and live normally(

[@mariagavril9557]

And i should say that all my symptoms like bad sleeping, smth with balance and anxiety started at the same time. Anxiety maybe a bit earlier. I know that you can’t give me diagnosis but actually i feel better sharing my worries like many people here

[@thesleepcoachschool8192]

I’m so glad you’re seeing things get easier as you share and see you’re far from alone Maria

[@abenjersedits300]

Hi, I'm really worried about this sfi,i have insomnia which randomly come and go, i'm still 14 but i'm overthinking everytime i cannot sleep,and when i cannot sleep, i start thinking about sfi which really scares me, and then i get really nervous, like what happened yesterday, i slept at 9 pm and wake up at 1 am, and then i couldn't go back to sleep, it took me almost 3 hours to go back to sleep.

[@thesleepcoachschool8192]

Hi! Sorry to hear, but there’s some content here that I think could help. Here’s a playlist about SFI and ffi. Hang in there! Fatal insomnia - for those concerned about ffi and sfi. kzbin.info/aero/PL6RQ1GS7B1cgjEXNFSpelP_HSsCpF56Ey

[@abenjersedits300]

I started watching your videos about Fatal insomnia and it really helped me,i sometimes cannot sleep, and i'd just watch your videos about how Sfi is not Insomnia and it really ease my mind from enxiety, thank you so much! ☺️

[@thesleepcoachschool8192]

Jay, so glad to read this. Thanks for the support 😊

[@sammiididntlieseeley2444]

with me I have it and I have insomnia I stop sleeping in end January I knew something was wrong I knew I was iLL I lie in bed people think I was sleeping night and day and that wasn’t true . I was told it was mental health but it wasn’t I got discharged I stopped sleeping 😢

[@thesleepcoachschool8192]

Hang in there Sammi! Hope you find something helpful here

[@rajdeepghosh4672]

feeling really sorry for Kasper

[@thesleepcoachschool8192]

me too, my thoughts are with him and his family.. thanks Rajdeep

[@malena7362]

I’m so disappointed they need to change the name !!! Nothing to do with insomnia.

[@thesleepcoachschool8192]

100% Malena One day I hope that happens

[@prabhpaul2953]

Sir please tell me i am 18 year old, from last year i had trouble in sleep, should i worry about this spordic fatal disease. Plz sure me about this i have just anxiety insomnia

[@thesleepcoachschool8192]

Hi Prabh, so sorry to hear you've had trouble sleeping. There's a playlist in every new video description that is about fatal insomnia. There's an interview with Kasper who's mom died from sfi, if you tune in to it you will see that if someone can find a video on youtube and write a coherent comment, then they don't have sfi. What you describe here are very common with insomnia, and I think if you spend some time learning on the channel, you'll do really well!

[@Yakise]

Hello again..! (spoiler alert: I'm back because of a relapse, but a different kind this time) First of all thank you for sharing your story Kasper (my sincere condolences) & thank you Daniel for sharing it with us! Watching this video has partially calmed my fear about SFI again, but it also rose one question for me : what exactly do you mean by feeling "dizzy"? I'm asking because I have been feeling pretty dizzy and unbalanced myself the past few days and I have noticed a change in my sleeping pattern: I now tend to "nosedive" in front of my Netflix show at around 10pm, which causes me to go to bed early and staying in bed until my set wake up time (still 7:30am). Despite being this overly tired and "sleeping" for so long I feel trashy the next day, as if I hadn't slept for more than 1 or 2 hours. Then again, my sleep is pretty light : I don't really feel myself sleeping in, I just start having sleep-onset-dreams in which I will drift around all night, half conscious of being awake, like at the start of my insomnia. I also tend to wake up 3 to 4 times but drift back into the same state quite fast. The night still feels like it's going fast, which is a good indicator for me being at least partially asleep, yet I don't feel refreshed at all... I have also been having red and "sandy" eyes for the past 3 weeks. I went to see my ophthalmologist but he didn't find anything. So my guess is its due to sleep deprivation. two other things: I feel like I have a heavy body and constant pressure behind my skull and eyes (and sometimes it's hard to focus my eyes), even though I have been regularly exercising as usual... & my resting HR also went up from it's usual 40ish to 50-60ish bpm (feed from my applewatch). Sorry for bothering you yet again with my health "problems", maybe I'm overreacting again but I really don't feel like going down the rabbit hole once more... I guess I wonder if it's common for someone that has had insomnia to go through these kind of symptoms (knowing that I don't feel hyperarroused at all + I havent had any panic/anxiety in weeks), or maybe I'm just experiencing another kind of sleep issue now? what do you think?

[@thesleepcoachschool8192]

Hi AA! Sorry to hear what’s been happening but, I’m glad you’re here! And, also, very happy that you had been sleeping well. Whenever someone has been sleeping well and then go on to have a speed bump, I always take the opportunity to point out that they’ve slept well because they let go, they were willing to have insomnia, they were not trying to control sleep. Go to sleep ALWAYS comes from a place of less effort. And if you’ve gone to that place once, you can see how you get back there too! The mind is basically a safety machine. It’s main function, perhaps at some level it’s only function, is survival. When you have trouble sleeping, it alerts you that this is a threat and a problem and it wants you to make sure that you’re taking action. It places you in a state of hyper arousal, state of anticipation and readiness. When you sleep better, it is because sleep is no longer on the radar and the rain is not asking you to stay safe from anything in particular. Now sometimes this radar can be reactivated. You sleep less for some reason and now The brain is kind of nudging you to take sleeplessness seriously again. One way it does this is to point out things that are different. It wants to make sure that you’re not missing anything. It tells you that this time is different, maybe before you had more trouble falling asleep and I have trouble staying asleep, maybe the nature of your sleep seems different, maybe time skip so I had to, maybe have jerks, maybe you feel warm, maybe if you feel cold, maybe you have numbness, maybe you feel dizzy, anything that makes a difference the brain feels is a reason for you to take it seriously. Oh and it’s very common to hear that eyes are itchy or painful or dry when one has trouble sleeping. Tinnitus is another common one... So you know I say when it comes to insomnia, it’s always a safety thing. It’s always the brain trying to keep you safe. You’ve been there before and you have gotten to a place where sleep now longer was on the radar! When you go in the direction of education, understanding - then you worry less. When you worry less you can take a step towards okness, being ok with sleeping little on a given night, being ok with being awake etc... and then, when okness sinks in, you’ll sleep well again! AA let me know if this made sense and thanks for being in touch!!

[@Yakise]

@@thesleepcoachschool8192 Yes that makes a lot of sense! The brain really is a sneaky fella. I kind of already suspected that I was unconsciously screening myself again, looking for anything out of the ordinary, so it's quite reassuring to hear this from you! I think I should screenshot your explanation and stick it on my wall, maybe then I'll stop overthinking the physical perception I have of myself once and for all.. I any event, thank you so much for clearing my doubts once more :)

[@thesleepcoachschool8192]

Animated Art I’m super glad it made sense 👍And I really like the way you worded this here about screening yourself... I’m gonna adapt that obsessing! If not on a wall, I think it may now be stuck somewhere in the mind and always accessible. Do stay in touch and, hope you’ll have a nice weekend coming up!!

[@Yakise]

@@thesleepcoachschool8192 sorry for only answering now, Uni has started again for me and I'm trying to deal with my life as best I can in this state.. I feel really sleep deprived again and I'm back in a full blown awake-the-entire-night kind of insomnia. I feel really weak and unwell and it's hard to focus on my courses. But it's different - like I mentioned in my message 3 days ago - I am very very sleepy (not just tired) as soon as 10pm hits and I struggle to "stay awake", and once I finally give up at 11:30ish pm I just lie in bed... I remember a few weird dreams whenever I get up during the night to go to the toilet but I never feel like I have slept. Even if it's paradoxical insomnia, I'm nowhere near feeling refreshed when I drag myself through the day, so it gets harder again to ignore my lust for sleep. And like I've said, since I feel faint and dizzyish I caught my mind wondering back to SFI, which is stupid in so many ways, especially because if it is SFI, then I can't do anything about it anyway, so why even bother? I think the only way to overcome this is by going back to a 1:30am to 7:30am sleep window and get up if I feel like lying awake to long. But it's really hard to exert stimulus control when you feel like not sleeping the entire time you lie in bed (how do you deal with that?). I know the only thing that can help with insomnia is CBTI but maybe if I get my doctor to prescribe myself a sleep study so that I can let go of my SFI fear will help clear out this lingering thought?

[@thesleepcoachschool8192]

Hi AA and I’m happy to hear back from you although sorry of course to hear that you’re struggling with sleep. One thing that is always good as the attributes trouble sleeping to something obvious like going back to University. That way it is less mysterious and strange and there is always helpful. Do you know when the mind has a certain idea, it’s kind of like a rumor in your brain. And you know how when for example a celebrity goes on record to try to dispel the rumor, it just fuels the fire. When you’re trying to dispel the rumor it seems like there really is something going on, why otherwise when you try to dispel it? When the mind has this rumor that for example you have SFI, then the more you try to prove that you don’t, the more sticky the thought often becomes. Let’s say you have a sleep study and it’s normal, well then guess what, your mind can find a way to get around that. What is the night of the sleep study wasn’t typical? What if they misinterpreted? Etc, the mind always finds reason to hold on to a belief that it thinks is the safest for you. It’s trying to protect you but sometimes gets a bit carried a way. If you on the other hand say, ok the rumor may be true, and I’m not going to waste any energy trying to dispel it, then there’s much less reason for the brain to keep nagging you about it. It gets old when you’re not trying to dispel a rumor. So when you said - well nothing to do anyway if I had sfi, that’s imho the more effective way of being less bothered by that rumor... And you know, the mind also always finds reason to tell you that this time it’s different. Because it wants to keep you safe and make sure you don’t “miss anything”. And maybe it IS different, but that’s really not important when it comes to insomia. Insomia is always caused by hyperarousal and hyperarousal can create all kinds of patterns and experiences... I think for someone who is completely new to cbti, it’s good to have a sleep window. It’s one of the few proactive things you can do. It’s good in the beginning but, soon after starting a program it’s good to start letting go and not have any rules besides you know, getting out of bed aboit the same time every morning. That’s good for really everyone who needs some predictability whether you have trouble sleeping or not. Now, when you are having trouble sleeping after having used a sleep window, then going back to one very easily becomes an effort. It becomes something you’re trying to make yourself sleep. It becomes a sleep effort which makes things worse! So I think overall a better approach is to go towards acceptance and okness. Stop checking the time at like 10 pm and then just go by how you feel. Have things planned to do at night that are enjoyable or productive, perhaps school work? Turn wakefulness into an asset instead of a liability! I think that’s always the way to go. Not easy, but you’ll do it I’m very confident!! Hang in there and let us know how things go!!

[@outrun2outnow]

What was the official cause of death then for Kasper's mom?

[@thesleepcoachschool8192]

Sfi. In fact, he was a guest on the channel, but there was all this echo so I couldn’t use it! We are repeating the episode on Friday. I think it will really change things for people worried about sfi to hear Kasper share what his mother went through. What really struck me talking to him, and what he pointed out, she was never worried about sleeping little...

[@chrisredfield5502]

But there are some cases in which insomnia appeared as the first symptom, or not?

[@thesleepcoachschool8192]

Hi Chris, As you know there is very little literature but what I understand is that with the familiar form sleep disruption can be a first symptom. However we have to remember that sleep disruption or changes in sleep is not the same as Insomnia. Insomnia is when we struggle with fear and anxiety, we wonder and ponder and try to figure out what’s happening and this struggle leads to little sleep. Sleep disruption on the other hand is for example when someone with Ffi sleeps little, but there’s no emotional reaction. What I understand about the sporadic form is that sleep disruption is not a common first symptom. But what I think is most important is to understand that sleeping a little is not at all the same as Insomnia!

[@chrisredfield5502]

​@@thesleepcoachschool8192 You know, I think I have a type of fatal sporadic insomnia, 5 months ago I started with severe insomnia, first I started sleeping 4 or 5 hours with nocturnal awakenings, and so on for a week until I got a little anxious and lost sleep, I started using sleeping pills, with them I only slept 3:30 hours a day, I could not sleep more than that after waking up, it was very difficult, but after a few months I did not give more importance to the matter and tried to sleep one day Without the pill, I said yes I don't sleep, I don't sleep, and that's how it was, I couldn't sleep at any time, but I didn't care, even so I didn't give it importance, and I kept trying every 3 days not to take the pill, I couldn't sleep despite of being calm, and not thinking about anything, I stayed in wakeful mode all the time, I just can't sleep, I tried not to give it importance until recently, that the pills are no longer having an effect, I sleep that amount but every 2 or 3 days, now I think it could be an insomniac io sporadic, and changed from medication to quetiapine and it is the same, my psychiatrist says that there are many pathologies that cause insomnia, but I don't know what it is due to! it should be noted that I do not have any other symptoms, but the insomnia is being progressive, if it is not sporadic insomnia as such, it is being just as lethal. I have also tried everything, habit changes, sleep hygiene, but nothing. I do not know what to do. Sorry if my English is not understood but I am writing to you from Argentina.

[@thesleepcoachschool8192]

Hi Chris, You know, I think your English is great! And the fact that you can express yourself so well in a foreign language, the fact that you can keep track of what’s happened with such precision, this says a lot about how well your brain is working! Now, what I thought was really important here was to not the simple fundamental truth with sleep: the more you try, the less you get. Keep this in mind when you ponder “I have also tried everything, habit changes, sleep hygiene” ...no wonder someone isn’t sleeping if they’ve tried everything! Often what really helps is the most tricky, trying not trying. Feel free to send a message to the link on our website if you’d like a longer reply in open class. This said, I think you’ll find much that will help here on the channel. Hang in there and be in touch!!

[@prabhpaul1424]

Sir i am 18 years old, from mar 2020 , i had just difficulty in sleeping as well as I have horrible unwanted thoughts all the day. After few months, I start to sleep at my own without medication and got 5 6 hours a sleep and one day i had a suicidual thoughts and from that day, I was never able to sleep without medicine. Sir, is there's any chance of ffi Or sfi but my parents have not these type of difficulties. Why can't I sleep without medicine now, can is this similar to sfi Or ffi

[@thesleepcoachschool8192]

Hi PP, sorry to hear about what’s happened but glad you’re here. I think there’s much you can learn here that can help. Firstly, only unwanted thoughts become recurrent and bothersome. When not resisted, thoughts are fleeting. Let’s take a look: - Thoughts and emotions have very specific practical purposes. And they are actually fleeting at baseline. Imagine a squirrel that sees a car coming this way. He becomes really scared and runs away. But even if it’s on a different street it starts eating on a nut! It literally nearly died but now it’s eating seamingly happy! This is kind of a silly example but it just shows that emotions such as fear or anxiety (which come from thoughts like all emotions!) have that practical purpose of taking us to safety. But when we are safe, those emotions dissolve if not kept in place by ongoing thoughts! The difference between us and a squirrel is that we are Homo sapiens sapiens, we are man who can think about our thoughts. We can start to think that things like thoughts and emotions are wrong and that they shouldn’t be there. And when we try to get away from them, they stick around. The reason for example that so many people say that they cannot shut off the brain is that they’re looking for a switch. In other words again, thoughts and emotions are fleeting except when we try to stop them or control them. So as tricky as it is, it is when you allow any thoughts to happen without judgment and just sort of tuning into them without doing anything - that is when they become fleeting again because you’re not trying to stop them. - Now it’s very common to find that medications have no impact. In fact, they can’t make you sleep at all. Medications really work by delegation. The fundamental truth with sleep is that the more we try the less we sleep. When we take a sleeping pill and think “good, I don’t have to do anything about my sleep, it’s taken care of” then we are no longer trying to sleep. We delegated the task! It’s true that they are sedating, but sedation alone doesn’t make you sleep. Sometimes people take a bunch of sleep meds in desperation and sleep no more. Because if we still try to sleep, it doesn’t happen. If you’ve been delegating sleep to a medication for some time, then it may be tricky to see that it was the delegation itself that helped, it can even be scary because it seems like there’s one less thing that can give you control. But you know, seeing that it actually always was your own body that produced sleep, that all sleep is natural, this can help so much with confidence that nothing is wrong with you! - All you shared here is very common, and you can check the playlist on SFi, it’s in the description of any new video. My take is that anyone who can write a comment on a KZbin channel doesn’t have sfi. - Hang in there now and be in touch!

[@arcpuffin]

Ehhh, but I gotta be honest, other than Michael Corke and the Italian family first studied, every other story I’ve heard, and that would be 5 other cases BESIDES the first two I mention, none of them mention insomnia as a symptom.

[@7upjello119]

It's not deep and proper sleep. This video is so misleading it's infuriating.

[@pageylruatahmar9233]

Then what is? Not to sound condescending in any sort of way but, would you please care to explain? Since you seem to possess the knowledge that the rest of us are lacking.

[@7upjello119]

@@pageylruatahmar9233 this man is claiming that fatal insomnia is "not actually insomnia" when there is recordings and documentation of real people who suffered from the rare, terrifying affliction proving that is obviously an extremely idiotic attempt at "making people feel better" a woman, who mind you shared her nightmarish ordeal on youtube, wasn't able to fall asleep anymore, not at all, not even a little bit. doctors didn't believe her, nobody believed her, and what do you know? she had the disease. Pointlessly suffered for months. People like this idiot are causing seriously sick people to suffer more than they already do because nobody believes them. And not just from sleep disorders, but any illness, the abhorrent belief that if you simply change your thoughts you will be magically cured. it's obtuse, dangerous, and very, very dumb. You can't sleep? take a fucking valium and stop letting yourself be spoonfed by quacks who want your money and forcing you to endure hell with "natural remedies"

[@7upjello119]

​@@pageylruatahmar9233 kzbin.info/www/bejne/jHSkoIGCpsmKqas

[@7upjello119]

@@pageylruatahmar9233 kzbin.info/www/bejne/f3vdi5Z8pLlgZ6M