Sporadic Fatal Insomnia Case 22 in the world - Kasper's mom
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- Опубліковано 9 жов 2020
- In this unique episode, Kasper shares his eye witness account of how his mother passed away 14 months after having her first symptoms of what turned out to be sporadic fatal insomnia (sfi). The diagnosis was confirmed the only way it is possible, by autopsy, and this was the 22nd registered case in the world, and the first from Denmark.
We learn that sfi is not an insomnia and that during the rapid progression of symptoms, sleep was never something she worried about. - Розваги
What pisses me off is that this should have millions of views, it's so wrong, people watch shitty content all day but this valuable content gets less recognition, it's unfair
HH, you know sometimes I feel exactly this, some random person talking about supplements has like millions of views! Here we put our hundreds of educational ones and we aren’t even a rounding error… but, I think it just will take a LOT of time… thanks to the community here, and word of mouth, I feel that things will change 👍
@@thesleepcoachschool8192 I pray that it changes, this is so educational and pioneering, it's worth so much more 🙌
Couldn’t agree more!!!
True
It's not that great talking about someone dieing and there is no reason to be angry. 😆 All the activity on YT, is basically 70% children... if your judging based on the trending videos, I believe that many of those videos are actually boosted by bots and it is just tons of kids on here watching them, no one really likes the kind of stuff that is on trending most of the time except children and If you want to make a video and get a million views, real easy, 2 words: Mine Craft. I see the benefit in being able to recognize the symptoms of the disorder.
People saying ''I have these symptoms, omg I have fatal insomnia, etc, etc'' need to take a step back, and access the situation. Unless it runs in your family, it is borderline impossible for you to have it. I think people are having insomnia plus health anxiety/hypochondria and it messes with their head. But having insomnia does that to you, your body feels sick, and you constantly feel off. I know how it is. But people are so quick to jump to conclusions.. Stay strong!
PLUS Here's a list of symptoms you get BEFORE any signs of Insomnia (In both FFI and SFI)
-Dementia
-Seizures
-Constant Sweating
-Involuntary movements
Yes, especially considering that this is a diagnosis that can only be confirmed post mortem... And the behaviour Kasper described that his mom had of sleeping all day makes sense, bc although you can get some light sleep you can't get through the REM stage of sleep anymore, so the body will force you to fall asleep to try to get to that crucial and repairing cycle of sleep... But unfortunately, due to the prions destroying the part of the brain responsible for sleep, this doesn't happen anymore and it cascades to a plethora of symptoms he described before the person unfortunately passes away
Prion diseases are extremely brutal 😔
Thank you for this, Kasper.
Thank you Kasper -- I know this would be hard to share but I really appreciate it.
Very kind and compassionate soul for sharing such a tragic story to help others.
Thank you for sharing your experience. I’m so sorry about your mother.
This is such an important interview! So many excellent points were made - one being that SFI is only diagnosed post-mortem. This makes perfect sense given it’s an extremely rare, multifaceted prion disease.
Thank you so much Kasper, for going out of your way to demystify and raise awareness about this disease. I can’t even begin to imagine how hard it must be to go back and rehash the devastating course of your mum’s decline. Sincere condolences to you and your family.
Of course, many thanks to Daniel for making this interview possible!
Such a tragic story. I'm so thankful he was willing to share his mom's story with us.
This video erases alot of concern in have from time to time your a true hero Daniel you really helped me and I think alot of anxiety sufferers.
Zoltan, I’m so glad - this is exactly what I hoped when Kasper contacted me. Thank you for the support 🙏
Thank you both for this interview and post. Casper, my heart goes out to you , may He bless you always. 🙏❤️
🙏 thank you so much for the support and kind words
WOW Kasper thanks sooooo much for sharing . Very valuable video, and thanks again Daniel you are always great!
Thanks Malena for all the support!
ive just found your channel about 4 hours ago and since then, i keep binge watching all its content even though i dont have any sleep problem of any sort. This channel is criminally underrated and i hope it reach to the point that deserves. Thanks for your efforts sir.
“Criminally underrated” 😝🤗! One day, thanks to support like yours, we will reach more people, but this phase is nice when I can see all wonderful comments!!
Thank you guys so much for sharing this, I feel so awful that this happened to your mother. This is wonderful education for everyone out there living in fear.
Thank you for your heartfelt comment! We want to assure you that your comments are seen and deeply appreciated. Your support means a lot!
All of y’all are on my prayers, fear itself is so hard period.
Kasper, I am so very sorry for the loss of your mother. Thank you for giving this interview. It will help others.
I’m so sorry for your loss Kasper! Thank you so much for sharing your story.
Here to say, you have some quality information and content here. #22. Insanely important insight for one of the most scary diseases on our planet. Thank you for jumping right into this sensitive issue with Kasper, he seems like a great guy, and I hope he's doing better now on today.
Thanks so much for the support, and you know, I knew from the moment I read the first email from Kasper that this was going to be one of the most important episodes on the channel.
I think What your doing is extremely important especially for people with major Health anxiety and concern ive Been looking for good information for 2 months and im just now finding your content and it has finally given me some relief concerning this disease and now i can convince myself i dont have this
So so glad to read this Mani. You know I was conflicted about even talking about this topic because I don’t want to scare anyone.. but I see now that it was important to go in the other direction. Thanks for sharing this!
I'm so sorry for your loss, Kasper. What a cruel disease. May your mother rest in peace.
Thank you so much for posting this, thank you Kasper for sharing your story! I'm sitting here crying my eyes out, both because the story is so sad but also because it's a lot of relief. I have been terrified that I would get this for almost ten years now. I've had struggles on and off with insomnia. There was one incident, however, that got so bad I only got 2 hours of sleep in almost 2 weeks and ended up in a psychiatric ward hallucinating. There is still no consensus on why it happened to me among doctors so I live with a lot of fear that it will happen again. This helps so much though, because my biggest fear for those weeks of course was that I was dying of SFI. This is so helpful, I can't thank you both enough for sharing such a difficult story. Kasper you are helping so many people!
So grateful you shared this Lori… this was exactly why Kasper wanted to tell us about what happened with his mom. It will make him so glad to see 🙂
Wow great information on such a rare disease. So sorry for the loss of your Mother Kasper, and there's no question she'd be happy that you're helping others with this crucial knowledge of symptoms. I have sever insomnia, so bad that I thought I may have this, so this info helps relieve some anxiety about it. In other words I'm certain I don't have it. Much thanks to both of you!
Rover, thanks so much for this kind comment. This is exactly why Kasper wanted to come on 🙏
I finally built up the courage to watch this. First of all thank you Kasper for sharing your mom’s story. It’s so crazy how they call us fatal insomnia and it’s mostly not that. I have been hesitant to read too much in this because I don’t want to get symptoms and freak out. I have intense hypochondria and I know better than to google too much into any illness. I feel a little better listening to this. I wish the medical community looked more into prions as they are scary and mind boggling.
Well done Amy, and so glad you’re sending some relief. One day, hopefully the medical community will share things in a more helpful way
Thank you for this video. I questioned whether I should watch it or not given my fear, but I'm glad that I did. I'm sorry for your loss, Kasper. It must have been so hard to witness and go through, but I'm so grateful to you and Daniel for putting this out there for those of us that are so afraid out of our minds of this disease. It's crazy how something so rare is such a big concern to a lot of us.
Thank you for these kind words Rennles. I know it means a lot to Kasper to know that him sharing helps put minds at more ease...
Great video about something so unknow and mysterious! It makes me feel a little better about myself, since i'm worried about SFI and FFI for 10 months straight.
Kasper is such a humble man, it's definitely not easy to discussis about something like your mom's death, i hope he's doing well! I also feel sorry for his mom, may rest in peace.
Thank you for you content Coach Daniel! Sending love from Brazil 😀🇧🇷
So glad you found it and yes, Kasper is such a wonderful human, volunteering to share these difficult times to ease anxiety for our fellow humans.
And anytime, so glad you’re here and thanks for the support 🙂
very well made and informative. thank you for sharing this
My heart goes out to Kasper for having lost his mum in this excruciating way. Thank you for your courage and generosity in returning to tragic memories to help us all.
The questions I'd have:
1) Sporadic fatal insomnia, like Creutzfeldt Jakob and other prion diseases, have been noticed to be triggered by intense stress, trauma, or even physical brain injury. I do not know if you want to talk about it but I wonder whether this could have been the case for your mum as well, that is, whether she experienced something especially distressing or disappointing in the period preceding the illness.
2) Did your mum feel sleepy during the day, that is yawning, eyes closing etc.? You mention her trying to rest but I wonder whether a condition usually related to fatal insomnia is never feeling properly "sleepy" - as contrasted to exhausted, very tired and so on.
3) This disease is horrible but from what I have read, it does not necessarily involve direct physical pain. Except for the latest stages when the whole body is damaged by the lack of restorative sleep. Having read "The Family Who Could Not Sleep", I was struck to notice that the children of one of the first identified sufferers of Familial Fatal Insomnia realized the diagnosis of encephalitis given by the doctors was inaccurate was that, contrary to that diagnosis, their dad was not in pain. I sincerely hope this was also the case with your mum. In the book the sufferers are also sometimes able to snap out of the oneiric sleep - the agitated wakeful daydreaming - if for a short time, until the very last stages.
Thank you very much again.
Im a person who has had a severe hypochondria (fear of diseases) for about 1year. I also have anxiety disorder and I eat an SSRI medication. FFI and sFI have been one of my main fears even tho I have no family history of prion diseases. I really want to thank Kasper for doing this interview and I want to thank Daniel for posting it here. This really eased my mind and Im not at all conserned that I have this terrible disease anymore. Sorry for Kasper's loss. I hope is ok.
Vige, thanks so much for sharing this. It was for the very reason to ease worries that Kasper shared this 🙏
I am suffering from panic disorder and anxiety disorder, depression and insomnia since early 2020. I am taking antidepressants like mirtazapine and paroxetine and lorazepam 3mg daily. I am scared that it not SFI
@@thesleepcoachschool8192 I am suffering from panic disorder and anxiety disorder, depression and insomnia since early 2020. I am taking antidepressants like mirtazapine and paroxetine and lorazepam 3mg daily. I am scared that it not SFI
Vige I feel for you! That must be hell.. But from the most honest place within me... Eat a 500mg edible and CHILL BRO.
@@Jay-pt1zh Yes well Im whole lot better with SSRI medication and a good therapist. I also have a lot of experience with Cannabis and I think its not good (THC I mean). CBD is good for the psyche I think. Have a wonderful day my friend.
I was recently going through polysubstance withdrawal (alcohol and benzodiazepine), and my anxiety and insomnia was so terrible and tormenting that I almost convinced myself that I had FFI. I know it sounds goofy and moronic, but I really couldn’t get a grip on my own rational thinking considering how bad the anxiety and fear was. I appreciate the video explaining some of the symptoms. I am also deeply sorry for Kasper’s loss. I pray your mother may find peace. God bless🙏
Thanks so so much for the thoughts, this is exactly what Kasper hoped when he volunteered to be a guest. And, same here, sometimes we are all frazzled and even though we know what we worry about is sorta ridiculous even, it can still happen! Be well and be in touch 🙂
Daniel thank you so much for your channel it's good to know theres someone there Margarida
Thank you Margarida for being here and for this kind comment!
This conversation is such a relief for me as I was struggling to sleep for the past 3 months with lot of anxiety and feeling depressed and tiredness thinking that am I having Sfi. But this video cleared my doubt. Now I am feeling so much relieved. Thanks so much Daniel.
I am so happy it cleared your doubt! I honestly feel so blessed that Kasper reached out to me and I had the privilege to share this important message... Thanks for the support!!
Bhai kaise hai ab
I am suffering from panic disorder and anxiety disorder, depression and insomnia since early 2020. I am taking antidepressants like mirtazapine and paroxetine and lorazepam 3mg daily. I am scared that it not SFI
@@thesleepcoachschool8192 I am suffering from panic disorder and anxiety disorder, depression and insomnia since early 2020. I am taking antidepressants like mirtazapine and paroxetine and lorazepam 3mg daily. I am scared that it not SFI
This channel is a blessing, Daniel. I follow exactly one year, when I had an anxiety attack and spent two days without sleep before doing a job, and obviously I thought I was with SFI.
I was very scared reading the comments on your channel, but super comforted listening to your explanations and exclusions. I had already heard about the fatal family insomnia in 2013, in a documentary I saw on television, but due to the misinformation that the disease has on the internet - or better, it did, thanks to you! - I was very scared before I found that channel.
Following your work and Coach Michael's, I practically stopped being afraid of insomnia and learned to celebrate being awake! This is super important for those with hypochondria like me. I learned from you to separate information from knowledge!
I'm going to see your interview with Kasper before bed, as I always do, it calms me down to watch your channel every night, but God bless him for despite everything trying to bring more knowledge about SFI on the internet! God bless you and return everything you are doing!
I always wanted to write for the channel, but my doubts are always answered by others. But without a doubt when I have an anxiety attack again, I know I can count on you guys! 🙏🏻
Love from Brazil! 🇧🇷
Thank you so much for your very kind words Jonathan. So happy you found our channel!
Jonathan- wow so happy you’ve found so much value here and thanks so much for sharing!! Hearing that you and others are finding the channel helpful is what keeps the tank always full 😊 information and knowledge, good point - it’s when we contexctualize and make information easily digestible that knowledge forms. And with knowledge, there’s that light that keeps one from the fear of the unknown... thanks for this insight!
Be well and stay in touch!!
Queria tenta assistir esse vídeo, mas n sei inglês, que tristeza..
spero che un giorno avremo contenuti in tutte le lingue .... scusate finora .. Grazie per aver dedicato del tempo a commentare!
Thank you Coach Daniel and Thank you Kasper! Thank you so much for this treasure of knowledge!
Thanks you! It means the world reading these lines 😊
@@thesleepcoachschool8192 Coach Daniel, thank you for giving us this information, it is important for hypochondriacs. I want to talk about "case 24" of sporadic fatal insomnia, because I think it is a little different from the case of Kasper. I was on reddit but one post caught my eye. "I am one of the 1 in 1,000,000 with sporadic fatal insomnia. Ask me whatever," it was titled. It was about a child who was diagnosed with SFI. I was surprised because the boy is very young, he is 17 years old. This boy can only sleep 8 hours a week and does not suffer from ataxia. I really don't know if this case is real, but I want to share it and ask three questions.
Can some cases of SFI be different from others?
Can a genetic test determine if you have SFI?
Because I read that there is a mutation at codon 129, which is characteristic in SFI without being the familiar form. And the last questions
Can other diseases cause progressive insomnia?
Thank you for the information and sorry if my english is not the best, I'm hispanic
Hi Paula,
Thanks for the encouragement! I think the answer here actually is something we talked about towards the end of this interview.
If someone has the capacity to use Reddit - they don’t have SFI! It’s a very devastating disease...
There’s not definite test that can be done when one is still alive. I know African trypanosomiasis does cause progressive reduction of sleep, but if I recall this is a much faster process.
Hope this helps and your English is very good!! Be in touch 👍
@@thesleepcoachschool8192 Thanks Daniel
Yeah, this guy said the doctors diagnosed him by PET scan, but we can't be sure until they do an autopsy and analyze his thalamus. I really hope this guy gets better, he seems to be a good person, luckily this can't be SFI.
Thanks for clearing my doubts, have a good day.
Здравствуйте, я из России подскажите пожалуйста, где вы нашли статью об этом мальчике
🌹🌹🌹Kasper I am so sorry for your family’s loss. 🌹🌹🌹
As someone who has a fear of diseases, i even diagnosed myself with brain cancer, lung cancer, and a type of liver cancer and now this, you calmed me down so much, thank you. I can't sleep that easily because of my fear of diseases, now i can sleep a bit easier knowing only 22 people have this.
Anytime 😊! So glad you found this and, check Insomnia insight #496, it’s for anyone having had this fear of diseases
@@thesleepcoachschool8192 Thank you, I'm going to watch it now!
@@thesleepcoachschool8192 Thank you, I'm going to watch it now!
@@tonjie.God bless you. I won't tell you what to do, yet watching disease programs are about consuming the negative; focusing on health and freedom is as equally consuming, yet what the difference. Using your obsessive compulsive traits to your benefit. Turning the weak into strength; everything is a two sided coin. You are primed now for excellence. Just try it.
I was having a pretty severe bout of anxiety about having this disease, as its been 3 months since I've had any sleep longer than maybe an hour.
Thank you guys so much for going in depth about this disease.
Thank you for the support... hope you found it helpful!
you feeling any better?
I went through this for one week. For some reason I stopped sleeping at the urge to sleep and drift off never came. This was a few months back and I didnt know of this at the time. It was for sure the worst experience of my life so far. Being awake for over 140+ hours no sleep. You be so so weak, your mind is on but its off. Its like you're alive but dead at the same time. Around the 4th day I couldn't even walk down stairs straight without feeling whoozy. Being awake that long does make your brain enter a drunken state and you behave like that above the alcohol average level. The energy and everything was so low. I thought I would die. Doctors knew nothing and family thought it was bullshit. By God's mercy it did not go on any longer than that, unlike these other soldiers that die
Kashy, thanks for sharing this. And you know, when I read this I think that it was thanks to you abandoning the fight, you stopped trying to battle to sleep or to be calm, that’s why this became a shorter episode and not a long one. This is the confusing part, the person that soldiers on states struggling, the person that the abandons the struggle becomes free. Thanks again for sharing!
@@thesleepcoachschool8192 I appreciate the message and your service for this cause. It really is a generally unknown topic. Keep at it brother 💯
It's hard to find fair conversations like this. I mean fair where no one is talking over the other person and where you can see both talkers are relaxed and interested. Really enjoyed this conversation. Your a great host
So glad to read this Adam, thanks for letting me know 😊
@@thesleepcoachschool8192 no worries
@@thesleepcoachschool8192Worrying stuff and God bless to this guys late mother. I know that this video is old but I surely do appreciate it for what I am going through with what I think is some form of insomnia due to tinnitus in my ears keeping me up at night. You got a new sub and I hope you keep spreading this info and calming those with and without this disease!
@rezonxthepiggert9647 so glad you’re here and thanks for the support. You know, if you look at the latest live video we posted, there’s a nice discussion towards the end on tinnitus. Be well now
This has been a great help for me. Recently my time of sleep has been cut to 5 hours, i just wake up around 5 hours after sleeping on my own and it caused me a great fear. Like many people have said it in the comments I suffer from hypochondria, and this disease always is at the back of my mind. Knowing that the lack of sleep really is actually negligible puts me at ease.
So glad you found this and it’s been helpful 🙂
Thank you so much for sharing your mother's story with us Kasper! May her memory be a blessing 💔
This is so important to spread awareness, not only to make more insomniac ppl aware of what's actually like to have SFI but also for healthcare professionals... Bc I have a strong feeling that SFI, CJD and other prion diseases are very likely underdiagnosed, although it's still rare conditions
I wish I could translate this to my mother language (Brazilian Portuguese), I've seen some case studies of sCJD here that were ruled as "inconclusive"/not enough evidence for sCJD upon autopsy that I really think that might've been SFI cases that went undiagnosed, either bc of lack of resources (unfortunately this is a reality in many parts of Brazil) or lack of training to identify the patterns of a SFI brain
Like, the symptoms of those ppl I've mentioned looks just like what Kasper's mom went through... And unfortunately there's no way a 2nd autopsy can be conducted for SFI, since all ppl who died with either an inconclusive/confirmed sCJD/Kuru (yes, we had 1 kuru case here) diagnosis must be cremated to avoid post mortem prion contamination... Maybe it's me rambling too much, I just do a lot of research about prions and I do have interest in going to med school and becoming a prion specialist
And I also do have my struggles with insomnia, I know that in my particular case it's a combo of anxiety, bipolar II and possibly systemic mastocytosis/MCAS (with my skin and intestines being the most affected by mast cells, idk if this also plays a role with my insomnia), so even if I'm 3, 4 days straight with no sleep (even with meds that make you drowsy) and hallucinating I know it's that messy combo at it again lmao
@@palomathereptilianare you doing ok?
As a neurologist myself, I want to thank Kasper for his time and valuable information on this dreadful disease. I was a GP in the UK until the start of the BSE pandemic (1996) I became very interested in the new form of CJD which was labeled vCJD that mostly effected teenagers, and went to do a residency in neurology. Since being a consultant I have never seen a case of FFI but have seen 3 cases of CJD and 1 case of vCJD. Most of my day involves diagnosing epilepsy, multiple sclerosis, and Parkinson's in that order. Stay healthy and happy my friends.
Thanks for the well wishes and for taking the time to comment 🙏 Hope you’ll also be well and - that you have a nice weekend!
Hi, even tho this video is 2 years old, I stil wanted to say thank you. So, i've struggled with insomnia my whole life. I had really bad anxiety as a child and got use to sleeping late, and then kept doing that as an adult. Going to bed early is still difficult for me but I don't fight it any more, i'm ok with being a night owl. 2 days ago, I had what I call a "real" insomnia: i got to bed, thinking I was going to sleep and just didn't. Usually it wouldn't really bother me but this time it did because I was working the next day (which, i think, is why i had the insomnia). I don't know why but I remembered FFI existed and started being afraid. Then, last night, I took melatonine and fell asleep but woke up 4 different times, which NEVER happens to me. I've been scared all day long and my health anxiety came back (i've not had symptoms for 10 years so that's telling something) and i started researching. The title of the video scared me SO MUCH because i didn't know sFI existed, but watching it i feel better, especially knowing that sleep isn't really the worrying part of sFI (and also knowing that there is no cases of FFI in my family). I think i slept weird last night because of anxiety... I'm gonna try and stop thinking "i have to sleep", and think about this video tonight!
Appreciate so much how you took the time to share this and - you’re so welcome. It was really brave of you to watch, and courage leads where we want to be 😊
I have an insomnia attack again and a tremendous fear of trying to get some sleep just in case I fail. I am an English teacher and I need to be energetic and alert in front of children and that really freaks me out. What if I get zero amount of sleep and lose my job. I am also scared of brain degenerative conditions that impair sleeping and sfi is a chronic phobia. I have read some cases where insomnia was the first symptom that drove certain patients to the doctor but I guess that it was accompanied by other symptoms as well early on. I cannot imagine how difficult it must have been for Kasper and his family. I don't want to hurt my family with my death or by being dysfunctional. I am trying to get some sleep now and I feel emotionally drained. Even though Kasper seems reassuring I still get the Idea that I suffer from a rare degenerative disease that won't let me sleep. I have also watched a video of an Indonesian man filming his jolts and inability to sleep and he was later diagnosed with SFI. That really scares me and I feel terrified as we speak. I wish there were more videos like this one with Kasper and from doctors as well to shed some light on these cases. It's so frustrating that you have to research online while stressed and join pieces of information together Just to ease your mind a bit. I also suffer from tachycardia and aural migraines from time to time and this aggravated my hypochondria and insomnia.
Hi there, and sorry of course this has been happening, but glad you’re here.
You know, one thing that can be really tricky is this loop where you have a feeling that worrying that you have sfi is actually what creates struggle…and then you try to not worry, you try to get those thoughts out of your head… but see the brain is a safety machine and the more you try to shut the alarms, the more the brain thinks “oh he/she isn’t wanting to listen, I have to amplify this alarm”.
So often what helps is to take note of the worry thoughts without trying to get them to go away. Saying “aha, this thought is there again”, maybe just writing them down just to show the brain they are heard… this can help so very much…
Hang in there and let us know how things go.
I’ve been dealing with emotional numbness and anhedonia due to DPDR disorder, I can’t feel tired, even with medication, I’m still slightly awake and if I do dream, they’re mainly lucid dreams, I have a hard time speaking, understanding convos, I’ve been told it’s just anxiety and it’ll go away, and I’m really hoping it is because this disease sounds like hell…I’m sorry for Kasper, no one deserves to go through something this devastating.
Hi Marion, sorry to hear but glad you’ve been hearing reassuring words. What you’re describing does sound very familiar to what many here experience when anxious. Hang in there and be in touch
Very sorry for Kasper’s loss. Something that makes me anxious is that I lay awake all night sometimes, although I haven’t yesterday
Thanks for the kind words of support here.. and of course this is very scary when you think something is wrong, this can keep all of us humans awake… glad you slept a bit easier, this happens when we start seeing that we aren’t in any danger..
You and Kasper are both God sent. 🙏
sworup Adhikari This will mean the world to Kasper to read, and it does to myself as well 🙏
Also i just wanted to say i am so sorry for your loss Kasper.
This video helped me at least somewhat to come to terms that I don't have any form of insomnia which is so fatal and severe. I started experiencing really bad insomnia after a really bad acid trip which happened a month ago. I didn't sleep at all one night, then the next I got around 10 hours of sleep though I woke up multiple times, then the next day I didn't sleep at all again and now today I slept for about 6 hours and it took me really long to fall asleep (5-6 hours). I hope this goes away a soon as possible because even the 4 days since it all started have been absolute hell.
So glad it did. This was what Kasper was hoping. If you listen to a few of the success stories, you’ll see that this is pretty much always the story. Something happens that makes us have one sleepless night (expected, normal) but then we can go “wait a minute, I didn’t sleep, this may be a problem”. And it’s this reaction that leads to us trying to sleep, trying to problem solve, trying to figure it out, trying things to make us sleep - this reaction is what creates insomnia. Once we understand and no longer try… it goes away.
According to a genetic analysis I’ve acquired an SNP for “prions disease”, notably “fatal familial insomnia”. I’m in my late 20s and very seldom do I experience a deep and restorative sleep. Consequentially, I am inundated with chronic pain but I’m unsure if it’s impaired my cognitive faculties. I experience chronic depersonalization, fatigue, and seemingly unceasing worsening insomnia which hinders every aspect of my daily life. I’ve experienced chronic trauma so I’ve always wagered, logically, it’s precipitated this problem, I wouldn’t be surprised if traumatic experiences manifest themselves as these genetic mutations. I haven’t been formally diagnosed, the prospect of passing from no sleep is frankly, nightmarish. From my understanding prions diseases are incurable but our knowledge of epigenetics is ever expanding .
First of all I’m so sorry for your loss, I have had worry that I had it but the only symptom I have had(if you wanted to call it that because she slept more) it shouldn’t even be called insomnia since her first symptoms were loss of eye sight and dizziness. How long did her lack of sleep occur? Before it turned into full sleep? I hope you’re doing okay. My anxiety has caused me to worry so much to the point I sleep only one hour a night and I toss and turn all night because I sleep really lightly. I also have muscle twitches and that’s about it. Your story changed my point of view. I’m a major hypochondriac.
Hi, i'm Carlos from Brazil, i currently dealing with the fear of having SFI, last night i couldn't sleep at all, i keep thinking about it to the point i would want to punch myself and verything in my near. I've always dealt with the fear of diseases, i used to worry about being schizophrenic, that's when i first discovered SFI and FFI. Past week i got diagnosed with COVID and i passed through some bad things that got my anxiety to be worse. I keep shaking and having these littles spasms, in my head and legs, i feel a bit dizzy... i'm scared at the point i spent the last night crying and having panic attacks... oh God help me. I hope his mother finds peace, he's really such a good guy.
Hi Carlos,
He really is, and he would be so glad you appreciated this, because you’re the exact person he wanted to reach, hoping to ease some worries. Hang in there
They found a lesion in my Thalamus and I’ve been having a big change in my thinking process. Things definitely feel slower for me and the left side of my body is weaker. My sleep patterns have slowly changed as I used to sleep easily but now everytime I feel myself falling deeper into sleep my body gets anxiety and wakes me up it’s very weird. If I wake up at the wrong time during my cycle I feel sleep inertia all day long. I do get some body twitches now and then but I try not to focus on that because everyone twitches sometimes. But I’ve cleared every test I’ve taken. If I’m not wrong I believe a spinal tap would rule out prions? That’s the last test I would do if things get worse. Hoping and praying this is not my fate as it’s so rare but thank you so much for allowing people like me to have a resource as the education on this subject is so limited. I’m only 24 and I have yet to find someone to describe symptoms with any prion related diseases with younger people.
Hey there! Thanks for sharing your experience. Just a quick heads-up: we're hosting live Q&A sessions most weeks and we'd love for you to join us! It's a great chance to ask questions, share insights, and connect with others in the community.
Hi Daniel and Kasper. Ffi and Sfi have become a real worry for me in the last 2-3 weeks.
I've suddenly developed trouble sleeping to the point of only getting as you describe for your mom, 1-2 hours in the early morning. I've also been dizzy for a week now but I'm still able to use my phone and watch TV although I feel I get tired easily.
I don't want to sound insensitive in any way, I just came across this video and I'm a little worried now :(
I understand those who have been suffering with insomnia for years and their worries perhaps being a bit irrational but as mine has only started in the last 3 weeks, I am becoming increasingly worried.
Thanks for any advice
Hi Mark,
Thank you so much for the comments and I’m very sorry to hear what is happening.
I think something that is very important is to recognize that worrying can cause you to sleep almost nothing, it can cause you to have all the symptoms you read about when it comes to fatal insomnia!
But in my mind he was the most important thing. There’s no way you can know if you have a fatal or not. So often, trying to figure it out really feeds the anxiety!
When you look for clues, you monitor your own symptoms, you read up, you ponder, then you spend all this attention towards sleep which doesn’t allow for good sleep!
So personally I think the best option is to kind of make a decision. If you believe you have it, well then it is time to take it advantage of the time when you still have your faculties. You can tell your loved ones what you feel about them. You can do things that you’ve always dreamed of doing!
If you decide that you don’t have it, well then you probably have insomnia and you can learn a lot from this channel that will really truly help you!
Hang in there Mark and please stay in touch!
@@thesleepcoachschool8192 thanks Daniel, I really appreciate the reply.
Is it really possible to feel this way and only sleep 1-2 hours with insomnia alone? I can barely function each day with it which has forced me to take time off work.
I guess that's why I'm struggling to believe it is insomnia alone because I feel so awful each day :(
Anytime! And you know, there’s another perfect video for you here: Insomnia insight 338. It explains why you wonder if all you’re experiencing really could come from hyperarousal. Spoiler - it has to do with the brain making sure it does not commit an error.
Please check it out and let us know how things go Mark!
@@markguy1600 I haven’t heard of any new cases for anyone named “Mark” so I’m going to assume you were fine. Did you get sleep?
Hey, this video really helped me with some of the questions and worries I had about this awful disease. Just to reiterate, in SFI, insomnia is not present, or at least not one of the first symptoms, correct?
Josh, so glad it did, this was the very reason Kasper wanted to share the story, for reassurance. And yes, Insomnia really is a struggle with sleep, it’s a form of anxiety, as that isn’t a part of SFI. Best!!
@@thesleepcoachschool8192 Thanks again! :)
SFI is a rapidly progressing dementia like CJD. Insomnia is one symptom among many. You wouldn't be on here typing, Googling or carrying out other daily tasks for very long if you had it. It destroys vision, causes disturbances of balance, vertigo, rapid cognitive decline & quickly makes you incapable of talking/walking/caring for yourself. It's not the insomnia that kills you but the physical destruction of your brain. Just like any other dementia. Memory loss doesn't kill you with Alzheimer's, it's the progressive destruction of the brain due to plaques & tangles.
I have nocturnal epileplsy (of simple partial seizures) and i share some eerily similar symptoms, fatal insomnia seems scary! So i feel for his mother :(
The moment my mind starts dozing away I'm at risk of a seizure (even while im still awake & conscious!) I get seizure aruas the moment I close my eyes and try to rest. The auras are hard to explain, but often a weird feeling like I'm floating, vivid imagery, a strange vibrating feeling in my head... etc. The actual seizure is harder to remember but usually consists of small muscle spasms, an exploding feeling in my head, and confusion. This can happen multiple times a night! It has given me terrible sleep troubles and causes a lot of cognitive fog during the day. Sometimes I get postictal physcosis from my seizures. It can be scary and confusing. I've developed much anxiety around sleeping :(
P.s. we are still testing out different meds.
Sorry to hear what’s happening but glad you’re here. Hope you find a nice way to more peaceful times. Be in touch
I am now at the same Point. I am not able to sleep an i have moto sensoric symtoms including fasciculations all over my Body and now i am thinking i have sfi or ffi. Sometimes i have trouble at concentration and sometimes it is getting much better. My neurologist says, there is no way, i could suffer on this i have also no family history of prion deseases. Also ALS is cleared according to my neurologist. But it is verry hard to belive. To all who thinking they having this disease, just think about how small the chance is, to have it. I pray for you all. I hope each one of you will have a good time later.
PS: Sorry if there are some bigger mistakes in my english. I am from germany and my english is not the best... 😅
I just found your channel and I find myself intrigued but also triggered and scared to even watch your videos. Do you think watching your videos could be a form of exposure therapy to stop being so afraid of insomnia?
Hi and welcome 🙂! You’re new here and already such an insightful question, I think absolutely, when we avoid this because we are scared of how we may feel… then attempt to we avoid being scared which inadvertently makes us even more scared of being scared. So yes, definitely there’s some exposure therapy when we watch what we think may scare us.
To clarify, fatal familial insomnia does have cases of sleepless patients. Which is why is called fatal insomnia.Now, in sporadic fatal insomnia, sleepless cases are rarely reported. Symptoms closely mimic CJD, Alzheimer’s or other dementia like diseases. I think a researcher pointed out that Sporadic Fatal Insomnia is known as a great mimick as no patients with the disease present the exact same symptoms.
To be hornest i did mention something simular for the first recording me and Daniel did a week before this episode, that got destroyed with to much ecco. But im glad i dont have to defend it and instead give my thoughts about it because im not entirely convinced in this fact that their should be that much of a difference between FFI and SFI. I don’t nessecary disagree that there are some difference, but i cant really find any source or strong hardcore evidence to confirm this and I didn’t want to bring more fuel to the fire of misunderstanding and conspirition theory’s. And i think their are some problems with that statement. Fatal Insomnia is a pretty specific attack in the Thalamus, with the same prion-protein. Ultimately it leads to the same damage of the brain and same symptoms. But obv. two cases will not be exact the same, we also have to look at personality and the overall health for each patient. Two cases with cancer will also not be exact same. We have to consider that their has only been 22 cases with SFI and maybe a bit more cases with FFI, spread across all continents and their for not enough of a sample to really come with conlusions and the largest study that has been made with this disease is a post mortal study from 2018 where 13 cases was reviewed and compared. In cases with SFI you dont have any clue on whats going on. I see alot of things clearer looking back now i know what happend. In cases with FFI you have always witness propably a couple of family members and know what will happen, so you a prepared for the symptoms and there for you can prepare a sleep study or other tests.
For me looking at lack of sleep in this condition is like if one of my friends was driving his motorbike and crashes at high speed. One of the nail on a toe fells off. He break every single bone in his body, he has to sit in a wheelchair and needs assistant for the rest of his life and cant never go back to work. And now everybody talks about the nail that fell of his toe because that’s the only visual sign he has. We can talk about the nail, but talking about the nail doesn’t really add up to that friends injuries. And that’s how i think about being sleepless with my mom. talking sleepless about this condition just dont add up to the brutality of the disease.
But lets say that if two of my other friends also crashes at their bikes and the outcome is the exact same, i would now recognize how a bike crash looks like and propably have mention the nail that fell off at some point and i think thats why sleep was listet as a symptom in FFI and sleep is actually something you can messure in this disease because every other test comes back normal.
The name comes from the Italian family A man knew his family had this curse and wanted to solve this, so they made all experiments and monitorings they could. When every test comes back normal but the sleep test is the only thing to get any results from, then obv, this is what the doctors where focus on. The doctors that gave the name are talking about insomnia and as if he never could sleep again and in the same context he desribes how he acts out hes dreams. In my mind that absurd to say. I am not an expert on sleep at all, but what are you if you are snoring and dreaming and your not sleeping? In Insomnia insight #308 Daniel describe it with his words as getting healthy and unhealthy sleep and I think that’s a better way to say it.
Maybe the scientist are right about it, but the way they present it and the name of the disease is just off the line and doesn’t describe the conditions. Calling it Insomnia and talking about someone who never sleeps again and present the disease like this doesnt represent the conditions and are just adding more anxious to those persons who really suffers from insomnia.
I have not yet heart a family member who has witness either SFI or FFI talk about their loved ones not could sleep. And i think it depends on who you asking. family members and other eye witnesses or if you ask a scientist who looks at the EEG and only see the patient for 30 min once a month. When doctors and experts talk about it as an insomnia they talk about it as if you can sleep in the light stages of sleep and have dreams, but you will not reach Delta sleep, wich is the deepest sleep. And if you define sleep as you have to achieve all stages of sleep and repeat that pattern before you can call it sleep, then yes. You might not sleep again in these conditions, but you will dream?
This disease has not been fully revealed and still remains as a mystery. So many answers still needs to be answered. The disease has never been taken apart and put back together again. Another problem we also have is that the function of the thalamus is not even fully understood.
Sure prion diseases can look like ALZ, dementia and Parkinsons. Those are all neurodegenrative brain diseases caused by a misfolded protein. The differens is that they have a much higher life expectance and this misfold protein is not coursed by prions mutation and there for the misfolded protein will not spread to other proteins. In prion diseases the misfolded protein i caused by prions and will spread to other protein and make them misfold. And thats why they can look so simular and specially in the beginnings of the disease
@@kasperandersen6772 i appreciate you replying. You may be right. It’s unhealthy sleep. But I also tried to research on international cases. But they are so limited on information. They all have insomnia in FFI cases. But insomnia is a very vague term. It can mean trouble sleeping. Disrupted sleep. Short sleep. No sleep. Point is the cases are poorly described. Especially with Chinese FFI patients. But yes, FFI and SFI are more dementia disease than sleep disease. 100% do report dementia and ataxia as major symptoms. I think the CJD Thamalic Dementia is more appropriate
@@kasperandersen6772 Also, when you mentioned the number of misdiagnosis. I was wondering if that’s a high medical debt. Here in the US, we are in debt because the health insurance didn’t cover my brothers treatment after allergic attack, the insurance doesn’t cover out of state
@@jeSuisbar I completly agree with you. Fatal insomnia is really just a sub-type of the Thalamic CJD. Maybe your right about the word "Insomnia", can cover many aspects, i have just noticed how many people who suffers from insomnia and also have anxiety, so they think SFI is a disease where you die from not being able to sleep, and thats just what i wanted to put out their, that its not how someone with a fatal insomnia dies, it comes with so many other huge symptoms. Thats why i was glad to be able to do it on this channel,together with @TheSleepCoachSchool, where Daniel and Michael are readdy with the help two those who suffers from what we would normal descibes insomnia. ( identify them self as having trouble sleeping ).
I have read about a scientist who had a theory about sleep has something to do with prions and suspected that the codon 178 is the "sleepcontrol", but failed to prove this. Definetly their is something about sleep, but the very rapid illness shows way more major symptoms. Cant really relate this condition to anything else, but dementia and parkinsons are some of the major symptoms. its a really big brain disfunction, so many things happen and the person that has FFI or SFI will be clumsy and not being able to think wich is really hard to witness. maybe being possesed by a demon would descibe the conditons.
@The Sleep Coach - I tried to email you at the email address on some of your old videos, but got a notification that those mailboxes are no longer active. Do we now need to post all questions in the comments?
Hi Kimberly, questions@thesleepcoachschool.com should work. But you can also reply to our channel anytime!
@@sleeponcue286 thank you!
i have been having problems for the past 4 months, not all with insomnia, with many unexplained symptoms that i have just been told are anxiety or depression, but these symptoms and what is happening with me have made me worry - i've had many tests and everything is normal but it feels like it's getting worse, basically what happened is that 4 months ago, one night i was in my bed falling asleep and i suddenly jolted awake and was having what seemed like a panic attack, and from then on i continued to feel really bad, feeling very dizzy, disoriented, having trouble concentrating on anything, etc. and my vision is getting blurry and my memory is getting really bad too - i just feel absolutely horrible and its not getting any better - throughout this whole thing, i actually haven't noticed insomnia/trouble sleeping until recently - that's also why i am worried, because a lot of the other people i see who are worried about having sporadic fatal insomnia seem to be worried about it because they have insomnia, but insomnia has not been one of my main problems, my main problems have just been feeling extremely unwell with memory problems and stuff in addition to insomnia, but the insomnia isn't as big of a problem as the other things, i try to think that this has been going on for 4 months now, and from what it seems like, i would be in a much worse condition right now 4 months into it and be unable to write this if i actually had something like this, but i am just not sure what i can do about this anymore - considering the rarity and everything of this condition, i know that it is extremely unlikely that it is what is going on with me, but i am really not doing well, feels like i'm getting worse, and i'm not sure what i should do - extremely difficult and almost impossible for me to do anything i normally do or to live my life normally
Hi Voiagamer, welcome to the channel. Sorry to hear what’s been happening but glad you’re here. I think you’ll find that many who’ve experienced what you are experiencing have been very concerned!
Although most of what we talk about here is insomnia, that’s not always something that happens when you’re hyperaroused.
I think a great place for you to start are first to check out Insomnia insight 323 and then 338.
Hang in there!!
Hi, how are you now? I have same symptoms and situation and it started 4 months ago for me too.
I'm really confused and worried.
Hi Kasper, I'm very sorry for your loss. I am wondering - did your mother shake and show outward signs of Parkinson's during the disease course?
Hi Jessica! I just wrote a reply to GamerBlazeit and I think it may be helpful here too... I'll just copy paste. Thanks for commenting!
Hi there and thanks for engaging. I don't know but, I do know that trying to figure out if you have the same kind of dizziness, wondering if you have fatal insomnia, that is very anxiety producing! It's kinda like when there's a rumor going on, and a national spokesperson goes on TV to try to put the rumor to rest. Well then everyone's like "Oh, the fact that she had to try to deny it, that proves there's something there!". The thing is, as long as you look for a problem, you'll find things that seem like clues... this said, of course, always check with your doctor when you're worried! But I've seen so many fall into the rabbit hole of trying to figure out if they have a problem, when the real problem is trying to figure out!
Hello Mr. Daniel, I watched your episode with Casper talking about his mother's illness, intermittent insomnia. I was relieved a bit, but my doubts increased again when I watched a UA-cam documentary talking about fatal familial insomnia and intermittent insomnia, and he was saying that it causes insomnia and other neurological symptoms, and they have cases of insomnia that did not sleep. Do they really have intermittent insomnia, or do they have insomnia or excessive sleep? I was baffled
Hi Raneen,
I’m glad you saw it and that you learned some things that at least for a while give you some relief. And it’s also very normal that when our brain has been scared, it’s fine new things to be scared about for a while.
I’m not familiar with intermittent Insomnia, to me that just means that we have struggles here and there. To me, it means that during the times when we’re not trying to force sleep to happen, we sleep while but we’re trying to control sleep. We have some struggles intermittently.
Let me know if you would like me to review this documentary, that can be helpful.
Just saw the video and am very sorry for what happened to Kasper's mum, I was just wandering if it could be possible to have any clarification on the type of dizziness Kasper's mum felt in the sense of was it more like light headedness or nausea?
Hi there and thanks for engaging. I don't know but, I do know that trying to figure out if you have the same kind of dizziness, wondering if you have fatal insomnia, that is very anxiety producing! It's kinda like when there's a rumor going on, and a national spokesperson goes on TV to try to put the rumor to rest. Well then everyone's like "Oh, the fact that she had to try to deny it, that proves there's something there!". The thing is, as long as you look for a problem, you'll find things that seem like clues... this said, of course, always check with your doctor when you're worried! But I've seen so many fall into the rabbit hole of trying to figure out if they have a problem, when the real problem is trying to figure out!
@@thesleepcoachschool8192 Thank you for the quick reply and the advice you gave.
Anytime!!
very cool and very sad
Do they know what triggered this in your mom? My mom has hydrocephalus and has had very similar symptoms. I am sorry for what your mom and family went through
I just got off Propranolol, along with me studying diseases a lot in my spare time mixed with the side effects I was having, I was so freaking scared.
Glad you’re feeling better!!
Hi, can I ask you for advice if I don't disturb? I have been insomnia for weeks, if before I could not fall asleep now for better or worse with 2mg of melatonin I can fall asleep, the problem is that at 2 am or 3 am I wake up, (I go to bed at 10.30 and I think that I I fall asleep an hour later) after waking up a few times 85% of the time I fall asleep after 2h, other times I don't go back to sleep, in total I don't sleep much so, I sleep only 4h at most .. I was afraid of sporadic fatal insomnia .. but I I am convinced that this is not the cause .. I have red eyes and dark circles .. I am tired of this situation .. there is no remedy to keep sleep all night without waking up? because now my problem for about a week is not being able to stay asleep ... thank you very much
Hi Said!
Good question!
I think the timeless way will help you.
Wanting to know what time it is is very natural.
Remember that insomnia comes from a place of problem-solving.
The human brain is basically a problem-solving machine. And that is for safety reasons. Another word would be a survival machine. You can say that the brain is a survival machine or a problem-solving machine, it’s really the same thing!
Now whenever we have a problem, our brains naturally go into problem-solving mode. And a natural first step is trying to get some sort of control of the problem.
When it comes to insomnia, that translates into knowing what time it is. Because it seems like when you know what time you wake up, how much you slept, how much time you have left to sleep, how much more you sleep now compared to a week ago, you have a little bit of control.
But in reality, it’s the desire for control that causes trouble sleeping!
Because unlike a tangible physical problem that you can solve easily with problem-solving, insomnia is a perceived threat, it’s not a tangible problem, and the more you try to solve it, the more trouble you have!
So this was just a long way of saying, not knowing what time it is is a very powerful step towards letting go of control and letting go of problem-solving!
Not knowing what time it is, not tracking how much you’ve slept, not keeping track of how long you’ve had trouble sleeping, not predicting when in the future you will sleep better, all of those or would I call the timeless way.
It is a super helpful way. It’s not easy because it goes against what your brain habitually wants to do, but again, if you take this path, it will greatly help!
I wish for closed captioning. Kasper's English is hard to understand at times, and I do not want to miss any words. Sadly, I missed a lot. This is important. What would it take to include cc? Please.
So sorry for the difficulties and, at this point I don’t have resources to add captions before uploading videos - but google has automatic captions that often are very good. Hope this can help so you can catch what he shared here
I have same symptoms… Some nights i don’t sleep all of the night or falling asleep at 6 or 7 am and sleeping maybe 2 hours. Week ago my parents had to wake me up because i sleeped to almost 14 pm… I don’t wanna die… im only 17 years old…. It started after my COVID infection. I can sleep at day but im still tired. I had same thing month ago but this time this is much worse
Hi Kruse,
No medical advice here, but you know generally speaking, this isn’t something that gets better. So for someone who had trouble a month ago, then it got better, to me that would mean it’s not sfi. Also, when you read about sfi, there’s no fear of being awake, it’s not insomnia at all actually… hang in there and hope the videos here help!
Yea his mom unfortunately got MM2‐thalamic CJD, which is basically SFI renamed. God bless her soul and my condolences to kasper and his family.
Thanks so much for the warmth and caring. And also for giving us some hope that this will officially be renamed, this will reduce lots of worries out there.
Hello, just want to ask a question :
For those person who are diagnosed with SFI are they born with this prion like those who are diagnosed with FFI
Hi,
I’m not an expert, but I think that when it comes to the familia form, we are born with a mutation. When it comes to the sporadic form, it happens later in life.
So are ffi and sfi the same ? Because if its not about being able to sleep in your moms case, it is the case for people with FFI, as i see on a documantary about ffi which clearly describes total insomnia stage which lasts 3/6 months. Or is this different in people with different symptoms ?
Greetz from Holland ;)
Hi! They have similarities but they’re not the same in my understanding.
But something similar with them is the confusion about the word insomnia!
Insomnia means struggle, someone feels they can’t sleep, they can’t fall asleep, cant stay asleep, nothing works, they’re scared and exhausted!
With Sfi and ffi, there’s no struggle- it’s simply that the brain is so damaged that the distinction between sleep and wakefulness becomes blurry. I think of it like a 3 week old infant. It’s hard to tell even with eeg if they’re asleep or not!
@@thesleepcoachschool8192 hi thanks for reply , i understand a bit more now . There are 2 vids on youtube recording total insomnia , one of them being a docu from discovery . They described that he never slept and was in a constant state of hallucination . Also have you seen the case of ricard saigian ? He died of total insomnia after taking an antibiotic called cyproflux or something , are there any simalarities you think ?
Great it made sense! I’ve definitely seen Saigan videos, whatever happened there to my understanding cannot have been fatal insomnia given the timeline and how his brain worked very well. He was able to talk and make sense for many months.
@@thesleepcoachschool8192 i see man , i felt very sorry for that poor guy .
Thank you wo much for this. I've had hypnic jerks every night worst and better on some nights for 2 months now and I've been down a dark rabbit hole. This video is incredible and it breaks my heart to see how poorly documented this disease truly is.
I was wondering if you had any videos on hypnic jerks and could it be anxiety ? I have diagnosed Chronic anxiety and I take zoloft 50 mg and seroquel 25mg before bed.
So glad you found your way here. And yes, we have a playlist, check the description of any new video for it. Hope it will help!
@@thesleepcoachschool8192 I gotta ask this and it's ridiculous I know but... Am I dying? My brain can't just leave me alone
You know, it’s actually a very common question.. and no medical advice here but I’ll say that many many have asked this question who are sleeping fine now…
@@thesleepcoachschool8192 I appreciate the time you take to respond to this. Are hypnic jerks like this common? And do you think living through a very strerssful period in my life could've triggered them? I just bought a house and it has been the most stressful 6 months of my life on top of having a new job also.
Anytime, thanks for being here. And you know, stress often makes us have jerks and twitches, this is a common experience 🙂
Thanks for the nice video. Sorry for the mom of that guy. I am also one of the people who always thing they have FFI/SFI. Actually I think I have quite good sleep, because despite of all my anxiety on the topic, I am still able to sleep most of the days. The anxiety rapidly rises if there is a night that I am not able to sleep. My question is can we tell that FFI have similar symptoms to the described symptoms of SFI from the video? Are the insomnia like symptoms always accompanied by other symptom like dizziness?
Anytime, and thanks for the thoughts. I’d say there aren’t any insomnia symptoms the way we think of insomnia here with FFI. There’s no fear of not sleeping or worry about what will happen if we don’t sleep or trying to figure out why we aren’t sleeping. Also, FFI is dominant so it’s very clear in which families it runs. Hang in there and maybe check our episode on health anxiety. Rooting for you!
@@thesleepcoachschool8192 Hi, thanks for the answer. I will check the episode about anxiety. Yes I know that FFI is very clustered in few specific families, but there is still the little and ugly chance for the so called de-novo mutation in new people, which families do not have it. Here is the interesting point for me - Why there is no fear in people with FFI/SFI of not sleeping or worrying about it? Is it because their brain is damaged to the point that they do not have that anxiety hormone or whatever it is or is it because they do not realize that they are not sleeping? As you mentioned in another your video - They do not loose sleeping behavior, they loose healthy sleep. So maybe they think that they are sleeping as they fall asleep and this is why they are not worrying? But actually the deep sleeping processes are corrupted. Am I understanding everything right here? Thanks again :)
@jivkostoianov3607 anytime! Yes I think there’s already a lot of changes in the brain at the point when sleep changes, so it becomes like a 2 month old baby. Do they know they’re asleep? Can we tell they’re asleep? It’s all unclear
Not sure if you check comments on older videos but had heat flash on the keft side of my head and fast forward today its been very hard to sleep
Hi, I do and of course no medical advice here, but I’d you’re worried about SFI then we have a playlist in the description of any new video that can help
Hi Daniel I hope it's okay to ask. I've done tons of research and think between you and Casper I have some hope of finding something that appears undiscovered online that'll give me hope. I have problems sleeping due to temperature intolerances "feeling too cold/hot) and wake up like every 50 minutes if I can sleep. Right now I feel tired but can't sleep because the weird temperature feeling and head pressure is distracting maybe because my thyroid or thalamus is damaged. I wonder if those who have sporadic insomnia can have at least micro sleep or eventually the brain shuts off by itself. I wondering if those without prion disease have microsleep and those with do not. I am wondering as I'm terrified of fatal insomnia if one can be forced by their own brain to sleep if they haven't slept for 3 days (I go days without any sleep because my brain feels tense and head body feels either too hot or cold) like perhaps microsleep would eventually occur. Another mystery I wish I knew because I hate to suffer some much is how non fatal insomnia can allow people to go so long without sleep and they're still a live. I have always thought that around 10 days of no sleep a person would die but now I'm thinking that isn't true. I would rather be sleep deprived 10 days than for years. A lot of articles online says 7 days no sleep would lead to death but I'm seeing that some people go years without sleep
I heard that a man named Paul Kern probably survived long because of microsleep but I'm guessing not everyone has micro sleep. I'm thinking that sporadic insomnia and fatal insomnia prevents microsleep and also that the brain cut forcefully shut down parts automatically after sleep deprivation. I feel that I'd be lucky if I get microsleep. I slept last night with my heater on and window open to try to find the right team to fall asleep I apologize for these comments being so long just am really worried
Hi Keith,
So glad you’re here and hope you’ll find much of value. I’m planning to talk about feeling hot/cold soon as this is very common. I think a common misunderstanding is that lack of sleep is what is dangerous about neurodegenerative disorders… when we know it’s not that can remove lots of pressure and worries
@@keitha.lefkowitz4928 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.
Are you okay now bro?
I feel I have this disease. It’s like being awake all the time. Never having a moment of rest. Those deep sleeps sound like she’s going into a coma.
Hi Carly, sorry to hear you have this worry... but glad you're here. I think if you look in the description you'll find a playlist called Success stories, there you will hear a lot of people who have really struggled who now are dong well... hope this can help.
Кели, привет, я из России, расскажи пожалуйста свои симптомы
@@user-jd1cg9tv5c похоже у меня схожие симптомы, сон поверхностный, шаткость при ходьбе
Hey Carly you feeling better???? I've also been going a long time without sleep it's so scary/:
@@mrfernandog123 I’m much better thank you x
Hey Daniel, so like his mother I also would sleep a lot and for a long period of time much more than I do now and that went on for years like after I graduated in 2017, is that something I need to be worried about???? I wish I could talk to him cause he’s actually witnessed this SFI or CJD as I like to call it now because that’s pretty much what it is and also with the sleeping a lot more before these problems started I didn’t experience any dizziness or anything I would get sleepy as well and now I don’t get that sleepiness, are people who have SFI aka CJD able to sleep every night or appear to be sleeping??? And is it normal to not have that sleepy or drowsy feeling but still be able to fall asleep???
Hi Nate, of course always check with your doctor when concerned about health. This said, it’s a common experience in our community not feel sleepy even after not sleeping much. If you search for insomnia insight Bermuda Triangle you’ll find teaching on this. Hang in there
@@thesleepcoachschool8192 I brought up SFI to my psychiatrist and he said I didn’t have it, to be honest I kinda feel like this is all normal for me now but I’m not sure, Is it possible for someone to sleep for a long time then suddenly only require less sleep?? I just wanna know if this is normal or if you’ve heard similar situations
Hi Nate, glad you did and you know, definitely nothing unusual about what you shared here. Hyperarousal for whatever reason can keep us awake and it can seem like it’s out of the blue
Everytime I try to sleep, some types of jolts wake me up, and I'm not able to sleep since past 4 months or slept very little like just 3 hours a day and I'm really worried.
Hi Anurag,
These can be really bothersome, and it can help to know that this is very common and as tricky as it is to see this… they are maintained by trying to stop them..
Here’s a playlist that I think can help.
Hypnic jerks, hypnic awareness and other common issues.
ua-cam.com/play/PL6RQ1GS7B1ci1B__oGwLvLaJ9Da1lmIKs.html
Hang in there an be in touch!
Też miałem takie wstrząsy, zawsze gdy już usypiałem one budziły mnie podrzucając moje ciało do góry. Ale to było kiedyś, zawsze mało spałem a ostatnio podczas przebytej (chyba grypy) nie mogę już w ogóle zasnąć. To jest mój 5 dzień.
How do you lnow she was in deep sleep for those periods of time? Myabe it was fale relm sleep ans she got all those other symptoms because she couldn't sleep prior to you finding out she had a problem
Hi Tee Lee, I think Kasper just shared what he observed. My understanding is that if you look at EEG patterns, it actually shows a desynchronized activity that is hard to determine what it is. Sort of like looking at the EEG of a 4 week old, it's hard to tell what is sleep and what is not sleep...
My father in law has the same symptoms, same degeneration over time, but his condition has been going on for much longer. Initially he was under the carenou a sleep disorder clinic because he wasn’t sleeping, now he’s sleeping/laying down waaay too much so the sleep clinic referred him to a psychiatrist, he’s been under several meds since, would psychiatric meds help slow the degeneration somehow? Every single thing Kasper was saying, it was like he was talking about my father in law…. But like I said, he’s been suffering for a year so timing is the only odd thing here not matching…
Hi SW,
So sorry to hear about your father in law.. and yes like you point out, sfi is considered rapidly progressing… and to my understanding, there’s nothing that can slow it down, but, more importantly, I’m glad he’s seeing doctors who can look into this.
Hoping for the best for your father in law
Hi S W I'm very sorry to hear about your father in law's tragedy. Did it turn out to be fatal insomnia?
In reply to your questions I would report that I have read in the scientific literature:
1) Yes, there can be stark variations in the length of the disease. In general sporadic fatal insomnia can last longer than its familial, genetic counterpart (which is itself divided into two strains: long and short course). The longest survival recorded after first symptoms is around 8 years, but the average is 36 months.
2) It seems to be really subjective whether psychiatric medications can help (=delay) the illness or not. The first diagnosed sufferer, Michael Corke, reported that drugs were of no help or even made his condition worse. To the opposite, DF, the case covered by Schenkein and Montagna in their article, having a doctorate in naturopathy was able to experiment a number of treatments and probably to extend his life expectancy by about one year.
www.ncbi.nlm.nih.gov/pmc/articles/PMC1781276/
neuroscientificallychallenged.com/posts/know-your-brain-fatal-insomnia
Hi! I am Harly Mlegarejo from Philippines. My sleep-wake distrurbances started February 21/ I woke up with a song playing in my head in early dawn. The next day I almost wake up four times during in middle of night and dawn. Sleep early yet wake up after three to four hours like i didn't sleep yet I know I slept because i had dreams. Sometimes I slept at 11 woke up at 2am but fall asleep at 6 am then wake up at 9 am. My sleeping pattern went irregular that I overthink I might have this disease. Any assurances that i do not have this?
Prior to this, past December I am very sleepy type of person and health anxiety comes on that way. I intake melatonin thinking i only have lost sleep only not to take effect and made me groggy the other day on Christmas Eve. Then up until January second week I always spend lot of times in bed sleeping. February third week when my sleep disturbances occur. I do not know if everything happening to me is due to anxiety on past months doing self diagnosis from various types of diseases in just single body symptoms.
Now came this sleep problem. I hope you could give me assurance to this. Im anxious right now.
Hi Harly,
Sorry to hear but - glad you’re here! Definitely sounds like a very familiar story, and I think tuning in here can help a lot. Maybe start with the This is Natto and Success stories playlists. Let us know how things go. Mabuhay!
Im some who has sever insomnia, i can spend all not just lying in bed with my eyes closed all night and not get a minute of sleep even with medication .i can go days without sleep even when im evhausted and i try to nod off i jerk back awake. I have sensed my balance and gait when i walk is abnormal.. One think i was hoping you clarified was that he said he mother would sleep for many hours which seems like a paradox to insomnia. I ask these questions with all due respect. Thank you
Hi Eli, yes it’s paradoxical and why I think this condition should be called something else, it has nothing to do with insomnia
So at the beginning she suffered with this strange dizziness along with unable to sleep because of it and she couldn’t concentrate because of this dizziness? Did it come at the same time that she got this strange dizziness?
Hi Sasuke,
I’m not sure about the timing, but I remember it sounded like the dizziness really bothered her and surely made it hard to focus. But also, she was never worried about her sleep, she never had what we call insomnia, and I think that part is so helpful to take note of
May I ask if Kasper's mother noticed that she was sleeping? So I mean, did she say that she can't sleep? Or was it so that she could fall asleep but the sleep itself was disturbed?
Hi Jelena, Kasper may chime in here but what I remember is that she took note of sleeping little and it was annoying to her. It was hard because she had to get up early for work.
But what I think is so important is that there was not sleep anxiety! There was no struggle with sleep, no attempts at researching, no efforts at trying to sleep more, in other words - no insomnia.
I recall that she simply slept little not that sleep was disturbed.
Best!!
@@thesleepcoachschool8192 thank you
Hi coach daniel... i am from the philippines and I am suffering with my sleep problems for a month now.. every time I attempt to sleep, I starting to have palpitations and burning sensation at my back and it really burns.. all my clinical tests are normal. I only have average sleep of 3 hrs per day or sometimes none at all since I suddenly woke up and I cannot go back to sleep.. is this fatal insomnia? I have no anxiety attacks or depression...
Hi Carlito!
Sorry to hear that you have had trouble. There is no medical advice here but I’m happy that all the tests have been negative. It can be really confusing when you don’t feel anxious at all and still you have palpitations and burning sensations and you don’t sleep.
What causes insomnia is what we call hyper arousal. This is a hyper alert state where the brain thinks there’s something it needs to look out for. This can come not only from anxiety but also curiosity and the puzzlement. Just trying to understand why you sleep so little is often enough to make you sleep little!
What you shared here is very very common. Nothing strange unusual at all. I can share that someone with a fatal insomnia doesn’t have the capacity to wonder why they aren’t sleeping or write comments on UA-cam!
I think just spending some time here and learning can be really helpful. Hope this helps and stay in touch!
Thank you so much coach daniel..
Hi! I'm sean from Philippines! 🇵🇭 Is there really no insomnia on the symptoms of person with sfi? It's been 1 year since I found out about sfi and up to this day it still scares me. I've been taking antidepressant to calm me and antipsychotic to help me sleep for about 1 year as well. But lately, I have trouble falling asleep and the first thing that comes to my mind is SFI. I just want to have assurance that insomnia is not a symptom of SFI and that others made a mistake on making it Sporadic Fatal Insomnia. Thank you in advance! Mabuhay! ❤️
Please reply sir it feels like im going insane every night thinking about it. :(((
Mabuhay!
Sorry to hear about the struggle but glad you’re here. Yes imho it’s a total misnomer to call sfi “insomnia”, it’s not insomnia at all.
Insomnia is when the fear that something is wrong with us keeps us from sleeping. And that’s not what happens with sfi.
Furthermore, medications for sleep “work” by delegating the work of sleeping. When we don’t try, sleep happens by itself. Medications don’t have any impact if we don’t believe in them, and they don’t change anything when it comes to the disease process of sfi. So for someone who found medications help, that’s very reassuring.
Finally, this is a rapidly progressing conditioned, if someone struggled for a year, my understanding is that this cannot be sfi.
Hope this helps kapatid!
@@thesleepcoachschool8192 Thank you so much!
You got it!!
Hello Coach it's me again. I'd like to ask if it's also normal to have middle insomnia (waking up in the middle of the night and cannot go back to sleep). Also, that's not SFI right? Thank you!
What is difference between Sporadic Fatal Insomnia and Family Fatal Insomnia ? Because FFI is genetic and people can be tested.
Hi Violeta!
My understanding is that the familial one also cannot really be tested for. However, it is inherited in a dominant way. This means that one of your parents must have had it. So it’s pretty obvious if you are in a family where this disease occurs or not.
When she slept ~20 hours a day, did she act out movements as if she was doing something awake (such as cooking, working, etc.)
That happened yes. Not constantly, but frequently. I saw what i believe where here riding her bicycle
@@kasperandersen6772 Hello Kasper, sorry for your loss. May I ask if your mother noticed that she was sleeping? So I mean, did she say that she can't sleep? Or was it so that she could fall asleep but the sleep itself was disturbed?
Hi I'm so sorry kasper for your lost it must have been so hard for you I'd like to tell you both about me in 2019 I had very high blood pressure are took tablets for it and I had not been able to sleep for 20 nights and days ever sence I have now completely lost my ability to sleep the doctors think its enxiety I dont get sleepy and cant nap at the moment I'm sleeping 1 hour per night and sometimes nothing I'm very exauted it feels like I had a brick on my head its very hard to concentrate now as I dont sleep now night and day I been taking melotonin for a while it was helping a bit but now the tablets stoped working I'm thinking about going to see a newrologist private because of Corona virus not been able to see anyone yet at the moment I just lay in my bed with the eyes closed but nothing happens I sure Ihave fatal insonia and im scared my name is Margarida
Hi Margarida, sorry to hear what’s happening but I’m glad you’re here. You know, you are the reason I was so so grateful for Kasper sharing what happened to his mom. There are so many who like you are worried about something that really has nothing to do with insomnia.
You are worried, you are trying to figure out why you’re not sleeping, you keep count of how many nights you’ve not slept, you suspect blood pressure medications, you’ve tried melatonin, you’ve found that they stopped working - all of this is super common with anxiety driven insomnia!
I know things seem really bizarre, but your story is very common, which is good! Because when you start learning and understanding, which you can do by exploring this channel - you’ll start sleeping really well! Hang in there and welcome to the channel!
Hi i have been suffering from insomnia for 20 years. Last seventeen years i have been on anti psychotic medicine just to sleep. I want to connect with you
Hi Ruchita, so glad you found your way here and you know, just head to our website and you can find ways to work with myself or another of our coaches.
I posted this on another video but I’m posting it here. I’m pretty sure I was scared and commented this video.
I’ve done plenty of research on this in my psychology degree. More recent studies, and the studies I ran with my colleagues, have shown that FI shows when someone, or their body, “believes”, for lack of a better term, they are alseep when they are actually awake. The part of the brain that controls sleep is physically malfunctioning and creates a sleep like cocoon 24/7. it’s much more severe than insomnia and it’s not even insomnia. I would call it a dementia like disease but I wouldn’t call it insomnia. Someone who has FI shows debilitating symptoms within a month to 3 months of being diagnosed. I’ve been in the spot where I convinced myself I have this disease, and I’m still trying to get over it it’s been barely 2 months and I have severe insomnia. fear is a very powerful thing. EVERY SINGLE PERSON with SFI has presented symptoms within a month of diagnosis and 100% of them are 40-60 years of age and 100% of them are clueless to the symptoms because THERE BRAIN IS SHUTTING DOWN. If you have digestive issues, which I know is a big thing for many with anxiety, it’s just anxiety. bladder issues are more common. I.E if you aren’t peeing yourself, you’re likely okay. so I hope this helped.
Edit: The part about people reporting trouble sleeping. there should be an amendment to the conclusions online. 0% of patients report trouble sleeping with SFI. People with SFI notice other symptoms such as memory loss and bladder function way before. Most patients with FI have anxiety because they simply don’t know what’s going on. situational confusion, they forget where they are, they don’t remember their name, or like I said they experience bladder failure. which is the most common symptom of SFI. SFI is also 10x More rare than FFI. we are talking about 1 in 400 million. that’s more than the US population making you, if you believe you have it the only person in the US to have it. that’s not likely at all. noticing that you don’t sleep and being really concerned about it is insomnia
Depression works in a very similar way. A lot of people with depression have memory loss and concentration issues. There is a high number of patients with depression who get checked for dementia because they truly believe that they have dementia when in reality it’s just depression.
IMPORTANT: if you’re still able to sleep even just after a month of a sleep disturbance and you’re noticing it, you 1000000% do not have any type of FI
Looking at a picture of the brain. Someone with FI has extreme lack of protein in the wrong areas of the brain. Much like images of someone with Parkinsons or someone who’s had a horrible stroke and can only speak one word. That’s why we say “if you worry about it, you don’t have it” because people with the condition don’t know they have it, it’s phenomenally impossible for them to know so.
We didn’t even study this illness a lot because it has nothing to do with behavioral disturbances, psychoses or obsessions. it looks more like a bad stroke, which is physically neurologic dealing with protein and brain structure rather than a psychiatric illness, which is not physical but rather psychological dealing with chemicals and behavioral issues. It should be called a “catatonic stroke” because that’s literally what it is.
It’s not a mental disorder either so you can’t just give yourself the disease. You can’t give yourself a stroke or dementia it’s physically impossible. It’s more like a syndrome or a genetic disorder. it’s impossible to give yourself something that is purely genetic. In this case, both FFI and SFI are genetically related.
It’s quite sad that sleep coaches even talk to people affected by the illness because it has nothing to do with sleep trouble, it’s just a prominent symptom of the disease.
I thought there was a 13, 16, and 33 year old victim??
@@TheMan40262 possibly of FFI but SFI, no.
@dodgdurango6128 thank you, I am a senior in high school during finals and you helped me overcome this anxiety causing me to lack in sleep and thus preparing me better. All because of your youtube comment.
@@TheMan40262 I’m doing the research to help myself as well. i find myself coming in and out of deep rem sleep, which is a staple of this disease. but I can still drive and I can still eat and do my own things. im on lithium for suspected bipolar disorder. All of its victims wake up in the morning feeling like they got a good nights rest. it’s not classified as a sleep disorder.
@@TheMan40262 and a good reminder that the body will always get the rest it needs regardless of what happens to your mind.
This is why a good doctor asks more focused questions in the history. You should never accept the patients’ idea of what’s wrong with them. This misdiagnosis happened because the pt told her dr she was dizzy and so he accepted that and went down the wrong road. If only he had asked questions about depression instead of GUESSING, the answer would have been easy. One of the chief questions to ask is, “How are your sleep habits? Once that is answered, you then get an EEG guided sleep study.
Hi kk doc! History surely is more important than anything else... this said, it’s not always easy picking up on what’s happening, deploying self-kindness and empathy helps lead us towards a good place!
@@thesleepcoachschool8192 But so many doctors do not go down the right road in their algorithms trying to come up with answers. And the main reason for this is that specialists cannot or won’t go beyond their area of expertise. No one was willing to get a detailed history.in this instance. Her physical exam fit a whole lot of diseases including Parkinson’s. But if you don’t ask about sleep history, you can’t even make a diagnosis of depression!
If you are going to diagnose correctly, you then have to PROVE they actually have one of the throw away diagnoses.
This gentleman is correct about diseases that mimic others especially in the neurological arena. And the sad part is regardless of the cause, many times there’s no treatment. So even arriving at an accurate diagnosis is nice, but it does nothing to change the outcome. That’s unfortunately what happened here.
You know, I to think medicine is in a tricky spot because doctors are only educated about these textbook “standard” medical things like diabetes and heart failure. But reality is that depression and anxiety is totally dominant causes of all kinds of symptoms today!
And doctors are totally unprepared.
I do believe medical education has to become radically changed to be helpful today...
@@thesleepcoachschool8192 I agree. I have been an ER dr for a couple of decades, and it’s my job to get to the bottom of things in a matter of a few minutes. Diagnosis is an art that combines excellent listening skills, a good grasp of medicine, loads of common sense, and a drive to not be wrong. You cannot be lazy. For eg, to be thorough, you have to do a pelvic exam on all women with lower abdominal pain, you perform a CT scan on anyone with their “worst headache ever” and if neg. do an LP. ALWAYS think of the most serious diagnosis their symptoms may represent and move back from that. I am appalled these days seeing doctors who don’t even touch their patients. Everybody that goes to the hospital or dr needs an advocate who is willing to ask questions and not be intimidated. Don’t accept an answer you’re not comfortable with. And remember, even the guy who graduated at the bottom of his medical school class is still called “doctor”. Thanks for responding.
Anytime! Thanks for engaging here and for being a thorough physician!
I came here panicking if I have it. Sleep has been iffy for a while now. Last night I could not enter Rem. As soon as I started to dream I would wake up. I fell asleep 3 times last night just to wake up soon after starting to dream.
Hang in there, I hope our content will help much
All of those sfi documentaries including ffi why do they say lack of sleep causes them to die when in fact they slept more also are those documentaries really old and out dated?
I think this is so unfortunate... and you know, I think it may be intentional to make people watch them...
Hi, just curious if my insomnia started because of bad anxiety, could I rule out SFI? It’s been almost two months of insomnia and I’m starting to experience some lack of control with swallowing. Hoping it’s my anxiety but it feels very real. Do you or Kasper know if it’d be very obvious by now(2 months in) if I had SFI?
Hi John,
No medical advice here but to me, if someone is able to write a comment on a youtube channel, if they have the capacity to wonder if they have SFI.. they don’t!
@@thesleepcoachschool8192 that’s a fair point haha. Also the trouble with swallowing didn’t happen until a month after the initial insomnia. With SFI, wouldn’t the neurological symptoms happen right away, not a month after insomnia? thanks for all you do!
@@thesleepcoachschool8192 also sorry one more question! I’m worried because someone commented on your other video that SFI people have excessive tiredness during the day and can barely function- I’ve been having that the whole time. I wake up feel exhausted and want to sleep by Noon. I don’t think I ever reach REM or deep sleep either because I wake up everyday feeling exhausted- is this normal? I just can’t sleep restfully at all
Anytime! And yes, the neurological symptoms are first. And sleep wise, there’s really no insomnia. Insomnia is when someone is worried about their sleep, and that’s totally different from Sfi!
Yes it’s super common to feel exhausted and barely functioning then you’ve had trouble sleeping.. nothing strange or unusual!
Can you provide more information on the testing that was performed by the neurologist when this patient was alive. Did she have an mri and a pet scan? Did she have a spinal tap. What tests did they do?
She had alot of cognitive test and bloodtest. The MRI and PET scan came back normal. no cancer and nothing abnormal to be seen. We did the Spinal tap 14-3-3 test in june and that was what brought CJD up as an possiblility. Really thats how the neurologist was explaining the spine test: She told that it was not looking good. We can see that braincells are being flushed out with the spinal fluid. Pretty much she told os if there was anything we needed to do with her it had to be now.
Thanks for taking the time to respond. Was the pet scan an fdg pet scan? So she was positive for 14-3-3?
FDG is standard provided along with the CT scan in Denmark.
Yes the 14-3-3 test was positive
Did the doctors have any information about why these tests were negative once you found out the actual diagnosis after your mum passed? Im asking because i think its important to know why these tests did not provide the information to diagnose this. Were they not looking for the right things when they examined the mri and pet test results or were there just no abnormalities on the test?
@@purat70sam54 Pet scan will always be negative in prion diseases. I don't have the tecnical explanation but It's prions that mutate and prions are made out of non organic material, so i think its not possible to detect.
MRI can in some cases with prion diseases be seen, but only if it happens in the higher part of the brain and not in the middle like SFI attacks the thalamus. The 14-3-3 test only gives an indication since prions will be released in the spinal fluid, but will not always be positive.
To diagnose someone with any prion disease is really a question of elemination of all other posible diseases. Their is not at the moment any possible way to diagnose when still alive and only a full autopsy of the brain can tell the diagnose. You can make a qualified guess from the course of illness campared with all test result, and a positive 14-3-3 test and that was what happend in my moms case. They made a qualified guess for CJD, so for almost a year i thought she had CJD.
Is sporatic fatal insomnia as rare as fatal familial insomnia? Or are they the same thing?
They are different and both extremely rare Katerina
Thanks so much. Best regards to the family. 18 months ago I took a blood pressure med it sent me crazy. For months I stayed awake. I still barely sleep but other than that I have no other symptoms. I’m still terrified I have sfi. Like I’m consumed day and night with terror. After 18 months wouldn’t I have more symptoms than insomnia btw I just lay there and I’m not worried at night I just panic all day. Can you please let me know that after 18 months I would know if I had it. Best wishes
Hi Lizette, no medical advice here but my understanding is that sfi is rapidly progressing and it’s obvious pretty early if we have it. Hang in there!
Thanks so much
I just want to thank both you and Kasper for turning my life around. I’m now sleeping again and no longer panicking every day ❤️
So so glad to hear - this is exactly why Kasper wanted to come on, thanks for letting us know 😊
I’m sorry to bother you I was feeling much better until I read about Ricard Me taking propranolol plunged me into insomnia for weeks. How long did he not sleep for. I’m totally scared that this can happen.
I wake up 2 - 4 times a night and it feels like my brain is getting foggier and foggier and i have super vivid dreams
It feels like its getting harder to concentrate every day
Dylan, sorry to hear but glad you found the channel. Check out episode 312 and 322... they explain vivid dreams and hyperarousal and I think they could be really helpful. Let us know what you think and whenever you have any questions!
@@thesleepcoachschool8192 thank you for responding
@@DylanDrinksWater Anytime!
Do i have ffi i am always having panic attacks because am always scared of having ffi or sfi is that normal?
Am shaking in my hands is that normal nad i just woke up right now do i have sfi or ffi?
I used to have insomnia and thought it was fatal insomnia but I went to the doctor and found out I was low on magnesium after taking magnesium I finally slept like a baby and now I take magnesium everyday I sleep like 9 to 10 hours of sleep
So glad you’re not struggling with sleep anymore 😊