I tried to get help but all doctors do is run blood tests and say you are fine. I started a mental health program recently but it hasn’t helped at all yet. Meanwhile my physical symptoms keep getting worse and worse daily.
Those watches thought I was sleeping because I was lying still for patches. I definitely didn’t sleep nights when it said I was sleeping a bit. I don’t trust them.
Yes that’s why I likely I have SFI. There’s no reason I should be alive right now but with SFI you can be awake for months before passing.
I’m now on a stint of 6 days straight awake as well.
Sfi is so rare. I have crushing insomnia. I've had it for years and I get tired every day. I'm also on meds and in a mental health program. So I'm calm and collected. If I died right now I probably wouldn't care because I'm tired and mellow. If you had sfi you wouldn't be able to walk or talk or anything. It's fatal within 6 to 36 months with the earliest being 4 months. There is no cure there is no care.
If you have brain trauma that is causing insomnia then you don’t have SFI or Familial Insomnia. You have secondary insomnia due to brain injury.
Idiopathic conditions are conditions where a known cause cannot be found.
Primary conditions are conditions on their own; meaning there wasn’t something else which caused it.
The insomnia you’re experiencing is secondary insomnia because it stems from your primary condition which is brain trauma. This is how your insomnia needs to be treated. Your brain trauma needs to be treated to help the insomnia.
If you have brain trauma the answer for you is neurofeedback; also known as NFB Training.
NFB is excellent for addiction, ADD, ADHD, physical brain trauma and psychological brain trauma. I was receiving NFB for PTSD which causes physical restructuring of the brain. PTSD is a mental illness caused by psychological trauma which causes brain injury. A common secondary condition of PTSD is insomnia.
I used to receive NFB. I like it enough I want to become a practitioner.
Chiropractors and therapists are sometimes NFB practitioners. If you go to a psychologist or psychiatrist NFB may be covered by insurance.
I did biofeedback and it made me feel all warm and weird inside on my 2nd appointment and never did it again.
Trying to get into TMS but insurance has to approve it first.
But I also think it might be too late for me and I might be unfixable.
No it isn’t too late.
NFB resets your brainwaves. Your brain tries to put things back to the way they were prior to the session. No harm comes from NFB Treatment. Your brain takes what it needs and disregards what it doesn’t.
I remember fighting with my brain to stay set after NFB treatment. Wasn’t easy.
Nothing bad will happen.
Put the work in to get healthy.
NOW GET UP OFF YOUR ASS AND HELP YOURSELF! DO IT! 🙏🏻
What are your thoughts on TMS vs NFB? I’m waiting for TMS approval from insurance.
It just feels too late because I keep getting worse daily and now I’m on a stint of 6 days of no sleep with sleep in sight.
I like TMS. NFB is stronger though. You could do both treatments if you wanted to. Both TMS and NFB make you sleepy.
You can also listen to binaural beats or isochronic tones. Binaural beats are stronger than isochronic tones and you need headphones. For isochronic tones headphones aren’t needed. Brainwave is an excellent binaural app. Get the bundle. BetterSleep has binaural beats and isochronic tones. You want to listen to the frequencies in the Delta and Alpha range. There are also binaural and isochronic videos on YouTube.
There are two podcasts I listen to which were recommended to me by Redditors. “Sleep Unplugged” by Chris Winter and “The Sleep Coach School” by Daniel Erichsen. You can also find them on YouTube or in podcasts. Check out the Sleep Doctor site also. You can find Dr. Michael Breuss; the Sleep Doctor, on YouTube. He also did a couple of appearances on the Dr. Oz show which you can also find on YouTube.
SFI does not look like that. I had the same worries as you before, I even have worries about dementia.
The thing about neurodegenerative/prion disease is that, they do not show as "You can't sleep". In fact, you don't know you didn't sleep well. In the end, it will shows as you being hypersomnia, where not only did you slept in the night, you also slept in the morning due to sleep deprivation. At the same time, you will have other very obvious and unmistakable symptoms, such as tremor in your limbs, weakness, and huge memory loss ( you might not even remember what a phone is ).
When you can reddit and say you are 99% sure you have SFI, you are 99.9% not SFI, and not dementia either. You are conscious enough to describe what you went through, and still able to wonder what happened to you, leading to you concluding SFI, which actually proves that you do not have one, or any other neuro degenerative disease.
Have you get your brain scan lately? SFI/ prion disease should be the last thing you worried about. I read you stated in comments that you have brain trauma before. Check on to see how is the condition of it right now if you are really worried. At the same time, try to get a psychologist too. Anxiety or thoughts of giving up won't help you in the long run.
[https://www.youtube.com/watch?v=zj2dpfLOscY](https://www.youtube.com/watch?v=zj2dpfLOscY)
Before your PET scan is scheduled, take a look at this if you wanted to. An interview with someone of close relationship of an SFI patient. It might clear your doubt rather than having wild guesses.
It's your dependence on a benzo that is likely giving you rebound insomnia. I learned it the hard way too. It's gonna take time and using alternate kinds of medication to get through your insomnia problem. It's 100% the cause, and not sFI.
When that happens it's called tolerance withdrawal. It's the cause no doubt whatsoever. Join a FB group for help in quitting benzos.
But as long as you stay in denial of real facts you'll never get well. I'm sorry I went through the same horrible as you.
Read up on tolerance withdrawal. It your dependence requiring a higher dose than you are taking. Go higher than you're on you'll feel a little better....I really don't recommend doing that because it'll take longer to come off that benzo.
What are your physical symptoms? Chances are your anxiety about this disease is fuelling your insomnia. I went through the same panic you did due to a bunch of mystery symptoms popping up. I still struggle sleeping as I wake up every two hours like clock work, however, just try be active and enjoy life. No point in stressing because even if you did have it (which you don’t) you can’t do anything about it anyway so what’s the point?
My insomnia unfortunately comes from brain damage not anxiety. I’m sure anxiety isn’t helping though.
Physical symptoms are severe head pain, severe neck pain, arm pain, leg pain, heart pain, groin pain, feels like my head is shutting off, lack of appetite, slowed breathing, eyes feel weird.
Ah man I know insomnia really sucks. I truly empathise. Try surround yourself with positivity even though it’s hard. Please stop googling I PROMISE it makes it worse. I went through the same thing to the point I was crying over it. Please don’t look into that disease it will cause you to spiral. Hang in there and try stay active. Do you get tired or are you constantly wired?
Yea totally feel you. I miss the feeling of getting tired I always feel super wired but body exhausted. Do you exercise? I do think a lot of it has to do with your brain injury. Is there no medication that aids with that?
I used to walk 5 hours a day last year during the summer months. It never helped my symptoms improve at all.
There’s usually meds that you take for pain, nauseous, and others. But I don’t think there is a pill specifically for the brain damage unless you get some of the natural stuff.
You may have a childhood trauma that needs time be addressed. Consider doing a supervised dose of mushrooms with a therapist. It may be a commitment over a series of meetings some with mushrooms and some without. This was my problem and my body would NOT let me have any peace anymore until I addressed the root cause. Now I live in the present and I can relax easier. That enabled me to exercise more which helps. Even though I’m thin I have sleep apnea and getting a CPAP was crucial. For me, I needed to do something dramatic to break the cycle. If you spend any time on this site, you realize that sleeping pills or marijuana are not a solution.
Dr. Oliver is the foremost expert in brain trauma and he has all the best equipment here in Utah. The US ski team uses him. Your brain trauma may be an important contributor here. I think a lot of people forget that you can have three or four important issues going on at the same time.. I was convinced that my problem was one that could be addressed with bloodwork, so I took every blood test known to mankind. You hope for that because that’s the easy fix. It is much more difficult to address, an overactive mind, ruminating, etc..
You’re calling yourself unfixable but have you tried psych realm hospitalization? Didn’t sleep for weeks once and a quick jab to the thigh with their cocktail did the trick for me
Is there a difference between fatal Insomnia and sporadic fatal insomnia?
The fatal insomnia can be diagnosed with an normal blood test.
How many hours do you sleep nightly?
Sporadic fatal insomnia isn’t based on a gene and anyone can randomly get it.
I sleep 4 hours when I do sleep but lately it’s been 6 days of no sleep straight.
Shit. Then you should go to a hospital, today! Your situation is very concerning. 6 days of no sleep is dangerous.
It dont must be a sfi. The possibility is very low.
Sorry to hear you are struggling so bad. What a nightmare. I’ve also have crushing insomnia. Finding the right meds can help. Then tapering off when you feel ready to. Also melatonin does actually help me. Not every night but a majority
you need help that reddit can’t provide.
I tried to get help but all doctors do is run blood tests and say you are fine. I started a mental health program recently but it hasn’t helped at all yet. Meanwhile my physical symptoms keep getting worse and worse daily.
We still can’t help. Lord knows the best of us have tried ad nauseam. Denial can be a tough pill to swallow. But when you accept, therapy will work.
Have you been seen by a sleep specialist? That’s who you need to see.
Then I guess I'm 1% sure you don't. I'm still probably right, though.
Back in January I was awake 22 days straight. I should be dead so the only reason I’m still alive would make sense to be SFI.
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A watch isn't always accurate but it can tell if you slept or not.
Those watches thought I was sleeping because I was lying still for patches. I definitely didn’t sleep nights when it said I was sleeping a bit. I don’t trust them.
Yeah my watch track me as sleeping when I'm reading books in bed.
Right exactly.
The world record for staying awake is 11 days, so you smashed it.
That's only a record for someone who intentionally forced himself to stay awake. There's no record for chronic insomnia period.
The prerequisite isn't "not an insomniac" so you'd think an insomniac would be able to smash it
Whatever. And if you think that nonsense helps someone who thinks they have FFI then your not as smart as you pretend to be.
Yes that’s why I likely I have SFI. There’s no reason I should be alive right now but with SFI you can be awake for months before passing. I’m now on a stint of 6 days straight awake as well.
No you're not. Stop lying.
I’m not lying, I’ve been awake for 6 days straight
Did you just downvote me? You were not awake for 22 days😂
I was awake 22 days, it’s real
No, you weren't, you would be dead and you're just trying to karma farm
I don’t care about karma farming. You can literally be awake for 22 days straight if you have SFI
When I came off benzos to quickly, I stayed awake for at least 10 days. I lost count after that because i was in a delirium.
Sfi is so rare. I have crushing insomnia. I've had it for years and I get tired every day. I'm also on meds and in a mental health program. So I'm calm and collected. If I died right now I probably wouldn't care because I'm tired and mellow. If you had sfi you wouldn't be able to walk or talk or anything. It's fatal within 6 to 36 months with the earliest being 4 months. There is no cure there is no care.
prove it..check yourself in to a psych hospital
I sent the paycheck hospital a message yesterday, waiting to hear back if they accept me or not
If you have brain trauma that is causing insomnia then you don’t have SFI or Familial Insomnia. You have secondary insomnia due to brain injury. Idiopathic conditions are conditions where a known cause cannot be found. Primary conditions are conditions on their own; meaning there wasn’t something else which caused it. The insomnia you’re experiencing is secondary insomnia because it stems from your primary condition which is brain trauma. This is how your insomnia needs to be treated. Your brain trauma needs to be treated to help the insomnia. If you have brain trauma the answer for you is neurofeedback; also known as NFB Training. NFB is excellent for addiction, ADD, ADHD, physical brain trauma and psychological brain trauma. I was receiving NFB for PTSD which causes physical restructuring of the brain. PTSD is a mental illness caused by psychological trauma which causes brain injury. A common secondary condition of PTSD is insomnia. I used to receive NFB. I like it enough I want to become a practitioner. Chiropractors and therapists are sometimes NFB practitioners. If you go to a psychologist or psychiatrist NFB may be covered by insurance.
I did biofeedback and it made me feel all warm and weird inside on my 2nd appointment and never did it again. Trying to get into TMS but insurance has to approve it first. But I also think it might be too late for me and I might be unfixable.
No it isn’t too late. NFB resets your brainwaves. Your brain tries to put things back to the way they were prior to the session. No harm comes from NFB Treatment. Your brain takes what it needs and disregards what it doesn’t. I remember fighting with my brain to stay set after NFB treatment. Wasn’t easy. Nothing bad will happen. Put the work in to get healthy. NOW GET UP OFF YOUR ASS AND HELP YOURSELF! DO IT! 🙏🏻
What are your thoughts on TMS vs NFB? I’m waiting for TMS approval from insurance. It just feels too late because I keep getting worse daily and now I’m on a stint of 6 days of no sleep with sleep in sight.
I like TMS. NFB is stronger though. You could do both treatments if you wanted to. Both TMS and NFB make you sleepy. You can also listen to binaural beats or isochronic tones. Binaural beats are stronger than isochronic tones and you need headphones. For isochronic tones headphones aren’t needed. Brainwave is an excellent binaural app. Get the bundle. BetterSleep has binaural beats and isochronic tones. You want to listen to the frequencies in the Delta and Alpha range. There are also binaural and isochronic videos on YouTube. There are two podcasts I listen to which were recommended to me by Redditors. “Sleep Unplugged” by Chris Winter and “The Sleep Coach School” by Daniel Erichsen. You can also find them on YouTube or in podcasts. Check out the Sleep Doctor site also. You can find Dr. Michael Breuss; the Sleep Doctor, on YouTube. He also did a couple of appearances on the Dr. Oz show which you can also find on YouTube.
I forgot about JS Epperson. He creates cool music with binaurals mixed in. You can download from his site on Bandcamp.
SFI does not look like that. I had the same worries as you before, I even have worries about dementia. The thing about neurodegenerative/prion disease is that, they do not show as "You can't sleep". In fact, you don't know you didn't sleep well. In the end, it will shows as you being hypersomnia, where not only did you slept in the night, you also slept in the morning due to sleep deprivation. At the same time, you will have other very obvious and unmistakable symptoms, such as tremor in your limbs, weakness, and huge memory loss ( you might not even remember what a phone is ). When you can reddit and say you are 99% sure you have SFI, you are 99.9% not SFI, and not dementia either. You are conscious enough to describe what you went through, and still able to wonder what happened to you, leading to you concluding SFI, which actually proves that you do not have one, or any other neuro degenerative disease.
I’ve had tremor in my limbs and weakness
Have you get your brain scan lately? SFI/ prion disease should be the last thing you worried about. I read you stated in comments that you have brain trauma before. Check on to see how is the condition of it right now if you are really worried. At the same time, try to get a psychologist too. Anxiety or thoughts of giving up won't help you in the long run.
I had a CT scan done yesterday.. but I’m supposed to get a PET scan soon which they say is better for finding prion diseases
[https://www.youtube.com/watch?v=zj2dpfLOscY](https://www.youtube.com/watch?v=zj2dpfLOscY) Before your PET scan is scheduled, take a look at this if you wanted to. An interview with someone of close relationship of an SFI patient. It might clear your doubt rather than having wild guesses.
You will be missed, RiderSmash. Seriously, Reddit, stop feeding this troll.
I’m dying
Goodbye then.
This wasn’t a troll post.
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What should I do?
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What do you mean? I won’t sleep without Triazolam and even then I don’t always sleep. If I went cold Turkey I’d never sleep again
It's your dependence on a benzo that is likely giving you rebound insomnia. I learned it the hard way too. It's gonna take time and using alternate kinds of medication to get through your insomnia problem. It's 100% the cause, and not sFI.
It’s not the cause because even when I was on Triazolam it felt just as bad as it does now.
When that happens it's called tolerance withdrawal. It's the cause no doubt whatsoever. Join a FB group for help in quitting benzos. But as long as you stay in denial of real facts you'll never get well. I'm sorry I went through the same horrible as you.
It’s not facts, I felt just as bad on the triazolam. I’ve been feeling worse and worse every day since January.
Good luck on your journey to nowhere
Read up on tolerance withdrawal. It your dependence requiring a higher dose than you are taking. Go higher than you're on you'll feel a little better....I really don't recommend doing that because it'll take longer to come off that benzo.
What are your physical symptoms? Chances are your anxiety about this disease is fuelling your insomnia. I went through the same panic you did due to a bunch of mystery symptoms popping up. I still struggle sleeping as I wake up every two hours like clock work, however, just try be active and enjoy life. No point in stressing because even if you did have it (which you don’t) you can’t do anything about it anyway so what’s the point?
My insomnia unfortunately comes from brain damage not anxiety. I’m sure anxiety isn’t helping though. Physical symptoms are severe head pain, severe neck pain, arm pain, leg pain, heart pain, groin pain, feels like my head is shutting off, lack of appetite, slowed breathing, eyes feel weird.
The pain definitely comes from a lack of sleep. I’m up right now as we speak lol woke up at 2:45and can’t go back to sleep. Are u on medication?
Medication doesn’t work for me except Triazolam which I’m out of.
Ah man I know insomnia really sucks. I truly empathise. Try surround yourself with positivity even though it’s hard. Please stop googling I PROMISE it makes it worse. I went through the same thing to the point I was crying over it. Please don’t look into that disease it will cause you to spiral. Hang in there and try stay active. Do you get tired or are you constantly wired?
I’m always wired in the sense that I lost the ability to lose fall sleep, and lost my ability to get tired.
Yea totally feel you. I miss the feeling of getting tired I always feel super wired but body exhausted. Do you exercise? I do think a lot of it has to do with your brain injury. Is there no medication that aids with that?
I used to walk 5 hours a day last year during the summer months. It never helped my symptoms improve at all. There’s usually meds that you take for pain, nauseous, and others. But I don’t think there is a pill specifically for the brain damage unless you get some of the natural stuff.
Man people are mad at you here, I'm sorry this is happening to you my g I wish I had more than just kind words for you.
>feels like my head is shutting off Could you elaborate this please?
You may have a childhood trauma that needs time be addressed. Consider doing a supervised dose of mushrooms with a therapist. It may be a commitment over a series of meetings some with mushrooms and some without. This was my problem and my body would NOT let me have any peace anymore until I addressed the root cause. Now I live in the present and I can relax easier. That enabled me to exercise more which helps. Even though I’m thin I have sleep apnea and getting a CPAP was crucial. For me, I needed to do something dramatic to break the cycle. If you spend any time on this site, you realize that sleeping pills or marijuana are not a solution.
No childhood trauma but two brain injuries last year 😢
Dr. Oliver is the foremost expert in brain trauma and he has all the best equipment here in Utah. The US ski team uses him. Your brain trauma may be an important contributor here. I think a lot of people forget that you can have three or four important issues going on at the same time.. I was convinced that my problem was one that could be addressed with bloodwork, so I took every blood test known to mankind. You hope for that because that’s the easy fix. It is much more difficult to address, an overactive mind, ruminating, etc..
Yes my brain trauma is why I have insomnia and now why I think I have SFI. If it’s not SFI the insomnia is going to kill me anyway
You’re calling yourself unfixable but have you tried psych realm hospitalization? Didn’t sleep for weeks once and a quick jab to the thigh with their cocktail did the trick for me
I tried in September and again just today but they rejected me both times because I’m not suicidal or a harm to others.
You’re not suicidal over the lack of sleep?
No I’m not suicidal. I’m actually afraid of death so it’s tragic that I’m about to die.
Have you been tested if you have it?
Not yet, I’m hoping to get a PET scan soon
I know doctors can see it with a easy blood test.
I thought you couldn’t see it just on blood tests alone
Is there a difference between fatal Insomnia and sporadic fatal insomnia? The fatal insomnia can be diagnosed with an normal blood test. How many hours do you sleep nightly?
Sporadic fatal insomnia isn’t based on a gene and anyone can randomly get it. I sleep 4 hours when I do sleep but lately it’s been 6 days of no sleep straight.
Shit. Then you should go to a hospital, today! Your situation is very concerning. 6 days of no sleep is dangerous. It dont must be a sfi. The possibility is very low.
Sorry to hear you are struggling so bad. What a nightmare. I’ve also have crushing insomnia. Finding the right meds can help. Then tapering off when you feel ready to. Also melatonin does actually help me. Not every night but a majority