View Full Version : Fatal sleep insonmia
So scared I got fatal sleep insomnia I now how rare this disease is but it's matching all my systems and the doctors just putting it all down the ansiety it's driving me insane driving my family mad my girlfriend saying she's going to leave me if I don't snap out of the depression but I can't just wave a magic wand and it and will disappear it first started about six weeks ago when I started getting very bad insomnia and when I did eventually finaly sleep there very vivid life like dreams what last a couple of hours I wake up again start to try fall asleep and I either have visual and mental hullucinations then I can either fall into an extreme sleep paralysis or a lucid dream all this is apsolouty terrifying me my body constantly feels tired but my mind never does iv tried sleeping pills diazepam, mirtazapine and mirtazapine sent me to sleep but I had horrifying nightmares nothing helps please could someone give me some hope that this is not fatal sleep insomnia and something else becuase I'm at my wits end and it just feels like a point where I'm not getting any enjoyment over life nothing ever seems to make me luagh sertatonin in my brain feels so low
With respect, NO, you just don't have this rarest of rare diseases (around 100 EVER in the WORLD!)
Positive thoughts
Hi Admang - Welcome to NMP. I'm sorry to hear of your sleep problems, and also the problems it is causing with those close to you. If you have bad insomnia, when you do sleep your brain will try to catch up on lots of missed dreaming, hence lucid dreams, intensely vivid dreams, and so on. It may not seem it, but it is a positive sign, and you should not let it make you anxious. Did you persist with the mirtazapine? The vivid dreams may be a way of your brain restoring itself to normal, and eventually subside as things get under control.
I no how unlikely it's sounds logically of course it's given me bad bad ansiety becuase it come on from literly nothing first the insomnia of literly not getting a wink of sleep at night for 2-3 weeks then when ever I do sleep these vivid dreams feel so real becuase I can remember everything in detail from them the moment I fall asleep to the moment I wake up about them, my girlfriends and I have also hear me snoring when I'm trying to sleep I'm literly still awake becuase she's talking to me I talk back and I'm aware of everything still going on in the room the last few months have bein hell I'm fed up of thinking about it. But it's there the moment I try get my head down for rest at night every day it's like my brain stuck in this half asleep half awake mode all the time even when I do fall asleep for the few hours with the vivid dreams I don't feel refreshed at all my body feels tired all the time but the mind won't switch of the doctor tried me on the mirtazapine and they made the vivid dreams nightmaris worse so they prescribed me with zopiclone know I'm hoping they help but don't hold much hope does anyone know of any cheap sleep study places or free advise from a specialist about sleep??
ServerError
01-09-17, 17:27
You don't need specialist sleep advice. The only sleep advice you need is treatment for anxiety and insomnia.
If you're going to worry about this illness, you may as well worry about every other illness in the world, because almost every other illness is more common than this.
littleme92
02-09-17, 02:29
I had the same fear years ago. I was hardly sleeping, at the most I was getting around 2 hours sleep and when I did sleep my dreams were very vivid like you described. It was like my body was resting but my mind wasn't. I know how scary the fear of this disease is and i know that it is easy to think that even though it is so rare, what if I'm the unlucky one.
What you need to remember is this disease is almost always genetic, so unless your parents died from this disease then you can't get it. I was prescribed sleeping pills but in the end I never took them, I guess just knowing they were there in the cupboard at the time helped me stop worrying about it. Even though these symptoms feel scary, they are not serious. It is your anxiety playing a trick on you. I started sleeping again and you will too!
You don't need specialist sleep advice. The only sleep advice you need is treatment for anxiety and insomnia.
If you're going to worry about this illness, you may as well worry about every other illness in the world, because almost every other illness is more common than this.
This ^^^ Trouble sleeping does not equal SFI. It does not present in that way, despite what the name might suggest.
---------- Post added at 18:59 ---------- Previous post was at 18:55 ----------
I had the same fear years ago. I was hardly sleeping, at the most I was getting around 2 hours sleep and when I did sleep my dreams were very vivid like you described. It was like my body was resting but my mind wasn't. I know how scary the fear of this disease is and i know that it is easy to think that even though it is so rare, what if I'm the unlucky one.
What you need to remember is this disease is almost always genetic, so unless your parents died from this disease then you can't get it. I was prescribed sleeping pills but in the end I never took them, I guess just knowing they were there in the cupboard at the time helped me stop worrying about it. Even though these symptoms feel scary, they are not serious. It is your anxiety playing a trick on you. I started sleeping again and you will too!
This is extremely common among people who are getting poor or little sleep. The reason why is because the body needs REM sleep function, but REM sleep is only one of the sleep cycles. It is also the sleep cycle in which you dream. So when you're getting little sleep, the body compensates as best it can, and when you do finally fall asleep, it falls into REM sleep much quicker so you can get some. That's why it seems like when you take a nap, you drop quickly into sleep and have very vivid dreams.
Same thing happened again last night watching a movie with my girlfriend got into the film she went sleep after I dident feel tired so put some Comedy on eventually I thought I try to sleep feel asleep For about an hour or 2 if that had very vivid Dreams woke up to go tolilet tried to get back to sleep and I was just getting the feeling where I was drifting off started getting visual hullcinations my girlfriend hears me snoring all the time when I trying 2 Sleep but still awake the doctor has given me an urgent referral to see a psychiatrist but this is not going to sort the problem out if the problem is physical and not mental I'm doing things in the day to tire myself out as much as a can my body feels so tired but my mind just won't switch off I'm at my wits end here feels like I'm just living to exist and getting no enjoyment out of life what so ever at the moment always feel so low where I can't sleep
ServerError
03-09-17, 13:56
Your insomnia is feeding on itself. You struggle to sleep, so you worry about it, which makes it harder to sleep, and the cycle goes on.
You should seek some help for this. Insomnia is very, very common, but it's also very treatable.
MyNameIsTerry
03-09-17, 14:12
Are you aware that hallucinations (visual, auditory, olfactory) when falling asleep, within the first two hours of sleep and upon waking - are perfectly normal and can experienced by anyone? It's just how the brain works in those altered sleep stages. Anxiety doesn't canuse them, because they are normal, but can make them more frequent.
What you are experiencing is what many of us on here have.
SFI is incredidly rare...and guess how many threads some of us members have seen about it? Guess how many had it?
LittleTwister
04-09-17, 01:49
Hey, are you talking about familial fatal insomnia? I saw a special about that on TV a while ago. You do not have it. It runs in families, hence the name. If no one in your family has/had it, then you don't. Please don't worry (easier said than done, I know :))
tryingtosurvive1
05-09-17, 06:48
heh, I think there's a hereditary form that plagues, like, a particular family in Italy and then there are like 10 other cases in the world?? ever??
Occasionally I read posts where I think people actually have things (and I won't reassure them) but I have never ever thought anyone really had fatal insomnia. or rabies for that matter.
Hi I no how very unlikely this disease is but I still have no erasurances until I see a sleep specialist the doctor prescribed me zopiclone exact thing happened what normally happened with or withiout the sleeping pills I get a couple of hours sleep with very vivid Dreams wake up go tolilet felt very groogy and abit more relaxed with the sleeping pills but just Couldent fall back to sleep bein suffering from more twitches and heart palpitations aswell lately and forgetting things all the time If I had the money I would go to a private sleep specialist but NHS referrals just take forever :( it's driving me insane making me realy depressed also what cuases snoring when you actually still wide awake trying to sleep because my girlfriend hers it every night I know everyone is trying to reassure me but if I could swap bodies with someone for a couple of days they would understand why I'm so convinced
Hi I no how very unlikely this disease is but I still have no erasurances
Well I for one am 100% certain you don't have this ;) I have a "Told ya so" all ready.
Positive thoughts
ServerError
05-09-17, 16:19
The are about nine documented cases in all of human history of the non-familial type of this disease.
The familial kind affects about fifty families worldwide.
You do not have this disease, and your torturing of yourself over it is essentially wasting your life. The disease is getting you anyway, albeit not in the way you fear.
I repeat, if you worry about this disease, you may as well worry about every other disease under the sun, because they are pretty much all more common than this.
I've read about this and I can see how it can cause anxiety, it's pretty frightening, BUT it's extremely rare. Also to mention, insomnia is not the first symptom of this disease, it is actually dementia.
My dosage of my zopiclone was told to be doubled by the doctor from and Iv had less sleep than I did last night not a wink tonight the tablets don't even feel like they taken effect no tired no feeling of groodyness nothing it's 10 to 5 in the morning bein lying here since 11 tossing and turning nothing driving me mad :(
MyNameIsTerry
06-09-17, 05:05
They don't work for everyone and they are only to try to give you a short term boost to get you through a difficult period or jog your natural sleep back.
Your GP can try others after this which can be used long term e.g. Mirtazapine (low dose), Amitriptyline, Trazodone, etc.
I know it's horrible, I've had nsomnia myself. It really makes anxiety so much worse and it's even harder to believe it's just anxiety. Once you get some relief it will feel like a godsend.
I literly tried so many sedatives what don't work alocohol diazepam mirtazapine zopiclone either I can't fall asleep or I fall into very visual vivid Dreams for a couple of hours or I don't sleep at all body constantly feels pysically drained 24 7 but mind feels wide awake according to Google the final stages of sleep insomnia is dementia stage its so depressing
ServerError
06-09-17, 12:31
Why are you Googling?
I'm just going to put this bluntly: worrying about fatal insomnia is stupid. It is completely and utterly irrational, and a waste of time that could be spent doing almost anything else. Sorry if that upsets you but it's true.
What you have is some very stubborn and deeply entrenched regular old insomnia. It's extremely common, and it is only made worse by worrying about it. It's a shame that you've not had any success with any treatments as yet, but let me ask you this: does all this worrying make it any better? What if you just accepted your insomnia? I'm not saying you have to like it, but wouldn't life improve even a little bit if you just... chilled out a little bit about the whole thing? As an insomniac myself, I can tell you that the answer is yes, by the way.
Okay, so nothing's worked as if yet. But don't give up. Work with your doctor on this. Maybe referral to a sleep clinic might be in order. Some therapy may help with the anxiety. I don't know. But I do know that you're essentially allowing fatal insomnia to hurt you even though you don't have it, and that's a terrible waste of what should be a better life.
Annaboodle
06-09-17, 16:59
you but it's true.
What you have is some very stubborn and deeply entrenched regular old insomnia. It's extremely common, and it is only made worse by worrying about it. It's a shame that you've not had any success with any treatments as yet, but let me ask you this: does all this worrying make it any better? What if you just accepted your insomnia? I'm not saying you have to like it, but wouldn't life improve even a little bit if you just... chilled out a little bit about the whole thing? As an insomniac myself, I can tell you that the answer is yes, by the way.
This is really good advice. I've suffered from insomnia for as long as I can remember - even in childhood. A lot of meds I've decided aren't options for me because of my addiction issues. I hope that I'll find a solution to it one day, but if I don't - that's ok too. There are worse things. Worrying and obsessing about it as I have in the past certainly doesn't help and makes it so much worse.
OP you just have really bad insomnia. It's shitty, the impact of it is not to be underestimated, but surely better to spend your time working to accept that this is what you have and strategies for dealing with it, rather than wasting the depleted energy you have as an insomniac on worrying about a incredibly rare condition that there's just no way you have.
Still having very vivid Dreams when I do sleep for a couple of hours and know In my dreams I lose my sight blindness for a couple of minutes can still can hear and sence everywhere around me in the dream but but sight comes and go very scary experiences I wouldent wish these things on my worse enemy got a doctors appointment 4pm today not what I expect much I'm at my wits end if it's not fatal sleep insomnia I don't no what it is but very scary how can anyone explain the snoring when I'm awake and trying to sleep still aware of everything around me my girlfriend even has talks to me tells me to stop snoring and I'm still awake just trying to sleep she says when I do sleep my snoring sounds very strange like someone is choking me :(
ServerError
08-09-17, 13:30
Nobody here can tell you why you're experiencing this. What we can say is that you definitely don't have fatal insomnia.
Clearly, you have sleep difficulties. Best thing you can do is talk to your doctor about it. Maybe show them this thread. A referral to a sleep clinic might be necessary. Not because there's anything seriously wrong, but because they could help you understand your symptoms and work on improving your sleep.
Surely that's got to be better than all the constant worrying?
It's just feels so long the doctor referred me to psychiatrist and ears nose and throat about the snoring what seems like the wrong referral the sleeping pills are not even working know not even falling asleep and getting vivid dreams nothing just laying there for hours where your other half is out for the count every day ain't that enough to drive anyone crazy my eyes are still stinging after 2 cups of coffee not asif you can even go a and e and say iv got realy bad insomnia and can't sleep there just look at you and tell you to go get rerefall to a specialist though your GP what takes months anyway if I was a rich person problem would be looked into the overnight becuase they have money nhs take forever
ServerError
10-09-17, 14:51
Sadly, referrals can take time. And fixing insomnia is not an exact science anyway. It's trial and error, and there's a lot you have to do yourself. But what choice do you have? You'll have to be patient, and I really advise you, if you can, to try and stop worrying about insomnia. I'm a terrible insomniac. I reckon my sleep issues are on a par with yours. But one of us suffers because of it and one of us doesn't. What's the difference? It's in how we react to it.
MyNameIsTerry
10-09-17, 17:02
How much have you looked at your sleep habits? Do you exercise? And why the caffeine? Stimulants are going to be someone a sleep clinic will recommend against if you get there as will the psychiatrist and hopefully your GP.
only had the caffeine that morning cos my eyes were stinging where id had literly no sleep dont normally drink it and yes do regular home work outs with weights and take my siberian husky on 30 minute walks twice a day nothing helps iv also bein on sertraline for months and they dont help brain feels so depleted from seratonin the only feelings i ever felt it angry guilt sadness even when my family,girlfriend are trying to cheer me up never feeling happy feeling love so empty its now gone from vivid dreaming for a few hours of hours a night to apsouluty no sleep just dreaming why im awake so feels like im at the next stage its not just the insomnia either theres bein other suttle changes i havent mentioned yet bein feeling randomly hot sweating one minute freezing cold the next for weeks i used to be the most tigerish person alive knows some does it just feels like someone touching me dont make me luagh nothing also when people have massarged me to try calm my ansiety i can feel them touching me but i cant feel the feel good factor from the massarge i have no idea what the hell this is because im still walking around driving for know what is the most baffling thing about it but its terrifying tired of fighting this :( i clean and wash things round the house 5 seconds later iv forgotten what iv done with them wish i could swap bodies with someone for one day so they new how i felt physically and mentally 24/7 but unfortunately thats impossible feel like im just in a shell rotting away also lots of twitches and palpitations and head aches temped just to get myself sectioned just to prove to the doctors i cant sleep becuase the referalls are taking far 2 long you go a and e they just tell me to go to my gp it its a mystery illness basic blood tests always come back normal.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.