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marblecomp52 06-29-2012 08:11 AM

Do I have Fatal Insomnia... really worried!!!!!
Okay now for almost 2 years on and off I have had random insomnia. The reason I had the insomnia though was because I thought I had a deadly insomnia called Sporadic Fatal Insomnia, the insomnia you don't have to have run in your family to have. Now this has since kind of gone away...the fear of having it anyway. But last night I was trying to go to bed at about 11:00 p.m. but I couldn't fall asleep. So I was tossing and turning for about 1 hour when I just sat up and watched some television until 1:15 in the morning. So I tried going back to bed and I finally did at around 1:25 a.m. I got up at 6:30 and then fell right back asleep and got up at about 8:10 a.m. Now my biggest concern was I have never had random insomnia when I wasn't stressed about the fatal insomnia because I wasn't thinking about it. I was really tired. Now I'm woried that I have this sporadic fatal insomnia because of my obsession with it. So I have 2 general questions:

Does it sound like this is the start of Sporadic Fatal Insomnia?
Do you get any sleep the first night symptoms start?

I'm only 18 yeras old too...please help me!

Vyking 06-29-2012 10:26 PM

Re: Do I have Fatal Insomnia... really worried!!!!!
I think you are worrying too much.
Thoughts racing around in your head is not going to help you sleep.
Try to relax and go to bed when you feel tired.

kenzibenzi 06-30-2012 03:18 PM

Re: Do I have Fatal Insomnia... really worried!!!!!
The reason you fell right back to sleep in the morning is because you only got a few hours sleep and you were tired. You're much to young to worry about insomnia. Try no caffeine for several hours before bed, no tv while trying to go to sleep, and no thinking in bed! I know it's easier said then done, I've had insomnia for about 25 years, I believe mine is self inflicted by my own bad habits. I am my own worst enemy. Try deep breathing and going to your happy place (in your mind) and you might be able to fall asleep. Good luck! As long as you keep worrying, you will not sleep, trust me on that.

Carbonfiber139 07-01-2012 10:56 AM

Re: Do I have Fatal Insomnia... really worried!!!!!
The greatest cure for insomnia is fatigue and exhaustion.

If you are really worried about notfalling asleep the root of your problem might be ,as the other user suggested, a lack of proper diet and a fitness level that doesn't support proper sleeping habits. I would try getting into a fitness class or sports program of some sort and exert yourself physically. Besides becoming a model participant and a valuable player, you will start to notice you will sleep a lot better. Also feigning insomnia is a habit of malingering that attention starved pre adult humans do to try and understand their own insignificance in the world. Trust meI know I was once 18 and I went through all the same scenarios you were describing. And someone I trusted simply told me to quit worrying about redicilous nonsense, increase my physical activity levels. And to always remember that what you see in horror films is a product of someone's fictitious imagination.


gardenandcats 08-08-2012 10:33 AM

Re: Can't sleep... need help!
It sounds like its your anxiety that is preventing you from sleeping well...Might be a good idea to see a doc and get some help with your anxiety

marblecomp52 08-08-2012 10:39 AM

Re: Can't sleep... need help!
Thank you for the reply, my mom told me the same thing. But I feel like I am about to fall over when I walk, etc. Like this is the real deal. I have had this same kind of worry before, but it was never like this. What are the odds that this could be the fatal insomnia?

marblecomp52 08-10-2012 05:12 AM

Don't know what to do anymore!
I am really scared and mad.
I have had a constant fear that I have sporadic fatal insomnia and I now KNOW that I have it!
I had some random insomnia about 5 nights ago, and during those 5 nights I only got 4-6 hours of sleep a night. But last night I only got 3 hours of sleep, and I know it will only get worse. I know I have it because I have impotence, my anxiety has gotten a lot worse since this has started, and I have been having numerous muscle twitching, etc. I really feel like I just want to get away from it all. What should I do?
How do you test for this disease. Because I would really want to see whether or not I have it. I'm only 19 years old! Please HELP!!!!!
So my questions that no on will seem to answer ever is this:
What are the first symptoms of Sporadic Fatal Insomnia?
Do you sleep at all the first night symptoms become apparent?

AuntNanc 08-11-2012 02:56 AM

Re: Don't know what to do anymore!
You're only 19. You will be relieved to know that this disease strikes between the ages of 35 and 60, with most people experiencing first symptoms around the age of 50. So it is highly unlikely you have it. Simple fatigue from not having slept well for several nights can eventually cause muscle twitching and anxiety. And anxiety will turn a few nights of little sleep into many nights of little sleep and a lot more anxiety, which can then extend into the other symptoms you mentioned. I'm 55. Trust me. I know what simple daily stressors can do to wreak havoc on your sleep. Take a deep breath. Have you seen a doctor about this yet? To be tested for Sporadic Fatal Insomnia, you would need to see a neurologist. If you really want to know the symptoms, go to a search engine and enter something like, "Understanding Sporadic Fatal Insomnia." I think you just need to relax and see your family doctor first. A simple short term sleep aid may be all you need to get you past this bit of insomnia. And, if your doctor thinks there is cause for concern, he/she can refer you to a neurologist.

Jigglypuff2011 08-11-2012 07:25 PM

Re: Fatal insomnia... Please help me!!!!!!
Having random insomnia does not mean you have some fatal disease.

It usually means that something is bugging you, even it its sub-consciously, and worrying you so you cannot sleep. The chances are you are focusing on the small symptoms because you're looking for symptoms - some kind of mild hypochondria.

As for the anxiety, you're worrying yourself about this illness so you're making yourself anxious!

Just relax. 8 hours of sleep is normal and what the body needs, especially at your age, and besides everyone has a night where they cannot settle, and other nights when they sleep in for several more hours than usual. It's normal!

By all means see your GP if you're worried, but being anxious and having one episode of insomnia does not mean you have a terrible disease. :)

Titchou 08-11-2012 07:26 PM

Re: Fatal insomnia... Please help me!!!!!!
Fatal insomnia is a very rare autosomal dominant inherited prion disease of the brain. It is typically genetic in origin though it can occur spontaneously. You can be tested for the genetic mutation. There are so far only about 100 cases world wide and only 40 families carry the defective gene. I think it's highly unlikely that you are number 101, particularly since the beer aided your sleep. Alcohol is a depressant. Someone with this genetic mutation does not respond to sleeping meds, depressants, etc. I'd recommend that you see your doctor for a full work up and maybe take a benedryl at bedtime.

Rick4489 08-11-2012 08:50 PM

Re: Fatal insomnia... Please help me!!!!!!
If you slept for 8 hours on one beer, drink another beer tonight before you sleep. One beer will not hurt. That solves your problem temporarily until whatever is bothering you passes.

welch92 08-14-2012 05:39 AM

Re: Can't sleep... need help!
[QUOTE=marblecomp52;5036172]Thank you for the reply, my mom told me the same thing. But I feel like I am about to fall over when I walk, etc. Like this is the real deal. I have had this same kind of worry before, but it was never like this. What are the odds that this could be the fatal insomnia?[/QUOTE]

Hey pal:)

I'm 20 years old and have suffered from chronic anxiety/depression my whole life. I was taking a break from my very stressful position at work and staying up in a desolate little town in queensland ( I live in Australia) so there's not much to do when you're bored up there except screw around on your iPhone. It just so happens I stumbeled into that exact disorder on ********* the night before I had to get up at 5 am in the morning to make the flight back, I absolutely [U]freaked[/U] out about the situation and didn't sleep all night. Strange right? Considering this seemed to suddenly come into existence the night I actually discovered the disorder.

You're mind was probably going round in constant circles whispering "It's just the anxiety I really don't have it". But then there's always that thought sticking in the back of your head saying "what if I actually do have it". Right? What I'm getting to is that everything that you have mentioned is a direct response just from the anxiety of the "what if". Anxiety is triggered when the body is given the reason (or illusion) that there is a potential threat.

The main thing to remember in these situations no matter [I]how[/I] many times you hear that "what if" message repeat in your mind, is to truly establish within yourself the actuality that you are [U]not[/U] dying. This takes EVERYTHING in you sometimes to achieve.

I'm not trying to be a psychologist or anything but this worked for me:cool:

h2owellness 08-15-2012 01:55 PM

Re: Fatal insomnia... Please help me!!!!!!
I find that the more exercise I do during the day, the better I sleep at night. I have suffered from some insomnia myself. I wouldn't start changing your last will and testament just yet. Performing cardio-type exercise during the day can speed up your metabolism. Remember to exercise in the mornings. Research has shown that morning exercise will help to set a personís circadian rhythms (body clock) to be awake during the day and asleep at night. If you exercise at night, it may create the pattern that the body is too awake in the evening. I find that swimming is an excellent exercise to exert energy. Who isn't dog-tired and ready to sleep after treading water for an hour? I wish you the best!

Suisse85 08-16-2012 05:32 PM

Re: Don't know what to do anymore!
From what little I know of the illness, one simply does not sleep at all. Period. I do think that if you actually did have it, it would have been fatal already.

The thing about life, it seems to me, is that we can choose to live it as wisely as possible, but we can't control everything about it.

Therefore, I would recommend good sleep hygiene and some time spent quietly with a quiet mind. Breath in, breath out. I see you relaxing already.

irisrose 08-18-2012 10:24 AM

Re: Can't sleep... need help!
Really, you don't have sporadic fatal insomnia. You most likely had trouble sleeping for a couple of nights, found a disease explanation during an online search and that anxiety is only continuing your anxiety over the not sleeping and keeping it going.

None of us can tell you the early symptoms of sporadic fatal insomnia because none of us have it. We, like you, have run of the mill, pain in the butt insomnia. There are what? 6 or is it 7 billion people in this world and a handful of cases of this sleeping disease. Think of it like the lottery. What are your odds of winning the lottery? Well take those odds and make them even longer for having sporadic fatal insomnia. Do you know how many people in this country alone suffer from insomnia? 1 in 10. 10% of the population claims to have some problem with sleep at any given time. How many cases of sporadic fatal insomnia do people have in this country. None that I'm aware of. So logic would say that you most likely have plain old insomnia and not some rare sleeping disease.

First of all, you need to somehow stop believing you have this disease. All the symptoms you described come with insomnia. Anxiety, lack of sex drive, muscle twitching, mood swings, forgetfulness, foggy/dizzy feeling, nausea and the list goes on - all can be caused by insomnia, not specifically sporadic fatal insomnia. Have you seen a doctor? Maybe that might be a good place to start. Tell him/her your fears and I'm sure they will tell you you don't have this disease. Insomnia can come on in a flash. It doesn't always slowly appear. You sleep badly one or two nights and depending on how you mentally approach it, it can spiral out of control. I think if you could stop stressing about this disease and begin to get some perspective you might start calming down enough for your sleep to return to normal. So if seeing a doctor will help convince you you are simply suffering from stress related insomnia, then I suggest you do it. Because if you allow this to go on too long, it's a bit harder and longer to undue. I've been doing it for over a year now. It's better but not perfect. I came from months of 2,3,4hrs of sleep and slowly worked back up to 6,7,8hrs.

Just try to let go of the sporadic fatal insomnia. Really the odds that you have it are so remote, it shouldn't even be a consideration for what is effecting your sleep. Good luck!

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