Well I did have a beer once and it did help me sleep for 8 hours straight - like I didn't wake up in the middle of the night. But I tried it again, and it didn't work the second time. So that made me antsy. But I got over that eventually. Is it possible that a prion became mutated when I constantly thought about it? Or does it take time for this disease to "build up" and then it become prelevant?
There is no way thinking about this disease could cause a prion mutation giving you sporadic fatal insomnia. Thinking about it can cause stress and the release of stress hormones (cortisol and adrenaline that will cause insomnia) but not cause gene/prion mutations. I'm not sure there is any hypothesis on what causes the prion to mutate. There are so few cases that I doubt they can find any common denominator for what causes the mutation.
I don't believe there is any building up of the disease. So if you've had this for awhile or have had it on and off, then you should rest easy that you don't have the disease. Unfortunately, though, you have insomnia. And at your age, I would really hope that you find a way to be calm and get a better handle on your sleep issues. The longer it goes on the harder it is to reverse. My first bout of insomnia lasted about 3 months. Then I went for a year of wonderful sleep. Then it came back and I got all stressed out and worried about my physical health and whether I had some disease causing this and I would soon die. That worry and fear prolonged my insomnia. It's now a full year later and I still don't sleep like I used to. Better but not like it used to be. And it was all my doing by allowing myself to get so over the top worried and paranoid about diseases I didn't have.
To be quite honest, I think you have crossed the line into obsession. Your anxiety is overboard. Reading your responses, it is clear that you have not really taken in a word of anyone's advice. Irisrose, in particular has told you the straight story and been very informative. I suggest you get some treatment for anxiety and obsessiveness. You will continur to have insomnia intil you can accept that there is nothing wrong with you. Look at it this way -
Regular insomnia affects about 2 in ten adults
Familial Fatal insomnia affects about 1 in a billion people.
(what makes you think you are the 1 in a billion people?) Also look at the word Familial. It means RUNS IN FAMILIES. If you had it, there would be others in your family who had died of this (dropping like flies may be closer to the truth) You are right, there has been 1 case of sporadic fatal insomnia, which was only surmised at autopsy and only because there was no other apparent cause of death. The only other cases in the whole world ever have been in 1 family somewhere in the Southern States. They apparently had genetic counseling years ago and have let their line disappear. Sera
Well I do have two more questions, and then I'll try and calm myself down. Do people with this disease ever go into REM sleep? Because if I'm having these dreams, I am having REM sleep. And if you have this disease, how much sleep do you get when the symptoms first appear? Like I have heard of some people not sleeping at all when it sets in, and other people have told me that when you have it, you slowly lose sleep. Sorry for all of this.
I don't think anyone here is going to be able answer your questions. None of us have it, none of us have had a family member or friend that has had it, so none of us will be able to tell you anymore than what you are finding on your online searching. And obviously even the doctors and researchers submitting their case studies can't say definitively how it starts, either, because there are just too few cases to compile any data giving that answer.
I think you need to have a good sit down talk with your parents and/or doctor and see if you can get something to help you calm down and get some perspective. If that means a short course of some kind of medication, you should really consider it and so should your parents and/or doctor. You are in a viscous cycle right now that I'm not sure you can break out of on your own. Your lack of sleep is causing your great worry and anxiety and that worry and anxiety is causing you insomnia. I would say with 100% certainty from what you described, you have insomnia, nothing fancy just insomnia. But this vicious cycle isn't allowing you be rational about it and keeping you trapped in this vicious cycle.
I really hope you can get some relief and clear your mind of your fear of this disease.
I remember I tried the take a Unisom pill but that didn't seem to work out - my anxiety took over. Anyway, I actually went to my regular doctors office and she just said "you don't have it." She actually told me she never heard of SFI. And she told me that if this continues, then she will prescribe me some sleeping pills. I guess I'm scared because I've never had insomnia this bad. Like I've never had vivid dreams, or woken up so frequently in the middle of the night. Unfortunately I'm one of those people that has to be tested or screened or whatever to put my mind at ease. Although I do really appreciate the feedback.
I am still concerned. Last night I tried falling asleep around 10:00 p.m. but couldn't fall asleep until 11:30. When I did finally fall asleep I kept getting up until I got up for the day at 5:00 a.m. I got up almost every hour on the hour. The only difference with this time was that I didn't have any vivid dreams every time I fell back asleep. I did dream but I forgot the dreams a few seconds after I woke up. Does this mean that my sleep is getting better or worse?
I will try to help you. You are only 19 years old. When I was 19 years old I was able to sleep 8-9 hours(most nights 9 hours). Then I got a whiplash(make sure it won't happen to you)and cannot sleep since then without sleeping pills at all and that is cause of pain.
It is not normal what is happening to you. I you don't suffer from pain that there should not be a reason to not be able to sleep at night.
So you are doing ok, at least you don't suffer from pain. Not being able to sleep is a turture but imagine pain all the time.........
I suggest you go to the sleep clinic and they can check you there.
Best of luck
I just don't understand that my symptoms are still here, eventhough I'm not thinking about it at all. Like my sweating, muscle twitching, insomnia, rapid heart rate, etc. are still present but I am not even thinking about this disease.
You obviously do not have Fatal Insomnia. I used to think the same myself. One day I was sleeping just fine, and then I went to bed the night before work, and my mind raced and I simply looked at the clock every hour. I counted down til it was time for me to get out of bed, and ultimately, I did not sleep a wink that day. I know exactly how you feel my friend. That got my ball running, I had problems for a very long time. I would sleep solidly just to have a couple days where I get 0 to 4 hours a day for two or three days, but I learned it was my anxiety and worry about getting enough sleep that was keeping me up. I remember about a month into my sleeping problem, a friend of mine told me about that illness, and I reacted JUST like how you did. I read about it obsessively, watched the stuff National Geographic had about it. That even threw me into a deeper state of panic. That was over a year and half ago. Im still alive, and even though I still go through rough days where I do not sleep good. I know it's just my stress and anxiety. usually after a few days I'll go back to sleeping like normal.
Btw, if you are a light sleeper, like myself, then its always been normal for me to wake up a few times during sleep. I still feel fine and refreshed so I never worried too much about it. Also, FFI and SFI does other damage to your brain, I think you would know if you have it. It is related to the Mad Cow Disease. Your also more likely to win the lottery 5 times before you would spontaneously develop SFI. Also, you are NOT in the age range to come in contact with it. Fatal Insomnia typically affects people between 30 and 65. Also understand, only about 100 people have been affected by this illness.
If i was you, I would rule out Fatal Insomnia, I know once you start getting worried about something, it won't stop. Its like a song you just cannot get out of your head. I've been through your problems before my friend. And even though I will still deal with it from time to time. I've learned that isn't what Im going through. I'm sorry you gotta go through with this, I hope I've been helpful.
I hate to hear about someone so young being consumed with this anxiety and worry.
There are some wonderful sites with boundless information on getting a good nights sleep. One thing that might help is exercise. Regular exercise helps reduce stress and a short run or walk in the late afternoon or evening will help get rid of some energy. Yoga also helps some people.
Good luck with this. I really hope you can get through this so you can rest well and get on with your life!