22 and Fatal insomnia please help I'm so scared :( ?

[neptune296]

I everyone I'm a 22 year old guy and for the past three months I've been suffering with worsening insomnia. I just really need some talking down or someone who's gone through something similar I'm just so so terrified I have this terrible disease called sporadic fatal insomnia.

I've been having so much trouble sleeping lately and it feels like it's getting worse. For example every night I'll fall asleep but I'll wake every hour or two. I'll also a lot of the time feel half asleep for hours at a time like I'm thinking and worrying and feeling waves of anxiety but at the same time I'm drifting in and out of sleep. This sometimes goes on half the night and I wake up exhausted. Could this be from anxiety?

Bottom line I'm just so convinced I'm the unlucky person out of billions to get fatal insomnia and that I'll die a terrible death while slowly going insane before I die. I cry multiple times every day cause I'm so terrified. I'm at my wits end and I just want to feel strong and healthy again. I'm so scared I need someone to talk to. I feel like my life is over.

Is it possible I have this or has anyone else gone through the same thing? Thank you so much for reading this. I just need some support I feel so hopeless.

[Fishmanpa]

Ok... the protein that causes this disease is found in just 40 families worldwide, affecting about 100 people... W.O.R.L.D W.I.D.E.... 100 out of 7 billion people... Do the math

Positive thoughts

[Canbud]

I had to google this condition because I never heard of it. It is, according to Wikipedia, a very rare inherited condition affecting only 40 known families--100 people worldwide.

Just think calmly for a minute. What makes more sense to you: that you have this extremely rare, genetic condition, or that you have a problem with anxiety which is affecting your sleep?

Sleep is often the first casualty of anxiety. You can't fall into REM sleep, and wake often. While awake, you brood and worry which perpetuates the cycle every night.

I'd recommend you talk to a professional about your anxiety, and in the meantime use relaxation tapes when you fall asleep. There are tons of good ones out there.

Safe to say you don't have Fatal Insomnia.

[neptune296]

I had to google this condition because I never heard of it. It is, according to Wikipedia, a very rare inherited condition affecting only 40 known families--100 people worldwide.

Just think calmly for a minute. What makes more sense to you: that you have this extremely rare, genetic condition, or that you have a problem with anxiety which is affecting your sleep?

Sleep is often the first casualty of anxiety. You can't fall into REM sleep, and wake often. While awake, you brood and worry which perpetuates the cycle every night.

I'd recommend you talk to a professional about your anxiety, and in the meantime use relaxation tapes when you fall asleep. There are tons of good ones out there.

Safe to say you don't have Fatal Insomnia.

Thank you thinking of it that way helps a lot. I know it's extremely rare and I know I don't have any family members with a history of it so the genetic one for me is impossible but of course my irrational brain has to then focus on the sporadic form which doesn't have to be genetic. Of course this is even more rare only 16 cases ever diagnosed. I must be crazy to even consider it. But I still do :(. I know rationally there's a million other more probable causes.

I just for some reason can't get it out of my mind and every day I keep waiting for it to progress and get worse. Which it sometimes seems to do. I just hope I'll get better cause I'm so tortured and terrified every day and before this I used to be doing so great and was happy and healthy :'( .

It would just be my worst nightmare to die of a disease like that before I even feel like I've started my life or accomplished anything. :'(

[Canbud]

Thank you thinking of it that way helps a lot. I know it's extremely rare and I know I don't have any family members with a history of it so the genetic one for me is impossible but of course my irrational brain has to then focus on the sporadic form which doesn't have to be genetic. Of course this is even more rare only 16 cases ever diagnosed. I must be crazy to even consider it. But I still do :(. I know rationally there's a million other more probable causes.

I just for some reason can't get it out of my mind and every day I keep waiting for it to progress and get worse. Which it sometimes seems to do. I just hope I'll get better cause I'm so tortured and terrified every day and before this I used to be doing so great and was happy and healthy :'( .

It would just be my worst nightmare to die of a disease like that before I even feel like I've started my life or accomplished anything. :'(

Maybe you've hit on something--Could it be that you're struggling with a fear that you won't accomplish enough in life? You're 22 and you've got your whole life ahead of you, but that includes alot of challenges too. Sometimes our anxiety about what lies ahead of us gets kind of sidetracked into other fears. Maybe focusing on this very rare condition is a way of avoiding other fears you might have.

At any rate, whenever you start feeling that fear in the middle of the night let your logical brain take over and tell you that you are just fine.

[neptune296]

Yeah I'm worried about that too I just find it so hard to believe anxiety is causing all of this. I feel terrible and it just worries me that it seems to get worse just like that disease even though it's a 16 / 7,000,000,000 chance I have it which is insanely rare so I don't evene know why I'd give it a second thought.

I think the fact that I feel so sickly and tired makes me think in my mind when I don't sleep that "Omg I feel so tired, I can't sleep, this must be something terrible and not just anxiety" then I get more panicky and scared that I'm the unlucky 17th victim it's so insane I know :(.

Could anxiety be causing all of this and not fatal insomnia? Has anyone gone through this feeling like they're in a light half sleep half the night and wake up unrefreshed?

[Canbud]

That's what lack of refreshing sleep does to you--you feel crappy, and almost "out of body". I'm 57 years old and I have enough sleepless nights to know.

Again, what are the odds that it's anxiety vs Fatal Insomnia? If you think clearly, you'll KNOW it's the anxiety. You have to go forward and manage your anxiety, rather than feed it nightly with your fears.

[anthrokid]

I replied to your original thread about this a while ago, but you may not have read it, so I will give my response again for you.

There have been studies with people who have stayed awake CONTINUALLY for up to 14 days. Whilst these people experience some negative side effects due to sleep deprivation (e.g. moodiness, hallucinations, memory problems), all have returned to normal functioning after sleeping again. Whilst it isn't ideal to be sleeping a few hours a night, you are still getting SOME sleep which is better than nothing.

Also, to my knowledge, sporadic fatal insomnia is an inherited autosomal dominant disease, which means one of your parents would have to have had it for you to have it. Furthermore, it is INCREDIBLY rare. There are less than 50 families in the world known to carry the gene for this condition. So just to reiterate - speaking from a scientific perspective, if no one in your family has suffered from this condition, you will NOT have it. It is inherited, and dominant, so like I said, one of your parents MUST have the condition for you to have the condition.

As Canbud said, if you think of it in perspective, it is far more likely that your insomnia is due to anxiety than fatal insomnia. In fact, unless your parents have it, it is prettymuch IMPOSSIBLE for you to have fatal insomnia.

Have you spoken to a doctor about your insomnia? Heaps of things can cause insomnia, and it could be something very simple such as a certain vitamin deficiency.

---------- Post added at 11:40 ---------- Previous post was at 08:54 ----------

Regarding the sporadic form, you are probably a billion times more likely to trip in a puddle. And although they say 'sporadic', it is quite likely that there is one thing that links these 'sporadic' cases. Unfortunately, science is fallible and maybe we just haven't been able to identify the related gene or trigger yet.

In any case, you really need to discuss this with a doctor - it is consuming your life - and hopefully a doctor can help you understand that this won't happen to you and help you let go of the anxiety around it.

[tan235]

Welcome to my world! I'm a mum with a toddler sounds exactly the same - anxiety will not let you sleep. Insomnia is awful as you go to bed thinking about it which causes insomnia!!!

Ha ha - you don't have te fatal insomnia. You just don't.
Rest your mind and your body will follow.