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summer_26749
summer_26749

for the passed month iv been having insomnia that wont go away some nights i dont sleep at all i never feel sleepy either i could be up for days and not feel the need to sleep its like my body does not want to i read about fatal insomnia a few weeks ago and im scared i do have dreams that seem normal to me i have other symptoms to like i cant seem to take a nap small pupils one is tiny the other seems to be a little bigger then the other i also have constipation i do snore so does that mean im getting passed stage 1 off sleep ?  also been on diazepam 10mg does not do anything for me

1 like, 7 replies

7 Replies

  • tamas99133
    tamas99133 summer_26749

    Posted

    Hi there, first off, I really wish this fatal insomnia thing has never been on the internet... frown

    Maybe I'm not the best person to reply because I had and still have myself these thoughts now and then, and they simply haunt me because my brain is wired in this unfortunate way to be hypochondriac about a lot of stuff (I have both ADHD and OCD which can be a real curse in these times when I'm having trouble sleeping). I told my doctors about this 'sporadic fatal insomnia' and they simply laughed their a**es off saying they have never even heard about this. This is a specific category of a prion disease. They would bet their lives that I don't have a prion disease, not even mentioning sFI! 

    I'm not saying anxiety is the only reason of you feeling constantly on the edge, but thinking about it definitely contributes to your insomnia. If you're anxious, you don't feel sleepy or tired. Eventually, you will crash though and will sleep. 

    To battle your health anxiety about sFI (if you had the 'familial' type you would know about it...) think about it this way. There have only been less than a classroom of people diagnosed with it since the 20th century. A CLASSROOM OF PEOPLE (less than 20!). The probability being roughly 20 / (4 * 10^9) (I take 4 billion as we don't have good records of the world's population outside the developed countries) = 5 * 10^-9. The chances of you getting hit by a meteorite is 6.25 * 10^-7. IT IS 125 TIMES MORE LIKELY FOR YOU TO GETTING HIT BY A METEORITE THAN SUFFER FROM SFI. If there had been around 1000 people suffering from sFI so far, it would still be twice that likely to be hit by a meteorite. Let these numbers sink in. Make sure you get this thought out of your head first step-by-step. Do you know anyone who's scared of being hit by a meteorite? No one! Whereas there is way too many hypochondriac people who think they have sFI and worrying and being anxious about it just ends up them not getting a good sleep and developing very similar, if not identical, symptoms that of sFI. 

    I'm not an expert, but I do advise you to consult a doctor. The only thing I can tell you is that you do not suffer from sFI, and I know this thought is hard to get rid of. But do remind yourself of these things I told you. And also the symptoms could be of thousands reasons thousands and thousands times more likely to be of something else! Again, do see a doctor about it!

    Hope this helps. 

    Tamas

    • summer_26749
      summer_26749 tamas99133

      Posted

      I still have this problem thank you for your time I dunno what to do there is no other reason why my pupils are small I’m scared sad 
    • ShayRose
      ShayRose tamas99133

      Posted

      This illness is a misnomer because dr said to me its more than jus not sleeping and its vanishingly rare and genetic non inherited form is not accurate im suffering from insomnia for 6 months now i cannot sleep more than 3 Or 4 hours a night cause my head mucus sucks but when i first hit by that thing i was worry that why im not sleeping then i found ffi on the internet and everytime i try to sleep it become more worse then it was and i go straight 4 Nights without sleep and then get only 2 Or 3 Hours of sleep then i went to the doctors i had n mri scan a.d doc said i dnt have it but that anxiety of sfi is so so worse and it gets more worse when i go to bed at night this is my request to all the doctors that please remove fatal insomnia from the internet if its vanishingly rare y its on the internet???

    • NECKBONE
      NECKBONE ShayRose

      Posted

      What can doctors possibly do about reference articles and forum posts about a rare disease on the internet? Just because the articles exist on the web does not mean you are qualified to diagnosis yourself with a terminal illness after reading them. Just use your brain a bit, look at all of the posts on this forum where people think they have SFI. Count how many have come back and said they received that diagnosis from a medical doctor. The total is 0.

      You have insomnia. It can be brought on by anxiety, and it can make your anxiety worse. It can have terrible effects. But it is not rare and will not kill you. Stop making it worse by imagining you have SFI.

    • ShayRose
      ShayRose NECKBONE

      Posted

      Thanks for ur Reply bro i have mucus problem with sinusitis which is causing me insomnia and yes you are right what doctors can do about if something'S posted on the internet im much better now even though im not sleeping betteemr but i stop myself worrying about this and get my self back on track with life

  • NECKBONE
    NECKBONE summer_26749

    Posted

    There is already a fantastic response in this thread and I'll just double-down on what Tamas said about SFI/FFI:  you do not have it.  There is typically at least 2 active threads on this board where someone worries they have this disease, which I think may effect something like 1 in 500,000 people.  Nobody, at least in anything I've read here, has ever come back and said they went to the doctor and had this diagnosis given to them.  Not one soul.  Everybody worries they have it because for most of our lives it is very easy to sleep and then all of a sudden, sleep becomes this thing that is all but impossible to get.  You are going to be fine.  

    Maybe go get a sleep study done if you are snoring.  It is possible you have sleep apnea and it should be ruled out at the very least.  Outside of that, consider getting some help through any anxiety you are dealing with. 

    • ShayRose
      ShayRose NECKBONE

      Posted

      Yes can we stop google for talking about health issues im also suffering from insomnia for 6 Months i cant sleep more than 3 and 4 Hours a night i became an hypochondriac after reading about this on google i do have problems with my sinusitis as well which is causing me insomnia but whenever i didnt sleep well i think about that disease and its horrible i went to the doctor and they do my mri scan and some other tests as well they told me that i dont have it but this anxiety is really worse and google is Evil

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