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Fear of Sporadic Fatal Insomnia

Posted , 8 users are following.

c88125
c88125

This might sound ridiculous, but a bout of insomnia has left me fearing sfi. I've had sleeping problems before but this has been my worst episode in a while. It started about two weeks ago after a few nights of poor sleep due to a variety of reasons that has now lead to a loop of dreading not sleeping and not sleeping! Of course in the dark hours of the AM I stary fearing I have this and will never get better. The sleep itself has varied. I had one good night where I only woke up briefly once in 6.5 hours and a bad one where I slept maybe 3. My GP suspects stress/anxiety is the cause, and I logically know this makes most sense, but I can't shake the fear that I really have Fatal Insomnia. Any reassurance will help please?

0 likes, 6 replies

6 Replies

  • lily65668
    lily65668 c88125

    Posted

    I'm sorry but, yes, this does sound ridiculous!wink

    There's no way you could have fatal insomnia, either the sporadically occurring or familial kind. I'm a former neuro nurse btw.

    This is an incredibly rare prion disease with an incidence of one in 500,000. "Fatal insomnia" is actually a misnomer, as insomnia only really sets in during the terminal stage. By this time the patient is completely unable to take care of himself, let alone read, write or post on forums.

  • icecool
    icecool c88125

    Posted

    Hi I would advise seeing your dr and asking for asleep study test as you have or may have a sleep disorder. These disorders are very duisruptive and a sleep study will help to get to the bottom of it. Have you trid Mindfullness, Mediation, relaxation exercises. These are reallyhelpgul. Sometimes medication can exacerbate the problem.

    Take care

     

  • icecool
    icecool c88125

    Posted

    Sorry re typos . Meditation. Tried. Disruption. Helpful.
  • clay59274
    clay59274 c88125

    Posted

    I'm not sure how you are doing but hoping better. I've had progressive insomnia for 5 months and been on various sleep aides without success. I have transient double vision, muscle twitches, heat intolerence, headaches, neck stiffness, very small pupils, anxiety and depression. Been very scared it's SFI and have corresponded with Dr Mastrianni in Chicago who said sleep study will tell a lot. Just had my sleep study and report showed I slept for 278 minutes, 12% in stage 1,   76%in stage 2

    0% slow wave sleep and 11% of REM. 

    Also had 268 limb movements. I know SFI robs deep sleep and that's what I was afraid of when I got results. I never get restful sleep, face has aged greatly with deep eye hollows. Memory and thought processes and worsened. 48 year old man with 2 young children. Very scared and know there is no cure or definitive diagnosis until autopsy. My DR has no clue.  I'm at a complete loss and only feel regret and despair 

    • NECKBONE
      NECKBONE clay59274

      Posted

      Most physicians have no clue how to treat any form of sleep problem outside of sleep apnea, so the fact that your doctor doesn't know how to help isn't cause to believe you have sporadic fatal insomnia.  

      Also, just read this forum for other peoples' experiences with sleep medications.  They have no positive effect for the overwhelming majority of insomnia sufferers.  So again, the unresponsiveness to meds just means you are like most other people with insomnia.  

      Problems with cognition are not limited to SFI.  Everyone, literally everyone that experiences insomnia for any extended period has problems with memory and cognition.  It's often referred to as brain fog and you will find that it is a consistent theme in this forum.  

      I'm no doctor but also don't think you would have 76% stage 2 and 11% REM if you had SFI.   People with SFI barely have any time at all beyond stage 1.  

      What you are going through is tough as hell already, and believing that you have an incredibly rare, incurable, fatal disease is making your anxiety worse, and in-turn making your insomnia worse. It is easy to start thinking that you can't be fixed when your doctor offers no help beyond a prescription for sleeping pills.  I used to worry myself that I had SFI, or something else that has not even been discovered when my insomnia went on for awhile and nothing seemed to help.  I got straight through a combination of antidepressants (taken for a few months), cognitive behavior therapy, and sleep hygiene.  

      Have some faith friend.  Get your anxiety and depression treated.  Your sleep will improve. 

  • ZackAttack1990
    ZackAttack1990 c88125

    Posted

    Back in July I had a scary bout of insomnia and didn't sleep for 9 days. I discovered the disease that you are afraid of not long after I had the insomnia. I became scared that I had it, but here it is four months later and I am sleeping a lot better and getting 7-9 hours of sleep. I had the same exact fears you are having. I still think of the disease and know deep down that I don't have it, but my anxiety will not let me let go of the worry. 

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