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Author Topic: sporadic fatal insomnia  (Read 1655 times)

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Offline karacohen

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sporadic fatal insomnia
« on: November 11, 2013, 09:12:06 PM »
Hi.  I'm 38 years old and have had insomnia for the past 6 months with 2 hrs of sleep max.  I've tried everything to fall asleep but nothing works.  I also have schizophrenic symptoms.  I have complete flat affect, suffered from extreme delusions, extremely sensitive to sounds and light [background noise scares me], vertigo, nose bleeds and loss of focus and concentration. I also lost my period 6 months ago and now have chronic yeast infections.  My hands and feet get numb and I am hot one minute and cold the next. My head tingles and pounds.  I can't work and live indigently without health care with my father in Nashville, TN.  I go to a low budget clinic with my father and they don't know what's wrong with me.  My dad doesn't understand and is getting fed up with me.  I want to work and function but I can't seem to do much of anything these days.  I have no friends, financial resources and need help.  I believe I suffer from mainly negative symptoms of schizophrenia and sporadic fatal insomnia.  I'm very scared and would like some help and advice.  Thank you.
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Online Cuchculan

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Re: sporadic fatal insomnia
« Reply #1 on: November 21, 2013, 06:28:58 AM »
You should have a look in your area or surrounding areas and see are there any sleep clinics. This would be the best place to get help. They would wire you up. Study you as you try and sleep. Be able to tell you a lot from what they find. Is like a test. Only you would have to stay in the clinic for a few days as they do the tests. Which mainly revolve around sleep and how the body functions as it tries to sleep. Your doctor may know of such a place. Nothing wrong with asking him.
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Offline karacohen

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Re: sporadic fatal insomnia
« Reply #2 on: November 30, 2013, 03:02:28 PM »
I'm still not sleeping at all.  Six months without any sleep is crazy but true.  My heart races, body gets cold and hot all day and night.  I can sweat when it's 20 degrees outside or shake when it's 70.  I went to an indigent clinic last week and started hallucinating.  People's faces looked soulless, every sound was pronounced, felt like gases were pouring out of vents.  It was awful.  I'm very shaky and paranoid all the time now.  This is so freakin scary and I live in guilt over the death, ***** of my niece and previous horrendous lifestyle.  Yet the flat affect won't go away so I feel so empty and soulless.  My family and friends are giving up on me.  Just sit around or walk around in circles because I have nobody to help who understands and I have nowhere to go. I can't even go to a restaurant or supermarket without being paranoid about sounds, smells and faces.  Really have every symptom of Sporadic Fatal Isnomnia, lost my period 6 mos ago too and can't do anything about this!  I've tried meds for depression, schizophrenia and anxiety but none of them work.  So frightened of living and dying this way and nobody understands!! Always alone!! Please help!!
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Offline aardvark

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Re: sporadic fatal insomnia
« Reply #3 on: November 30, 2013, 04:19:47 PM »
To be honest, you are probably are sleeping — could be anything from microbursts lasting from seconds to minutes, or longer sleeps in between incidents of checking the clock overnight. Six solid months without any sleep at all would not be survivable. With regard to Sporadic Fatal Insomnia, I have the same worries sometimes as my sleep has degenerated badly, but a quick calculation (16 known cases in a global population of 7,000 million) indicates that your odds of having it are a staggering 437,500,000-to-one. More likely, your condition is a combination of severe depression compounded by insomnia and possibly compounded by some kind of personality disorder — should be treatable eventually, but could be a case of trial and error.
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Offline karacohen

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Re: sporadic fatal insomnia
« Reply #4 on: December 14, 2013, 07:57:51 AM »
I know it's fatal insomnia.  I don't sleep at all.  Not even for a minute!!  We're going on 6 months and getting sicker and sicker everyday.  The worst part of this disease is feeling detached from everybody and everything.  I feel like I lost my soul and I'm possessed as if this is a curse.  I long to feel connected to G d and life.  This is so scary.  I wish I had somebody to talk to who understands.  Please help!!
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Offline Stressed Jumper

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Re: sporadic fatal insomnia
« Reply #5 on: December 14, 2013, 08:40:32 AM »
Many medical teaching colleges do sleep studies that come with free (or sometimes even compensated) evaluation and treatment.  There are also usually drug studies that come with free meds and treatment through medical colleges and some drug companies.  Perhaps you could look into one of those?  Low cost clinics are not likely to have advanced diagnostic and treatment options on hand but teaching colleges are some of the best in the country.  I live near the University of Florida and their hospital is amazing.  Good luck and Hang in there!
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Offline karacohen

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Re: sporadic fatal insomnia
« Reply #6 on: December 24, 2013, 07:02:31 PM »
Thank you!  However, I'm in Nashville.  Still not sleeping!!  Symptoms are getting worse and more painful.  I'm having severe pains in head.  It's swelling up, feels like it's going to explode.  I'm scared all the time.  I have no emotion anymore, no empathy, just fear.  There are always black crows around me.  I'm freaked out and paranoid.  I guess the only thing left to do is pray.  Thank you!!
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Offline Stressed Jumper

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Re: sporadic fatal insomnia
« Reply #7 on: December 26, 2013, 07:57:10 AM »
Try Vanderbilt University Hospital.  They are in Nashville and have an extensive research department.  Link is below

http://www.vanderbilt.edu/oor/

Hope this helps!
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Offline sfi

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Re: sporadic fatal insomnia
« Reply #8 on: February 08, 2014, 12:55:29 PM »
dear karacohen

same problem, 11 month without sleep i lost sleep, appetite, desire for drink water,flat affect, im impotent and dont feel pain  in one night...

13 months ago it was big pain in brain than 2 months later started total insomnia (no sleep). i used too much medics (zoloft, remeron, rivotril, bromazepam, lorazepam, seroxat......) but nothing work-nothing, in july other pain in brain, than in august MRI result ok blood ok....i lost sensation of smell taste, i dont feel hot cold its winter -1 outside and i dont know because dont feel it. i dont need to eat, i dont know what i eat because i dont feel taste, its so horrible to be on earth and dont feel and live like other people, its hell on earth!!!!!!!!!! how to make test for sfi im sure that i have it
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Offline sfi

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Re: sporadic fatal insomnia
« Reply #9 on: February 23, 2014, 05:12:49 PM »
all people interested to know about sporadic and fatal insomnia can search page sporadic fatal insomnia on feyssbuuk.com (i mean normal acebook page because this name is disabled by forum thats why i wrote wrong)
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