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I Have Fatal Familial Insomnia

A Fatal Familial Insomnia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Fatal Familial Insomnia. You're not alone. 3 People

    Me First!!! Whoopee!!!

    SO I GET TO SHARE THE FIRST STORY ON THIS GROUP. I WAS DIAGNOSED WITH FATAL FAMILIAL INSOMNIA 3 MONTHS AGO. I HAVE ALWAYS BEEN EXTREMELEY SUICIDAL, AND THE PANIC ATTACKS AND THE FEARS, AND ALWAYS FEELING PARANOID. WELL, THATS NOT HELPING. I ONLY SEE ONE OTHER MEMBER TO THIS...
    deleted deleted 26-30 5 Responses Jan 26, 2013

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    I have insomnia really bad and it's to the point where I'm just tired, irritable and plain out exhausted. I wish I could just slide in bed and fall soundly asleep. I'm also in...
    SweetT246 SweetT246 22-25, F 2 Responses Mar 21

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    I've had insomnia since I was about 5, doctors have no idea how to help me. It takes 4 benadryl to knock me out. Otherwise nothing else works. I don't get a lot of sleep haha and I...
    sfausett33 sfausett33 18-21, F 2 Responses Mar 25

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    It's 3AM and I have school at 9:30am. I'm not even tired. There should be more than 24 hours in a day...it's just not enough. My body is wide wake at this time even with exercising...
    IllusionaryGentleman39 IllusionaryGentleman39 18-21, M Mar 25

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    I've had insomnia for a few years now. Usually would get to bed anywhere around midnight - 3am. But the past several months it's been worse then usual. I'm now up till 6-10 am...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Mar 27

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    I have insomnia everyday since more than months now I'm tired of this because of my depression
    emmadarko emmadarko 22-25, F 2 Responses Mar 27

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    I wish people would stop confusing "My body doesn't have the chemical ability to make myself feel tired" and "I can't get off my phone so I must be an insomniac, right?".
    RawrrItsAlexa RawrrItsAlexa 18-21, F 1 Response Mar 27

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    I've been diagnosed with Insomnia and low-grade depression. I cant seem to sleep anymore without taking sleeping pills. Its difficult. I do have someone I like that I talk to on a...
    Skin0Man1 Skin0Man1 18-21, M 1 Response Apr 3

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    I really wish I knew my cause for insomnia.. It could be a mixture of things.. But I'm tired of it. I'm literally laying in my bed, all comfy, tired to the point where I should be...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Apr 4

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    I am a chronic insomniac and have not had a natural good nights sleep in years .When I get really wiped out and literally feel really ill due to lack of sleep I get a weeks worth...
    nakednudist nakednudist 46-50, M Apr 7

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    I was recently diagnosed with this disease.It is so frustrating to see doctors not having knowledge and more than that their unwillingness to help.It all started last yr in July...
    me317 me317 36-40, F 5 days ago

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     My insomnia is back. Last few month I have been I up at: 3:40 am/ 4:00 am/ 4:00 am/ 2:00 am/ 2:00 am...I'm tired and exhausted. My heart is hurting, but what scares me the...
    WisePearls WisePearls 36-40, F 3 Responses 1 day ago

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    I thought it was just migraine which used to cause pain at the back of my head.. My arms used to feel so lifeless at times.. And when i went to see my doctor, I finally got to know...
    TheLivingDead TheLivingDead 18-21, F 2 Responses Mar 23

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    More than once. The first time was in the Southwest, I was protecting the construction of a small power plant. The local authorities made us work unarmed, so as not to provoke the...
    wuzgnu wuzgnu 61-65, M 3 days ago

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    Urgh... Awake at 4am for no reason.. My body just said NOPE! No sleep for you -.- In high school that was sort of acceptable, I could deal with that... But the fact that I have a...
    Catho Catho 18-21, F 2 Responses Mar 23

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    So I got a new pair of earphones. So nervous to test them I haven't taken them out of the packaging...
    1lonelydaisy 1lonelydaisy 41-45 2 Responses Mar 26

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    anyone skype? i struggle to spend night everyday.. my insomnia is horiible.. if i can talk to people bit..that helps me...anyone availble talk on skype now? PM me
    Juri0902 Juri0902 31-35, F 1 Response Mar 27

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    I sleep technically 3-4 hours if I am lucky. Last night and today after a conversation, I kept falling asleep, I world have terrible dreams abt people whom I truly love and cherish...
    Orchidspetals Orchidspetals 36-40, F 2 Responses Mar 28

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    Over the last few weeks I have been unable to sleep to the point now I'll be happy if I can get one hour of sleep each night. I have been experiencing pain in my upper right side...
    insomniacc insomniacc 18-21, F Mar 28

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    16524 peoples joined this community including me. it will turn 1am soon. hmm..Should i eat something to fill my empty space of my heart? i don't know.. movie?No..i don't have...
    Juri0902 Juri0902 31-35, F Mar 29

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    Always have. What's scary are the ones that were like previews of the next few days. The setting is usually off. Two in particular stand out. The first I was driving to school...
    mellymel22 mellymel22 31-35, F 2 Responses Mar 29

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    As a kid, every now and then I remember getting pain in my chest and throwing up bile. My parents always told me that I probably swallowed improperly. I went travelling for awhile...
    K032991 K032991 22-25, F Mar 29

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    I haven't slept for two sleeps now, I need someone to tell me corny jokes or something, I need to laugh...
    insomniastrikes insomniastrikes 16-17, F 1 Response Mar 30

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    If the prospect of sleep was a possibility I probably would never have found this website or other random things. It's two am where I live... And I feel energized. It's good to...
    Knifeaddict Knifeaddict 18-21, F 1 Response Apr 1

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    I used to go by this when I used to work, and I think I got to reinstate it to cope with my insomnia.
    Demosteen Demosteen 36-40, M Apr 1

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    Post onset, complex PTSD to be exact. It comes from when I was a kid. I was adopted by my grandparents whom were pretty much every type of abusive as it gets. I'm pretty much a...
    mentalbrix mentalbrix 31-35, M 1 Response Apr 2

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    Yeah. I sometimes lay in bed all night tossing and turning. I'll be so tired but for some reason I just can't get to sleep. It usually lasts a couple of days then I literally crash...
    EarthWalkerMan EarthWalkerMan 31-35, M 1 Response Apr 4

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    i get in bed around 10,since I have college at 8,so I have to be up at 7,I lie in bed till probably 3,just staring at the ceiling,tossing,turning,& looking at my phone as time...
    lifelesspie lifelesspie 18-21, F Apr 5

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    The majority of time it takes me at least two hours to actually get to sleep. I'll feel tired and ready for sleep, but I am unable to drift off straight away. In that time, And not...
    deleted deleted 26-30 Apr 7

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    I really don't understand what the hell is going on... I've been doing so well with my anxiety, it's been pretty much non existent these past 2 months. I've had a little bit of...
    tvdlover1865 tvdlover1865 18-21, F 1 Response Apr 7

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    It really sucks when your sleeping patterns are so much different then your SO's... My boyfriend and I are so different when it comes to sleep. He gets too much sleep, and I don't...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Apr 9

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    After 24 weeks of Sovaldi/Ribavirin treatment and another 6 months post-treatment, I was given a "cured" letter from my GI doc. I'm at the beginnings of stage 4 fibrosis...
    ExHepCinTX ExHepCinTX 46-50, M Apr 12

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    I'm a frequent insomniac and often can't stay awake in school.
    TheSadLoner TheSadLoner 13-15, M 2 Responses Apr 12

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    Insomnia again... Jeez brain please calm down a little, there's no arms race here in bed.
    potionsmistress potionsmistress 26-30, F 4 Responses a week ago

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    Can't sleep tonight. Been up since 4 today. I usually don't have trouble falling asleep. More staying asleep. Not tonight though. :/
    MrStardust MrStardust 31-35, M 6 days ago

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    5.24am and I've had very little sleep yet I have to be up for work in a few hours.
    Scaroth Scaroth 22-25, M 1 Response 5 days ago

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    So anyway, there's a "Fakebook" fad of listing the things you are "grateful" for in your life. BS!!!. What it actually is is "I am showing off my perfect amaaaazing life/kids/house...
    Blondiex15 Blondiex15 36-40, F 26 Responses 4 days ago

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    I don't tell many people, but I'm terrified of the ocean. Ever since I was a child I've had this recurring nightmare in which I'm stuck in the bottom of the sea, surrounded by who...
    kingofmonroeville kingofmonroeville 18-21, M 1 Response 4 days ago

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    Every night she lies awake Blaming insomnia. But it's her troubled thoughts That keep her restless. Wondering if she will ever Find piece with her mind.
    RedThatDescribesMe RedThatDescribesMe 18-21, F 1 Response 3 days ago

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    tonight i broke down and cried because its been so hard to sleep. i was so so lucky to have my babe there holding me though...
    kinkystapler kinkystapler 18-21, F 1 Response 2 days ago

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    I wonder if I didn't have night terrors every freakin night then I wouldn't have insomnia because I wouldn't be scared to sleep ??
    SolitaryElf SolitaryElf 41-45, F 2 Responses 1 day ago

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