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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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    Related Experiences

    you know, when your mind is to excited to sleep? this happens before many trips; especially the ones that involve long car/plane rides. it's the worst... i had it last night. i had...
    hans13 hans13 51-55, F Aug 8

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    I take meds to help me sleep. Without them I am awake for like 2 or 3 days at night...and I get really moody. I have really bad insomnia.
    Rayven1997 Rayven1997 16-17, F Aug 1

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    Definitely more than "a bit" of an insomniac. If I'm lucky, I can get two or three hours of sleep a night. I think it's partially stress related, but even at low-stress times in my...
    Saerwyn Saerwyn 18-21, F 1 Response Aug 1

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    I had insomnia too, my social media accounts+stress made me insomnia 2years ago.. But hopefully im ok now, insomnia fighters can try shower with warm water before go to bed and...
    fauxlady fauxlady 22-25, F 2 Responses 6 days ago

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    I had insomnia for years. Many years. Nightss of no sleep came often. I took meds but they stopped working. I had anxiety about sleep. It took over my life. Now it's completely...
    eddiev73 eddiev73 41-45, M 2 Responses Jul 29

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    I was on vacation and had all of my sleeping meds stolen so i was stuck without any way to fall asleep. I didn't want to leave so I did a day's worth of research and put together...
    chadimus chadimus 36-40, M Jul 31

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    wow. my insomnia didnt act up last night!! i actually got sleep!! i got 10 hours of sleep instead of 3 or 4!!! im so excited! i could run a marathon!! i could do anything!! anyone...
    phobicnightmare phobicnightmare 13-15, F Aug 12

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    I recently purchased a book named "I Can't Sleep". This is a journal for passing the time when insomnia strikes and my brain is circling in on itself, cannibalizing the...
    IrisROE IrisROE 56-60, F Aug 19

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    I recently purchased a book named "I Can't Sleep". This is a journal for passing the time when insomnia strikes and my brain is circling in on itself, cannibalizing the...
    IrisROE IrisROE 56-60, F 1 Response Aug 20

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    How does having a 'few' sleepless night differ from having insomnia? How can you tell when it becomes more serious? Is insomnia something you get 'diagnosed' as??
    isatbytheocean isatbytheocean 18-21, F 1 Response a week ago

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    You may or may not have known... But if you know the reason for your insomnia and rectify it, you will be able to recover from insomnia.. based of personal experience... I slept...
    shanaiya24 shanaiya24 22-25, F 2 Responses Aug 20

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    oh Insomnia, thou hath me in its clutches once more. 4:40am.. FML
    fuckitol fuckitol 22-25, F 2 Responses Aug 13

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    I'm trying to deal with insomnia not every night but close to it, im reading the sleep book by dr guy meadows, and my doctor has advised me to try CBT does anyone know if this...
    keenan01 keenan01 41-45, F 2 Responses Jul 30

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    Five dam nights in a row. I had posted a post under here befor you may wish to read first if you can find including the you comments for a better idea about my insomnia. Well...
    fallenzero fallenzero 22-25, M Aug 6

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    Ok moms, We all know TOO well the SUPER CLOSE bond we share with our soul mates/sons but do we think there is a prejudice against dads having a sexual relationship with their boyz...
    rollingbi rollingbi 36-40, F 4 Responses Aug 8

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    I guess something's are just hard wired, seriously it's my final days of my summer vacation. All I ask for is relaxation, nothing more. But no, my mother who promised to help me...
    MultipleRex MultipleRex 16-17, M 1 Response Aug 13

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    At 12 I started to notice a mood and personality change and have chalked up my sadness, mood swings, lack of interest, and inconsistent insomnia to near comatose states to being a...
    Bobbyckat Bobbyckat 18-21, F 1 Response Aug 15

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    My insomnia is back...!! It's been nearly a week since I slept well.... Feeling really frustrated...!!
    shanaiya24 shanaiya24 22-25, F 3 Responses Aug 16

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    Insomnia is truly ruining my life :( I can't function I'm so sleepy and tired all of the time but I can't sleep at all ! Someone please help !!!!!!!!
    ArmaniTsunami ArmaniTsunami 18-21, M 1 Response Aug 18

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    Since I couldn't sleep the whole night, I ended up doing my CIP project.. Should I be proud of myself or feel ****** about myself...! This insomnia is hitting me hard *depressed...
    shanaiya24 shanaiya24 22-25, F Aug 18

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    maybe i have insomnia or maybe it's just my wifi.
    queentheresa queentheresa 13-15, F 3 Responses Aug 19

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    What's the difference between insomnia and just not being able to fall asleep?
    akaShaun akaShaun 16-17, M 4 Responses Aug 20

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    So my sleep schedule is always messed up and last night I FINALLY THOUGHT I could fix it. I was exhausted from the lack of sleep the night before and was ready to finally sleep at...
    akaShaun akaShaun 16-17, M 1 Response 5 days ago

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    A seventeen year old should not be suffering; Insomnia Sleep paralyses, at night. Morning anxiety. Social anxiety. I need some help because no one here seems to understand...
    1Lostcause 1Lostcause 16-17, T 1 Response 3 hrs ago

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    I started daydreaming when I was really young, I was about four maybe five. My best friend and I used to watch a show together and we'd act it out, and make up our own scenarios...
    MaladaptiveDayDreamer MaladaptiveDayDreamer 13-15, F 1 Response 10 hrs ago

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    Film Noir  I'd love to be in a film noir. It's such a sexy, suspenseful genre, and I like watching well-made films full of intrigue and sultry characters.How fun would it be...
    livelaughlovedream3 livelaughlovedream3 41-45, F 4 Responses 5 days ago

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    Hi guys, im that guy who writes violent story's of what happend in my life. Why do I write these experience? My life IS violence, not a good town, not a lot of enforcement on the...
    Blast9003lawl Blast9003lawl 16-17, M Aug 14

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    Blimey, hard writing this down. January 2012 i left to go to work. Cold wet and windy winters morning. I remember driving down the road, then turning left at the traffic lights...
    hovisandhispad hovisandhispad 46-50, M 2 Responses 4 days ago

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    I haven't slept properly in the past three years. If I get two hours of sleep, I'm perfectly fine for the whole day. I'm not a night sleeper. I take naps when I get home. I just...
    sanfrabay sanfrabay 16-17, F Jul 29

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    The days seem to have blended over themselves, givin way to a sunken ship in a leaden puddle, and hopelessly passed me by.And while I'm physically I'll rested, I've descended into...
    s0undgarden s0undgarden 16-17, M Jul 31

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    2 am here can't sleep...I have to go to work for a 24 shift....I feel so tired just can't sleep, it's frustrating ....
    ffdp84 ffdp84 26-30, F 3 Responses Jul 31

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    Any suggestions? I sometimes suffer from insomnia...does anyone have any suggestions for how to deal with it...?
    deleted deleted 26-30 3 Responses Aug 3

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    I was diagnosed when I was like 6 but I didn't get treatment until I was 15. I take Vyvanse and I'll be switching to Adderall XR soon. Its a double edged sword. These meds do help...
    blake000048 blake000048 18-21, M 3 Responses Aug 7

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    Sometimes, I just can't sleep. I can go the whole day without sleeping. I also don't get enough sleep. It don't like this because I feel tired and nervous the whole day. Things are...
    deleted deleted 26-30 Aug 8

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    I am making a prognosis as a patient and I want to be tested for the AACh antibodies. Thymoma is abnormal growth of the thymus and is strongly correlated with MFC in the recent...
    RiderVictori RiderVictori 31-35, T Aug 9

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    The worst part of being an insomniac is having to eat spiders while I'm awake to maintain my yearly average.
    AgentSickler AgentSickler 18-21, M 8 Responses Aug 17

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    For the past week or so, I have been unable to sleep; I'm not even tired. I cleaned my whole room over the course of two nights. It seems like a bad thing, but I actually think it...
    ethanicus ethanicus 13-15, M Aug 17

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    The WorstI am so spent. I cannot wait to enter the sanctuary of my dreams. I lie in the cool darkness concentrating on my breathing. It's serene. It's comforting. My bed is my...
    SwanSongRebeL SwanSongRebeL 36-40, F 2 Responses Aug 18

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    Agnostic dyslexic insomniacs lie awake all night wondering if there is a dog
    Dantescircle Dantescircle 36-40, M 2 Responses Aug 18

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    The silver sword of morning piercing through my window frame. It's light now skipping round my room , its driving me insane. With eyes closed tight, this lights now dancing on my...
    lloyds123 lloyds123 46-50, M 1 Response Aug 19

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    I haven't been able to sleep at all basically for the past 3 months, every time I try to the same memory pops into my head and no matter how hard I try, I can't suppress it...
    Lanigga14 Lanigga14 13-15, F Aug 20

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    Seven years of sleep disturbed nights. Seven years of trouble staying asleep. I don't really know what it is that disturbs my sleep. I get very vivid and Dejavu dreams, which wake...
    Lecuyer90 Lecuyer90 22-25, F 2 Responses Aug 20

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    Lately, it's been a problem. I just really envy people who can immediately go to sleep the moment they jump into their bed but not me. If I'm lucky, it'll take at least an hour. If...
    Seiraxoxo Seiraxoxo 18-21, F 1 Response 3 days ago

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    I can't sleep til 4-6 am and still wake up early and it's easy for me to have(accidental) all nighters and Im tired even if I do actually sleep a full 8 hours, and I'm exhausted a...
    rulahasan rulahasan 13-15, F 3 days ago

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    I have a young child with cerebral palsy so I have to be awake and alert all day, but I never get to sleep before 3am. I'm always so exhausted :( I don't like to take the...
    Coraltorch Coraltorch 26-30, F 1 Response 2 days ago

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    I wish I could get to sleep before 2 am! Especially when I know I have a busy day the next day! The other night I was almost falling asleep watch telly, so I went to bed, but...
    Woolybabe Woolybabe 41-45, F 1 day ago

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