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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 been this way since I was a toddler. I've tried every treatment there is and the treatments are either ineffective or they are so powerful that the side-effects are worse...
    GlassBrainedDog GlassBrainedDog 36-40 2 Responses Jan 13

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    I take pills to override thoughts with sleep, but they've stopped working. I guess some people make insomnia out to be a quirk. A cute defect in a suburban girl who drank too much...
    girlinteruppted girlinteruppted 13-15, F 2 Responses a week ago

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    Ugh! Why? Oh! Why did my mother have to wake me up? Now i can't sleep! I'm trying to get on a sleeping schedule! If my insomnia will let me! Insomnia sucks! It like needs to go...
    WickedlilAngel WickedlilAngel 31-35, F 1 Response Jan 8

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    **** me. Another sleepless night. It wouldn't be so bad except that people come to me with their own bullshit when I have my own problems. "Can you give me a ride to work?" Yes...
    WearOutKyd WearOutKyd 26-30, M 2 Responses Jan 8

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    Hello, I am a journalist working on a feature story about living with insomnia. I would love to get in contact with someone who has insomnia to find out how it affects them and how...
    vanessagillis vanessagillis 22-25, F 1 Response 5 days ago

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    I've had insomnia for 3 days straight. I just can't sleep , if i do find sleep it only lasts for about 2 hours. :(((
    ADTRfan ADTRfan 16-17, F 1 Response Dec 31, 2014

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    Have to be up in 5 minutes. Haven't slept at all. Cheers insomnia 👌
    ZoAnnBow ZoAnnBow 16-17, F 4 Responses Jan 2

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    I used to go to bed and get up around the same time everyday. When my life changes so much so fast I get insomnia. I'm finally going to the doctor today. This isn't healthy.
    Jennerrous Jennerrous 36-40, F 2 Responses Jan 5

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    Oh insomnia, the mistress of my dreams, how foolish of me to think my daylight thoughts could cast even a shadow, over our Gothic conception.
    haloJMK haloJMK 26-30, F Jan 8

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    I have acute insomnia and it has really been ridiculous this past weekend. It's still an issue and it's technically Tuesday now. I was so wired earlier that you'd think I had been...
    Nyx1978 Nyx1978 36-40, F 5 Responses Jan 20

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    Why do I have insomnia? Is it the work? Peer pressure? My family? My friends? TELL MEEEE
    kiko17 kiko17 16-17, F 4 Responses Jan 21

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    WHO HAS INSOMNIA HANDS UP PLEASE
    kiko17 kiko17 16-17, F 5 Responses Jan 22

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    Hi I'm new and I want to vent?? so my name is Luna and I have been suffering with PTSD since I was 13 and insomnia and other things as well for a long time now. I have been...
    LunaMariee LunaMariee 18-21, F 2 Responses Jan 23

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    So complicated. Why do I have insomnia? I'm thinking about a lot, I'm thinking about things that have happened in my life, memories, the future, problems...I always feel stressed...
    Alysh7 Alysh7 18-21, F a week ago

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    I have had Insomnia sense I was a teen, but it has gotten worst! I have developed something called sleep paralysis! It's when your mind is restless and you cant sleep but your body...
    KleopatraK KleopatraK 26-30, F 6 days ago

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    Guns N Roses - November Rain***************************Well this is part of my list of "music to relax to".Sleep continues to elude me tonight.  At least last night I had SNL...
    IrisROE IrisROE 56-60, F 1 Response 5 days ago

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    After my aunt died, I challenged god, if you're real send me a sign. I grew up with a very religious non denominational baptist family but I had a hard time believing in god. July...
    tentyhime tentyhime 18-21, F Jan 1

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    I've lost someone dear to me. this happened awhile ago but I feel like I need to tell this story. I knew this girl her name was Christina and she was my very first girlfriend. we...
    Sladetgx57 Sladetgx57 18-21, M 2 Responses Jan 4

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    Now I need to push this off my chest. It's been almost 3 years or let's say , 2 years and something now. I had broken up with my ex after her ideals turned me off , just to name a...
    stephenrko stephenrko 31-35, M 1 Response Jan 9

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    There is nothing like watching the sunrise and realising you have gone through a whole night again without sleep.
    MysteryAbove MysteryAbove 70+ Dec 31, 2014

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    I have two New Year's resolutions. One: sleep more, stop being such and night owl and try to rid myself of insomnia. Two: be happy.
    existJenna existJenna 13-15, F Dec 31, 2014

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    I hate it. :( Sometimes I am up all night counting down hours I have to sleep until school. But I also don't fall asleep in class and sometimes I am not tired. I kinda wish I can...
    AlainaD2002 AlainaD2002 13-15, F 2 Responses Jan 2

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    As if being bi-polar and having insomnia wasn't enough, I've had to deal with chronic migraines since the age of seven. Yeah there's a good enough reason as to why they probably...
    PepsiPlunge PepsiPlunge 26-30, M 1 Response Jan 4

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    Recently, sleeping has been nonexistent for me. I'm not sure what is going on with my body, but my spring semester starts Thursday and I completely screwed if this insomnia is not...
    sumerlin sumerlin 18-21, F 2 Responses Jan 5

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    I seriously have a messed up sleeping schedule. I think I have insomnia :/ I can go days without sleeping & it gets me so frustrated haha
    ashleeyj5 ashleeyj5 13-15, F Jan 5

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    I have super bad periods...but only when I'm on birth control (which I am on constantly now). But this time, my period is worse than ever. I think it's because I was having...
    DarkCelestriaRose DarkCelestriaRose 16-17, F 1 Response Jan 6

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    It causes me to be really sleepy throughout the day, the worst parts are up until 10am, then from about 4pm-8 pm, my eyes really have trouble keeping open, even if I'm doing...
    existJenna existJenna 13-15, F 1 Response Jan 7

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    For the past week, I haven't been able to sleep. I'm wide awake at 230am 3am in the morning, not past 4am. But still it makes me sleepy during the day, so I catch up the next day...
    SentimentalMood SentimentalMood 36-40, F 1 Response Jan 7

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    The invisible illness. We suffer terrible symptoms that, though often aren't life threatening, greatly handicap us and begin to take control of our life. Yet to most people we...
    rbeccalynn rbeccalynn 18-21, F 3 Responses Jan 8

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    It is 4am right now and here I am watching crappy late night television and playing sims on my tablet - point 1 to insomnia ^?^
    TealTails TealTails 16-17, F 3 Responses Jan 8

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    Meet all of my personalities= Ale= respnsible fo all of my bad decisions Ace= respnsible for all of my good decisions Asher= the one that always tries to make everyone laugh Jae...
    chasetheweirdo8 chasetheweirdo8 13-15, M 2 Responses Jan 9

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    i have horrible sleeping problems. i used to had sleeping pills. but they won't work anymore. ..it really takes time to fall asleep. i also having iphone addiction!!! i need to...
    juryandrews juryandrews 31-35, F 1 Response Jan 10

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    I sustained a concussion a few weeks ago. It's been up and down since then. I have a headache every day...(ive NEVER had headaches prior to this)..a random day of vertigo here...
    Lcp20 Lcp20 26-30, F 1 Response Jan 10

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    My doctor instructed me to do as such if id see no effect. So I consumed 60mg of Strattera for 3 days, no effect, jumped to 120mg, no effect, continued with 120mg and 150mg...
    psychedelicblues psychedelicblues 18-21, F 1 Response Jan 10

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    What do you get if you cross an atheist, an insomniac and a dyslexic?
    jebjo jebjo 18-21, F 6 Responses Jan 11

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    10am and I still haven't slept.
    cnguyen138 cnguyen138 18-21, M Jan 11

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    I can't sleep either. I don't even feel tired. Since I don't have to get up early tomorrow, Lol I have given up on sleep and honestly am just trying to find some projects to make...
    smurf1691 smurf1691 22-25, F Jan 13

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    I was diagnosed on with what is lovingly called "EF", I see, on 1/8/2014. I am 46, Caucasian female, living in the Midwest, USA. I am not an athlete though I pretend I can...
    Kimbrulea Kimbrulea 46-50 1 Response Jan 13

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    I can never sleep on time either. I usually get in a mood and just start editing stuff or just game. Idk, I'll sleep at minimal hours before I have to wake up to go to school.
    Cloudsxarexcool Cloudsxarexcool 18-21, M Jan 14

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    I have insomnia from alcohol withdrawal. Night # 2. Here we go.
    poppysue15 poppysue15 41-45, F Jan 14

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    Not being able to sleep is like when you accidentally step on your pets tail and it like yelps in pain and then runs away from you. Then you go and run after your pet trying to...
    BringMePierceTheSirensAtSix BringMePierceTheSirensAtSix 16-17, F 1 Response Jan 15

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    Yeah I do.. And ADHD, anxiety, and insomnia. I don't know how anyone will ever love me with all this. I take 6 pills a day (2 at night, 1 midday, and 3 in the morning) it sucks...
    Gabrielaaaa99 Gabrielaaaa99 13-15, F Jan 16

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    Nightmares... It seems like i have nightmares every time i close my eyes and try to sleep. I have many sleepless nights because of them...i have become accustom to not sleeping...
    submissivelittlewoman submissivelittlewoman 41-45, F 6 Responses Jan 19

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    4:15 am I have a 12+ hour day ahead of me and I was supposed to be waking up in an hour.
    EchoWasNotMeantToBeSeen EchoWasNotMeantToBeSeen 26-30, F 2 Responses Jan 20

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