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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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    Wow 6:51 am and havent slept yet ... Im gunna sleep for 5 hours and try get back on normal schedule. I hate living like this.
    fAdEDNAtiVe99 fAdEDNAtiVe99 13-15, M 1 Response 12 hrs ago

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    How I Moved Beyond Insomnia by Jennifer Jackson, The Mind-Body Coach www.beyondinsomnia.com We all know people who can sleep like a rock no matter what. I have never been one of...
    beyondinsomnia beyondinsomnia 46-50, F 1 Response Dec 4

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    Ever since i was little ive had night terrors and insomnia. night terrors have stopped but the insomnia hasnt
    imagination34 imagination34 16-17, M Dec 6

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    Insomnia sucks!!!!! I have a twin brother and he never gets it. He falls asleep within 5 minutes of saying goodnight. And it's not like he doesn't think as much. He's smarter than...
    Tasha15Girl Tasha15Girl 13-15, F Nov 18

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    To those who tells me to stay off internet and stop playing video games. And other stuff like "stop smoking and drinking". Even if I'm off internet–note: I'm not addicted to...
    TigressRaging TigressRaging 16-17, F Nov 19

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    omg I hate being an insomniac. I want to be able to talk to people when I can't sleep but it's hard cause not everyone's on that no sleep kinda page.
    omgeezus omgeezus 26-30, F 2 Responses Nov 20

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    I don't think I'm an actual insomniac though I don't really get tired until 12 in the morning. I think it mostly has to do with the amount of technology I have in my room, such...
    Skuggington Skuggington 13-15, M Nov 20

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    Now I haven't been diagnosed with chronic insomnia, but I honestly feel this is ME. I guess it would help to exercise...if that was possible. I'm also very obese. But it's not...
    1lonelydaisy 1lonelydaisy 41-45 Nov 20

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    And it Isn't much fun. It's not like I can just go downstairs and play the piano or play violin or guitar in my room. I can't practise martial arts, I can't really go out for a...
    Tasha15Girl Tasha15Girl 13-15, F 4 Responses Nov 23

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    Time doesn't really matter with insomnia.. It's 5am but it doesn't feel like 5am..
    akaShaun akaShaun 16-17, M 1 Response Nov 24

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    I'm an insomniac. I hate that word. I am in denial. I think I like to stay up to make the day last longer. I sometimes do my best thinking at night - at least I think I do.
    tryingagainII tryingagainII 56-60, M 2 Responses Nov 24

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    Well, screw it. Are even the insomniacs asleep tonight? It doesn't seem like anyone is on. Must be the turkey.
    NoVADad703 NoVADad703 31-35, M Nov 28

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    I swear this is what stresses me out during the day and what's making me sick. I hate not being able to sleep. My fiance hates that I can't sleep but he can't do anything. I suffer...
    MarinesGirl94 MarinesGirl94 18-21, F 1 Response Dec 1

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    Nov 23, 2014 4am Oh,my look at the time, God it's 4 am, And I haven't even closed my eyes. What is wrong with me, Why do I not sleep? Is it the storm outside, Or the one raging...
    yonnie97 yonnie97 16-17, F 3 Responses Dec 3

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    A nap to a regular human being Is sleeping for us insomniacs.
    akaShaun akaShaun 16-17, M 1 Response Dec 5

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    When you wake up In the middle of the nigh, you KNOW you can't go back to sleep. Insomnia ******* sucks
    akaShaun akaShaun 16-17, M 2 Responses Dec 8

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    Insomnias a ***** just saying
    ninjacypher ninjacypher 13-15, M 1 Response Dec 8

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    And over the years my benzo dose has increased. Proportionate to my becoming more and more of a chronic insomniac. I will not blame this strong and dangerous drug for this...
    lunadelobos lunadelobos 41-45 a week ago

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    It's 5:00 am and I'm still up. Why, some may ask. Well it's a simple answer really. Insomnia takes over my life. Has for years and it's really taking an effect on me. No wonder I...
    MarinesGirl94 MarinesGirl94 18-21, F 1 Response 3 days ago

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    "This is how my personality always is Even if there’s no problem, **** em So I understand why you attack me They say to me, be a man, why you act like a *****" -Tablo "Some of y...
    cassxandra cassxandra 22-25, F Nov 28

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    Warning, this is long, but I feel as though I have to tell the full details of the story. Even if no one responds, I just need the catharsis of letting it all out for once...
    sketchit sketchit 26-30, F 1 Response Dec 9

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    Started using an app several years ago. Worked fine for about 2-3 years and then once I hit my adult years, It just wasn't as affective anymore. Now it barely works at all. But...
    1lonelydaisy 1lonelydaisy 41-45 1 Response Nov 20

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    I think my sleep issues started when I was 18. That's when I started using that app and then I couldn't go without it. Without it I wouldn't have made it through a time in my life...
    1lonelydaisy 1lonelydaisy 41-45 Nov 20

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    and i ******* hate the hours. i hate going in late night n being there til the sun comes up. i guess the only good thing tho is that it gives me time to think about **** since its...
    LightSparks LightSparks 26-30, M 2 Responses Nov 24

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    When will I ever sleep again? Thinking about taking pills but have bad side effects. I don't know what to do and how to cope up with this.
    MaryJay712 MaryJay712 16-17, F 2 Responses Nov 25

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    I suppose I could call it insomnia. It has been both productive and destructive in my life. I can remember as a child having great difficulty sleeping. When I discovered books I...
    TunnelofTrees TunnelofTrees 36-40, M Nov 28

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    i get so much anxiety ive had insomnia for years. its 3am now, i WAS talking to my idiot ex for a bit again! but ... everyone i love begs me not to. he was crazy verbally...
    Jacqueline779 Jacqueline779 26-30, F 1 Response Nov 30

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    http://youtu.be/wwkKcqdrfGo Perfect example. Except I will get maybe 4-6 hours sleep in two days. I've been ok for the past few days. Been able to sleep about 10 hours each day...
    1lonelydaisy 1lonelydaisy 41-45 1 Response Dec 1

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    Somewhere there must be an atheist dyslexic insomniac lying awake and wondering if there is a dog.
    LOMD LOMD 31-35, M 7 Responses Dec 3

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    Why is it when you can't sleep and tired as hell you can't and when you have all the time in the world you can't seem to get any sleep? Bored and sleepless out of my mind!
    deucegirl19 deucegirl19 18-21, F 1 Response Dec 3

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    So I have been noticing me not being about to stay asleep for one full night, no matter what time I fall asleep I still wake up through out the night! :( I have noticed the past...
    advicegiver01 advicegiver01 18-21, F 1 Response Dec 6

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    I developed Complex PTSD caused by 25+ years of aggressive Hostile Work Environment working for Salt Lake City Corporation Department of Public Utilities. I brought to the...
    Kassarole Kassarole 46-50, F 1 Response Dec 6

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    I used to get up and go for a 2km run (my kids say crawl) first thing in the morning. It used to wake me up and really have me in top form for the rest of the day. I love the...
    AthenaJones AthenaJones 36-40, F 5 Responses Dec 8

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    I am still so angry. I don't know how to process these feelings and they are eroding my adult life, holding me back from being a successful person. Mental illness runs in my...
    momshelle momshelle 26-30, F Dec 9

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    UPDATE: I used the medication (muscle relaxant) for the first time last night. Oh man, it worked wonders! I had no neck spasms, no pain, no tremors, at all. I was able to sleep in...
    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 9

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    yep havent slept at alllllll tonight and its 6am hmmmmm. lol
    wickedlilangel69 wickedlilangel69 31-35, F 3 Responses 2 days ago

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    I want to enjoy my free time. I still want to be able to have my interests/hobbies, work( one day I'll be owning my own business), traveling, friends, maybe some volunteering. I...
    ajrestless ajrestless 22-25, F 2 days ago

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    I'm worried because I've had some terrible symptoms of what I think could be brain cancer, or something else seriously wrong. I don't know what to do. My doctor is an a** and my...
    1lonelydaisy 1lonelydaisy 41-45 3 Responses 1 day ago

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    I only average a max of 4 or 5 hours a sleep a night tips. I think it's all the cell phone frequencies and gadgets. JK. I think it spawas from working a second shift job for a few...
    OilDaddy OilDaddy 41-45, M 1 day ago

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    After experiencing extreme painful monthly periods for more than 10 years I have finally had a lasting solution done to relieve me of all that pain. Yes I finally agreed to a total...
    namgal namgal 46-50, F 1 Response 17 hrs ago

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    Mine are probably the worst of you all... I have panic attacks for 3 years now. Those 2 years it's gotten really bad. I can't walk out of my house alone anymore just because of...
    Catwomann Catwomann 18-21, F 6 Responses 13 hrs ago

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    Ok so here is everything I wanna do during winter, hence forth, My Winter Bucket List: 1. Decorate a Christmas Tree 2.Enjoy some homemade hot chocolate 3. Throw Confetti on New...
    SweetcakesJr SweetcakesJr 13-15, F 2 Responses 11 hrs ago

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    Hello everyone I was diagnosed with gastropareis in 2008. I had a gastric stimulator placed and it worked great for 5 years. The doctor then tested me with a gastric emptying scan...
    justwaiting5 justwaiting5 41-45, F 9 hrs ago

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