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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 suffered for my entire life. I never learned to self soothe. I have tried the following prescriptions: Trazodone Ambien Restoril Lunesta Tylenol pm Benedryl You name it...
    saviscool saviscool 22-25, F 1 Response Jun 23

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    I wish I could sleep. When I was a teenager, I had severe insomnia. I wouldn't sleep for four nights and be up five days. It's horrid and the hallucinations were terrifying. Now...
    DulceMuerte DulceMuerte 26-30, F 3 Responses Jul 7

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    Sometimes, I get positive things from insomnia. Others, not so much. For example, not sleeping and then having three hours of intense cardio conditioning for tennis the next day...
    MissUbiquitous MissUbiquitous 16-17, F Jun 28

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    I have insomnia and can't sleep. Them again that's apparent since I have INSOMNIA. duh, I feel kinda stupid. I am starting to get used to it and I can stay awake until 4 in the...
    Firtreegirl Firtreegirl 13-15, F 3 Responses 5 days ago

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    Someone lease cure my bordem of insomnia. Soo bored of it! On top of that I am bored lol!
    Bhavika18 Bhavika18 18-21, F 1 Response Jun 23

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    Oh insomnia... Did you know you suck? It's 2 AM I just wanna sleep. Can you let me do that? It was be just wonderful. :)
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 2 Responses Jun 24

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    I am abit of an insomniac. On tonight is one of those nights where I can't sleep at all!!
    HiIAmHana HiIAmHana 18-21, F 1 Response Jun 25

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    I'm an insomniac. I want a good nights sleep for once
    KylieLaine KylieLaine 18-21, F 1 Response 2 days ago

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    It's pretty much every night of this, and it drives me insane. I will go to bed and next thing I know I'm up an hour or two later, and the cycle just keeps repeating. I can't help...
    dyingalittleinside97 dyingalittleinside97 16-17, F Jun 23

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    I have horrible insomnia. I just don't sleep; I have been on medication to sleep since I was 3 and before that my birth mom had to drug me and put alcohol in my bottles to get me...
    katcard katcard 18-21, F 3 Responses Jun 28

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    So i don't believe I am a full insomniac. I have to force my mind to let me sleep then I still don't get a truly restful sleep. I can sleep eight hours a night every night and...
    fallenzero fallenzero 22-25, M 2 Responses Jun 30

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    I stay up late. I can't sleep well. i have this insomnia since i was 12.
    RubyR21 RubyR21 18-21, F 3 Responses Jul 6

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    And the insomnia hits hard again, wide awake. Last night fell asleep around 4 am. I have to be up today at 6:30 am. So I really hope I can get some sleep. :/ I took some melatonin...
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F Jul 9

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    I used to shower with my older cousin. She's right years older than me and I don't know why I was so fond of her. It's become familial love now
    Kimbahbay Kimbahbay 16-17, F 2 Responses Jul 14

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    Any fellow insomniacs out there? Preferably Canadian? Or teens? :p
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 7 Responses 6 days ago

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    I have insomnia, it's 4:57am right now and my alarm is set for 5:30. I haven't gotten any sleep yet tonight, it's not from a lack of trying, I've been trying to get to sleep all...
    misspaperwait misspaperwait 22-25, F 2 Responses 4 days ago

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    It's pretty bad sometimes. I'm afraid of taking too much medication because of my insomnia.
    SaraRose0616 SaraRose0616 16-17, F 1 Response 4 days ago

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    My insomnia ok not 2 bad. I'm mostly kept up because my mind is loud at night. I think way 2 much and I over think things. I hate it
    hennyforyourthoughts hennyforyourthoughts 18-21, F 4 days ago

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    Hyperthyroidism, especially when it is misdiagnosed or let to run rampant, is a very dark disease. It really messes with your mind and when you combine it with the incredible...
    hcafaculty hcafaculty 46-50, M 1 Response 1 day ago

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    I was diagnosed with chronic insomnia at the age of 13. The longest I have gone without sleep is 6 days, I was 16. On day 6 I was taken to the ER and my parents were told that they...
    TryingToLoveLifeNow TryingToLoveLifeNow 18-21, F Jul 4

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    and i wish people would stop assuming that: i will be thin i will starve myself i throw up i'm shallow i have no idea of the consequences of what i'm doing to myself i count...
    Skirefly Skirefly 13-15, F 4 Responses Jun 23

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    What pills are the best to overdose on that will cause fatality? Please only proper human like answers, and only over the counter drugs.
    lostunit lostunit 26-30, M 3 Responses Jul 5

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    I'm pretty maxed out on the loss/death abuse department. I used to abuse drugs pretty heavy. I got the habit from my family who gave me drugs for the first time when I was 9 yrs...
    OutcastBlacksheep OutcastBlacksheep 36-40, F 2 days ago

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    I hate my insomnia. Had it all my life. Since infancy according to my mom. Why is it so much to ask just to be able to sleep?! Despite the nightmares I have every night... I still...
    StormTheVixen StormTheVixen 26-30, F Jun 24

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    This will be the fifth night I haven't slept. For awhile I was sleeping okay... But now I only get like 3-5 hrs of sleep and if I am lucky enough to even get those hours of bliss I...
    laultman78 laultman78 13-15, F 3 Responses Jun 25

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    Okay I know I posted something under this topic, but it's true. Especially when I have a lot on my mind. Everything just seems to be so confusing lately, and I feel like I can't...
    dyingalittleinside97 dyingalittleinside97 16-17, F Jun 25

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    It's hard for me to fall asleep sometimes and I ended being up half the night and it's awful when I have school fall asleep around 12 or 2 wake up at 5 or 6
    Jasminehi Jasminehi 13-15, F Jun 25

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    Ever since moving to Israel I can't sleep well. I have more bad nights than good and I have anxiety surrounding sharing a bed so whenever I share a bed I am guaranteed 0 hours of...
    JennyLevy89 JennyLevy89 22-25, F 1 Response Jun 26

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    I suffer from insomnia, so I stay up for days and when I do sleep with by taking pills or naturally I always wake up in cold sweat and have a racing heart beat like I ran a...
    CastleFreak CastleFreak 26-30, F 1 Response Jun 30

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    I have several. I am sure we all do. I think I've grown to appreciate them. They remind me of my struggles, and also give me strength. But... This just may be my insomnia...
    NewShoes12 NewShoes12 26-30, M 1 Response Jun 30

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    Hello everyone, I am 73 and was diagnosed with PMR (pain in shoulders, thighs and buttocks) a month ago. My GP put me on 50mg prednisone for 2 weeks, then a specialist reduced it...
    bubamara25 bubamara25 70+, F Jun 30

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    Here are top 10 home remedies for Bipolar Disorder. 1. Fish Oil Fish oil rich in Omega 3 fatty acids is one of the few things that can help in the treatment of bipolar disorder...
    LovelyLilly13 LovelyLilly13 22-25, F Jul 3

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    I have not slept in 3 nights. and the 4th night is half way over.... I think I may be having some hallucinations too...
    gingerwhovian gingerwhovian 18-21, F 3 Responses Jul 4

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    I wish I could sleep more than my usual five of six hours, but I wake and if I try to go back to sleep I'll get a migraine style headache.So, I stay up until I really can't keep my...
    Paca24 Paca24 18-21, F 3 Responses Jul 8

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    i havent slept in more than 24 hours and im losing my mind here again. im soooo bored i could roll around on the floor doing nothing like i have been for the whole day damn
    Insomniac77 Insomniac77 16-17, M Jul 9

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    Just another night; a long, dragged out night. Over the past 2-3 weeks, the most sleep in one night I've had was 6 hours. My average is 2-4 hours. Why haven't i KO'd with tiredness...
    arandomleprechaun arandomleprechaun 18-21, M 2 Responses Jul 9

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    I was diagnosed with stage three adrenal fatigue in November, 2013, but I'm sure I lived with it for years. My doctor put me on 20 mg hydrocortisone. The AF resulted in many other...
    calmtoday calmtoday 46-50, F Jul 10

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    so i have really bad troubles with sleeping and i can never seem to get myself to sleep unless i take something so my parents are completely anti meds people they say that...
    idkhby idkhby 13-15, F 1 Response Jul 15

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    ...gosh I hate it so much. I want to sleep, I'm tired but I just can't sleep. The only sleeping pills are in my moms room and they don't really work that well. I only have...
    rottenroses rottenroses 16-17, F 1 Response 6 days ago

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    It rages on. Its 4:49am on the east coast and I have slept for a total 5 hr and 15 minutes since Sunday morning. All everyone ever says is try to stay positive but that has to be...
    Kman4You Kman4You 36-40, M 6 days ago

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    Yeah, it sucks. I also struggle with anxiety, and the sudden occurrence of the symptoms of HT last year amplified my anxiety to an extreme degree. Along with this, HT made me...
    mairesequin mairesequin 16-17, F 5 days ago

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    Insomnia is a ***** I just want to sleep
    sourpatchkid578 sourpatchkid578 22-25, F 1 Response 5 days ago

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    I can't sleep and I have work in 5 hours😭😒
    sashafiercexo sashafiercexo 16-17, F 3 days ago

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    I have issues sleeping between my mind never shutting off, nightmares, among other things. I take zzzqu ill sleep aid, I've taken melatonin, I used to take sleeping pills when I...
    ajrestless ajrestless 18-21, F 2 days ago

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    Weeeellll, you see I had this plan... To go to bed early tonight. I was tired around 9:30 and I really should have attempted to fall asleep. Instead I decided to stay awake and...
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 3 Responses 1 day ago

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    It's way past midnight, and I have a feeling it's going to be another sleepless night :(
    Santi0924 Santi0924 18-21, M 22 hrs ago