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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

    I have the worst insomnia anyone has heard of, I literally sleep maybe an hour a night been going on for 4 and a half years.....any suggestions, please help
    eifeltower eifeltower 41-45 3 Responses Mar 21

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    Well hello people of ep, fello insomniacs. As the title says, i have insomnia. Its only 1am here an i havent had a very good day so trying to calm my mind so i can sleep is quite...
    Lonelyboy984 Lonelyboy984 18-21, M 1 Response Mar 23

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    Starting to think it's not insomnia... I think it's just that I am on my phone allllllllll night.
    irishp irishp 22-25, F 2 Responses Mar 27

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    Every weekend i get this bad insomnia i can't sleep at night only on weekends days idk why but i hate it P.S. : thanks god i sleep early on regular days
    Nn60vlog Nn60vlog 26-30, F 1 Response Mar 27

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    Last night was absolutely awful. I couldn't sleep. I felt detached from my body, like I was two places at the same time. It's a difficult phenomena to describe. My physical body I...
    PinkMellow PinkMellow 18-21, F 1 Response Mar 30

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    Another sleepless night, I just feel like crying, it's so frustrating. I waited for sleep for almost 8 hours and after I finally fell asleep for 10 minutes a bird started making...
    AmnesiacAlien AmnesiacAlien 26-30 1 Response a week ago

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    I have insomnia really bad and I'm hoping to find some ppl to talk to at night cause none of my current friends are up so late. So if you wana be friends message me! :)
    Pikagirl5 Pikagirl5 18-21, F 3 Responses Mar 23

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    One of the worst things about insomnia: When you go to school and you feel like **** for the entire day because you haven't had any sleep.
    Pfchangbitches Pfchangbitches 36-40, M Mar 24

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    Today I woke at 1:30 pm my insomnia kept me awake till 7:45am or the coffee I drink all day just trying to get enough energy to start day today it did not happen still laying down...
    Winger302 Winger302 51-55, F 1 Response Mar 24

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    I know I have insomnia, because I never sleep, I wake up several times in the middle of the night and can't go back to sleep again, and I wake up really early and when I wake up I...
    NinjaRose NinjaRose 13-15, F 1 Response Mar 25

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    I have sleep apnea as well and have had insomnia most if my life. I take Benadryl at nite to help me fall asleep and it helps me tremendously. I recommend taking 2 at nite and you...
    denaellis575 denaellis575 46-50, F 2 Responses Mar 26

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    I don't really know if I suffer from insomnia cos I haven't been diagnosed by a doctor. But is really hard for me to fall asleep. I do sleep but always so late and I wake up early...
    Pwolf Pwolf 26-30, M 1 Response Mar 27

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    Ok im almost positive i have insomnia now. Last night i went to bed and i just could not sleep. No matter what i did i couldnt fall alseep. I did manage to get to sleep at 4am. So...
    LizWasNotHere LizWasNotHere 13-15, F 2 Responses Apr 1

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    For almost a year now I have been insomniac. It comes in periods of three weeks, more or less, where I literally can't sleep at all. Then throughout the day, I feel exhausted. I...
    lshidonil lshidonil 16-17, F Apr 2

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    I've had it since I was 8. Its familial. Typically its been VERY easy to control with medicine. I had a string of seizures a few months ago but its whatever. I've always thought of...
    ChloeCat19 ChloeCat19 18-21, F 2 Responses 4 days ago

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    Insomnia plagues my nights almost every night since my break up. I have tried everything like counting sheep, pills, and music. Nothing seem to help me. I run on usually 2 hours of...
    Leavinstevin Leavinstevin 41-45, M 3 Responses 4 days ago

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    I'm 38 and I recently had a craniotomy for a colloid cyst. On Feb 19th of this year I had a headache so bad that I couldn't open my eyes and it made me sick to my stomach. I had...
    survivor2014 survivor2014 36-40, F Apr 11

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    I've given up on trying to fix this. It has been years since I had good Sleep without drugs. I try to make the best of it. Some of the thoughts I have are useful, so I try to...
    rocks49 rocks49 51-55, M 1 Response Mar 25

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    Probably because I'm so depressed... Or maybe it has something to do with the fact that every time I close my eyes I have flashbacks of the worst days of my life and start to panic...
    hypnoticz hypnoticz 18-21, F 2 Responses Apr 9

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    Sleep schedule is all messed up now because I was up til 6 am doing absolutely nothing. I slept 6 hours and have to be to work soon. I'll be home by 930 and have to be back at work...
    Madii144 Madii144 18-21 3 Responses Mar 21

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    I've had 4 panic attacks. Twice I was on a busy highway and out of no where I feel like I'm having a heart attack, while suffocating... some scary ****! At first I didn't...
    queediana82 queediana82 31-35, F Mar 22

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    Literally haven't gotten any good sleep in a month! I know what's causing it. Worrying about finances, work load doubled so I have a lot of pressure. I worry about situations...
    gymgirl71 gymgirl71 36-40, F 4 Responses Mar 22

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    Have gone weeks with only a few hours of sleep. Every night I cannot stop thinking and my mind will not shut down. I can be extremely exhausted but when I get into bed I'm wide...
    Tacoswag44 Tacoswag44 18-21, M 2 Responses Mar 23

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    I have never received treatment despite diagnosis from a psychiatrist; however through treatment and medication for anxiety, depression and insomnia, as well as a general...
    fromlighttodarkness fromlighttodarkness 16-17, F 1 Response Mar 24

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    Man it's really hard on me. I will lay in bed and not able to fall asleep. Right now I'm not even sleeping. I worry that if I go to sleep I will die or have nightmares. Idk
    acekercy acekercy 13-15, F 1 Response Mar 24

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    Well you know you have stayed up way too late when you get the infomercial on the testosterone hotline....but i can't sleep right now. Just highly impossible and I wish my body...
    Anarai Anarai 26-30, F 1 Response Mar 26

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    I suspect that I might have APD. I have been dealing with rashes and allergies for years that have been misdiagnosed. I've even been told that I have to be tested for ALL food...
    HelpMeInSC HelpMeInSC 31-35, F 2 Responses Mar 26

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    I was diagnosed with fibromyalgia two years ago, however, I've been thinking for a while that I may have lupus. The symptoms that make me think this are: - rash/redness across...
    LouiseLondon LouiseLondon 31-35, F Mar 26

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    I find my biggest confliction with my eating disorder is my weed habit. I smoke pot for my insomnia/depression and I love it. I was on a whole bunch of meds that made me feel...
    FarrahRelates FarrahRelates 18-21, F 1 Response Mar 26

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    It's starting to have a negative affect on my life. Well, it always has. It's been a while since I first had the symptoms, but I've recently found that melatonin helps a lot, but I...
    faeriefate faeriefate 18-21 2 Responses Mar 30

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    I can't sleep at night. I have resorted to drugs. I have tried zzz quil, benadryl, flu medicines and finally settled on Tylenol PM which makes me ridiculously groggy the next day...
    shoxic shoxic 22-25, F 1 Response Mar 31

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    I've suddenly become afraid of the dark again. Literally all first semester I had NO issue with sleeping with the lights off. This semester I can't do it. I don't know why...
    PinkMellow PinkMellow 18-21, F 2 Responses Mar 31

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    I suffer from insomnia because when I get stressed or have too much going on, I can't relax. Really sucks sometimes!
    bluebutterfly13 bluebutterfly13 36-40, F 3 Responses Apr 1

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    Ok so my story of mercury poisoning has been my entire lifes experience, and is still affecting me to this day. I just really wanted to connect with others who share this story so...
    awakekiwi awakekiwi 41-45, M 1 Response Apr 2

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    I think I might have insomnia but idk. I think it's just me thinking about the next day,and worrying about it. Also 1D! -SG
    StRiKiNgEEk StRiKiNgEEk 18-21, F Apr 5

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    Ok probably more than a bit? Ever since my boyfriend and I broke up I have had a hard time going to bed when I get tired. I know the reasons and am trying each day to be aware that...
    Goodbadladywoman Goodbadladywoman 26-30, F Apr 6

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    I fell asleep without taking anything, which is great, but it means I don't stay asleep. Which sucks. About an hour ago, I was in the in between "do I take it now" phase. Now, it...
    thislittlejourney thislittlejourney 26-30, F 2 Responses Apr 10

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    I've been working in night shift for 4 years now, I have minor insomnia, sometimes I sleep after 42 hrs, once I was awake for 56 hours at stretch. I wonder if I am a human anymore
    Aazim Aazim 18-21, M 1 Response Apr 13

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    I will go till my body shuts down. I have removed all caffeine from my diet, I exercise, and eat a well balanced diet. I have been on every sleeping aid under the sun but they...
    Punkrocky Punkrocky 18-21, F 1 Response Apr 13

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    hi every one, i was so desperate that i decided to share my story here with u,tnx for reading. i am 24 ,married.my husband was my classmate n we married after we" fell in love...
    fereni fereni 22-25, F 1 Response 6 days ago

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    Feeling down this morning. Have really been struggling with my anxiety the past few weeks.. Granted I'm almost to final exams week so things are always more stressful.. But I just...
    Anxiousgirl13 Anxiousgirl13 18-21, F 1 Response 2 hrs ago

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    This may sound a wee bit silly to a lot of fokes. I have a best friend, he is 11 years old, he is very comforting to me. he does not question me, he likes to sleep on my clothes...
    flyingangel7 flyingangel7 46-50, F 9 hrs ago

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    My family was more involved with making people believe we lived some perfect or amazing life but reality...it was all a show. Now, in comparison to others experiences i had it...
    bandelt7 bandelt7 26-30, F 2 Responses 8 hrs ago

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    They say some girls you take home to mom, some girls you just take home. I'm 45 and have never gotten a marriage proposal. I finally put a "Do not disturb" sign on my pu**y and...
    sacredfire222 sacredfire222 41-45 2 Responses 6 hrs ago

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    So I guess it mostly all started when my best friend unexpectedly passed. We were fourteen. From then on it was just downhill. I still had my initial group of friends throughout...
    PassionEarth9 PassionEarth9 22-25, F 1 Response 56 mins ago

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    What should I do!? I really want a baby, I'm nearly 14.. I've always wanted one and I know what I would go through with it. I look after my nephew nearly every week since he was...
    jesshobson jesshobson 13-15, F 2 Responses 39 mins ago

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    what is the best medicine for pmc ? is it diamox. do we have have to take diamox for the rest of our life?
    jkt2014 jkt2014 26-30, M 7 hrs ago

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    I have decided to just live a happy life being a good person. There are so many things that I have to be thankful for & I do feel blessed
    PyjamaCat PyjamaCat 36-40, F 2 Responses 6 hrs ago

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    I had a strange dream that I got an email from a girl I had fallen out with a year or so ago. We haven't spoken since so I thought it was weird I had a dream she emailed me. So the...
    katwilliams87 katwilliams87 26-30, F 5 hrs ago

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