I Have Severe Idiopathic Hypersomnia

Personal Stories, Advice, and Support 197 People

    When we are assessing ourselves

    for how IH affects us and when we are communicating it to others it would be helpful to clearly separate and specify four different factors: 1) How it makes us feel physically (intensity of sleepiness, etc) 2) How it affects our abilities 3) How it makes us feel emotionally 4...
    HyperZombia HyperZombia
    41-45, M
    Jul 22, 2014

    Sleepy And Confused

    So, I am a 27 year old married Mother of 2. I was diegnosed with hypersomnia 9 months ago. I am pleased to have a diagnosis in the sense that its nice to know I am not lazy, or depressed, just honestly tired. I used to hide naps from my husband and Mother, my children were well...
    krobson333 krobson333
    26-30
    4 Responses Apr 16, 2012

    Hey guys. So I'm thinking of starting a website

    blog thing for people with sleeping disorders like us. I hope to make something that allows us to share tips and stories and lend some support. Is this a good idea? Is it worth the time and money? I feel like there are websites out there for everything but nothing specifically...
    LittleMsGreenEyes LittleMsGreenEyes
    18-21, F
    4 Responses Jan 30, 2014

    Losing My Life To My Need For Sleep....

    I sit here tonight on my second week of Nuvigil and I wonder if this is what "better" is supposed to be.... My sleep study isn't until next month. The Dr. wanted to start the meds now to take the edge off. My husband seems so happy to just have me awake during the day, but I...
    AreYouSleepy AreYouSleepy
    31-35, F
    3 Responses Jul 28, 2010

    This Day Is Like Anybody Else's.

    After I wake up from my average 12-16 hours sleep I walk to the couch and lay down for a quick nap before breakfast at 1pm. I try to have a goal each day. It's what keeps me going. Usually I can have all of that, take my Nuvigil, shower and look presentable before 4pm. Some days...
    whamo01 whamo01
    41-45, M
    11 Responses Nov 24, 2011

    Waiting For My Happy Ending

    I'm 22 years old, and have been dealing with hypersomnia since fall of 2008. I'm not sure when I developed it, up until that point I was taking a medication for bipolar disorder for four years that would essentially knock me out, so who knows how long it was masked. My doctor...
    geekyraven geekyraven
    22-25, F
    4 Responses May 14, 2012

    Got A Diagnosis - Hoping For Successful Treatment

    I was just diagnosed with severe idiopathic hypersomnia - and I have to admit - I didn't know something like this existed. Growing up I suffered from bouts of insomnia and would often nap because of that. I had (and seem to always have) a plethora of health problems so I always...
    Sleepystudent Sleepystudent
    26-30, F
    1 Response Oct 18, 2012

    Reality

    enslaved enchained ingrained in your mind a vision of comfort and ease you despise each day unrested from yesterday mind obscure, the day blurs indistinguishable from all days past and ahead beyond tired, expired you push on curse your fate, your keeper unyielding...
    HyperZombia HyperZombia
    41-45, M
    Oct 6, 2013

    This Can't Be My Life

    Hi.. I've been searching for a place like this since my diagnosis in Feb 2012. I'm a 32 years old Air Force vet, with one son. I'm at a complete loss as to what the heck I'm supposed to do now. The thought of living the rest of my life like this makes my thoughts very dark and it...
    mzlady504 mzlady504
    31-35, F
    Dec 15, 2012

    From Health To Hypersomnia

    I started to get sick in year 10. Slowly, at first, slowly and undetectably. I was 16, and for the second time in my life, diagnosed with depression. This time though, I was medicated and put in therapy. I knew in myself that something was not right, something in my body felt...
    Staas Staas
    22-25, F
    3 Responses Aug 18, 2011
    RGoffinet82 RGoffinet82
    31-35, F
    Apr 11, 2014

    When I was a child I would

    rather sleep than go out and play with my friends. My family has always been really big into naps so we just thought it was normal. So we just dealt like it. Then when I was 19 I was diagnosed with a different condition, which the meds made me even more tired. Finally my...
    deleted deleted
    26-30
    Jul 11, 2015

    Combination Sleep Apnea,RLS, And Idiopathic Hypersomnia

    Does anyone of have all 3? Im struggling with the 3; and I was wondering if anyone else has too? My problems are still the same just might be a lil more sleepy. Im stuck on what to do with work, im barely making it with my 2 jobs. I am on xyrem only. Probably going to start...
    budswiser budswiser
    31-35, M
    3 Responses Aug 16, 2013

    Since I have not yet found sufficient help

    for my sleep disorder I am trying to help myself in different ways. I figured a support group may be in order... perhaps. Here is a little bio on me. I am 30 years old. I started having sleep issues at the age of 12. It was around this time where I started taking 4 hour naps...
    JanineEs JanineEs
    31-35, F
    3 Responses Jan 31, 2014
    JanineEs JanineEs
    31-35, F
    Feb 4, 2014

    It started in 8th grade

    for me. Slow though, I only fell asleep once or twice in class. It wasn't that bad, especially since it was just in class. But I could not stay awake in class to save my life. Now as a freshman in college i sleep 7-9 hours at night due to a tough workout schedule and if I can i...
    kxCobra kxCobra
    22-25, F
    1 Response Jan 14

    I Think I Have Hypersomnia

    But I don't have a diagnosis yet. I've always been a sleeper, since I was a kid it's been a bit of a joke in my family that I'm always sleeping. When I was 20 I was diagnosed with severe clinical depression and I struggled with insomnia a lot too. Since then I have gone up and...
    UnabashedVixen UnabashedVixen
    31-35, F
    3 Responses Feb 7, 2013

    A Very Frustrating Disability- Idiopathic Hypersomnia

    Hello everyone. I am new to this site and just wanted to share my story and hope to give you all some hope. I am currently 22 and suffer from Idiopathic Hypersomnia. It started when I was around 14. I was in highschool, my sophomore year I believe. I started sleeping, a lot. I...
    CaseyGirl CaseyGirl
    22-25, F
    6 Responses Nov 9, 2012

    Trouble With Ih And Spouse

    ı have been diagnosed with panic attack , gad , depression and conversion since 1997 . ıts been 16 years since than. ı used different kinds of pills now ı am on cipram for about 11 years. it works well .my university years were hell. ı complete my university education in 7.5...
    1 Response Jan 24, 2013

    Idiopathic Hypersomnia At 15

    About a year ago I was diagnosed with Idiopathic Hypersomnia. I was at the end of my freshman year of high school. My grades dropped, relationships sucked, and I was more depressed then ever. I couldn't stay awake through my classes and I thought I couldn't sleep. I had a sleep...
    LittleMsGreenEyes LittleMsGreenEyes
    18-21, F
    3 Responses May 14, 2013

    I'M A Young Person With Idiopathic Hypersomnia

    Hard to believe I am 18 now. I should be cruising in a car, full of energy. I should feel something from caffeine or ritalin. It's so hard to have a chronic illness and on top of that one that very little people are aware of. Some people doctors even deny the existence of a...
    thedrakoness thedrakoness
    26-30, F
    2 Responses May 2, 2013

    I never really paid too much attention to this

    especially when I was younger. According to my mom I slept all of the time. When I was awake I would disappear and probably just fell asleep somewhere. My story is no different than anyone else here. If there are so many of us with this rare disease why not better treatment? I...
    linuxnurse linuxnurse
    36-40, M
    2 Responses Jul 20, 2014

    What Is My Life?

    My life has an itch that I can't scratch and a hunger that isn't fed by food. I have idiopathic hypersomnia. If it was Narcolepsy I would feel relief after collapsing. But I'm tortured by not collapsing and endure years of yerning for the bliss of a refreshing sleep. My muscles...
    whamo01 whamo01
    41-45, M
    5 Responses Jul 15, 2012

    So I think I finally found a natural,

    over the counter treatment for idiopathic hypersomnia that works for me. Its still early and I don't want to get my hopes up but so far it seems to work. In the mornings I take a thermogenic when I wake up. I've tried a few different ones, but I managed to finally find one that...
    Elmindrida Elmindrida
    26-30, F
    2 Responses Dec 1, 2014

    I Never Want To Wake Up

    I've written before about being a happy person despite the hypersomnia. Well sometimes I truly hate myself. I know it's not the "right" feeling. But it's still there. I hate myself and love myself at the same time.I don't even know how that's possible.Some days I think about...
    queenofbandits queenofbandits
    26-30, F
    7 Responses Feb 3, 2012

    Ih, Sleep Apnea, And A Twist Of Pituitary Tumor

    I forgot to ask if anyone has had light headed spells, or dizzyness/blackouts? I go through periods of 2-4weeks of blacking out almost every time I stand up. That's been going on for a very long time too. I forgot to add that I have a pituitary adenoma (6x4x6 mm) . So I have...
    budswiser budswiser
    31-35, M
    1 Response Sep 5, 2013

    2 Kids Who Were Always Tired

    I have two kids who are always tired. My daughter was diagnosed at 17 and my son at 15. We know this condition runs on my side of the family but my kids are the first to actually get a sleep study done. I had told the docs for years about their tiredness but they would just say...
    2alwaystiredkids 2alwaystiredkids
    16-17
    1 Response Sep 22, 2012

    Hypersomnia-what Do Suffers Have In Common?

    Hi all, There are some questions I have for the group. It is so hard to find information on idiopathic hypersomnia. I'm wondering if we have other things in common. I noticed that we seem to be a range of ages. Do any of you have other health issues prior to receiving the...
    Snorrie Snorrie
    36-40, F
    9 Responses Jul 17, 2012

    How Do You Make It?

    I have been feeling very misunderstood and alone and was glad to find this website. I had trouble with fatigue as a teenager but was diagnosed with depression. I have tried every anti-depressant imaginable but none helped. Most doctors I tried to talk to about fatigue told me...
    LuvMyCats LuvMyCats
    46-50, F
    5 Responses Jul 29, 2012

    Find Support!

    If you have IH and are on facebook, do a search for Idiopathic Hypersomnia and join the Idiopathic Hypersomnia support group. My life took a huge turn for the better when I did. If you do, please mention that you came from EP so I know if I am reaching anyone because helping...
    HyperZombia HyperZombia
    41-45, M
    Oct 6, 2013

    Sleepy And Lost

    Wow, where do I began. I am a 22 year old guy suffering from what I think is idiopathic hypersomnia. I've always been athletic, hardworking, and smart. Well aliitle more then 3 years ago I started sleeping a lot and didn't know why. My friends at the time kept wanting me to...
    Thomas22zzz Thomas22zzz
    26-30, M
    6 Responses Jun 24, 2013

    Wake Up DJT Just Wake Up

    Hello!  I am just making a short note until tomorrow to repost my story because a lot of things have changed since my original post in April. Just crying out for help and want to help and share stories with others.  Have a great, WAKEFUL...day!!!
    wakeupdjt wakeupdjt
    36-40, F
    6 Responses Apr 16, 2012

    My Memories Are Not My Own.

    My memories are not my own and my eyes don't only show what's before me.  i constantly have to disregard the flashes of what i think i see and the environment that i know im in.  i see the worst in everything or everyone and have thoughts that would make the devil himself...
    whamo01 whamo01
    41-45, M
    2 Responses Dec 31, 2012

    Trying To Explain What Ihs Is... Since 1998

    I'm not sure if my IHS is making me more tired or me explaining it is! Right now, I'm trying to explain why I should be allowed to have my school aid money! Already sick of trying the job route and the whole SSI/SSD I'm not awake enough to complete all that after 3-4 tries, I'm...
    jlp6869 jlp6869
    31-35, F
    2 Responses Dec 19, 2012

    Help

    I was diagnosed with idiopathic hypersomnolence when I was in high school. It was horrible; I missed out on so much! I was prescribed Dexamphetamine just to be able to live a ‘normal’ life. I hated taking this as I believed it made me depressed so I stopped taking it. Later...
    racheltorrington racheltorrington
    31-35
    4 Responses Jun 17, 2013

    Idiopathic Hypersomnia Has Ground My Metabolism To A Halt

    Hey guys, I don't know who out there will take the time to read this, but whoever does, thank you. I, like many of you, suffer from Idiopathic Hypersomnia. I have a few guesses as to what has caused this disorder for me, but no real proof for any of it. Furthermore, my sleep...
    psommer12 psommer12
    22-25, F
    11 Responses Aug 3, 2012

    Sleeping Thru Life

    Hello! I am a half century old and I was just diagnosed with severe hypersomnia. Not that I wasn't aware of it, but getting somebody in the medical community to listen to it is a whole other topic. Much like many of you I have been told that I just needed to get up and exercise...
    n2slp n2slp
    51-55, F
    2 Responses Nov 17, 2013

    Update With Hypersomnia/Advice For Students

    So I've noticed that I still get some comments on my first story I wrote when I was in college. And although I haven't been on in awhile I'm still very glad to have this site. Here's an update on how life has been post-college. I'm now 25 and have experienced my first full-time...
    Mag2827 Mag2827
    22-25, F
    1 Response Mar 5, 2013

    Hypersomnia

    i have no one to talk to about this, cause no one i know has hypersomnia. so i have to get on the internet . i have been sort of cured of hypersomnia with medication, i use to sleep 20-22 hours a day and could barely function. people just overwhelm me now, i have been awake for...
    jorywhite jorywhite
    66-70
    2 Responses Oct 6, 2013

    Giving Up And Letting Go...

    Hi all, Thank you for your latest posts. I first posted my story in July last year. Since then I have lost a job and my marriage. I am in the early stages of applying for a disability pension. I will let you know how it go's. Although there have been some big changes, especially...
    Snorrie Snorrie
    36-40, F
    2 Responses Mar 12, 2013

    Going Upstairs

      Currently at work, struggling to stay awake. Everyday I miss out on probably 2 hours where I appear to be awake, but am gone... I first realized I had an issue when I arrived at work a few months ago, with no recollection of how I got there, or even of getting up that...
    scorpiolafuega scorpiolafuega
    26-30, F
    2 Responses Jun 27, 2013
    xOkayChelseAx xOkayChelseAx
    31-35, F
    Nov 7, 2015

    Managing Work And Life With Hypersomnia

    Hello! I've been officially diagnosed with idiopathic hypersomnia, which I never heard of before.  I've been struggling with waking up for years, and it seems to be getting worse and worse.  About 10 years ago I went to a sleep doctor and had a sleep test because I...
    AndriaM AndriaM
    36-40
    24 Responses Sep 30, 2010

    Hypersomnia + College + Work = Rough

    My hypersomnia story started with 2 car accidents. First in 2007 I fell asleep while driving and crashed into a tree on the other side of the road, but first had to go over bushes and a barbed wire fence. i didn't wake up until the airbag was DEFLATING. My second accident was...
    Mag2827 Mag2827
    22-25, F
    13 Responses Nov 20, 2010

    Officially Disabled And Running Out Of Steam....

    April 12, 2010   I'm now 42 going on 80.  I didn't think much of it when I fell asleep all the time in High School, but I did start to look into it after a couple of years of trying to get through college by sleeping through class and sleeping on my homework. ...
    HyperZombia HyperZombia
    41-45, M
    23 Responses Apr 12, 2010

    My Story Of Waking Up From Ih

    I post this a while back as a response to someone else's story but I figured I'd fix it up a bit, update it and post it on it's own! :) Sorry ahead of time for how long and detailed it is. I don't remember much about my high school years but I remember going into it being healthy...
    knitgirl42 knitgirl42
    22-25, F
    6 Responses May 1, 2011

    A Pain

    It is still a struggle and it seems to control my life. Even when I take my meds I am still tired and I keep forgetting to do things and then I get in trouble. I can't stand it. I wish I could live a normal teenage life. I guess no teenage life is normal but I just wish my...
    LittleMsGreenEyes LittleMsGreenEyes
    18-21, F
    2 Responses Oct 28, 2013
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