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I Have Severe Idiopathic Hypersomnia

Hypersomnia

By: fananafanafo
Written on December 16th, 2008

I was officially diagnosed with severe idiopathic hypersomnia in August, although I have suffered from it all my life.  For as long as I can remember, I have slept and slept and slept.  Waking up has always been a huge challenge, no matter if I sleep 6 hours, 9 hours, 12, or more.  My record is 22 hours asleep.  There are many days when I sleep for 16-20 hours and less than 8 hour later I'm back in bed for another 16.  Most people like to sleep in on the weekends, but I usually don't get up till 6 pm or later.  I have missed many days of work because I could not wake up and get out of bed.  I would take 2 hour naps every evening after work, and wake up feeling like utter crap.

Diagnosis came after I complained to several doctors about excessive sleeping.  Most of them just told me I was lazy and I just needed to get out of bed and go do something.  Finally one listened and sent me to a neurologist, who ran all kinds of bloodwork, ordered a sleep study and a narcolepsy test, even a CT scan of my head.  Blood work came back satisfactory.  The sleep study ruled out apnea and while I do exhibit some of the symptoms of narcolepsy, the test ruled it out.  My head and brain are normal. 

The doctor finally confirmed what I have known all along - hypersomnia.  Idiopathic just means the cause can't be determined and severe... well it means it's bad. I have been prescribed Provigil and have been on it since September.  The results are amazing.  I only nap about once a week now.  In fact I tried to nap today but couldn't!  Waking up in the morning is no longer so difficult.  I still have a tendency to sleep all weekend, but instead of waking up at 6 pm, I wake up anywhere between 11 am and 3 pm. 

I no longer feel like sleep is controlling my life.  I finally feel like I actually have some control over sleep for once.

By: fananafanafo
Age: 26-30
2,282 people have read this story

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9 responses
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    moosebite
    moosebite

    sushifan, while I was going through the medical ringer, the long road of new doctors and extra special specialists, it was very difficult not to feel like I was going crazy and being lazy. The timing of all of this was during my college years. I would like to mention that I am a very dedicated student (and a little bit OCD about my school work) but with the onset of the severe idiopathic hypersomnia I couldn't help but feeling like I wasn't in control anymore. Not of when I could wake, not of when my body would need to crash, and not of the work that I was used to being the master of. But with everything considered, the only way to push forward is to convince yourself that it is not your fault when you are not able to do something that you feel you should be doing. Even more than convincing yourself that it is not your fault, take the time out to do something that gives you confidence and you will start to feel like your old self again. For me, it deffinately gave me the motivation that I needed to get back on my grind....that and the fact that the adderall at least keeps me awake.

    Apr 7, 2012
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    sushifan
    sushifan

    I was diagnosed with idiopathic hypersomnia 5 years ago, but the onset was more than 15 years ago. I still struggle with negative feelings about myself and my character. I spent many years thinking that I was lazy, unmotivated, and irresponsible. I take adderall for my symptoms and am able to function fairly well these days, even though I am still extremely sleepy 24/7.

    Jan 9, 2012
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    sushifan
    sushifan

    I was diagnosed with idiopathic hypersomnia 5 years ago, but the onset was more than 15 years ago. I still struggle with negative feelings about myself and my character. I spent many years thinking that I was lazy, unmotivated, and irresponsible. I take adderall for my symptoms and am able to function fairly well these days, even though I am still extremely sleepy 24/7.

    Jan 9, 2012
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    Rlawx
    Rlawx

    I do not have Hypersomnia but my son's mother was recently diagnosed with it. While we're no longer married, I still love her deeply. I want to help her but have few ideas and absolutely no experience with this condition. She lives in Oregon and I'm trying to find resources for her there. I'd appreciate any suggestions. Thanks.

    Oct 19, 2011
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    mmwaldman
    mmwaldman

    I've had hypersomnia since 10. I'm 42 now. I'm in the middle of being diagnosed. But, I don't know which med to go with.



    I may start a job soon and don't want to be experimenting with drugs and screw it up.



    I just read a bad story about nuvigil and good about provigil. But, they are basically supposed to be the same drug. What about low dose amphetamines or ritalin?

    Sep 9, 2010
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    sully1980
    sully1980

    what is provigil??

    Feb 14, 2010
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      Dancer1997
      Dancer1997

      Provigil is a stimulant used for many things.

      Apr 11, 2012
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    amandaxmarie
    amandaxmarie

    Oh... my... gosh.



    I am pretty convinced I have the same thing. I'm getting tested for it in 8 days (yes, I am counting down).



    For 14 months now, I have been tired with no breaks. No lights at the end of the tunnel, no lucid days where I thought I was getting better. And I never knew why. I've gone through several doctors, blood/urine tests, and I've had one previous sleep study. But I really think this is what I have because seemingly everyone on the internet with this disorder has the same symptoms as I do. I hope I have it so that I can finally know what's wrong with me and get treated for it. Thanks for sharing your story!

    Dec 20, 2009
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    AlwaysHavingIssues
    AlwaysHavingIssues

    Thats great! I'm glad you were able to finally get an answer!



    I recently had a sleep study to test for hypersomnia and narcolepsy but it came back inconclusive so I was scheduled for another study but since it was their fault, the sleep center is paying for it instead of going through insurance again (which was a big hassle)

    Hopefully this second test will give me some answers!



    Did you do the nap test as well?

    Aug 17, 2009
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