1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Idiopathic Hypersomnia

Discussion in 'Life Changing or Long Term Physical Illness' started by bhawk, Jan 8, 2018.

  1. bhawk

    bhawk Well-Known Member

    Hey everyone, i decided to tell you all about a condition i have called idiopathic hypersomnia.
    Its a neurological condition, related to narcolepsy which is more well known.
    Basically it means when i go to sleep i can sleep excessively, so far my record is falling asleep on the sofa on a sunday evening and not waking up until tuesday morning. If unchecked i sleep a minimum of 13 hours.
    Also no matter how much you sleep you never feel rested, so even after a marathon sleep i wake up just as tired as when i went to bed. I go so deep into sleep there isnt much that can wake me up. I have had people banging pans with ladels, a fire alarm, the "loudest alarm clock available", people spraying me with water guns, setting off mouse traps on my feet, slapping me about you name it, all unsuccessful in waking me up
    It is (for me) further complicated by suffering from insomnia at the same time.
    So i go from the extremes, either no sleep at all or sleeping stupid amount of hours.
    It took me over ten years to finally get a sleep study to confirm this diagnosis which was frustrating to say the least.
    Luckily i have a great sleep specialist. He has given me both stimulants (modafinil) and sleepers (zolpadem) and i am already on olanzapine for my schizophrenia which also makes me drowsy.
    The aim of the meds is to take the modafinil just before i get to sleep so they kick in while im under and will keep me in a lighter phase of sleep. It works to a degree but i needed time release pills so i could wake up at an appropriate time.
    I came up with a method which was by wrapping the modafinil in some wax from a baybel and swallow that, the wax takes hours to digest, releasing the meds several hours later making it easier to get up at an acceptable time.
    The only problem with the stimulants is that if you take them every night you build a tolerence, which is where the sleepers come in, i can take breaks from the stims and just take sleepers in the early evening meaning i can get my natural amount of sleep but earlier than normal.
    It is a ridiculous mix of diagnosis, it sounds contradictory not being able to sleep then sleeping too much.
    The main issue i have with my insomnia is i wont know if its going to happen, so when i take my stimulants then try to sleep, i find myself unable to nod off and before you know it the stimulants have kicked in and there is no hope of sleep until the next night.
    Despite this illness, i still fight, fight to get to work. Luckily my gaffer knows about my sleep condition and has been amazing with me and allowing a bit of lateness so long as i get the jobs done.
    Like i say, this illness is little known about, so if you relate to this, ask for a sleep study, it can be a debilitating condition and there is help out there. While its not curable you can fight it.

    Anyway, thanks for reading

    YellowTulips and Deety like this.
  2. Jazlyn

    Jazlyn Well-Known Member

    Wow. That must be really hard. Thanks for sharing your story.
    YellowTulips likes this.
  3. Karmitkurmit

    Karmitkurmit King of the Hedge SF Supporter

    There are so many sleeping disorders that I've heard of, but that's a new one. It is to your eternal credit that you have shared your story as it may just help others, or at the very least it will make people feel a little more comfortable knowing that they are not alone...as you are not.
    YellowTulips likes this.
  4. YellowTulips

    YellowTulips Active Member

    Thanks so much for posting this

    They are sending me to sleep study to rule this out for me,
    It has been a huge contributor to me feeling this way. The Sleep disorder. For years they put it down to Chronic Fatigue Syndrome and finally it looks like they are going to look into it. I really believe it's Hypersomnia. I relate to nothing waking you up. I slept through a house fire, alarms going still wouldn't/couldn't wake up.
    It's hard. I asked a pharmacist about that med which you mentioned, the stimulant. I pray they'll give me something like this.
    It's horrible...... had to quit my courses , missed out on family, missed chunks of time down to uncontrollable sleeping.
    Thanks for posting this here as I think I really needed to read this. Found it by chance. It's hard to describe sleeping disorders accurately to people, without minimizing just how life changing they are.

    Wishing you all the best
  5. bhawk

    bhawk Well-Known Member

    Hello, if ever you want to talk about it im here and understanding.
    And yes, it really is debilitating. I find it more debilitating than my mental health issues. Even the little things people dont understand, like having an appointment or work meeting in the morning, it becomes a challenge for the most basic things. I remember when i first got diagnosed i always asked the doctors for evening appointments and they still gave me morning appointments then complained when i didnt show because i was still asleep.
    Another thing you come across often when talking about it is when you mention heavy sleep you often get "oh i wish i could do that" or "well just set another alarm" or "just have a coffee and itll be right"
    Unfortunately there is no cure and my sleep doc literally said "theres no cure so its just damage limitation" which is why he prescribes me so many meds.
    Like i said, while there is no cure, there are options to help manage it. there is still a chance to fight it.
    Also soon there will be a new drug on the market called wakix, my sleep doc says he will put me on it soon to see if i fair any better on it.
    So theres still hope of better meds too.