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Hypersomnia - anyone been diagnosed

Posted , 4 users are following.

no_angel
no_angel

Generally speaking,I go to bed at about midnight and get up at about 5:30am. If I go in to work, I am usually home by 9:30 am. I will go straight back to bed and sleep until midday,when I will get up and have lunch. I will go back to work at 14:00. arriving home at 16:00. I will then sleep until 19:00 or so and get a sandwich and back to bed at midnight.

If I am not working, I will go to bed at the same time, get up at about 8-8:30, Have breakfast and be back in bed at around 10ish, having hoovered and dusted and seen to the cat. Awake again at 13-13:30 ish, have lunch and be longing for a nap by 15:00 ish. Awaken again at around 19:00 and stay awake until bedtime.

Some days I don't wake up properly at all, sleeping round the clock on a Saturday or Sunday.

When I am awake, I still feel tired and have only transitory flashes of energy. I don't fall asleep whilst eating or talking, but I will leave the room and go to bed if I need to at those times. I keep away from situations that may interfere with my sleeping habits, and as you can imagine I don't have much of a life outside the home.

Because I have to fit so much into my waking hours, I joke that I only have an on or off switch. If I am not going full speed ahead, I am asleep. It isn't really funny though, if I sit down, the bottom line is that I will go back to bed.

Anyway, Does this sound familiar to anybody, and have you had any help with it?

0 likes, 4 replies

4 Replies

  • Poppys123
    Poppys123

    Posted

    Hi

    I was falling asleep at work and not being able to control it.

    Arms go heavy and I have no control over my eyes they just want to close

    I have had 2 sleep studies one says I have sleep apnea another says no I have hypersomnia, I now take

    Dexamfetamine it's a drug used for narcolepsy or AHAD I am only allowed to take 5mg twice a day but it does keep me awake it's not given out freely as it's a licensed drug and a member of the speed family so have to be monitored for blood pressure monthly you need to have a sleep study done and go from there it's a long haul it has taken me 4 yrs to get some sort of medication going having said that it's not a long term fix because now I have to go to st Thomas in London for another sleep study it does feel like it's never ending xx

  • glenn22
    glenn22

    Posted

    I think one of the things you may want to look into is whether you have sleep apnea. While not everything you said ‘clicks’ with me, most of it did. You feel as though you should be getting enough sleep and instead of that, you just feel more exhausted than you did before. My recommendation is to get tested – even if you rule it out that it an important step.
  • Poppys123
    Poppys123

    Posted

    Hi

    I have been tested for sleep apnea and currently use a cpap machine which does it's job well.

    But I still could go to,sleep,again even after what I think is a good nights sleep.

    I will be going to st Thomas hospital to see if there is anything else they can see on a study, I've had this now for about 3'yrs and getting worse by the day x

  • middycat
    middycat no_angel

    Posted

    Hi no angel ive been diagnosed with ideopathic hypersomnia too i can go into deep sleep in about one and a half mins ive recently been put on modafinil which seems to give some improvement and also been recently diagnosed with D.I.D  or Disossociative Identity Disorder. Which may account for some of the hypersomnia. i too have had a sleep study at St Guys and have a full time carer at the moment and im fairly housebound.
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