Index Support Center Forums Treating Narcolepsy Xyrem and less sleep

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  • #1667
    AvatarJenail87
    Participant

    So I am currently on xyrem at 3 twice a night. I’ve noticed though that I can’t fall asleep after the first dose. I’ll lay in bed for those 2.5 hours with nothing. Sometimes I’ll feel as if I’m buzzed or something but can’t fall asleep. After the second dose I typically fall asleep within 30 minutes. Before the xyrem I was getting around 7 hours of crappy sleep. Now I’m only getting maybe 5. I think the quality is slightly better but definitely not the quantity.

    #1672
    TheRabbitKingTheRabbitKing
    Keymaster

    At lower doses, for some people, Xyrem is more stimulating than sedating. Hang in there and follow the recommended titration protocol if you can. Going up quickly in dosage is more likely to produce bad side effects. Source: Someone who went up too quickly and got bad side effects 😀

    My current jam: Anathema - Springfield

    #1697
    AvatarEleuthero
    Participant

    I am one of those people who went up in dosage too quickly. I ended up in my general practitioner’s office with SEVERE anxiety, a resting heart rate of 108, and blood pressure of 152/94. Now I take Xanax during the daytime and the anxiety and blood pressure problems have abated but now I’m probably looking at horrible Xanax withdrawal.

    I’m taking the maximum Xyrem dosage of 4.5 2x per night. My total sleep time on Xyrem is dropping. Xyrem sleep is good sleep but I need more than the 4-5 hours total that it’s giving me. So now I’m staring down the face of daytime Xanax withdrawal and looking to find something else for sleep. I hear Xyrem withdrawal is pretty bad, too. Quicker than Xanax withdrawal but nasty nonetheless.

    I’m in a bind and there’s no way out.

    Sleepyhead.

    #1701
    JasonJason
    Keymaster

    Are you taking a stimulant during the day?

    How soon after eating are you taking the first dose?

    For me Xyrem was toxic feeling. I couldn’t sleep very long on it and after about two weeks in couldn’t handle it anymore.

    #1703
    AvatarJenail87
    Participant

    I take provigil twice a day never after 1 pm. I wait the full two hours if not more before taking my first dose

    #1705
    JasonJason
    Keymaster

    You’re describing sleep onset insomnia so I’ve got an idea! My experience with hypnotics and insomnia has been pretty extensive, which sucked for me but is good for you because I figured most of my problems out.

    So if I had to guess, part of the problem is.

    1. You’re not sleepy enough/really ready for bed when you take the Xyrem.

    2. Laying in bed trying to sleep makes insomnia worse.

    Sometimes going to bed earlier, leads to less sleep. I always wait until I have physical signs of sleepiness, like frequent yawning, before taking medication to help me sleep. Try going to bed like an hour later but getting up at the same time.

    The other thought I had was have you tried Nuvigil?

    #1707
    AvatarJenail87
    Participant

    Here’s the thing I am tired. I’ve tried taking the dose earlier and later. I’ve also stayed up but nothing seems to change it. What would nuvigil do?

    #1710
    TheRabbitKingTheRabbitKing
    Keymaster

    If I recall correctly, nuvigil hangs around in your system for a shorter span of time so there’s less of that tail end timeframe where there’s enough of it in your system to keep you awake but not enough to keep you feeling awake if that makes sense.

    My current jam: Anathema - Springfield

    #1717
    JasonJason
    Keymaster

    Hmm weird. It seems Xyrem just seems to promote insomnia in some people. You’re definitely not the first person to experience this effect. Nuvigil is similar to modafinil but has once daily dosing. It might have less impact on your sleep but everyone is different.

    If you don’t take Xyrem does that fix the problem falling asleep?

    #1719
    AvatarJenail87
    Participant

    I might ask about nuvigil because of forgetting to take the second dose of provigil. Yea I fall asleep fine without it. It’s just poor sleep

    #1734
    TheRabbitKingTheRabbitKing
    Keymaster

    Hope it helps!

    My current jam: Anathema - Springfield

    #1766
    AvatarNatdoc
    Participant

    Jenail87
    If I may ask, how do you fare without a daytime medication?

    #1768
    AvatarJenail87
    Participant

    Depends but typically if I don’t work I will take a nap. If I work and I’m having to sit then I’m doing the head nod hard.

    #1772
    AvatarNatdoc
    Participant

    Jenail87
    Are you on any other medications beside provigil and xyrem?
    When you go lie down to sleep what happens, is your mind still racing, have you taken care of all the days activities prior to trying to sleep?
    how long have you been taking provigil? and when are you due to increase your xyrem ?

    #1776
    AvatarJenail87
    Participant

    Lowest dose of effexor. My mind is calm. Provigil I’ve taken for I think 3 to 4 months. I see my doctor again the 25th he won’t increase it without seeing me.

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