More Xyrem Questions...Sorry if Im repeating

Discussion in 'Fibromyalgia Main Forum' started by Des2nee, Nov 17, 2005.

  1. Des2nee

    Des2nee New Member

    When taking this medication do you get any hangover type effects in the morning?

    Do you need to plan for 8 hours of sleep like Ambien and Lunesta?

    Are you able to wake in the night or does it totally knock you out?

    Could you clarify the need to take a second dose in the middle of the night? (I saw somewhere where someone said they take thier second dose at 2am...something to that effect)

    Do any of you also take Provigil? Have you taken it and no longer find a need for it?

    Thanks in advance for answering my questions! I look forward to some responses.

    ~Des
    [This Message was Edited on 11/17/2005]
  2. karatelady52

    karatelady52 New Member

    I've never had any kind of hangover with Xyrem.

    The pamphlet says to make sure you don't drive 4 hours after taking it (if I remember correctly.) You take l dose at bedtime (while in bed), then set your alarm and take another 3-4 hours later so if you went to bed at 10:00, you'd set it for 2:00 or so.

    I didn't like waking up out of a deep sleep so I only do the one dose and it works for me. I also take Sonata with it. You can take other sleep meds with it the drug reps are saying. My doctor told me that. Of course, you would want to run this by your doctor.

    One of the reasons I take another sleep med is that the Xyrem doesn't make you feel tired. Its nice to take something an hour or two (like my Sonata) and be really tired when you get in bed then allow the Xyrem to really help you fall into a deep sleep.

    The secret is to not fight it when you feel it starting to take affect. Just let yourself fall asleep.

    You can wake up a couple of hours later but I would think it would be hard to wake up right after taking it. I've never had to for anything.

    Sandy
  3. Des2nee

    Des2nee New Member

    Sandy,

    Thank you for taking the time to answer me. I think I may ask for it at my Dec 15th appointment. Right now my Ambien no longer puts me out like it used to. I can take it and still be awake at 3am and have to get up at 7:30am for the kid to get on the bus. The kicker is I am then up all day and at about 3-8 pm Im fighting to stay awake.

    After a month of this, my irritability has increased along with my pain levels.

    Thank you again,
    Valerie
  4. Juloo

    Juloo Member

    an information line where you can get questions answered. If you search for 'Xyrem' to get to the main site, you'll be able to find it.

    Also, because I just went through this yesterday -- everyone who gets a prescription now is requested to view a DVD or videotape that explains the dosing and answers basic questions. In addition, when they call to arrange your prescription, you'll be asked for all the meds you are on so they can cross-check for any potential reactions. Then they let you speak to a pharmacist there to ask any questions.
  5. abbylee

    abbylee New Member

    you can talk with a Xyrem patient and ask about personal experiences. It's 1-800-823-8893.
  6. Des2nee

    Des2nee New Member

    Thanks so much. Ill give it a shot to see what they say.
  7. abbylee

    abbylee New Member

    My answers are below:

    When taking this medication do you get any hangover type effects in the morning?

    No. Not at all. I wake up and am immediately wide awake.

    Do you need to plan for 8 hours of sleep like Ambien and Lunesta?

    You should plan on 7 - 8 hours because that is the recommended amount of sleep for everyone else.

    Are you able to wake in the night or does it totally knock you out?

    I find that going to sleep with Xyrem is like being put to sleep for surgery. One minute I'm awake and the next minute I'm looking at the clock and 2 - 4 hours are gone. But unlike waking from surgery - I'm wide awake, not groggy.
    The smoke alarm will wake me, but the phone will not unless most of the effects of Xyrem have worn off.

    Could you clarify the need to take a second dose in the middle of the night? (I saw somewhere where someone said they take thier second dose at 2am...something to that effect)

    One of the reasons Xyrem is so safe is because it is in and out of the body so quickly that it doesn't have to be increased over time like the other meds do. In order to get enough sleep, 2 doses should be taken because the first dose is gone in a few hours.

    Do any of you also take Provigil? Have you taken it and no longer find a need for it?

    I don't take Provigil but many here do. I've asked my doctor about it via email but he said that we would discuss it at my next appointment because it can be addictive. (I don't know why addiction would be a problem because if it works I'd be taking it anyway, but I'm not the doc.)


    abbylee
  8. Des2nee

    Des2nee New Member

    Thank you abbylee for your reply. My doctor has put me on Doxepin now. So I guess I have to continue to jump through his hoops so that if this one does not work maybe he will let me try it. Im desperate for some REAL sleep!
  9. shep

    shep New Member

    Des2nee,
    Thank you so much for your info on this medication.
    I am on my 3rd year w/o any restfull sleep. My doctor wants me to take this medication and I have been so scared to take it.
    I worried I would not wake up if the fire alarm went off or; my hubby has low blood sugars and goes into seizures and I have to be awake to help him if he starts thrashing about.
    I want to take it and needd the rest so bad; but was so afraid to take it. Thanks for your info ..it settled my concerns a lot.
    Shep