Xyrem Questions (Help)

Discussion in 'Fibromyalgia Main Forum' started by Scapper, Apr 22, 2007.

  1. Scapper

    Scapper New Member

    Tonight will be my 5th night of Xyrem. My insomnia went from unbearable to completely drug resistant in the past 2 years. Needless to say, I went quickly down hill and I've landed in a housebound state.

    So, my questions :)

    1) How long do you need to take this before you begin to wake up feeling refreshed? I'm waking exhausted and feeling like a total ZOMBIE. I can't even string words together.....or move my body for several hours upon waking.

    2) I'm getting bizarre depression/emotional reaction to this med. I'm crying CONSTANTLY. Can I expect this to level out with time?

    Other side effects: headache, nausea, brain fog beyond my "norm", legs feel weird (hoping this is an isolated incident b/c it just started today).

    So, did anyone start off rough but find the drug more tolerable over time?

    Each night I get different amounts of sleep.....not sure if supplements are infering (I try to take my night time supps a few hours before.

    ANY TIPS WOULD BE APPRECIATED! Especially for this emotional rollercoaster.

    Thanks, Scapper
  2. Daisys

    Daisys Member

    I'm sorry you're having trouble with xyrem. The best advice I can give you is to go to the Talk About Sleep site and look at the narcolepsy message board. They've been working with xyrem for years, and have a wealth of experience.

    If you look at thread titles, you'll find a lot of trouble shooting discussions. A lot of people had a rough start, but some ended up doing well on it. Others couldn't get it to work for them. If you want to get some personal feedback, they're very helpful.

    I felt refreshed even with as little as 3 hours sleep on the low, starting dose. I did have dry eyes each time I titrated up, until I got used to each dose. I also had a headache after the first night, but not since then.

    Also, I did have some anxiety when I first got to a high enough dose to get 8 hours sleep, but after reading threads from the narcolepsy site, I added magnesium (I was already taking plenty, but needed more) and it cleared up.

    The most unpleasant night I've had was when I took a supplement only 2 hours before xyrem. I didn't sleep well at all, and being awake on xyrem is no fun! I go at least 4 hours without eating before the first dose.

    I know some who had trouble with it either were started at too high of a dose, or else titrated up too quickly. If that's the case, talking to the people at the central pharmacy can give you direction to take back to your doctor.

    I sure hope you can work thru your difficulties, as xyrem is the best sleep aid for getting the deep sleep that we desperately need.

  3. Juloo

    Juloo Member

    I'm sorry you are having such a confusing time. I did not have the emotional symptoms that you are having, but I do know that it took a couple of weeks to find the right dose for me.

    I, too, was a zombie during the day. It turns out that the typical starting dose was about half what I needed. It was enough to get me under, but not enough to get me into deep sleep. When I finally titrated up to my dose, I'd wake up in the morning and was ready to go -- there was no hangover, no haze, no dozing during the day.

    My problems have been more with my stomach. It seems that the dose that turns my stomach inside out is rather close to the dose that I need to get into deep sleep. So I am extra careful to follow the instructions about when to stop eating, etc., so I'm not up at 2 in the morning tossing my cookies!

    Aside from searching online, also give the Xyrem support line a call.
  4. Scapper

    Scapper New Member

    Thanks so much for replying.....I was hoping you both would.....since I've been reading your experiences w/ this before I started.

    I went for a sleep study on my 3rd night on it. That was my worst night (I didn't sleep AT ALL on the first dose, which I do at home). I think I was just nervous and uncomfortable being in a strange place.

    I also thought it was too soon do to a sleep study since it's not recommended to up your dose so soon......but who knows. We'll see what this sleep specialist has to say.

    I'll try to not eat 4 hours within first dose. I've been a late dinner eater all my life so this one is hard. Plus with all of this stomach pain and nausea, I seem to be procrastinating dinner even more so. I was doing no food 2 hours before bed and then went to 3 hours......perhaps 4 will make a difference in sleep quality and my stomach issues. Hopefully I can fall asleep quicker than 30-40 minutes each time too.

    I'll also try to take my p.m. supps earlier. This is another thing I've been doing for years, so adjusting all of my scheduling is going to take me some time to get used to.

    I'm also in the process of weaning off of klonopin at the same time. I know it's not suggested to be on any other CNS effecting meds, but my doc said I could do the weaning while on Xyrem. Perhaps the klonopin is effecting the process too. Can anything be simple :)

    I also took your suggestions and upped my magnesium/calcium/potassium right from the start. I see my wholistic practitioner in about a month and perhaps he can tweak my supplements since I'm sure Xyrem is throwing off my electrolyte balance w/ all of this new added sodium to my system.

    As far as the depression and extreme emotions, I PRAY this levels off! I'm tired of crying :(

    Thanks for the Talk About Sleep board suggestion. I read a little today and when I have more energy, I'll post there as well. I'm not sure that my side-effects will be the same since I have CFIDS, but I can still get some tips.

    THANK YOU --- I pray this works for me!!!!

  5. Scapper

    Scapper New Member

    How long did you wait before you upped your dose?

    What was your initial starting dose?

    Has your stomach gotten any better?

    I started at 3gm (6gm total).....it's been a week.

    Thanks for any info you can give.

  6. Juloo

    Juloo Member

    *How long did you wait before you upped your dose? What was your initial starting dose?

    I noticed the 'fog' side effect very early (within 3 days) and called both my prescribing doctor and the Xyrem help line. They both suggested that I might be underdosed, and gave me permission to up my dose gradually (1/4 to 1/2 ... what is it...mL? mg? whichever is smaller) a night and made sure I knew the overdose symptoms, just in case. I started at 4 mg (or mL, whichever is smaller) twice a night, but was OK'd to 6 X 2. After I'd been at 6 for about 3 weeks, I still needed to go up...gradually increased to 7.5 X 2, but the second dose kicked my gut good at least once a week.

    Now I'm up to 7.5 once a night and will probably stay there. I am also using a CPAP for mild apnea, and that seems to help make the transition from wake to sleep easier. I haven't had any stomach problems, but it was always the second dose that got me. After I am on for a while again, I might try ramping up a second dose, but right now I'm waiting.

    *Has your stomach gotten any better?

    Hope it goes better for you...Xyrem doesn't work out for everyone, but if it does, it can really help.

  7. Scapper

    Scapper New Member

    Jennifer --- thanks for the "bump" -- SO SWEET :)

    Juloo -- thanks for taking the time to share your experience.

    I'm not sure my doc is all that familiar with this medication. By night number 6, still a complete zombie (brain fog worse than anything I experienced with CFS), exhausted beyond moving, horrible depression, stomach, etc., etc., he suggested lowering my dose. However, Xyrem pharmacist suggested raising.

    This caused me some stress but I decided to listen to Xyrem (w/ my docs permission).

    So, I went from 3gm (2x) to 3.75gm (2x) -- last night was first upping -- still woke feeling really drugged, takes about an hour to not feel like I'm still "under the influence" but still too exhausted to move.....I then had to nap for another 2-3 hours.

    Hoping my entire day isn't in ZOMBIE LAND today.

    My stomach pain has made eating REALLY difficult, but I'm determined to hang in there w/ this drug b/c I just don't sleep at all at this point w/o it.

    THANKS AGAIN.....scapper
  8. Juloo

    Juloo Member

    So take my comment with a LOT of salt...but your dose does seem low -- 2/3 of the dose I started with. My experience was that a higher dose would get you 'under' instead of just skating you along on the surface and making the whole night of 'sleep' rather a waste.

    But please keep close contact with the professionals!

    Hoping you find the right combination.
  9. Daisys

    Daisys Member

    I also had no stomach pain. That does not bode well, and I hope you're in touch with the xyrem pharmacists about that.

    Bummer that you're having these problems.
  10. Scapper

    Scapper New Member

    Thanks for responding. I guess I was referring to when you mentioned that your higher dose (when taking a second would bother your stomach).

    So, how long does one dose keep you asleep for?

    I'm praying this process doesn't take TOO LONG to find the right dose because it has raised my suffering level quite a bit. The last thing I need is more symptoms added to my already unbearable symptoms.

    I'm praying my body begins to let go of some of these side-effects.

    I'll see how I do on the 3.75mg (2x).

    When you call Xyrem do you ask to speak w/ a pharmacist or a different department? I've been asking all my questions to the pharmacist.

    Thanks for your help here :)

  11. Juloo

    Juloo Member

    When I was only using Xyrem and no other sleep meds, I would be able to wake easily for my dose-two alarm. Sometimes, though, I'd wake and not be able to fall asleep again. NOT GOOD!

    So I added a 1/2 dose of melatonin to bedtime (when I took the first Xyrem dose). That, at least, helped me feel like I *wanted* to go to sleep. But sometimes I could still feel that weird sensation of being 'pressed' into sleep -- as if my lungs couldn't fill quite as much, etc. It was a little scary.

    So, w/my doctor's ok, I added 2.5 mg Ambien at bedtime as well, and that allows me to put a dent in those wakeful periods, especially now as I am not needing to wake during the night. And the CPAP I use keeps my lungs expanding without that pressing feeling. So I sleep through the night.

    My stomach problems would generally be, as I mentioned, after the second dose and after I'd fallen back asleep. I'd half-wake, covered with sweat and moaning. I learned that was my sign to try and find the bathroom. I could never go back to sleep after, and would dazedly wander into the living room and space out for another two or three hours (tv or not) until my brain could function normally again.

    NOT taking the second dose is not as effective as only the one -- the theory is that the second dose actually pushes one deeper than just the first. And the first morning that my eyes popped open and the first thing I thought of *wasn't* of how tired I was -- well, that set a new benchmark.

    Perfect sleep remains elusive, but this is an acceptable second place and superior in outcome to all other methods (except anesthesia!). So I keep trying to get it right.
  12. Scapper

    Scapper New Member

    Thanks for your response.

    Last night was horrible. Sometimes I have a problem with the first dose and last night was one of them. It never put me "under" and I stayed in that half awake state feeling all drugged and bizarre......but too drugged to get up and take the 2nd dose.

    Even though I got 4 hours out of the 2nd.....I still wake feeling exhausted, brain dead, sicker than my usual CFS (this happens even when I get 4 hours out of both doses).

    I'll keep tweaking this because I've exhausted all other options.

    Thanks for letting me know that you take Ambien. Nice to know that, if needed, I have other options.....(if) I can't get consistency or positive results. As you said, waking w/o feeling completely exhausted would be nice :)

  13. Scapper

    Scapper New Member

    This medication is really kicking my ******

    I upped my dose, as per Xyrem pharmacist and doctor because of the zombie brain dead feeling I had all day. I'm also getting this bizarre heightened emotional feeling which reduces me to tears (sobbing tears) several times a day (over ANY feeling). I'm completely not in control of my emotions at all.....a very strange out of body feeling.

    So, after I upped my dose, my daytime stomach pain/nausea went from bad to worse. I now feel like I'm VERY close to vomiting and just the "thought" of food makes me sick.

    I'm getting every side-effect under the sun from this medication......leaving me in bed all day, too sick to even move......too many to even list :(

    I've tolerated unbearable symptoms for many years but all of these NEW ONES are just putting me under really hard. I'll draw the line at vomiting......and in the meantime, I'll pray that some of this LIFTS with some time.

    Unfortunately, my body just does not handle medication (any medication) well.

    Since this is a narcolepsy drug, the people at Xyrem have experience based on narcoleptic's reactions.....and my doctor has ZERO knowledge on CFS (he's a sleep specialist). They're all telling me that Xyrem is out of your system in 4 hours, so everything I'm experiencing during the day is NOT from Xyrem. NEEDLESS TO SAY.......I DISAGREE.

    Not sure how long this trial will last or where to take this insomnia issue next.

    Thanks for your responses (and bumps :)

    I'm still hoping my body adjusts and will ABSOLUTELY report back either way in the hopes that this will help someone else :)

  14. Daisys

    Daisys Member

    There was a time when I titrated up and started to get a feeling of anxiety and disconnect (not quite depression). I was taking plenty of magnesium at the time, but I went back down in dose strength and started taking more, high quality magnesium (malate). At that time I also started taking the krebs cycle supplements: acetyl-l-carnitine and nicothiniamide. (I was already taking Sam-e and CoQ10). Later, I was able to titrate up again and haven't had that problem since, even at higher doses.

    I feel it's very important for the brain to get used to each dose before moving up to a stronger dose. Also, if you're low in certain nutrients, it'll show up when taking xyrem.

    If you went to the Narcolepsy message board on the Talk About Sleep site, you'll see posts from others who have had problems and what they did to resolve them. One was taking magnesium every couple of hours (if I remember right) for quite awhile before being able to back down in the amount needed to control symptoms.

    The consensis at the Narcolepsy site is that, yes, xyrem leaves in 4 hours, but if you are depleted in some important nutrients, it will show up while taking xyrem.

    Another point: 3g is the usual starting point, but some start much lower than that, and then still take their time working up in dosage.

    Sure hope you can get it to work for you.
    [This Message was Edited on 04/29/2007]
  15. Scapper

    Scapper New Member

    Thanks for the tips.

    I'm SO sick and frustrated that I want to just give up SO BADLY.....but I don't sleep at all otherwise.

    Perhaps I did go up too quickly. The Xyrem pharmacist suggested upping my dose b/c of my severe exhaustion and brain fog. She also said that a week was long enough....apparently not for my body.

    I've doubled my magnesium/potassium blend and all it has done is give me the runs (not to get too personal :)

    As of now I'm not taking l-carnitine and I had stopped the CoQ10 when I didn't feel any difference.

    I'll have to read on the other board to see what I can do about my stomach. Today was so severe that I couldn't get ANY food down, for fear of it coming right back up. This nausea is new for me.

    I also have REALLY bad quadricep pain......to the point where it's hard to walk. This is also new for me......I thought the magnesium would have helped with this one.

    I wake w/ a headache each day but it dissipates in time.....but returns at night.....I'm not sure why this happens....you?

    I'm upset that I don't have a doctor who knows CFS and implys that it's just me. This medication seems to need a lot of support and I apparently can't get it from him.

    I plan on calling Xyrem tomorrow with a list of questions. I'm just not sure how far away supplements need to be taken from Xyrem. I also want to take Pepto Bismol but not sure if I can take it too close to the Xyrem.

    This medication is so confusing!

    I'll read a bit tonight on the talkaboutsleep board.

    Thanks again for your concern......MUCH APPRECIATED!

  16. frankie78

    frankie78 New Member

    hi scapper.

    i've been on xyrem 5 days now. i satrted on a higher dose - 4.5g/9mL - and had a severe reaction. my husband woke up at 2am when i was rocking quickly back and forth and breathing very laboreously. it took 3 or four minutes to wake me up while yelling my name and slapping my face. very scary! i couldn't move and wasn't makeing any sense. he wanted to take me to the ER but i somehow convinced him i was okay. no second dose that night. but i woke up feeling energized.

    since then, after a call to the doctor, iv'e been on 3g/6 ml 2x/night. i also feel like a zombie, like i'm detatched from everything around me, and like there's a pane of glass between me and the world. i'm exhausted, headache, and limbs feel like lead. i've been taking the Krebs's cycle supplememts and they help with energy.

    i think i need to titrate up as well. how are you? any better?

  17. Daisys

    Daisys Member

    Are you saying your doctor had you take 9ml x 2 on your first night? If so, YIKES!

    Even 6ml x 2 is high to begin with. A lot of people take weeks to even get to that strength. Not very many even end up at the very highest doses. I'm at 8ml, 7ml.

    The symptoms you describe sound more like overdose to me, than needing to titrate up. I think I started at 4.5ml x 2. I waited until I felt comfortable with the dose before moving up, and only titrated up .5ml at a time.

    What I suggest (verifying with your doctor, of course), is to start lower and stay with it, until it doesn't feel powerful anymore. Then, titrate up just a little and wait until it's comfortable, and on like that.

    You won't get a full night's sleep at first, but it's worth it to gut it out. You want your brain to adjust to it, so that when you do get to higher doses, you won't have side effects.

    I've seen more people have trouble with xyrem from starting too high, and titrating up too fast than starting too low.
  18. frankie78

    frankie78 New Member

    thank you for your advice.
    in your experience, does this zombie-like feeling go away once your brain gets used to the drug? the reason i thought i might need to go up is that juloo wrote that the zombie effect was because he wasn't getting into a deep enough sleep.

    i know i need to call the xyrem line. doctor is not in today. do you knnow the signs of overdose?

    thanks, frankie
  19. Daisys

    Daisys Member

    OK, are you saying you feel zombie like all the next day after taking xyrem? I can't think of how taking too small a dose could cause that kind of effect. Especially since you started by taking the maximum dose. Because I don't know what Juloo meant about feeling like a zombie because of being underdosed. Wouldn't that be not falling asleep, but feeling the effects? Not all the next day?

    When I first started taking it, at a low dose, I didn't get much sleep. So, I was still tired the next day. So, I guess we need to clarify what you're talking about.

    Here's what I did: For the first week, I took 4.5ml (2.75g) for both doses. I didn't get more than an hour or two of sleep on it. It started out feeling strong, and then less so, and then I titrated up to 6ml (3g) for another week. Others that I know of went slower than this. They stayed at a dose for 2 weeks before going up .5ml.

    Calling the hotline is a good idea. They can reassure you, for one thing, that you're going to be fine. It will wear off.

    [This Message was Edited on 05/04/2007]
  20. Scapper

    Scapper New Member

    I had to stop the medication. I was getting sicker and sicker from the side-effects.

    I'll have to detail another time b/c I'm way too sick right now.

    I will say, that I was a total ZOMBIE ALL DAY.....it didn't wear off until around 8:00pm at night......regardless that they say the drug is out of your system in 4 hours!

    I'll detail more at another time.....scapper

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