where are the xyrem people?

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hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 8/26/2008 10:52 AM (GMT -7)   
I really want to know the good, the bad, and the ugly of this medication, well besides the obvious that everyone knows.  There's a little out there on the web but not nearly enough to make the very best informed decision.  One of the leading researchers on fibro, Dr. Lapp, mentions three medications that allow fibro paitients with alpha intrusion to go into stage four sleep to get the benefits of the rest and healing that take place during this stage.  Xyrem was one of them.  Trazedone was another and I can't remember the third right now.  I have tried trazedone in the past and cannot sleep on it--got wired.  Getting desperate for restorative sleep and have tried a ton of things already.  I'm willing to go through those legal hoops and pay the cost of Xyrem if it will help me sleep.  For those that take it, do you always follow through with the second dose four hours later and if you don't, do you find your sleep disrupted?  It's not supposed to cause hangover but I don't believe that.  Do you wake up feeling refreshed or chewed up and spit out?
Holly

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 8/26/2008 7:30 PM (GMT -7)   
Hi there Holly, I am a xyrem person. I have been on it now for about 1 1/2 years. For me xyrem has been the best thing I've done for my fibro. I had a sleep study done first and found all sorts of abnormalities (no sleep apnea though). I finally understood why I didn't feel rested in the mornings and had to drag myself through the day. After my sleep study I tried other sleep aids first but with little success or side effects. I was nervous to try the xyrem because of its sorted past but the sleep specialist, who believes that fibro is actually a sleep disorder, told me that I would get delta sleep by using this drug so I decided to go for it. I am so glad I did. My prescribed dose is 3grams to be taken in divided doses 2 1/2- 4 hrs apart. The Doc told me I could take it all at once if I wanted and I tried it but it was too much for my system to handle. I had to get up once after doing that 1 hr after taking it and couldn't barely walk. Scared me but the doc said that was to be expected. He then told me to go back to the divided dose but don't bother to set alarm clock to wake up in 4 hrs. If I woke up within that time frame he told me to go ahead and take the second dose if I wanted to. Very rarely do I wake up until after that time usually to go to bathroom and am able to fall right back to sleep without that second dose. I fall asleep quickly (often before I finish my prayers). I basically do not have hang over problems because it is processed so rapidly by the body. It tells you to take it 2 hrs after eating and I highly recommend that. If I eat and don't wait the 2 hrs, then I do feel a little groggy in the am. So I take 1/2 of the lowest recommended dose and I feel much better. Not every night is "perfect" but I normally feel like I actully slept and wake up refreshed with some energy. The biggest drawback is the expense which you already know about. The pharmacy is pretty good about delivering on time but an adult must be there to sign for it, they will not leave it unaccounted for since it is a controlled substance. IMHO I think every fibro patient should have a sleep study done and if warranted should consider the use of xyrem. It has been a God-send for me. I'm so glad I got over my misgivings about taking it. Hope this helps and if you have any more questions, please just ask. Lisa

hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 8/27/2008 5:03 AM (GMT -7)   
Thanks Lisa. That does help. My sleep lab is in three weeks. I'm actually having five sleep labs because I'm in a research study. I'm not sure which of my doctors to approach about xyrem but I'm thinking my psychiatrist would be the one most likely to go for it. I haven't checked with my insurance either to see how much if any they cover. Because of the potential expense, I was wondering if it is okay to take it every other night or every third night. I want to feel rested every day, obviously, but in this state of desperation I'd go for a couple of good nights a week. In order to qualify, do I have to prove alpha intrusion or lack of stage four? Do I have to find a doc who is certified to prescribe it? does the doc send it in or do I send it in with a check? How long does all of that take? In the meantime, I'm thinking about HTP-5, though there are some contraindications with current meds I'm on. Last night I slept five hours after three nights of an hour and a half just by drugging myself into oblivion. I took a double dose of clonipin, 4 Advil PM, melatonin, valerian root, Natrasleep (combo of several herbs), and a double dose of liquid cold medication. Yes, I'm that desperate. I haven't read that much really bad reactions to xyrem--well, I don't plan to date while I'm on it LOL. thanks so much for your help on this.
Holly

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 8/27/2008 8:25 AM (GMT -7)   
Holly, my sleep specialist prescribed the xyrem for me. He didn't hesitate at all. Of course it was his idea. If you have a dr that has been helping with your fibro symptoms they should be able, I believe, to prescribe it for you. I don't think the dr has to be certified to prescribe it. I don't know for sure though. The biggest problem is that not many are familiar with its use to help fibro patients sleep. Xyrem is in clinical trials right now to be labeled for the treatment of fibro but dr's can prescribe any drug pretty much for off-label use. That's how I am able to get it because I don't have narcolepsy which is xyrem's labeled use. It would be better to take it every night to get the benefit of the delta sleep because it is in delta that our bodies repair themselves from the wear and tear of the day but there have been nights that I don't take it because I ate too late and did OK. You don't get hooked on it like a narcotic. My sleep doc even told me if later this year I wanted to try and go without it to give it a try. I think his reasoning is that he believes the xyrem can help restore the proper sleep cycles after a period of time of using it. One way to cut down on the expense is to be able to get the benefits without having to take a huge dose. I take 1/2 of the lowest recommended dose but do just fine with that so 1 bottle lasts me 2 months. Everyone is different obviously but ask your dr about starting low and adjusting up if needed. As to how you "qualify" for it I don't know the specifics. I know for myself I had alpha intrusions to the point that I "woke up" 14 times during the study and had reduced stage 3 delta and no stage 4 delta at all. The technicians asked if I slept like that all the time and I said yes. They pretty much shook their heads at that. The dr sends in the prescription. I can't remember how long it took that first time to get things set up but it wasn't forever. Then you just call the pharmacy about a week before you need more and they will set up a time and date for you to get your next shipment. That part is pretty easy except for the part that you have to sign for it. I know a few times the shipment got delayed because of bad weather so I ended up wasting time waiting for it to show up and it didn't. That is annoying but what are you going to do? Please be careful taking all that OTC stuff. Wow. That makes me nervous just reading it! I know you are in desparate need of sleep but I don't think mixing all that stuff is a good idea especially if you are on scripts. Take care and try to be patient. I know that is difficult. Oh, I thought of another thing I noticed after taking Xyrem. If I take my dose and then try to stay awake long enough to watch the end of the movie or finish a conversation, I end up with a terrible headache probably form trying to "fight" the effects of the drug. But once I stop, I fall asleep and headache is gone. Good luck with your sleep studies. Tell us about the research you are a part of. Hope I answered your questions. If you think of more, just let me know. I think it is important to get the word out about the potential that xyrem has for helping us fibro patients. Sleep is a wonderful thing. May you get some very soon. Lisa

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/27/2008 1:47 PM (GMT -7)   
I am talking to my pain clinic about it Friday. Is it true that Xyrem basically turns into your bodies own molecules (or something like that)? I read up on it once and it seemed pretty safe as opposed to Lyrica or Any of the other drugs.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 8/27/2008 6:31 PM (GMT -7)   
Hi Stephanie,
I don't know the answer to your question. Xyrem does have the possibility of side effects just like any other drug. That I do know. It has a short half-life so doesn't stay in your system as long as some other sleeping drugs so maybe safer? I don't know. From what I understand though Lyrica is more for the pain aspect of fibro but does helps with sleep. Xyrem on the other hand helps you sleep with the benefit of less fatigue and less pain because your body gets a chance to heal up some during delta sleep. If you want more info about it, I suggest going to www.xyrem.com. That site does not talk about using it for fibro but the general info still applies such as dosing, side effects, etc. I don't understand how it works but i do know for myself that it does work. Let us know what the pain clinic tells you on Friday. Lisa Oh I just remember a possible response to your question maybe. I believe our bodies do make the components of xyrem naturally so maybe that's what you remember reading.

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/28/2008 10:02 AM (GMT -7)   
Thanks geckogirl! I knew I had read something on that. I will check the site and let you know what they say tomorrow! Appreciate the help.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong

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