Anyone taking Xyrem?

[crazycatnapper]

I'm newly diagnosed with narc, and I could not tolerate Provigil at all, so my specialist has started the paperwork for Xyrem. I should know by now not to get my hopes up about a drug that may actually work, but I am. I'm rather afraid I will get depressed since it says to use caution with people who have suffered from depression, but I doubt I could feel any worse than I do already, so I'm going to try it.

I have not found much at all about this drug on these boards. Is there anyone who has experience (good, bad or ugly) with it? I have to go in next week for patient "training" and sign papers so the drug can be prescribed to me. I do have a little high blood pressure, but nothing major, so I'm not too worried about that aspect of it; however, the total loss of control some have (peeing in bed) make me freak out somewhat.

Most other stimulants are not a first round option for me due to anxiety and the fact I have an ascending aortic aneurysm. Major jumpiness or blood pressure spikes are really a matter of life/death, and something I don't want to risk until I am out of other options. I've read as much as I can on the web, but would like real stories from real people.

Thanks

[HaloGirl66]

I don't think I have seen anyone on here mention they are taking/have taken Xyrem before, so I don't know how many replies you will get. Hopefully there may be someone on here I am unaware of.

I've seen some of the folks at the forums on the http://www.talkaboutsleep.com website talk about Xyrem before, so I would suggest them as a resource.

If you decide to try it, it would be great if you would share your experience with us.

[crazycatnapper]

I read several other narc boards, but I've not found many others who suffer from anxiety like I do, so I was hoping to find some people here who had used Xyrem.

I see my doc tomorrow and hopefully will have the Rx in a week or two. All kinds of paperwork has to be approved and there is only one place that dispenses the stuff, so it has to be shipped. I'm ready to try it although I'm also kind of scared. It's a very powerful drug. Actually, that just made me laugh because Xanax is a powerful drug and so was Parnate that I took forever and I didn't worry as much about them as I am about Xyrem. I suppose it's because there has been so much negative propoganda out there about it.

I will glady post my experiences with it once I begin. I have to give up my Xanax and I do worry about rebound anxiety and still have to discuss coping strategies with my doc since I can't take other CNS drugs with Xyrem (the ones for anxiety anyway). I am new to the boards but notice there is a blog section, so maybe I'll blog about my Xyrem experiences if there is much of anything to report.

Keep fingers crossed that this crap gives me some relief and I get my life back. I'm so tired of being tired.

[HaloGirl66]

I read several other narc boards, but I've not found many others who suffer from anxiety like I do, so I was hoping to find some people here who had used Xyrem.

I see my doc tomorrow and hopefully will have the Rx in a week or two. All kinds of paperwork has to be approved and there is only one place that dispenses the stuff, so it has to be shipped. I'm ready to try it although I'm also kind of scared. It's a very powerful drug. Actually, that just made me laugh because Xanax is a powerful drug and so was Parnate that I took forever and I didn't worry as much about them as I am about Xyrem. I suppose it's because there has been so much negative propoganda out there about it.

I will glady post my experiences with it once I begin. I have to give up my Xanax and I do worry about rebound anxiety and still have to discuss coping strategies with my doc since I can't take other CNS drugs with Xyrem (the ones for anxiety anyway). I am new to the boards but notice there is a blog section, so maybe I'll blog about my Xyrem experiences if there is much of anything to report.

Keep fingers crossed that this crap gives me some relief and I get my life back. I'm so tired of being tired.

We will definitely keep our fingers crossed for you

[crazycatnapper]

Ok, Xyrem arrived this AM so tonight is the night. I'm excited and scared shitless at the same time. Getting this stuff is a major pain in the ass and thank God I have insurance that is decent so I only have to make a co-pay. A 26 day supply has a bill of $553.08! Yowza. And BTW, that is the initial, tiny dose price. I hear it gets up to about $900 per month at the normal dose Rx

Here's hoping my brain works tomorrow and I don't get some really freaky side effects tonight. I am so looking forward to being able to wake up. I've got my Kool Aid ready and can't wait until bedtime to knock back this horrible tasting stuff. Another narc buddy from a different internet board started hers last night and said that even after one dose it's amazing how much better she feels. Cheers!!

[HaloGirl66]

Ok, Xyrem arrived this AM so tonight is the night. I'm excited and scared shitless at the same time. Getting this stuff is a major pain in the ass and thank God I have insurance that is decent so I only have to make a co-pay. A 26 day supply has a bill of $553.08! Yowza. And BTW, that is the initial, tiny dose price. I hear it gets up to about $900 per month at the normal dose Rx

Here's hoping my brain works tomorrow and I don't get some really freaky side effects tonight. I am so looking forward to being able to wake up. I've got my Kool Aid ready and can't wait until bedtime to knock back this horrible tasting stuff. Another narc buddy from a different internet board started hers last night and said that even after one dose it's amazing how much better she feels. Cheers!!

crazycatnapper - how did your first night go? Are you feeling better during the day after?

[crazycatnapper]

There is something really wrong with me today. I am NOT sleepy!!! I am tired, but I cannot sleep nor do I have a desire to. I haven't felt like this in a long time and it feels so odd.

I mixed my Xyrem with sugar free Kool Aid and stuck both doses in the freezer for about half hour before I went to bed. This stuff tastes horrid and even slushy cold cherry Kool Aid didn't help much. The nurse who called this AM to follow up (they really stay in touch and keep all aspects of this therapy closely monitored) said she's been told lemon lime is the best to block the taste, so I'm gonna try that next.

I didn't even sleep after the first dose. I think my anxiety was fairly high. LOL I did feel really relaxed, but I had full control so it's not as scary as some of the opponents want everyone to believe. My stomach was slightly upset, but I tend to get that with any drug that has the slightest hint of causing nausea. I did have quite a bit of back pain, which is on the list of side effects too. The worst thing was that I had to pee a LOT. Tonight I'm not having any liquids for a while before bed.

I took the second dose 2 1/2 hours later and was out like the dead. Too bad I had to pee an hour later. Grrr. However, that hour was the best sleep I've had in decades. I did fall back asleep and got several more hours before I woke up. And I woke up naturally and couldn't go back to sleep. This NEVER happens. As I said, I'm still tired due to only sleeping about four to five hours, but I'm not sleepy and there is a difference. My mind is awake and I can think. My fiance says he notices a huge difference in my mood too. I guess getting even a little stage 3 and 4 sleep works miracles. Oh wait...this is how a "normal" person would feel. LOL

I can't wait until time for bed tonight. From what I've heard, once you get over the "holy shit I'm worried" stage, your sleep gets better. And now that I know I can and will wake up if I have to pee, I feel much more relieved. I will either make updates here or start a blog, probably the latter so others can learn how my experience is going. I have hope (for the first time in a long time) that this may work and I may get a chance to feel alive again.

I'll keep writing just in case there is someone else out there who suffers from anxiety and narcolepy. I did take .25 mg of Xanax late this afternoon, but overall I've felt great and only suffered a tiny amount of anxiety.

[HaloGirl66]

Crazycatnapper - so glad to hear your first night went pretty well. It is such a miracle when those of us on this forum get a few hours of good sleep - I hope it keeps working

[SunshineOutside]

About six months ago I tried Xyreme because I was so sleepy all day long. It did not work for me because I think that I was on too many meds and the combination of them. I was scared to take it at first too but nothing bad ever happened to me. Good luck with it!