xyrem use

[<leelu>]

interested in talking to anyone who has used xyrem for alpha intrusion sleep disorder.

[Ineedsleepnow]

I have been on Xyrem since 9/03. I was recently asked if I would be apart trial study that meant I would have to go off Xyrem for 12 weeks. I declined the offer. It is expensive, as it's not FDA approved for Alpha Intrusion. It's worth every penny. I also take Ambien and use a CPAP (and other meds). I would have to say the hardest part is adjusting to waking up at a certain time, but it's getting easier. I hate alarm clocks! The other adjustment problem has been with dinner time, as I always work late. I do hope this has been helpful. When I started the medication there was no one else who was using it for Alpha Intrusion without Fibo.

PS
I would really like to know how much Alpha is occurring now, but I have no desire to have yet a 4th sleep study.

[Conway]

I have been taking Xyrem for several months for fibromyalgia and alpha intrusion. What would you like to know?

Conway

[okie-girl]

how much has the xyrem helped the fibro

[Conway]

After 6 weeks on xyrem I noticed that I wasn't having any flares and I had more mobility in my neck.

I've been taking it since November, and still have had no flares. While I don't like taking any drug, I would hate to give this one up because I feel so much better.

Conway

[<michael>]

Hi,

I've been using Xyrem for the past year. I have CFS and my sleep had worsened in the past few years. A sleep study only found that I had no stage3/4 but no apnea, etc.

In the past six months I've had to take more and more doses of Xyrem to get enough sleep. At first it was 2-3 doses a night, now it's 6-7. I sleep most of the day. Up until last week, I managed to get restorative sleep about half the week. The past week, nada. No matter how many hours I sleep. So I cut back to only 3 doses of Xyrem, get up earlier and feel like hell. I'm taking a hypnotic and a benzo and two sedating anti-depressants.

Stanford wants me to do yet another sleep study. I really don't think apnea is the issue and I don't think CBT specialists will understand the CFS component and the drug component.

Basically, I'm freaked as even when I do get sufficient sleep I'm still sick with CFS.

One of my docs was going to hospitalize me but we are in a big dispute about insurance and he's blaming me. My other docs don't really seem to have a plan for me.

I'm scared.

If I don't take Xyrem I don't sleep at all. I tried a few weeks ago and just lay in bed until 8am, got up, made coffee, had a manic buzz for two hours then crashed, slept 3 hours and woke feeling like hell.

I don't know if the disease - CFS is defeating the meds -- or whether the meds are making it all worse.

What I hate the most is non-restorative sleep, which leaves me feeling even worse than not sleeping. When I haven't slept well, I'm not sleepy the next day, it's more like being in pain. And I can't seem to even nap.

Any ideas?

thanks,

michael

[Conway]

Michael,

I would have the sleep study. Maybe they can come up with some other drug that might help you.

I would hope that they let you take the Xyrem during the study so that they can see what it is doing for you (if they can tell that sort of thing in a study).

Don't be afraid. I feel that if you are determined to get some sleep and are willing to undergo the tests, something will be found to help you.

At least I hope so.

Conwaysomething

[Conway]

Michael again,

I'm a little confused. How much Xyrem are you taking at one time?

When I first started, I didn't sleep for very long after each of 2 doses, so my doctor increased the mls that I take with each dose.

I am taking 7 ml, and sleeping 1 - 2 hours
followed by 6 ml, and sleeping 2 - 3 hours.

This seems to be enough sleep for me to help my overall body pain and give me more mobility in my neck.

But most importantly, I don't fall asleep during the day anymore.

Conway PS I don't know why the word "something" was in italics after my name. The word was earlier in the post and needed italics there.


Conway

[<michael>]

Conway,

I take Xyrem in 7 or 8ml doses. Each gives me 1.5-3 hours of sleep. But I need a lot of sleep.When I first started Xyrem I was falling asleep okay, taking remeron and doxepin, and took 2-3 Xyrem doses. Back in September, I stopped falling asleep okay and started taking more sleep meds to fall asleep. Now I need those meds plus Xyrem to fall asleep, and end up taking a total of 35ml to 45ml to sleep. If I don't take Xyrem now I don't sleep at all.

One of my docs wants to hospitalize me to get me off all meds and start with a clean slate. The good part is he knows about CFS and about detox, but the bad part is I'm in insurance-hell right now and he's part of the problem.

I'm getting new insurance soon, if nothing goes wrong, and then I'll see if I still have a working relationship with him or not. If not,I don't know what I'll do. I'm clearly on too many meds. And I'm getting too much non-restorative sleep, even with Xyrem, but I don't think I can get off all this stuff by myself, especially with a bad case of CFS, so that when I sleep poorly, I'm very very impaired.

And I don't get daytime sleepiness. No naps. Nada. I just feel deeply exhausted, like a raw nerve ending, too.

I'll probably do another sleep lab once I'm on new insurance, although I had one done 3 years ago and there was no sleep apnea. But Stanford does a tube up yournose and down your throat (ugh) to test for a more subtle form of it. I still think it's all CFS related and maybe worsened by the pill combos I'm on, but who really knows.

It's just a kind of hell that I'm in.

michael

[Conway]

Michael,

That is a lot of Xyrem!! I can't imagine why you are not sleeping.

It's not my business, but how can you afford that much Xyrem? I pay $468.00 per month for it. Insurance covers very little of that. I can't imagine having to pay for anymore Xyrem than I do!

Have you tried adding Restoril? I used to be able to sleep with it before I got the Xyrem.

Conway

[<michael>]

I'm taking restoril, zopicone (from canada, a hypnotic like ambien) I alternate them one night one the other night the other. Also 5mg valium, Soma, and 3 sedating anti depressants: remeron, doxepin, trazodone.

Which is why one of my docs wanted to hospitalize me to get off meds and start over. But I'm running into problems getting new insurance. As of today, I have no insurance. I'm really scrambline with my brain fried from non restorative sleep.

About the costs. My insurance was paying 80% until last April. Now I'm in a dispute with them and they've held back all my claims. It's not about Xyrem. It's about a diagnostic code my dr. used which triggered they're asking for 5 years back records to ascertain my 'eligibility' for this plan (it's a temporary plan that ended June 30 and can't be renewed for a year).

I don't know why my doc won't send the records, but he just won't so I've been putting it all on my credit card in the hope that eventually I'll get paid. But as of now, it's all out of pocket and I can't really expect the new insurance to pay for off-label use at the rate I'm using it.

One of my stocks went up a lot recently, so I have some savings again, but I'm on a small private disability and I can't really be spending my savings on Xyrem, which isn't working very well even at high total doses.

I'm thinking of just stopping the Xyrem for a few nights and seeing if my natural falling asleep mechinism kicks in. I've stopped for single nights (twice) and just didn't sleep at all, eventually collapsing into sleep the next day for 2-3 hours, waking and feeling like hell. But maybe if I push it to a few nights. . . it's all got me pretty scared.

My other doc had me try Keppra, a newer anti seizure drug. It helped me sleep more easily, but it was still non restorative.

My docs' thinking is that the non-restorative sleep is just the CFS disease mechanism trumping even Xyrem and/or one or more of the meds I'm taking is having an advese effect as a solo med or in combination with the others.

I think that's the picture.

thanks, btw, for replying to my messages.

michael

[<michael>]

Conway,

one more thing: I've always need a lot of sleep. Last fall, I needed nine restorative hours, now it's more. So 2-3 doses of Xyrem were never enough. I was using less Xyrem because the remeron/doxepin put me to sleep okay. Back last Sept. that stopped suddenly, and I started adding the other meds at bedtime just to fall asleep. They worked up until 2 months ago, when I needed all those meds AND Xyrem, just to fall asleep.

michael

[<michael>]

Conway,

if you want, back channel me at : msa0001@aol.com

michael

[Gayle]

Michael,
Is there ANY way you can get a hospitalization to detox? I was looking at the combo of meds you are on and it really looks like you need a complete washout done in a controlled, safe environment to come off of the meds at a faster rate and with backup in case of any problems (i.e., headaches, feeling like flu, seizures, etc.). Especially since you are taking a benzo, three anti-depressants, Soma, and short-acting sleep meds along with GHB. The dosing of GHB along with the short-acting sleep meds is troublesome. At least your doctors will be able to get a clearer picture of your sleep problems without the meds complicating the picture. At this point, it doesn't seem like another sleep study would give a true picture of the problem. It also sounds as though your circadian rhythms have been thrown completely off. I hope you can get your insurance straightened out or else apply for medical assistance to aid you in getting the medical attention your case warrants. Doctor's personality or not--the issue boils down to you getting the medical help you need sooner than later. Please, please let us know how you are doing in the days, weeks, months to come. PS. Perhaps www.needymeds.com would be a useful resource. Here's to getting the help you need, all the very best, Gayle

[<michael>]

Gayle,

thanks for the support. you have summed it up pretty well. As of July 1 I have no health insurance. I thought I had a way to get on a plan that would be okay for this kind of hospitalization, but it ran in to snags. I'll know better Tues or Weds if it will work out.

It really comes down to what part of the sleep problem is caused by meds and what part by the disease process. But the latter can't be judged without getting off all the meds. And I can't see doing it alone at home. That said, for what little good it is doing me, I just can't afford the Xyrem much longer. It does make me sleep, but it's almost always, now, non restorative. But if I stop, as I have twice, I didn't sleep at all.

What a mess. I think my doctor said that Xyrem doesn't have to be tappered when going off, but I need to double check that.

I'm open to any constructive ideas, or just plain support, as this is awful.

michael