Xyrem for sleep – the pillow talk

Posted: January 01 2005    Post subject: xyrem for insomnia

I have recently been using xyrem for chronic, intermittent insomnia and thought I’d share my experience thus far.

I first used it for 3 weeks last summer, then stopped and only started up again about 6 weeks ago. On the plus side: (1) once you find the minimum dosage that will work, it AWAYS works; (2) it produces a very sound sleep (it’s supposed to actually increase both deep and REM sleep; (3) it pretty consistently gives me 6-6.5 hrs/nite, which for me is quite adequate.(4) at least for relatively short periods, it does not appear to cause physical dependence (I stopped cold turkey after my first 3-week stint last summer and had no problem resuming normal sleep.)

On the down side: (1) it will tend to produce a certain amount of spaciness or confusion upon awakening. This can be minimized by playing with the dosage and is usually gone within an hour or two. (2) it’s packed with sodium, which might be a problem for some people. (3) you do have to take it in two divided doses, which requires getting up during the night.

If you decide to give this a try, be prepared for a bit of trial and error in getting the dosage right. Be patient and cautious. It is VERY dose-dependent. Start low and work up gradually. The recommended inital starting dose of 4.5 grams/nite is not enough for most people, I am currently at 6.5 grms. Aim for the lowest dosage that will do the trick. Don’t feel that you must make each of the two nightly doses equal. Since my problem is onset insomnia, I front load by taking 3.75 at bedtime and 2.75 during the middle of the night. (The lower second dose helps with the morning spaciness too). I would ignore the instructions to set your alarm — when you wake up and can’t get back to sleep, THEN it’s time for the second dose.

So far this seems so much better than ambien and the benzos, which (as we all know) are worthless crap in the long run.

Posted: January 09 2005    Post subject: xyrem for insomnia

It was good to hear about your experience with Xyrem. My doctor wants me to consider trying it. I’m not really narcoleptic, but have a severe nonrestorative sleep disorder with daytime hypersomnolence. I also have dystonia. Currently I’m taking Seroquel, Klonopin and Provigil. The hope is that Xyrem would take the place of all 3. I do have a couple of questions (please bear with me if I don’t know the procedures; this is my first time). How expensive is Xyrem? I know you have to buy it from the drug company because of the abuse factor. And, do you always have to take two doses? It sounds so strange to hear that you must set an alarm and take a second dose. Thanks for any help you can give me.

Posted: January 10 2005    Post subject: xyrem for insomnia

Thanks, Michael. I had read your post. Have you tried a single dose, or do you always wake up to take the 2nd dose? I’m not thrilled to have to set an alarm, and I know my husband wouldn’t be.

Does this allow you to be awake all day without Provigil or 8000 cups of coffee? Do you have any idea of the cost of Xyrem? I have no Rx coverage, and am hoping this would eliminate my Seroquel, Klonopin and Provigil. The drug costs would kill me if I had to continue these others. Seroquel and Provigil are a fortune, even through Canada if I can get them there. Thanks.

Posted: January 18 2005    Post subject: xyrem for insomnia

Thanks for the information about Xyrem. I have been using klonopin and would like to find something else that produces better quality of sleep. Has this drug helped over a period of time?
melbasmith@multipro.com

Posted: February 05 2005    Post subject: xyrem for insomnia

Sorry for the late reply — I’ve been out of the country for the last few weeks.

1. Unfortunately this drug is ABSURDLY EXPENSIVE. I’m lucky that my insurance covers it. Thank the politicians and drug warrior types for that. However, I think that if it works for you, it should be all you’d need for sleep. But check with your doctor.

2. I am alert and awake all day (after the initial brief spaciness wears off). It is actually supposed to increase the quality of your sleep (esp. deep and REM sleep).

3. I don’t understand why the company instructs you to set an alarm for the second dose. I have never done this. A single dose will normally get you 2.5-4 hrs/sleep, at which time you will wake up on your own. Then just take the second dose.

4. I have been taking it for nearly 3 months. It has worked every night. Once you find the ideal dosage, you should never have to adjust it.

Good luck to all of you. If you can possibly try this, I strongly urge you to.

Posted: February 09 2005    Post subject: xyrem for insomnia

hmmm im not to keen on using it to be honest.
The problem with xyrem is that when it wares off you end up having very high dopamine levels as when ghb wares off your dopamine goes very high. This can make you feel edgy and extra dopamine tires you out more.
Sorry to go about it but olanzapine blocks dopamine like xyrem but has no rebound afterwards.

Posted: February 09 2005    Post subject: xyrem for insomnia

Oh yea let me tell you a story about GHB/xyrem.
GHB is a naturally occuring drug. Its in our bodies in small amounts thus it cant be patented.
But in a stupid loophole in the law if a drug is illegal it can be patented even if its naturally occuring.
So what did the evil FDA do? They made GHB illegal so that a drug company could patent it and slip the FDA money!
Now A 100 litre drum of GBL that makes GHB costs about 500 pounds. That means with 100 litre drum GHB costs 1000 pounds for about 150 kilos of GHB. Thats about 1 pound for 150 grams of ghb. Now if you buy in greater bulk that 100 litre drums of GBL it would be even cheaper, about 30-40 pence or 50-60 cents for 150 grams!!!
And what is the company who makes GHB charging? About 100 pounds or 150 dollars for 150 grams isnt it? Thats about 20000% profit margin on a natural substance that shouldnt even be allowed to be patented!!!

Posted: February 11 2005    Post subject: xyrem for insomnia

There’s an interesting article on GHB (Xyrem) at http://www.ceri.com/feature.htm

I can’t vouch for its reliability but the author is (I think) fairly well respected in”alternative” health circles.

Posted: February 13 2005    Post subject: xyrem for insomnia

Advocates For Sleep offers a toll free number 1-800-823-8893 which allows you to speak patient to patient about your sleep disorder and Xyrem use. If you have questions about Xyrem from the patient perspective, give them a call.

Posted: February 20 2005    Post subject: xyrem for insomnia

Hello all,

I’ve just been prescribed Xyrem by my alternative doc. He told me all about the evil FDA and how they banned GHB to sell it at ridiculous prices through one pharmacy. Unfortunately, where else am I to get it?? I am not about to buy street drugs that aren’t regulated!

I think GHB has a bad rap because the FDA and our US government did so to make it illegal. With the exception of it’s price, I think it’s a wonderful sleep aid and not addictive like all those stupid tranqs the docs have loaded me up on for years.

I have just started using Xyrem and have not found the right dose yet, but I am confident I will.

My doc started me at 5.0 grams/night, but this doesn’t seem to work very well. It takes me a 1/2 hour to fall asleep and I only sleep for 2 hours, then wake up. The 2nd dose only keeps me asleep for 3 hours. So I have not yet been getting a good night’s deep, refreshing sleep as I know this drug produces.

Any advice/experience on dosing? I am of course going to call the doc Monday, but I was curious as to others’ experiences was dosing.

Thanks!
Kathleen

Posted: February 20 2005    Post subject: xyrem for insomnia

Kathleen,

5 grms/nite is a very low dose. The maximum that is normally prescribed is 9 gms, nearly double what you are taking. Don’t change without consulting your doctor but I’m sure he’ll suggest increasing it. Just do it slowly. Good luck.

Posted: February 21 2005    Post subject: xyrem for insomnia

Thank you for your help, Michael. I am calling the doc tomorrow for sure but in the meantime I did decide to take 5 and 1/2 grams tonight…still paltry and not likely to harm me! But still a very slow increase, as another poster here suggested going very slowly.

Also, the pharmacist told me that it takes 2-3 days to really work, to change your sleep patterns. Is that true? My doctor didn’t tell me that. I know the first night I was high as a kite, lol, probably b/c I didn’t fall asleep for so long and just lay there buzzing! But the 2nd night I didn’t feel that way, although I certainly didn’t sleep any better. I figure the dose is way too low. I’m a tough cookie. Four 10 mg Ambiens and 4 mg Klonopins haven’t knocked me out on my worst nights!

Kathleen

Posted: February 21 2005    Post subject: xyrem for insomnia

Oops! That other poster was in fact you!

Kathleen

Posted: February 21 2005    Post subject: xyrem for insomnia

quote:

Originally posted by michaelw:

once you find the minimum dosage that will work, it AWAYS works; (2) it produces a very sound sleep (it’s supposed to actually increase both deep and REM sleep; (3) it pretty consistently gives me 6-6.5 hrs/nite, which for me is quite adequate.of 4.5 grams/nite is not enough for most people, I am currently at 6.5 grms.

I wonder if it’s possible to develop tolerance for this initially wonderfull drug? I’ve been using xyrem for insomnia and severe OSA for over 6 months, but experience reduced response to it.

I worked my total dose/night from 2.5g to currently 8g (@200 punds). First I ALLWAYS got 2.5-3.5h of sleep after each dose, but now the sleep duration after xyrem is irregular and between 0-3.5h (sometimes I cannot sleep at all after xyrem). I called Orphan with this question; they have cataplexy clinical trial data for max. 12 months and in such time frame did not find any evidence of increasing tolerance.

Posted: February 21 2005    Post subject: xyrem for insomnia

Andy, I hope your experience is atypical. I’m at the three-month mark and still at 6.5 gms.

Kathleen, it does sound like your insomnia is much worse than mine, so probably you will require a higher dose. Again, it’s best to go with your doctor’s recommendations.

Let’s face it, though, having to rely on any sleep med is lousy — it’s just dealing with the symptom, not the underlying physical problem. (Of course that’s a lot better than not dealing with either symptom or problem!) Probably for many people, insomnia is caused by cortisol levels that have gotten out of whack — too low during the day and too high at night. I’m presently working with a doctor who hopes to “reset” my adrenal glands to get them producing cortisol normally — high in the morning, gradually decreasing during the evening. We’ll see what happens.