Hard Getting Used To Xyrem!

[Topaz]

Hello, MarciMoo. I am taking Xyrem to treat excessive daytime sleepiness associated with ideopathic hypersomnia. The recommended starting dose is 4.5 ml x 2 per night. Like you, my doctor started me at 6 ml x 2 per night. I think his clinical experience has been that most patients can handle this starting dose. However, it turned out that it was way too high for me to start. I had just about every side effect in the book, headaches, nausea, dizziness, etc. Then when these side effects passed and I increased the dosage, I developed more side effects. Eventually, I completely went off for a week and then started anew at the recommended dose of 4.5 ml x 2 and am in the process of increasing the dosage more slowly. This has worked out much better for me. You might want to consider giving it another try.

[MarciMoo]

Thanks Topaz. I've been off the Xyrem for a while now. I've been taking Zanaflex for a few weeks - 8 mg/night. It's a muscle relaxant. It started out working quite well, but now the effects are waning. I think my body might just be getting too used to the drug. The worst side effect of the Xyrem was the pain in my hands and elbows. Although I'm tempted to try again at the lower dose, I'm worried that it would give me the same problems. Did you get any joint pain from the Xyrem? When I called the Success Line, the pharmacist told me that joint pain was a very rare side effect.

[SleepySteph]

Well, it's me again.

I'm having extremely debilitating pain, and it got even worse when I went from 6 to 7.5 mls. But now the doc thinks I should take 9!

They have limited experience at that office. The few people taking Xyrem seemed to have no problems starting at a higher dose, sleeping eight hours a night, and having no side effects. I don't get it.

I'm going to call Orphan today to speak to a pharmacist about this. I mean, the pain isn't just fibro pain, either. I'm having a lot of joint, nerve, and cramping pain. It's very unusual. I can hardly function at all, and I can't take anything for pain (long history of problems with pain meds, or they don't work).

I'm breaking out terribly, also. And I constantly smell this weird smell, and have this associated taste. It's like a burnt smell. The nausea is now so bad during the day that I'm hardly eating. At first, it was good since I have a history of overeating. And I was making sure that the little I was eating was nutritious. Now, it's a struggle to eat anything.

The NP at the doc's office thinks the pain is just due to the disease (Lyme) getting worse, but that doesn't even make sense at this juncture.

I hope I get the good pharmacist today!

One day at a time.

[MarciMoo]

I'm sorry that your having so much trouble. The pain you're experiencing is NOT Lyme pain of fibro pain. It is the Xyrem. I had the exact same problem. The pain started in my finger joints, then worked it's way up to my shoulders, with severe aching in my forearm muscles too. It was not a fibro flare up, it was the Xyrem. I feel so much better now that I'm off it. It took about a week to get back to normal. (Not that normal is great, but the regular fibro pain felt so much better than the pain from the Xyrem). When I called the Success Line, the pharmacist told me that I had to decide whether the side effects were worth the benefits of the drug. For me, I had to say no. It was awful! My rheumatologist has a lot of experience with Xyrem and when I described my symptoms he took me off it right away. (After a trial of going up on my dose.)

Have you tried Lyrica yet? It has done amazing things for my pain. I too have not had any luck with pain meds, but the Lyrica changed my life. It is the next generation Neurontin. I had no luck with Neurontin, but Lyrica had been amazing. It's also really helped my migraines. My tender points are not as painful and the overall aching that I had is gone. My doctor is so pleased with the results. He says that if I can just get some deep sleep, my life will be amazingly different. He says that I will feel like a new person. Now if I can only find a drug that works.He put me on Zanaflex, which worked for about 2 weeks, but now it's not doing anything. I'm up to 12 mg, which is a pretty high dose and I still don't sleep. I see him next wed and I'm hoping we can try yet another drug for sleep.

[SleepySteph]

Marci: Thank you, and Yes! I know what you mean about the Xyrem pain. I told my husband that I thought I knew pain, but I didn't until I got that Xyrem pain. (And I have severe fibro!)

I dropped my dose to 4.5, and now I have less Xyrem pain. But I'm in withdrawal! (And they say it can't happen; it can.) I've had wrenching gut pain, nausea, shaking, insomnia, restlessness.

I'll stick it out a little longer and see what happens, assuming I do adjust to this level, when I go up in dose. But, like you, if those effects come back stronger at a therapeutic level, it's not worth it to me.

I have to talk to my psychiatrist about Lyrica. See, I'm bipolar, and I take Neurontin for mood. Then again, it isn't great for mood! I really need something for the pain. (Doc says Neurontin isn't good for bipolar, but I've had trouble with others. He may not like Lyrica since it's newer. He likes having experience with a drug.)

I have had sciatica for about ten weeks now, too. Nothing like shooting nerve pain down the leg. Still, even THAT wasn't as bad as the Xyrem pain.

My doctor is pretty clueless about the Xyrem. I'm glad yours isn't.

I hope you find something else for sleep, too. Please keep me posted. I'd like to know how you're doing, and I may need something else, too!

[MarciMoo]

I would really give Lyrica a chance if you're doctor is willing. One of my professors at school was in a clinical trial for Lyrica to treat fibro. It worked wonders for her too. She said that it really helped her sleep too. Then once the trial was over, she had to go back to neurontin because her insurance company wouldn't pay for Lyrica. She was devestated, because the neurontin is not as effective. The benefit of Lyrica is that you can take much lower doses than neurontin, which reduces the chance of side-effects. (That's what the pharm co. says.) I have had no side effects from the Lyrica. I actually went to my general practitoner and asked him to put me on Lyrica. This was before I found my rheumotologist. He had no experience with it either, but was willing to research it for me, since nothing else was working. Maybe your doc will do the same.

Dropping to 4.5 ml of the Lyrica could be causing your restlessness and insomnia. If your underdosed, it can keep you from sleeping.

I'm counting the days until I see my doctor. I am so tired. When I was the pharmacy yesterday I saw a brochure for something called Rozerem. Have you heard anything about that drug? It's a new hypnotic. Must be like Ambien.

[SleepySteph]

Marci: I'm so glad we've been able to help each other!

I definitely want to change tactics completely. I will call my psychiatrist's office tomorrow to leave a message about wanting to switch from Neurontin to Lyrica. And I want to ask him about getting off Xyrem, also. I know the insomnia is from lowering the dose, and three days with no sleep has me very, very weak. But that's besides the point. I still have the Xyrem pain at the lower dose, just not as much of it. I know it's an adverse reaction. Plus, I know Xyrem can be addictive. I've had trouble with withthrawal going to 4.5. I may need a short-term course of a benzo to get me off the Xyrem (since they work on the same pathway). I can't take the benzo long term, though. I've been there and done that!

I've tried trazadone (antidepressant) for sleep before, but I had a paradoxical reaction. I'd be willng to try it again, though. It can promote deep sleep, and maybe I can get off the SSRI that can aggravate mania.

A lot for the psych! I may have to make an earlier appointment than I have scheduled. Hopefully, I can get in as soon as possible.

Let's keep each other updated, okay? We can email if you want: imadiva@ptd.net.

Oh, there is another promising sleep drug coming out probably next year. Right now, it's called gaboxadol. There may be hope yet, even if we find nothing else for sleep in the interim.

Oh, what is a typical dose of Lyrica for pain?

[MarciMoo]

I'm so glad too - this forum has been wonderful. Everybody has been so helpful. And it's nice to know that I'm not alone.

You have to titrate up with Lyrica. I started at 75 mg in the evening. (Lyrica can make you sleepy). Then after a week I went up to 100 in the a.m and 100 in the p.m. for one week. Then it was 100mg in the a.m and 250mg in the p.m. for one week. Finally, it went to 150mg 3x daily, which is an optimum dose. My migraine specialist (a well respected neurologist in the Boston area) also agreed that was a good therapeutic dose. After 1 month at the therapeutic dose, I was a changed woman! Once I went away for the an overnight and I forgot my Lyrica. The rebounding pain was unbelievable. So I know it's working. Sometimes I forget my afternoon dose for a few days in a row and just that decrease has a significant affect on my fibro.

I went off the Xyrem cold turkey. I blamed the side effects on just not sleeping for weeks. It was awful. I know how you are feeling. I'm so sorry.

I haven't tried Trazadone yet, but heard that it helps. I was amitriptyline for a couple of years for sleep. It actually worked pretty well, but I gained 20 pounds from it! I've since lost the 20 pounds over the past few months by going off gluten. I've heard that fibro pain can be exacerbated by a gluten allergy. I wasn't sure if I had a true allergy to wheat, (there is a blood test for celiac disease [gluten allergy]) but since I've been off it, I have felt much better. My blood sugar levels have normalized, the weight fell off, and my cravings for sugar and food in general have been minimized. I almost don't want to have the blood test, because I'd hate to hear I can eat gluten-filled foods again.

Feel free to contact me directly at sakal@comcast.net

[SleepySteph]

Marci: I did!

[Musica]

I've been getting joint pain too, so I started taking a very low dose 2.5 ONCE during the night. It hasn't been that long but the joint pain came back. Maybe too much growth hormone is being produced?