LYRICA??

[doety]

Is anyone taking Lyrica? Pfizer came out with a SHORT study (6 weeks...) that concluded Lyrica helps. If you've taken it, I'm sure we'd all like to hear the results. I took some (75 mg) night before last and still feel the effects. First night I slept until 2 p.m. the next day (well...I hadn't slept in two nights), I didn't take it the second night and still slept through.

[ViewsAskew]

Several of us have tried it - I imagine a search will show results.

It helps me sleep - excellently. Am groggy the next day.

Doesn't control my sensations, though.

I still have some left and use it to help me sleep on nights when I can't.

[badnights]

I do the same - I am saving it for occasional use as a sleeping aid. It made me unbearbly sleepy all the way into the next day without relieving my symptoms at all. I never got above 75 mg because you ahve to titrate up very slowly and I couldnt stand being sleepy all day so after 6 days I quit.

[dogeyed]

Doety, you can try it, can't hurt. I take Lyrica for something else, but the ONLY thing that stops my RLS is opiates, and I've tried all other recommended drug categories. I take opiates for my RLS, and I take Lyrica for my backache, and Klonopin for my panic disorder. Klonopin is a benzodiazepine that helps some people with RLS, and is listed as a category of recommended drugs, but since I was taking it regularly when diagnosed with RLS, I knew it didn't work. As for Lyrica, that was added in a few years ago when my backache got much worse, and it cleared that right up... but whenever I happen to run short on my opiate, my RLS kicks right back in, so even tho I'm on Lyrica, it doesn't stop the RLS from ramping up. But since some people are helped with benzos and I'm not, also could be some will be helpd with Lyrica even tho I'm not.

As for this sleepiness with Lyrica, let's say it does work for your RLS. Well, I can tell you from personal experience with it and what I've read, that the sleepy knock-out the drug gives you, it gradually goes away in time, just as many side effects of drugs do. I am up in the morning and awake all day and I sleep GREAT at night, which Lyrica not only helps with nerve pain (and now maybe RLS for others), but also helps with sleep! Lyrica will also sometimes make a person feel a little unbalanced, but again that goes away with use. About the only problem left with Lyrica is how your insurance covers the cost. One insurance I had, before I went on Medicare, would not cover it, and it is quite expensive, so I had to try a generic cousin Neurontin, and that stuff is AWFUL, side effects bad for me. But when I went on Medicare, it paid for my Lyrica, with co-pay around just $40 or so. So, check w/your insurance.

IF it DOES help with your RLS, everyone will want to know, becuz for SOME people, it may be a lifesaver. It just doesn't help with my particular brand of RLS, which I have a bad back and will always think that's what set off my RLS, which some say that means my RLS is a diff problem related to the spine, but actually mine really is RLS. GG

[doety]

I'm not gonna be telling anybody what to take!! I have been using so many drugs for such a long time, that I've always wondered if I still had RLS or if it was reactions to all the drugs. The Lyrica I hope will take over helping me sleep while I get rid of the Methadone, which has bad side effects for me.
I don't know if this is accurate, but I think of the drugs we take in two categories -- those that treat RLS symptoms (Mirapex, etc.) and those that help get us through the night.
I will try not to take opiates again. FYI I just spent a year getting off of Klonopine (it is one mean drug). I realized that it didn't help RLS and was probably contributing to me feeling sleeping during the daytime. I know lots of doctors still prescribe it for RLS, but I believe it's because they're not keeping up with research. Anyway, I've been off that about 2 1/2 months. One doc said I was still probably withdrawing from it! (The last month of withdrawal was terrible -- and I didn't understand it. When I finally stopped I felt fine for a few days and thought no big deal. But after a few days as the majority left my system, I got to feel the real effects of withdrawl.)
Neurontin made me dizzy and sick at my stomach. I tried different strengths, and nothing worked. So far, so good with Lyrica. I hope I don't have to go up from here -- I was given samples and only have 50 and 75 mg.

I'm glad to hear that the side effects of Lyrica will probably go away after a while. What I'm doing right now is taking a 75 mg of it at night. Right now, I've cut the Methadone by 1/4. Had a few really bad nights but last night it evened out. I hope that will continue -- then I'll continue for a week. At that point, I'll cut back another fourth and so on. That's my plan and my plans don't always work.

I'm also smoking pot if I need it, usually just once a night (if at all), and only one puff. Today's stuff is STRONG.
I hope I can withdraw from Methadone. If and when that happens, and I'm at "ground zero" -- that's when I'll be able to tell what's going on. I was once told I had moderate sleep apnea and moderate RLS. My sleep apnea is being treated. But I would have sworn my RLS was over the top...I've had terrible problems in the last couple of years. It would be so wonderful if my RLS was "moderate," and that the reason I've had such trouble is because of various drugs (hate to say that, but if I knew for sure I might know what to do)

By the way -- any thoughts on Methadone augmenting? I've been told by everyone that it's not possible. But I don't understand the RLS I get in the morning and other times of the day. My only other explanation is that I'm always in withdrawal from Methadone and my body is saying it wants more all the time. It's a giant puzzle to me.

good luck to you!

[rthom]

sorry to hear you are still having so much trouble. Has the dr talked to you about medication to help manage the withdrawal for you? Just a thought, my wed peaks and valleys a few times a day at least two sometimes more, also at night. With your meds decreasing is it possible that you can feel the peaks and valleys more now?
Hope it improves for you.

[badnights]

hmm doety the first thing that occurs to me, you're getting RLS/WED in the morning and at other times, and you're cutting down on your methadone, sure sounds like you are experiencing breakthrough symptoms because your medication is no longer controlling your symptoms. Does that seem reasonable?

However did your doctors decide your RLS was "moderate"? How can they tell when you're on methadone? Do you think perhaps you have severe WED and as the medication is reduced you're starting to feel it more often?

[doety]

Thanks, Beth. I do wonder that. Methadone never did "control my symptoms," it's a pain killer and helped me sleep at first. So I really wasn't taking anything for the WED. (Maybe I'm wrong about Methadone...I think it quit working. I assumed my body wanted more, which I didn't want to do).
At this point, I know nothing. I just want off of Methadone so I can figure out where I am and maybe decide on a direction.
I was told about the "moderate" after a sleep test -- but that makes no sense. So ???
Rthom; the doctor urged me to take Saboxone for withdrawal (they give that to heroin addicts). Maybe I should. But right now my thinking is that I don't want to get off one opiate just to take another that I'd have to withdraw from. Feel free to offer advice. I trust the people on here more than any doctor I've been to.
And: I'm actually feeling very hopeful. I've cut down 1/4, which seems like a big deal to me. I slept pretty well last night. I'll stay at this dosage for a while, then drop down some more. I keep hearing horrible things about withdrawal from Methadone, and maybe I'll be begging for the Saboxone, but I sure hope not.
By the way: one of our discussion board people who takes Methadone has never had any problems stopping it. So maybe I'm an exception. We all know that every one of us is different, that medications affect us differently, etc. I don't want to scare anyone. Thanks for the comments.

[rthom]

doety

There is another medication i was given to help manage the symptoms called clonidine this was dosed out at .1mg 2 times a day. I was also offered subboloxone and like yourself I did not want to take one opiate to get off another. I did not require it much--so either it helped some or i was just feeling better for another reason when i used it--not sure which. Also the pain clinic dr that i see told me that i should be decreasing by 5% not 1/2 etc. etc. etc... I trust this guy, he was really helpful caring and also works as an emerg Dr. the clinic was something he did to help those in need, (at emerg he sees a lot of those )
Hope this helps clarify things a bit, and good luck.

[ViewsAskew]

Doety, what happens when you cut back on the methadone?

I stopped it with no issues related to withdrawal, but had horrible WED symptoms. I'd expect that anyone reducing it would have increased WED symptoms. It may have been helping much more than you think it was.

[doety]

Ann, I really don't know. The last time I tried, when the doctor said "cut it in half tonight, then just stop it," I couldn't sleep at all for days and day , couldn't communicate, went absolutely nuts. Obviously, that was not the way to stop it. I was so scared that I haven't been able to think about it until recently. So, I reduced it somewhat the other night and it wasn't so bad (and added the Lyrica). I'm staying at that dosage for a while.
I'll never know what's what. Anyone (apparently) who withdraws from an opiate gets RLS.
And of course, withdrawing from something that helped me will give me RLS.

[badnights]

Ouch, doety, that's a bit of a misconception. People withdrawing from opiates get RLS-like symptoms, not RLS. I assume you had a diagnosis of RLS/WED before you ever started an opiate, so the following applies to you.

For people who have RLS, the opiate is not just a pain-killer, it actually alleviates the symptoms of RLS, whether they are painful or not. It stops the creepy-crawlies as much as it stops pain. And when you stop taking the opiate, two things happen: 1. you are no longer medicated for RLS, so you feel all those RLS sensations again; 2. you may get a medication withdrawal syndrome that includes nausea, gut problems, sweating, yada yada, and RLS-like symptoms.

So, don't confuse your RLS with a withdrawal syndrome. Unless you never had RLS to begin with.

[doety]

Beth, I've had RLS for about 16 years. I had it when I was pregnant and horribly when I went through menopause. Nobody ever told me that Methadone would actually stop the RLS symptoms. Could you tell me where I could read more about that?
As I've combed various sites trying to get help in withdrawing from Methadone, I saw the thing about getting RLS when withdrawing from an optiate -- you're certainly right that it's not "real" RLS -- It's temporary and not what we have, but feels just the same, I believe
I need to be clear: I'm not being critical of the drug or the people with RLS that it obviously benefits. I just need to get off it because I have breathing problems -- and Methadone is dangerous for people like me. I wish I had done my homework (and wish my doctor had too). I'm hoping info about that will become more widespread.
And getting off Methadone is a big problem. Ann -- I was glad you said that about not taking it made you have bad RLS. I hadn't understood that and thought you had no problem. But evidently, you got off it fairly quickly, I think. I haven't been able to do that. Everywhere I've turned, people say it's worse than kicking heroin, and talk about how awful it is -- it's enough to scare me.I've been trying Lyrica to use instead of Methadone, but I think I'm having bad side effects. At this point, not sure what to do.
I think lots of us probably get into trouble with all these drugs...it's very frustrating.

[ViewsAskew]

Doety, yes, methadone definitely stops the symptoms! It's the only drug I used for a long time. It wasn' t that it helped me sleep. Klonopin knocked me out, but I was awake in my bleariness, with sensations.

All of the opioids stop the symptoms. That's why it's in the algorithm, not because it helps a person sleep.

When I said I had no problem, I meant with withdrawal - vomiting, sweats, nausea, etc. I certainly had the WED! I have that everyday if I'm late taking any medication, let alone stopping it! But the WED was no worse when I stopped it than when I stopped Mirapex or any other opioid I have tried.

My guess is that over the many years you've been treating the WED, it's gotten progressively worse. When you stop the drugs that resolve the symptoms to a great extent, then they are all there, untreated. That is an awful place to be. Especially that part where you realize just how bad it really is.

[dogeyed]

DOETY, hi, I've replied to you one time in this thread that I took Lyrica and gave you a quick run-down on what it might do for you or not. By the way, you had said after you read my post that you weren't going to be telling people what to take, I suppose in response to my saying if Lyrica helped you, be sure to let us all know, but those are almost precisely the words you used in your very first post in this thread, that we'd all like to know! Anyway, I wasn't meaning you should tell anybody to do anything, anymore than I meant such a thing. We RLS people are just people and we suggest stuff, tell our experience with stuff, and have opinions on stuff.

Let's see, where was I? Oh, yes, now, your last post you said you were trying to use Lyrica instead of Methadone and you were having side effects now. I don't know which kind you were having, but as we've already all discussed thoroughly here, some people get side effects from withdrawing from Methadone and opiates, and as we've also said Lyrica takes some getting used to. Anyway, you said you didn't know what you were going to do. I have a suggestion. You are going to get SOME withdrawal each time you cut back on Methadone probably, so no way to get around that. But the Lyrica will help you with that to some degree, as it has sedating qualities. And yet the Lyrica, well, it isn't unpleasant side effects really, that I experienced from taking it at the beginning, rather it was a sleepy, dizzy sort of state I was in for maybe a week, I guess, or so. Actually, this is a good thing when you're getting off Methadone. So, I think you should continue the Lyrica, it's supposed to be increased gradually, and also continue to cut back on the Methadone. You're looking at almost the rest of March to complete getting off Methadone, and all the while Lyrica should be increased. Your doc should have explained and given you enough medicines to increase the Lyrica. It's something like (but don't go by me, ask your doc) 50mg 2x daily for two weeks, then 75mg 2x daily for two weeks, and perhaps 75mg 3x daily from then on, or 100mg 3x as an ending point, which is where I've been for a couple years. See, unless your doc prescribed your full-on dose at the outset, normally people have to increase Lyrica gradually over a period of several weeks, docs usually give a low dose, maybe 25mg or 50mg 1x or 2x a day, and then tell you to go up with that, and then go up again, because if you do NOT increase from a very small dose, you will get strange effects FROM THAT! And by strange, it just plain stops working, and you feel a little down and out of it, but nothing like getting off Methadone does.

The problem with all this is, I do not think the Lyrica will help your RLS at all, but you won't know until you're all the way off the Methadone (plus two weeks). It is actually true that Methadone and opiates literally stop RLS symptoms in their tracks. But, since you don't want to substitute some other opiate for the Methadone, you can ask your doc about easing into Mirapex or one of those advertised drugs for RLS. They also stop the symptoms, but not as consistently as the opiates do. And if you stop Mirapex or one of those type drugs, you will get a return "with a vengeance" of RLS symptoms. So, in general, I think you should make arrangements to see your doc, and in meantime keep cutting back on Methadone, increasing Lyrica a little, and consider asking the doc if you should try Mirapex, perhaps at the end of getting off Methadone, since you don't think you want another opiate. Just some ideas. GG