Lyrica maybe the answer for me.....

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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runkrun
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Post by runkrun »

Sleuth, I sometimes think it's better if we just don't look at the side effects aspect of our medications. Believe me the relief of my RLS symptoms surely out weigh the side effects. I've been on Lyrica 150 mg 3 times a day for about 3 months and have had great success. Yes, there has been some weight gain(5-8 lbs.) and some memory problems. But if I were still experiencing the severe RLS symptoms prior to Lyrica, I think I would have jumped off a tall bridge. You may ask your physician for samples of Lyrica. I know that the company that makes the medication,(PFIZER) are handing out cards to take to your pharmacist for $$ off your prescription. Good luck and hope you get your symptoms under control soon!

Sleuth
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Post by Sleuth »

Thanks. It's just that I've gained 40 pounds this year, primarily due to depression. Being this heavy only depresses me more and the cycle goes on and on. Sooo the thought of putting on even more weight is upsetting.

Maybe when I'm less depressed I can think more clearly. I would most likely stop eating so much as well. I eat because the RLS leaves me with nothing to do, so I eat to fill the time. If I can have a more active life again, I don't think I'd be so obsessed with food.

My doctor didn't have any samples.

Dale

Polar Bear
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Post by Polar Bear »

I know you are talking about Lyrica here, but just to say that I think a side effect of Requip is to put on weight. I have been on it for 3 years and haven't put on weight, I've actually lost 14lbs. (with a little bit of effort but not a real diet)

My point being that with any drug, a side effect doesn't have to definitely present itself.
Betty
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Sleuth
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Post by Sleuth »

Thanks Polar Bear.

It's not just the weight gain, though. I suffer from every single side effect listed already, so taking a medicine that will only add to my discomfort might be a real problem for me.

Dale

Nicky
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Post by Nicky »

Anyone got an answer to my question five posts back? Thanks.
Nicky

SquirmingSusan
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Post by SquirmingSusan »

Nicky, yes the Lyrica should help a bit with the PLMs.

However... When I went to see Dr. Buchfuhrer (http://www.rlshelp.org) a couple weeks ago, he said that there were no studies that linked PLMs to daytime sleepiness. And there have been studies. I thought that my own PLMs (which can get quite violent) were responsible for my feeling sleepy and exhausted all day long, but he said that was not likely. He also said that there was huge disagreement among doctors about whether or not to treat PLMs at all, because even severe PLMs don't seem to cause problems with overall sleep quality.

Spouses who are the victims of the kicking may disagree with that opinion, however, and doctors will treat them in that case. But they are hard to treat. They are best treated by a low dose of dopamine agonists, like Requip or Mirapex. Anticonvulsants like Lyrica or Neurontin can help a bit, as can opioid painkillers.

I don't know how old you are, but there used to be these machines in beds, at least in the US, where you plugged in a quarter and it made the bed shake. They were called "Magic Fingers." That's what it's like to share a bed with me...

Have you ever taken Requip or Mirapex? Sorry, I can't remember if they have different names in England.
Susan

Nicky
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Post by Nicky »

Thank you Susan. In 1998 I developed peripheral neuropathy from meds. By the next year I waking each night being & didn't know why (my brother had died of an overdose the year before, his biggest problem was he couldn't sleep either) Things worsened & one day when nodding off I realised I was jerking/kicking awake. Desperate by then, I related this to my doc who put me on cloneazepam which allowed me to get some zzzzzzzz for the first time in almost two weeks. Much later I got a rls diagnosis. Now some ten years later & I feel it's the PLMD that's waking me again. It never went away just was controlled a bit by meds. I'm 48 taking 2mg Ropinirole & 1mg of cloneazepam. The rls sensations & pain are there but not my biggest problem, which is why I'm considering trying something else to get some sleep (pregabalin). I think the PLMD is waking me up more and/or keeping me out of restful sleep. I can't take opioids as they would interefere with other meds that I have to take. Due to all my medical problems & my feelings about them I've not had a partner for ten years, so no one can tell me what I'm actually doing in bed. I sympathise with you & your partner with the shaky bed thing!

Arnie
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Post by Arnie »

Thank You Lyrica, my RLS and my night kicks are gone! so far, it s been a month! First two days on Lyrica, i felt out of it or like i was drunk and dizzy! After a couple of day things got to be normal! I was on Requip! made me tired and made my RLS worse than ever while i was taking it because it has a quickening effect! When I stopped taking the Requip, It took 2 or 3 days of withdrawls of my legs going nuts from the ramping up effect that Requip had on them! from the not takeing the requip! my legs were going bonkers and i took an extra Lrica which helped! Now that the requip is out of my system and the Lyrica kicked in, my rls and night kicks are completely gone and i feel normal for the first time in 40 or 50 yrears! I'm taking 75mg 3x a day!

SquirmingSusan
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Post by SquirmingSusan »

It's great to hear that the Lyrica works for you, Arnie.
Susan

ViewsAskew
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Post by ViewsAskew »

I love success stories. It makes me hopeful 8)
Ann - Take what you need, leave the rest

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badnights
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Post by badnights »

For what it's worth: when/if you start Lyrica or Neurontin, be on the look-out for feelings of depression and thoughts of suicide. It's a known side-effect that the FDA only just ordered to be put on the labels for Neuronin. It only affects a tiny percentage of people (but I was one of them). I can't find the reference I saw before, but if I remember right, suicidal depression happens about twice as often for people on Neurontin as in the general population. Even at that rate, it is only 0.4 % of users, though; very few. Sorry I don't have the original reference. Lyrica is similar to Neurontin and there's a class-action suit ongoing in the USA against its makers because it's said to increase the risk of suicidal behavior. That's not proof of anything, but at least be aware of the possibility. Forewarned, fore-armed. Or something like that. It can be difficult to tell if a depression is getting worse *because* of a drug, if you've been depressed without it. Don't know if I'm wasting space here, just because it happened to me doesn't mean it's common at all.

runkrun
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Post by runkrun »

Bethf, I started this whole discussion a while back, "Lyrica may be the answer for me". The medication is working well along w/ Oxycontin 15 mg every 4-6 hrs. Dr Silber at Mayo clinic suggested these medications to my family physician,and she cooperated fully. That being said, I really need some emotional support regarding the depression. I have no ambition for anything. It's all I can do is go to work and get on the treadmill to lessen my symptoms. I have to force myself to grocery shop, clean ,cook etc. Luckily my children are grown and caring for them is not an issue. I'm no longer involved in the church choir, rarely attend church and just lie on the couch w/ my remote. Don't get me wrong, I'm very grateful for the relief of my RLS. Lots of answer to prayer. If there's anyone out there suffering from "can't get off the couch syndrome", I'd love to hear from you! So I guess it's just a trade off. Lying on my couch and not suffering like I was in the past is great.

SquirmingSusan
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Post by SquirmingSusan »

runkrun, I can so relate to "can't get off the couch syndrome." You have no idea how much... (Dr. B diagnosed me with narcolepsy in October, and I'm finally getting some hope of getting relief from that.) Lyrica can be somewhat of a depressant, I think. You might want to talk to your doctor, either your primary doctor or Dr. Silber about the fatigue and lack of motivation. You may be able to just take the Lyrica at night to help you sleep, and not all day long, or even take a short acting sleeping pill to help you sleep if the Oxycodone keeps your symptoms at bay.

I was just thinking the other day that narcolepsy is horrible and that I haven't been able to work in years, and some days I haven't even been able to get out of bed. But it's nothing at all like living with uncontrolled RLS! RLS is torture.

But still, you shouldn't put up with feeling depressed and tired all the time. Especially if it's your meds that are causing it and your meds can be adjusted a bit to make you feel better. So please do talk to your doctor about it. I know it's horrible to start that whole thing with adjusting meds, but if you can get your life back it's worth it.
Susan

ViewsAskew
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Post by ViewsAskew »

For what it's worth, having now tried a few different opioids, I find that some opioids give me more of the "couch potato" feeling that others. They each have different side effect profiles on my body and it may be that what's best for each of us is based on how they make us feel.

I have much more energy with the levorphanol, but it continues to cause horrible muscle spasms or trigger points (I had 13 trigger points through my head, neck and shoulders yesterday, requiring an hour of massage and a hot bath before I could even function). I love the energy, but can't handle the other problem so will be trying yet another opioid in the near future.

I'm hoping that if I get it just right, I'll have both energy and a reasonable side effect profile.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bekull
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Post by bekull »

runrun:

I take Percoset (7.5mg oxycodone). I take one pill around 6 at night. By that time my RLS has built up during the day and I would not be able to sit at the dinner table if I did not take one. My kids laugh at me because by 9:00 I am ready for bed - especially in the winter. If I took more than one a day, I would not function at all. They make me very lethargic. Maybe 15mg of Oxycontin every 4 to 6 hours is just too much and is contributing to your couch potatoitis.

I'm so sorry and hope you get your "life" back and start singing in the choir again. Keep looking for answers, don't accept a trade off of one bad thing for another.

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