Hello im new here

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

John, here is my personal experience (and a bit of what people here have said).

Opioids haven't been studied much for RLS - mostly because they are generics for all of them so the company doing the study wouldn't benefit necessarily. But, they've been noted as helping RLS for many, many years (earliest written documentation was 1672, IIRC). The dose is important, however, and dependent on the degree of RLS.

I've seen people say it works on almost everyone...and other estimates that it works for about 70%. I have no idea which is right, but based on the posts here, it works a high percentage of the time. I can only remember a few people saying it didn't help. In one of those cases, the person turned out to have a different disorder along with RLS and that's why it didn't work.

When I first tried opioids, I tried a mild opiate - propoxyphene. I immediately knew if wasn't going to be enough, but it seemed to helped some. Enough for me to want to see what else might work. Next, we went to Ultram - tramadol. Again, not enough of a response, but it also helped some. Next was a medium opioid - hydrocodone. I was allergic. My doctor read the literature and talked to Dr Buchfurer, so the next and last try was methadone, a high-potency opioid. Indeed, that did the trick.

If I'd stopped at propoxyphene, which, like codeine, is a low-potency opioid, I'd never have gotten relief.

Per addiction, tolerance and dependence - it's not something to sneeze at. But, it's manageable. You just have to work harder than you do when you take some other drugs.

I'd highly suggest buying the book, "Clinical Management of Restless Legs Syndrome" by Hening, Buchfurer and Lee. It's written for PCPs, but medical savvy patients can benefit, too, along with being able to take it to your doctor and show them what is recommended. They talk about each of these drugs and how to manage using opioid therapy for RLS.
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.

john_a
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Post by john_a »

Hi mackjergens and ViewsAskew

Thanks for going to the trouble of finding that for me.

I am going to try the larger doses of Codeine.

A couple of questions:

1. If I take the codeine at night, will the effects last until the morning?

2. If I take it every night, will it become habit forming, and if I suddenly stopped it, would I get withdrawal?

PS I am a bit scared of Methadone, because it seems a very serious drug, one that can only be dispensed on a daily basis at the pharmacy, and is highly regulated by the Government here in Australia, I don't know if they would approve it for RLS?

Thanks again.

mackjergens
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Post by mackjergens »

John,
I wish I could answer those questions for you, but since all meds work so differently with each person, there is just no way to answer.

I will say I would never ever just suddenly stop a med such as codiene. I have taken hydro for years every night, and when I switched to ultram(tramadol) I had no problems, but that could be because of switching to another pain med. But I'm sure your Dr will instruct you how to stop the codiene when the time comes, but most just start tappering off meds, a little at a time. Like going from one pill to 1/2 of pill then to 1/4 of pill. over several day span.

Some nights my meds will last me all night, other nights I wake with a mild case of rls in middle of night and have to take more meds, if I am lucky I can go back to bed and to sleep, but there are times that the rls is so strong I must get up and walk or get busy until the second med kicks in.
Hope this is helpful

ViewsAskew
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Post by ViewsAskew »

I can't say, either. I'm not a doctor, nor pharmacist. From what I've read, however, it may depend a lot on your degree of RLS. You may not find it works all night...it might work fine.

If it doesn't, a jump to methadone wouldn't be the first option, anyway. The first option would be a moderate-potency opioid. These include: hydrocodone, tramadol or extended release tramadol. Once those are tried and it's found they don't work, next is a high-potency. Some doctors prefer methadone because there is no high with it and often once dose a day is all that is needed. Because the dose is spaced out far enough, these doctors say that they have no problems with addiction or even dependence. I am sure, however, that some people still DO have those problems.

Per addiction, I think it's really important to really look at the difference between addiction and dependence. Addiction is when you NEED the drug from a psychological perspective and you will DO ANYTHING to get it. That happens relatively rarely. Not to diminish how tough it is when it happens, it happens at a low rate. One doctor at an RLS conference told me it was about 7% generally speaking. And that is when you take it 3 times a day for pain; not once a day for RLS.

Dependence is when the body gets used to the drug and is unhappy when it's taken away. That happens with almost every drug that is prescribed for RLS! Unless you know differently, always go slowly when stopping anything. Dependence can be nasty physiologically, no question! I was dependent on clonazepam and it took me 7 or 8 months to stop taking it - chills, nausea, headaches, weight loss were all part of the 7-8 months.

One study showed that addiction was negligible among people taking opioids for RLS.

I guess all of that puts it in perspective for me. I can get dependence on many drugs. I have to be careful. It's a relatively small risk, but still and risk, so I need to make sure my meds are accounted for, may need to ask my spouse to help, and must not ever take more than are prescribed.
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.

john_a
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Joined: Sun Aug 24, 2008 3:40 am

Post by john_a »

Thanks for all the help, I'll talk it over with my doc this week and let you know how i get on.

ViewsAskew
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Post by ViewsAskew »

Good luck.
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.

Neco
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Post by Neco »

I've been through several harsh withdraws from methadone, and I personally feel that it doesn't even compare to the lower strength opiates.

I've never been through withdrawal with codeine as far as I can remember.. But as for its duration, depending on the dose and you metabolism, you can get close to 24 hour relief from a dose of codeine.. Maybe not full relief, but enough to keep you sane and easily distracted by other tasks.

Hydrocodone withdrawal can be a bit of a headache. At my worse, when I had a 100mg/day habbit when I went through withdrawal I got cold and hot sweats, and I had deep pain in my legs.. Kind of like really achy muscles, but not as bad as bone pain I would imagine.. Some Ibuprofen usually took care of that.

When you go through withdrawal from any opiate, you usually see diarrhea, tempurature fluctuations, and minor pain. Severe cases might see flu-like symptoms including nausea.. However for even someone in my dose range, I feel I tolerated it well, and you'd have to have a BIG habbit to likely see the worse.

When I stretch out my 24 hour cycle with my methadone I start seeing tempurature changes too, so it can hit fast.


Really though you with codeine you are likely to just get the runs, as opiates constipate you alot and then the absence throws your body out of whack.

It's definitely NOT a reason to not use opiates if they help you.

As for developing a habbit.. That comes down to the patient. I have had a hard time keeping my use under control, and the fact I seem to require relatively higher doses than others to maintain my comfort, has really contributed to the problem.

As long as you are vigilant and keep track of your usage, you have nothin to worry about. You may see dependance which is a natural and legitimate physiological response, but that's about it.

I've been biting my lip about this for a while also.. But I feel obligated to speak up on the "methadone doesn't make you high" thing.. When I first petitioned for it I also believed this to be true.. But I gotta tell you, no it doesn't blast you out of your skull like Codeine or Hydrocodone / Oxycodone.. But it does SOMETHING.. I definitely feel something chemical and I always detect it the seconds it hits me.

As opposed to other drugs I think I am interpreting it more as a wave of anti-anxiety, which is not at all bad.. But definitely has still contributed to my problems keeping even my methadone straight. Ironically if I never felt anything it would have been great for me too, because then I could have adjusted back to feeling "normal" 24 hours a day, like I used to get with Levodopa.

I think the confusion comes from addict reports, as what methadone essentially does is keep illicit substances from making you high (within a specific dose range).

But I digress.. The stuff does do something in my brain that it reads as "this feels good".. It's a great drug in any case, it lasts a long time, and is a good last resort.

I guess we're lucky in the USA, you can buy a truckload at the pharmacy if you want.

john_a
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Post by john_a »

Thanks Zach, Im seeing doc on Thursday, will discuss this with him and let you know the outcome.

Thanks again to all.

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