Restless Legs Syndrome (RLS) Discussion Board

Question: I'm taking 60mg codeine before bedtime and 30mg when I first wake up in the middle of the night. I've been doing this for about a month since quitting Pramipexole. One of the side effects is drowsiness. I'm nodding off repeatedly (but briefly) in the evening while watching TV. I'm planning to switch to codeine contin (if my doctor will prescribe it. I've verified it is available), which is an extended release form of codeine. I'm not sure of its half life, but it's probably 6 hours or more, which is double that of codeine. According to my calculations, I will have a lot more codeine in my body at 6PM with the codeine contin than the codeine regimen. Does this mean my side effects will become worse? I'm not sure I want that. Taking the codeine contin earlier in the evening doesn't help much. At this point, I can't get methadone or Oxy.

Also, how much sleep are those with severe RLS typically getting? I read the thread on sleep, and got the impression that even with meds, most were lucky to get a total of 4-6 hours sleep. Is that actually typical? Do many actually sleep 8 hours straight? I can get 8 hours at times, but it's broken into 3 or more segments. Most posters appear to have to have broken sleep. Do extended release opioids actually deliver 8 hours of uninterrupted sleep for many severe RLS sufferers?

Thanks

I can only speak for myself. I usually spend between nine and ten hours in bed each night with at least two awakenings that I am aware of. However, during my last two sleep studies, they found that it takes me about 90 minutes to actually fall asleep and that during the night, I have microawakenings that result in an overall sleep efficiency of about 45%. So for 9 to 10 hrs in bed and seemingly sleeping, I am actually only getting between 4 and 4.5 hrs of actual sleep. As for my medication, I take methadone each day about 11A.

Thanks Steve. So you're on a long-acting opioid, but still wake up two or more times during the night. That's where I am on a short-acting opioid. I'll try the extended release codeine (if I can get it), and see how it goes. I'm hoping I will sleep through the night with it. If I'm still up twice during the night for 30 minutes or more, and perhaps with worse side effects, I'll go back to the short-acting codeine.

I scored 27 on a self-assessed RLS Rating Scale, putting me in the severe category, but when I am up at night, I don't seem to have the same experience many seem to have. I'm not walking off symptoms. My symptoms are quite mild when I'm up. I'm just sitting, generally on the computer, waiting for the breakthrough to pass. Apparently it takes 30-60 minutes for the codeine to act, but I get the sense that I'm really waiting for the breakthrough to pass. This is very similar to when I was on Pramipexole. There was no dose when I was up at night. I was just waiting for the symptoms to dissipate before going back to bed. That took about an hour. That is also what I experience with codeine. I have to stay up for about an hour. Sometime when I get a good first sleep, I'm going to experiment with dropping the dose when I'm up in the middle of the night. I want to know if I'm waiting for the drug to take effect, or simply waiting for the breakthrough to pass. My sleep is quite variable, and it will take several nights to test it out.

You are correct that it takes about 30 minutes for the codeine to act. You stomach has to dissolve the pill and pass it to the intestine, which then adsorbs it into the bloodstream. Once in the bloodstream, it takes a while for enough of it to be picked up by the brain to active the opioid receptors in the brain.

Also keep in mind that RLS is not only caused by a deficiency of active dopamine receptors but also a deficiency of glutamate receptors. This leads to an excess of both neurotransmitters. Dopamine is involved with the movement issues we experience but it is the glutamate that often results in the insomnia that many of us have. So, when you wake up, the glutamate part of your nervous system thinks it is time to get up and get on with the day. At least, once the codeine kicks in and activates that part of the nervous system, you can eventually get back to sleep.

You mentioned that you self scored a 27 on the rating system. I will pass along that I score myself two different ways. If I score myself with all of my meds working as intended, I usually end up at about 18 or 19, which is moderate. However, if I score myself assuming that none of my meds are working, I was 29 when I first started 15 years ago but I am now at 31 or 32. That sounds high, but I saw a publication about a woman in Houston whose score was 39 and only after undergoing Deep Brain Stimulation neurosurgery to implant what amounts to a neurological pacemaker, her score with multiple meds dropped to about 30.

Although some sources say codeine takes 60 min to take effect, others (https://www.hhs.texas.gov/sites/default ... nTable.pdf) say 15-30 minutes. For me, it was more like 15 minutes (I'm a little faster than "normal" with hydromorphone, too - it kicks in in about 15 minutes, whereas the same table says 30 min).

As soon as it kicks in, your symptoms are under control and your exhausted body, which hasn't had enough sleep in months or years, falls asleep. If the timing of this is a problem, time how long it takes for you to start nodding off after you take it, then adjust the time you take it so that it kicks in right when you're lying in bed about to sleep.

The contin will not allow more codeine in your body. It's the same amount but released slowly (so actually there is less in your body all at once?? I was never clear on that).

As for how much sleep people with severe WED/RLS get, I hate to confirm the bad news, not much. The only saving grace is if you're retired or independently wealthy or can work your own hours, in which case I highly recommend taking naps as soon as your body lets you during the day. I'm not as bad as Steve, but I still spend 8-9 hours in bed to get 5.5 to 6.5 hr of actual sleep.

I'm not walking off symptoms. My symptoms are quite mild when I'm up. I'm just sitting, generally on the computer, waiting for the breakthrough to pass.

Mostly the people who have it worse than that are augmented. Not always tho.
I use immediate-release hydromorphone these days, and I set a timer for 15 minutes, in case I get distracted by whatever I'm doing to kill time and stay up later than I need to. Also, no screens and no bright overhead lights.

I want to know if I'm waiting for the drug to take effect, or simply waiting for the breakthrough to pass.

Ya, I know what you mean. I have (rarely) waited it out without taking meds and sometimes that works and sometimes it doesn't. But also, sometimes taking the meds doesn't work.

Rustsmith wrote: Sat Mar 01, 2025 11:20 pm

Also keep in mind that RLS is not only caused by a deficiency of active dopamine receptors but also a deficiency of glutamate receptors. This leads to an excess of both neurotransmitters. Dopamine is involved with the movement issues we experience but it is the glutamate that often results in the insomnia that many of us have. So, when you wake up, the glutamate part of your nervous system thinks it is time to get up and get on with the day. At least, once the codeine kicks in and activates that part of the nervous system, you can eventually get back to sleep.

Thanks for the explanation Steve. I had to do some quick research, but I think I understand it.

Rustsmith wrote: Sat Mar 01, 2025 11:20 pm You mentioned that you self scored a 27 on the rating system. I will pass along that I score myself two different ways. If I score myself with all of my meds working as intended, I usually end up at about 18 or 19, which is moderate. However, if I score myself assuming that none of my meds are working, I was 29 when I first started 15 years ago but I am now at 31 or 32. That sounds high, but I saw a publication about a woman in Houston whose score was 39 and only after undergoing Deep Brain Stimulation neurosurgery to implant what amounts to a neurological pacemaker, her score with multiple meds dropped to about 30.

My 27 score is based on my final state when augmented on Pramipexole. My meds working score is about 18. I'm really curious as to what my current off-meds score would be. I remember vaguely what I was like pre-meds. I thought it was awful then, but now it doesn't seem so bad. I'd like to see where age and augmentation have brought me. I have this silly notion that perhaps I could make it (survive) drug free. I know it's silly.

badnights wrote: Sun Mar 02, 2025 2:30 am

As soon as it kicks in, your symptoms are under control and your exhausted body, which hasn't had enough sleep in months or years, falls asleep. If the timing of this is a problem, time how long it takes for you to start nodding off after you take it, then adjust the time you take it so that it kicks in right when you're lying in bed about to sleep.

The contin will not allow more codeine in your body. It's the same amount but released slowly (so actually there is less in your body all at once?? I was never clear on that).

Thanks Beth. I'll use that timing tip. I've been guilty of wasting a lot of active drug time, and I cannot afford to do that.

I think I understand the slow release thing. A lower initial concentration, but a lower decay rate?

badnights wrote: Sun Mar 02, 2025 2:30 am

The contin will not allow more codeine in your body. It's the same amount but released slowly (so actually there is less in your body all at once?? I was never clear on that).

Hi Beth,

I see how it works, but can't seem to attach the chart. It basically agrees with my calculations. I think I will have more drug in my body the next evening with the extended release compared to the immediate release. Looking at the chart, I'm going through two cycles of the IR, and then allowing the residual drug to decline. The ER retains its concentration longer, and I end up with more residual drug early next evening. If I go to the ER, I will then see if the side effects the next evening are greater. If they are, I don't think I want it. I'm already nodding more than I want to. I can talk to my doctor and let him know I plan to try the ER, and then go back to the IR in a few days if I don't like it. I can take the same approach with any other drug I may want to try such as Pregabalin (although I would have to go through codeine withdrawal); try it for a few days and if it does not work, either increase the dosage or give up on the drug, and return to IR codeine.

badnights wrote: Sun Mar 02, 2025 2:30 am
I use immediate-release hydromorphone these days.

Hi Beth,

I see that you use immediate-release hydromorphone. Why did you choose the IR version? I understand its half life is about 3 hours. Did you previously use the ER version?

I'm starting to realize that some or all of the issues I've been experiencing with codeine may be related to anxiety. There is no question I am suffering from anxiety, but I can't be sure of how much the anxiety is causing in terms of physical symptoms. It's difficult to tell when some of the symptoms I experience are also associated with codeine side effects. I experienced anxiety in my 30s, when like now, I was worrying about health issues, and I am well aware of what it can do to a person. I'm experiencing anxiety, depression, constipation and nausea. From previous experience, I know this anxiety will take a while to pass. I think I will calm down a little when I settle on a drug. I had seen opioids as the solution, but was concerned about the nausea, constipation, depression and anxiety I was experiencing. The GI symptoms have been somewhat extreme on a couple of occasions, with me on the toilet many times over several hours. This would go on until my system was completely purged. The last one was yesterday evening. I've increased my bran intake to deal with the constipation. I'm aware of the problems that can be created increasing bran too quickly. In fact, I initially did that. I thought I had things under control just a few days ago. My depression was quite low and the constipation was under control. But then things took a turn for the worse. I may ask my doctor for something to treat the anxiety, although I really don't like to do that, and the thought creates more anxiety. I plan to pick up a herbal supplement today. I'm not entirely sure why I'm experiencing this level of anxiety. In terms of health, I've been through much worse; cancer surgery, chemotherapy, radiation, and that dreadful Pramipexole withdrawal. Nothing! Now this! I think the way I have to look at this is, most other people have had good results with opioids. For a few, a particular opioid may not have worked, but I haven't read anything about what I'm experiencing. So, regardless of whether anxiety is causing the issues I have attributed to codeine, I need to work on it.

Don, if you do ask your doctor for something to treat your anxiety, try to steer him/her in the direction of gabapentin rather than a benzo. Combining benzos with opioids can be a tricky thing to do (I know because I am taking both and my doctor is very nervous about stopping breathing at night). However, gabapentin or pregabalin might also help with your RLS, so you can kill two birds with one stone so to speak.

Thanks for the tip Steve. I really appreciate it. I had no idea it was coming, but this AM I experienced, what appeared to be a panic attack. I was lying in bed and my insides were a bit shaky. I've experienced anxiety, but never anything like that. Not too bad now. So I definitely plan to ask my doctor for something. I've read a lot of posts, and I know that many combine opioids with gabapentin or pregabalin.

1. Is pregabalin preferable to gabapentin? I understand gabapentin has absorption issues. Or is gabapentin enacarbil a better choice? My doctor mentioned them, but I don't think he's very knowledgeable.

2. So are you saying I would sick with my current codeine doses, and add a dosage of say pregabalin?

I tried my little experiment of dropping the codeine dosage in the middle of the night. It did not work well, and from your previous explanation I understand why. No need to pursue that idea any more.

1. Gabapentin is cheap, but some people cannot adsorb it as well as others. Pregabalin addresses this, but is more expensive. Horizant also addresses the adsorption issue and becomes gabapentin once in the bloodstream, but can be very expensive (it maxed the co-pay on my insurance when I tried it).

2. Yes, you can combine gabapentin or pregabalin with codeine, many of us do that.

Thanks Steve. I hope my doctor is supportive.

Don wrote:I remember vaguely what I was like pre-meds. I thought it was awful then, but now it doesn't seem so bad. I'd like to see where age and augmentation have brought me. I have this silly notion that perhaps I could make it (survive) drug free. I know it's silly.

OMG. that is so much like me. I don't know whether to smile or cry.

I've been guilty of wasting a lot of active drug time, and I cannot afford to do that.

I do it too. It's nice to have no sensations, to just be calm in the body. Sometimes I don't want to waste that on sleep - - - also, the glutamate thing; the opioid meds don't address that, so you don't feel tired unless you're also taking a gabapentinoid e.g. pregabalin.

I think I understand the slow release thing. A lower initial concentration, but a lower decay rate?

Hmmm... not a lower decay rate, a lower release rate. As I understand it, it's like taking multiple smaller doses over a period of time. So as an example: You can take 3 mg immediate release and it all begins to break down at once, and 3 hours later it's almost all gone (don't believe the numbers because I just made them up). Or you can take 3 mg of a contin, and 1 mg begins to break down right away, an hour later another 1 mg begins to break down, then an hour after that, the third mg begins to break down, at which point the first mg is almost gone, and the second is maybe half gone. Sort of like that.

I can take the same approach with any other drug I may want to try such as Pregabalin (although I would have to go through codeine withdrawal); try it for a few days and if it does not work, either increase the dosage or give up on the drug, and return to IR codeine.

It would be better to take pregabalin WITH the codeine, as Steve said. They do different things. The codeine acts on the sensory abnormalities, and the pregabalin helps reduce the excess glutamate to make us sleepy.

I see that you use immediate-release hydromorphone. Why did you choose the IR version? I understand its half life is about 3 hours. Did you previously use the ER version?

Sorry, I wasn't clear at all. My primary med is hydromorph contin. I use hydromorphone IM for breakthru, which happens every night . Probably I should be on a higher dose of contin but I worked so hard to improve (?) my symptoms enough to reduce to the dose I'm on now, and I don't want to admit defeat and go up again.

I've increased my bran intake to deal with the constipation.

The best long-term solution is to dramatically and permanently increase the amount of vegetables in your diet.
You can swallow olive oil and eat prunes for relief in 24-48 hours (google for details), but increasing vegetables is the way to go. I never get constipated anymore, though I do take lactulose with me when I travel, in case I can't eat as much veg as usual.

I'm experiencing anxiety, depression, constipation and nausea.

Anxiety is a *****. Don't try to look for a reason - there needn't even be a reason. What other meds are you on? Can one of them be causing the anxiety? Codeine can cause agitation, nervousness, and restlessness(!) - not quite anxiety. If you were taking pregabalin I would suspect it to be the culprit for your depression.

If you have a few hundred dollars and can dedicate a significant amount of time and effort, you could try the Gupta Program for anxiety. I used it for about 3 years - I'm still using the brain re-training techniques, but not as often. I tried it in hopes that it would heal my WED/RLS (it's marketed for CFS/ME, long covid, Lyme, fibromyalgia, even anxiety, but not WED/RLS) and I was able to reduce my meds from about 9 mg to about 6 mg hydromorph contin, but maybe that was entirely due to the almost complete elimination of my depression and anxiety (I am still smiling in wonder just to think about it). In other words, it was a pleasant side effect - less anxiety meant less WED/RLS.

Or maybe it directly helped my WED/RLS too. But one thing I am certain of: I healed my anxiety and depression. I have to do the techniques now and again, or the old brain habits start to come back. I don't know your life situation; you might not be able to dedicate a lot of effort to brain re-training - but I am so very glad that I did.

Good luck!

badnights wrote: Fri Mar 07, 2025 7:49 am
Hmmm... not a lower decay rate, a lower release rate. As I understand it, it's like taking multiple smaller doses over a period of time. So as an example: You can take 3 mg immediate release and it all begins to break down at once, and 3 hours later it's almost all gone (don't believe the numbers because I just made them up). Or you can take 3 mg of a contin, and 1 mg begins to break down right away, an hour later another 1 mg begins to break down, then an hour after that, the third mg begins to break down, at which point the first mg is almost gone, and the second is maybe half gone. Sort of like that.

Good luck!

An excellent explanation of ER. I think I get it now. I'm still nodding watching TV in the evening, but it's no worse than when I was on IR Codeine.

I'm doing well now. I saw my doctor on March 6, and he prescribed 50mg Codeine Contin (the ER version of Codeine. I had previously been using IR Codeine) and 75mg Pregabalin. I requested these drugs for my RLS and anxiety, and he prescribed them, even though he does not approve of opioids for the treatment of RLS, or Pregabalin for the treatment of anxiety. I tried to show him the highlighted conclusion paragraph of the Mayo Clinic paper on the use of opioids in RLS treatment. He refused to look at it. Side effects are moderate and tolerable. I sleep 7-8 hours a night. I still sleep in segments. It's not necessarily breakthrough symptoms waking me up. I have almost no symptoms. I wake up with a stuffy nose at times. That's a lifelong problem, unrelated to RLS. Waking up with ER Codeine is preferable to waking up with IR Codeine. I don't have to take the drug, and wait for it to become effective. With IR Codeine, I was up for about an hour. With ER Codeine, I'm up for about 20 minutes. I have had sleep segments as long as 6 hours, so sleeping through the night may be possible. I definitely need Pregabalin now for anxiety, but I'm not sure if I need it long term. I tried Codeine Contin on its own for four days. It worked fine, but an anxiety flare up on day four made it obvious I had to add Pregabalin. Anxiety is an issue from time to time with Pregabalin, but symptoms are greatly reduced. Previously, it was debilitating at times.

I had been attributing anxiety symptoms to medication issues. The RLS meds were in fact working fine. The distressing symptoms were mostly anxiety related.

Most of my RLS knowledge came from a handful of papers, a few doctors, and this board, particularly the moderators. I only found this board a few months ago, but could not have found success without it. My score on the RLS Rating Scale is now 4, which puts me in the middle of the mild range. That score is an under treatment score, but I'm nevertheless pleased with it.

I will now rant. Our medical system is grossly inadequate in the treatment of RLS. I'm Canadian, but I believe the same is true in the US. Doctors are not knowledgeable about RLS. Many are unfamiliar with DA augmentation. Many are deathly afraid of opioids, denying RLS sufferers of one of their few options.They prefer to augment their patients on DAs. The expertise is out there, but it's not getting to doctors. My RLS could have been effectively analyzed by a doctor who was familiar with the RLS Algorithm and the treatment of RLS with low doses of opioids. Perhaps a flow chart could be used to determine treatment for most RLS sufferers, with the exception of those in the very severe category. There has to be a better way than what we have now.