Restless Legs Syndrome (RLS) Discussion Board

Hello fellow RLSer,
Did some of you experience opioids-induced RLS augmentation?
After many years on Prebagaline I reached 600 mg and could rarely sleep more than 5 hours and had about 4-5 crisis during the day (which is a real problem at work). I found a sleep specialist willing to prescribe opioids. He let me choose what I wanted and I wend for Buprenorphine. After a few weeks I found the right dose of 1/2 patch of 35 mcg/h (probably equivalent to 10-20 mg morphine). It worked really well for a little more than two month. I could finally, after more than 10 years, sleep a full night up to 11 hours. It had its share of side effects but that was manageable considering the success.
However, it all wend downhill after. I suppose my body acclimated to the molecule and I slowly went up to 1 full patch (so double the dose) to manage the crisis. The doctor did not want me on higher dose right now. But it was not enough. Also I had strange effects such as a very high sensitivity in the legs and feet and event thighs. The RLS crisis were super strong, even staying when walking.
I then stopped using patches (kept the last one 8 days instead of 4) and went back the prebagaline and even at 1200 mg I had/have crazy strong crisis all day and night and also on the arms. The arms are the worth, they make any sleep impossible and are a real torture as there is nothing I can do to ease the pain. I can’t event use a computer during even a mild crisis. I put this on opioid withdrawal, however, I am certain my symptoms went way up when using buprenorphine. My goal is to try a different opioid. As of now I have a few hours break before lunch (not always) and the arms start at about 20h till 4 am. It is a real agony, difficult to type this message.

Did someone experience opioids-induced RLS augmentation? I could not find anything in the literature.

I experienced it with tramadol. I started with 50 mgs three times a day as needed and over the next 3-4 years I ended up with 100 mgs 3 x a day my legs just got worse and worse and the tramadol was not working. I wanted to increase my dosage but the dr. said I couldn't, though I would add another 50Mgs at night as I had saved extras up over the years and stockpiled them.

I am now on oxycodone and oxycontin and that seems to work for me.

Lissa

The only opioid that is known to cause augmentation is tramadol. That one doesn't happen often, but it does occur.

Pregabalin is not an opioid, it falls into the category of anti-seizure meds like gabapentin, Horizant and even topiramate. It is most often used to treat peripheral nerve pain but also sometimes helps with the movement part of RLS and is also one of the better meds for treating the insomnia side of RLS.

As for the opioids, there are a large number of morphine like meds (oxycontin, oxycodone, codeine, hydrocodone, etc, etc). The main two opioids used to treat RLS are methadone and buprenorphine since they are 1/day meds and are less likely to lead to addiction even though the chances of that at RLS doses is very small.

When opioids are stopped, there IS an increase in symptoms - I am not sure that they call is augmentation, though. Seems more that the receptors are yelling for the substance they miss and the symptoms are the result. For years, my specialist said it was not really RLS/WED, but lately he says it is. Augmentation only occurs when you are still taking the substance and you need more. When you stop it, you have the same receptor issue (but, that, also, is not augmentation).

Does that make sense?

And, so sorry you are going through this! I find that the only two substances that work for me effectively are the first two I ever tried - pramipexole and methadone. No other opioid works for me at a similar dosage (I need double to triple of the equivalency) and no other DA works for me at a similar dosage. Weird. My brain ONLY wants one of those two things.

Thanks for the replies,
What worries me it that I had a first two month of bliss with buprenorphine but after that the symptoms came back quickly and even doubling the dose did only helped for a week before the symptoms reappeared. By symptoms I means day and night crises. I could also feel a heighten sensibility in the legs and feet and symptoms appearing early in the day and non stop during the night. I also had a few times issues in the arms before I stopped buprenorphine.
Now I am in the withdrawal phase and this did increase the symptoms to a new level with full body RLS where I have them 24/7 and sleep 1-2 hours a night. I am in a total and constant torture. Even writing this message is difficult. I can’t stand still let alone sit or lie down. I expect (hope) that this will improve.
I’m seeing my doctor in 3 weeks to discuss the next steps but I don’t know what to think at this stage. Alpha2ligants have so little effects, I want to try again a different opioid. I am very worried that this “augmentation” will happen again. I have never seen cases of augmentation in the literature. I have to say that with dopamine agonist I did augment in less that a month to a high dose. I might be sensitive.
Open to any feedback.

evoltino wrote: Thu Jul 25, 2024 6:23 pm Thanks for the replies,
What worries me it that I had a first two month of bliss with buprenorphine but after that the symptoms came back quickly and even doubling the dose did only helped for a week before the symptoms reappeared. By symptoms I means day and night crises. I could also feel a heighten sensibility in the legs and feet and symptoms appearing early in the day and non stop during the night. I also had a few times issues in the arms before I stopped buprenorphine.
Now I am in the withdrawal phase and this did increase the symptoms to a new level with full body RLS where I have them 24/7 and sleep 1-2 hours a night. I am in a total and constant torture. Even writing this message is difficult. I can’t stand still let alone sit or lie down. I expect (hope) that this will improve.
I’m seeing my doctor in 3 weeks to discuss the next steps but I don’t know what to think at this stage. Alpha2ligants have so little effects, I want to try again a different opioid. I am very worried that this “augmentation” will happen again. I have never seen cases of augmentation in the literature. I have to say that with dopamine agonist I did augment in less that a month to a high dose. I might be sensitive.
Open to any feedback.

As of now, I've only heard of augmentation occurring with Tramadol, as Steve noted. But, it sure sounds like what I went through with a DA. I hope your doc will try other opioids with you.

The symptoms of opioid withdrawal include many of the same symptoms as severe RLS, including restlessness and insomnia. Opioid withdrawal is also not driven by the clock, so it occurs 24hrs/day until the withdrawal phase is over. Buprenorphine (and methadone) also interacts a bit with the dopamine receptors in the brain and spinal cord, so buprenorphine withdrawal may seem to have a great deal in common with the symptoms of augmentation. The catch is that the neurochemical mechanisms are a bit different even though the patient is still just as miserable and has many of the same symptoms (full body RLS that lasts 24/7 until relieved).

As for tramadol, since it is also a potent anti-depressant, it messes with the balance of some of the other neurotransmitters, like seratonin.

Rustsmith wrote: Thu Jul 25, 2024 11:44 pm The symptoms of opioid withdrawal include many of the same symptoms as severe RLS, including restlessness and insomnia. Opioid withdrawal is also not driven by the clock, so it occurs 24hrs/day until the withdrawal phase is over. Buprenorphine (and methadone) also interacts a bit with the dopamine receptors in the brain and spinal cord, so buprenorphine withdrawal may seem to have a great deal in common with the symptoms of augmentation. The catch is that the neurochemical mechanisms are a bit different even though the patient is still just as miserable and has many of the same symptoms (full body RLS that lasts 24/7 until relieved).

As for tramadol, since it is also a potent anti-depressant, it messes with the balance of some of the other neurotransmitters, like seratonin.

Thanks Rustsmith,
what do you think would be the best next step? Oxycodon ER twice a day (possible with a lower during the day) or Methadone onece a day?
I was very enthusiastic with Buprenorphine using 1/2 a patch. It worked wonders for two month. Of course like everyone I look for something for the long term. I'm 49, fit and active. The RLS is killing me. I had 25 hours of sleep in the last 10 days.

If I had that choice, I would go with methadone, partly because it is cheap. I don't know what the cost of an equivalent dose of oxy ER would be, but I have enough problems remembering to take my methadone once/day. If I had to take oxy 2x/day., I would continually be going through withdrawal until I remembered the reason for why I felt like I was starting to get the flu.

Also, I get the alerting side effect from opioids, so taking methadone 1/day allows me to take it at lunchtime and get over the mental alerting side effect before it is time to go to bed. If oxy ER caused the same problem for me, I would never get to sleep before midnight.

It’s not unheard of, it’s just not documented well in the scientific literature. I augmented on opioids as have a few others… I don’t think augmentation is the right word for these cases, it’s better defined as building tolerance which “shouldn’t happen”. Men with early onset RLS seem to have the worst form the disease and it is somewhat different.

My hypothesis is that your effectiveness equilibrium point is higher or the pathology of your RLS is different. You should try other opiods, as they all act a bit differently.

Did lyrica/gabapentin ever work for you? I’m assuming iron was not an issue either.

I was on Lyrica for almost 10 years (my RLS started at around 36), at the end even 600 mg did very little, I recently took a few times 1200 mg with little effects. Did many times a full blood analysis. I also tried to boost my iron with IV, I got it to up 700 (220 was my normal level) with no effect whatsoever.
I did 10 days fasting.
I did a strict carnivore diet for a month. This did change my Hydrogen Breath Test but not the RLS.
I did not yet try Levetiracetam, but I expect it would act like Prebagalin.

So at this point there is not much else then opioids... I'll try methadone with the hope it will not augment. The withdrawal phase it a true torture if I have to stop it.

evoltino, I have been through withdrawal for pramipexole while augmented and have also been through withdrawal from both methadone and tramadol ER (multiple times). Given a choice, withdrawal from a low dose opioid is a piece of cake compared to dopamine agonist withdrawal. Each time I had to go through opioid withdrawal, it felt like a combination of a mild case of the flu along with somewhat increased RLS symptoms that included one night of poor sleep. Withdrawal from a low dose of a dopamine agonist means zero sleep for a week along with horrible RLS. Given a choice of which one to go through again, it isn't even a choice. Opioid withdrawal wins hands down.

I agree here, I had to go through a withdrawal of pramipexole and indeed I did not sleep for one week. An absolute disaster. However, the withdrawal I'm going through from Buprenorphine is difficult too, specially the arms are a torture. I have a massive increase of RLS compared to base. As in 24/7 RLS in arms and legs. The pain makes me sweat and sleep is impossible. I have less than 30 hours of sleep in the last ten with 2-3 hours of sleep in sections of 30 minutes. It's now day 10 and I still have RLS the full night. Thankfully it's vacation time in the summer and the work is forgiving. If this happens a few month later I risk my job.
What worries me the most is the possibility of "augmentation" from opioids in general, as I don't know which other medication to take that could be effective.

What is your status now? Did your new drug work?

evoltino wrote:I found a sleep specialist willing to prescribe opioids. He let me choose what I wanted and I wend for Buprenorphine. After a few weeks I found the right dose of 1/2 patch of 35 mcg/h (probably equivalent to 10-20 mg morphine). It worked really well for a little more than two month. I could finally, after more than 10 years, sleep a full night up to 11 hours. It had its share of side effects but that was manageable considering the success.
However, it all wend downhill after. I suppose my body acclimated to the molecule and I slowly went up to 1 full patch (so double the dose) to manage the crisis. The doctor did not want me on higher dose right now. But it was not enough. Also I had strange effects such as a very high sensitivity in the legs and feet and event thighs. The RLS crisis were super strong, even staying when walking.

This description really does sound like augmentation, even though augmentation is not known from opioids (other than tramadol). It occurred to me that maybe you were experiencing withdrawals every patch cycle from taking a high dose that maybe gets metabolized quickly and leaves you in a state of withdrawal for the last couple of days of patch time. Did you feel relief for any amount of time right after putting a fresh patch on?

If not, then it really does sound like augmentation.

Oozz wrote: I augmented on opioids as have a few others… I don’t think augmentation is the right word for these cases, it’s better defined as building tolerance which “shouldn’t happen”.

Oozz, you may have skipped some description, but as written, that doesn't sound like augmentation. It sounds more like actual tolerance, whereas what evoltino is describing is classic augmentation: a worsening of the symptoms caused by taking the medication. This is distinct from needing a higher and higher dose with time to cover the same level of sensations.

Since buprenorphine is such a mixed bag, being agonist and partial agonist at some opioid receptors and antagonist at others, maybe that's why you (evoltino) reacted so poorly to it and in such a novel way, and maybe you would have more luck with one of the other opioids.

I take hydromorph contin, which the first (and only) neurologist I saw was apparently comfortable with, and other doctors since then have just continued me on the same med. But it doesn't seem to be a favorite with most doctors, who are more comfortable with oxycontin. Hydromorphone is said to be a bit stronger, longer lasting, and quicker acting.

It would be best to clear your body of everything before you begin again, but only a 7-10 day washout should be needed, so you should be done. The symptoms you have now might be your new baseline, but they might diminish slowly over the next few years. Now, since your doctor is willing, you can try a different opioid, but you might want to combine it with gabapentin encarbil (Horizant), which might be more effective than pregabalin, to keep the dose low and to help offset any opioid alerting effect. As for which opioid, you have to try and see. I do hope things are working out for you.