Restless Legs Syndrome (RLS) Discussion Board

Unfortunately, it seems like I’m building some sort of tolerance to methadone. I’m very very concerned. I was on 5 mg in June, then jumped to 10 at the beginning of November. Now it seems like 10 isn’t cutting it. Has anyone had any experience like this? Im freaking out rn, very scared that I’ll never be able to get this under control.

I know exactly why the panic is setting in, but it's ok, you don't need to go there. There is a solution for this sort of thing. It's not a perfect solution, but you can live with it and even have a good life. Ann (viewsaskew) has been doing it for years.

You may need to take scheduled holidays from the methadone to re-set yourself. During the holiday, you take pramipexole (!! I know! but only for 10 days maybe, and make sure your iron is good before you start all this) and preferably also pregabalin or Horizant or gabapentin, in order to keep the pramipexole dose low. You can figure out what doses you might need if you've ever used those meds before, so you can speak intelligently when you talk to your doctor about it.

But before you go there, consider if anything has changed recently that might have caused an increase in symptoms. Like, a new supplement or a new food or medication? Even a change in activity level? Has Nov been unusually stressful? Stress can jack my symptoms right up.

Also, remember that you don't want to completely eliminate symptoms, since for some reason that seems to be a recipe for making them worse.

Thank you very much, that really helped calm my nerves and put things in perspective. Yes, life has been much more chaotic than usual. Hopefully, it will subside.

I’ve used DXM to help attenuate tolerance and it does seem to work. It slowed tolerance, allowing 10mg to work for another 30 days. There is a lot of information about opioid tolerance on Reddit, r/opiates. I’d highly recommend to anyone having this issue.

I used to take methadone and now take buprenorphine. It seems to be working better for me. It might be an alternative for you to alternate with. You can't take them together.

I saw my RLS doctor today and he said that it may be because I never took a long enough break after coming off the DA. Rather, I went straight from the augmented Mirapex to the Methadone. He speculates that, by not having the dopamine system reset and augmentation die down, the methadone perpetuates the augmented dopamine. This makes sense to me, and it may explain why I didn’t have tolerance to opioids before. I’ll be doing a 14 day holiday. I’ll keep this updated to let people know if it works

When I augmented with mirapex, it was about a year afterwards that I started with methadone. I guess a long enough break. That year was miserable.

I started taking methadone on the same day that I started tapering off of pramipexole (I was taking 0.75mg/day). I stayed on the same dose of methadone for about six years before I finally had to increase the dose by half of a pill each day last year.

Oozz wrote: Fri Nov 18, 2022 9:41 pm Unfortunately, it seems like I’m building some sort of tolerance to methadone. I’m very very concerned. I was on 5 mg in June, then jumped to 10 at the beginning of November. Now it seems like 10 isn’t cutting it. Has anyone had any experience like this? Im freaking out rn, very scared that I’ll never be able to get this under control.

When I first started on opioids after augmenting (badly) on pramipexole, I had to up my opioid dose several times. I started with 100mg Tilidin a day, had to up to 200mg 2 months later and switched to 30mg Oxycodone (approx. 300mg Tilidin) after 4 more months. However, after that my RLS stabilized and I've been on this dose for 9 years now. I even managed to decrease it to 20mg during the last couple of years (even though there are still phases where I need more, but also some phases where I could perhaps reduce even further).

I have still no clue why this early dose increase was necessary. Would probably give me some insight if, and how much, these opioids contribute to my other health condition (ME/CFS).

I was told my doctor that going straight from augmented Pramipaxole to opioids may require escalating does of opioids and/or more opioids to control symptoms. The rationale is that the by not taking a drug holiday the dopamine system never has a chance to return to baseline.

Oozz wrote: Fri Jan 20, 2023 5:47 pm I was told my doctor that going straight from augmented Pramipaxole to opioids may require escalating does of opioids and/or more opioids to control symptoms. The rationale is that the by not taking a drug holiday the dopamine system never has a chance to return to baseline.

Hmmm - that is interesting.

I was told my doctor that going straigh ... baseline.

When I hear this sort of statement, I often wonder several things:

1. Does the doctor have any studies or data to justify the statement?
2. Does the doctor apply this equally to all patients, regardless of the severity of their RLS, their max DA dose, the length of time they were augmented, etc.?
3. Does the doctor understand the degree of suffering that a patient with severe or very severe RLS will undergo during a month long withdrawal and drug holiday?
4. How much of this is being done to justify the doctor's theory of the use of drug holidays, which do not appear to be supported by all of the RLS experts?

Rustsmith wrote: Mon Jan 23, 2023 12:53 am I was told my doctor that going straigh ... baseline.

When I hear this sort of statement, I often wonder several things:

1. Does the doctor have any studies or data to justify the statement?
2. Does the doctor apply this equally to all patients, regardless of the severity of their RLS, their max DA dose, the length of time they were augmented, etc.?
3. Does the doctor understand the degree of suffering that a patient with severe or very severe RLS will undergo during a month long withdrawal and drug holiday?
4. How much of this is being done to justify the doctor's theory of the use of drug holidays, which do not appear to be supported by all of the RLS experts?

I started to ask the very first question above and figured that the poster had no idea why the doc said that. I REALLY want to know if there are any studies...I surely haven't seen any!

ViewsAskew wrote: Mon Jan 23, 2023 2:27 am I started to ask the very first question above and figured that the poster had no idea why the doc said that. I REALLY want to know if there are any studies...I surely haven't seen any!

I bet a lot of it is just personal experience. Which shouldn't be discarded lightly. Even though I fully agree that we need more studies

My neurologist (who is a RLS specialist) is dead set against changing anything in my medication, on account that my RLS is contained right now. (I wanted to change something several times, so I had many discussions.) He says that he has seen patients struggle for months and years even after seemingly simple changes as going from one opioid to another, or being exposed to higher doses for a short time (for example in patients who got oxycodone after surgery). Yet I don't know any literature on that.

Frunobulax wrote: Tue Jan 24, 2023 9:31 am

ViewsAskew wrote: Mon Jan 23, 2023 2:27 am I started to ask the very first question above and figured that the poster had no idea why the doc said that. I REALLY want to know if there are any studies...I surely haven't seen any!

I bet a lot of it is just personal experience. Which shouldn't be discarded lightly. Even though I fully agree that we need more studies

My neurologist (who is a RLS specialist) is dead set against changing anything in my medication, on account that my RLS is contained right now. (I wanted to change something several times, so I had many discussions.) He says that he has seen patients struggle for months and years even after seemingly simple changes as going from one opioid to another, or being exposed to higher doses for a short time (for example in patients who got oxycodone after surgery). Yet I don't know any literature on that.

My only point is that we need to know which and why. Most of what we eventually learn is because of anecdote or theory that we test. There is no way to know in the beginning which way it will go. Doesn't mean it isn't worth thinking about if there aren't data or telling people about. Also doesn't mean it's truth. And we usually don't know for sure for many years.

To say that something is truth, however, means you have proof. No doctor should say that something is X without qualification if there isn't proof. All the doc has to say is, "In my experience, when we use opioids to control the symptoms prior to getting the dopaminergic out of the system, the person has more problems and for longer. Blah blah blah. That is why we do XYZ." (Or whatever the experience is).