RLS .. 3am and cannot sleep

[YoghurtLover2]

I’m weaning off Pramipexole… on 1/4 of .250mg now and 300mg Gabapentin. I’m struggling again to sleep . I’m having an appointment with my doctor tomorrow and want to ask for opioid to help. I’m in Canada and not sure whether she’ll give it because of opioid crisis. Which one should I ask for? Apologies to Sue, Jools and others . I see now I could have saved all your advice. Unfortunately I don’t know where to find it now. 🥲I’m learning ! 😂 I’ll try saving it this time !

[SueJohnson]

Click on your profile. There you will see links to all your posts and replies and clicking on those you will see the replies to your posts or replies.

I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

[YoghurtLover2 in reply to SueJohnson]

Thanks Sue🙏 What dosage do you think and for how long? And would I be taking methadone with Gabapentin and the little Pramipexole I’m still on?

[SueJohnson in reply to YoghurtLover2]

Yes you can take it while on the others. For Methadone according to the Mayo algorithm the usual starting dose is 2.5-5 mg and the usual effective dose is 5-20 mg. For Buprenorphine according to the Mayo algorithm the usual starting dose is .5-1 mg and the usual effective dose is .5-6 mg.

I suspect you won't be able to get an opioid as they usually don't prescribe it except temporarily to get off a DA unless one has tried gabapentin or pregabalin and they haven't worked and since you are only on a starting dose of gabapentin and haven't completely weaned off pramipexole and several weeks haven't gone by after that and your symptoms have settled you don't know whether gabapentin will work. In any case if the doctor refuses you can ask if s/he will prescribe it if gabapentin doesn't work.

[Purpleyam in reply to YoghurtLover2]

Hi I'm in Calgary, Canada 🇨🇦 and I've found that even sleep specialists here are not keen on prescribing buprenorphine or methadone. I did however have no problem getting Tramadol prescribed to help me in the last stages of weaning off Pramipexole. I now take 50 mg tramadol plus Gabapentin split into 2 doses of 600 mg each. Good luck with your journey, please tell us how you do.

[YoghurtLover2 in reply to Purpleyam]

This is VERY helpful … thanks so much ! I’m currently on 300mg Gabapentin and on 1/4 of .250 Pramipexole. I’ll go down another 1/8 this Friday and next Friday be totally off Pramipexole. Two nights ago I had max 2 hours sleep … RLS … could have been partially because of stress. Last night I had some RLS after 2 hours sleep , got up … walked around a bit and then had another 4 hours sleep …. bliss 😉I have phone appointment with Dr and wondering … if she does prescribe tramadol … whether I should just drop the 1/4 Pramipexole Friday and be done with it!!!

[Purpleyam in reply to YoghurtLover2]

Good job! You're almost there. I did do that, rushed my last few decreases and just got it over with. Yes I suffered but we all had quite the suffering at the end doses anyway. The tramadol helped me settle quicker and start to sleep. The BEST improvement was soon afterwards discovering that I could read again in the afternoon, or take a nap - without going squirrely! 🐿

[YoghurtLover2 in reply to Purpleyam]

I love the 🐿️😂. Just another question .. how long did you take Tramadol and what dosage ? Just so I can tell my GP tomorrow

[Purpleyam in reply to YoghurtLover2]

Yes, good question. I am still taking tramadol now after 14 months. I take Gabapentin as well. I found that one medication alone wasn't enough and many of us end up on dual meds. This was approved by my Sleep Specialist doctor so my gp had to go along with it. Good luck! 👍

[YoghurtLover2 in reply to Purpleyam]

Thanks 🙏

[SueJohnson]

In Canada a doctor needs a special license/permit and must take courses to be allowed to prescribe methadone. Buprenorphine does not so that might be a factor.

I would go armed with a printed copy of section of the Mayo Algorithm on opioids at Https://mayoclinicproceedings.org/a...

If you haven't joined the Restless Legs Foundation at rls.org I suggest you do. It costs $40 a month and has a monthly magazine, They have lots on information on line. They also have a publication you can download and print on the Member section called Causes, Diagnosis, and Treatment that has a section on opioids.

[sangeet1]

i am trying to taper down on ropinirole but when i get to 0.25 my restless legs are very severe cant stand it and it is damaging my body they are so severe, i am going to doctors tomorrow as well to ask for opioid, oramorph was refused before, given codeine witch was too weak did not help at all just gave me constipation

[SueJohnson in reply to sangeet1]

Go back up to .50 mg ropinirole (.75 mg if you dropped straight from .75 mg to .25 mg) and let you symptoms settle for a few days. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. It will take a little longer but be much easier and there is no rush.

[teakabeagle]

methadone or Buprenorphine as they are longer acting and you don’t have to “top off”. Buprenorphine is gaining favor due to its partial opioid agonist status and “ceiling effect” on respiratory depression.

[Purpleyam in reply to teakabeagle]

That's good to know. I've researched so many different side effects from so many variations of RLS drugs... ugh. I just get worn down! I need to make myself a chart of pros and cons. I will throw a question out - has anyone experienced hair loss from buprenorphine? I see insomnia, depression/anxiety and constipation as fairly common side effects.

[teakabeagle in reply to Purpleyam]

I’ve had none of the above from Buprenorphine

[Purpleyam in reply to teakabeagle]

Thank you, that's great!

[GoForward]

Just reading your post YoghurtLover2. I’ve just returned home. I am in Canada. I have been completely off of Pramipexole now for exactly 3 weeks. I have been taking Suboxone. Sublingual film format. I had no difficulty getting it prescribed via a private gp. Here is my experience with it so far.

I started taking the Suboxone mid-January while I was still taking .5 mg of Pramipexole. I cut the films and got relief from RLS symptoms by taking the equivalent of .25 mg Suboxone. Unfortunately, as I continued weaning off of the prami, I had to increase the Suboxone. I am now taking 1.5 mg and I am awake with RLS symptoms tonight at 2am.

I also have, unfortunately, many of the side effects some Suboxone users have. Nausea, constipation (can usually control with diet, but not always), and very severe depression (periods of complete despair).

I know from this wonderful forum that many people who go the Buprenorphine/Suboxone route have tremendous success. Unfortunately, I am not one of them, at least not yet. Perhaps it is because I am still in the first 3 weeks of being completely off the Prami? I am not sure.

I also found I couldn’t take the Pregabalin (50 mg) together with the Suboxone. Apart from weight gain, I felt the Pregabalin only increased the constipation and depression.

If I were you, though, I wouldn’t take my experience as a reason not to try Suboxone. We are all so different. If you can get a prescription, it’s definitely worth giving it a try.

[YoghurtLover2 in reply to GoForward]

Thank you so much ! 🙏💕We are on quite the journey with this RLS … but so good not to feel alone!