I have had RLS for 25 years. In a couple weeks I will be transitioning from 400mg lyrica (at 4pm) and .5mg clonazapam (night time) to 5mg methadone. It took me over 6 months to get off 6mg er after 7 years of usage (2 years of this period I had nightly augmentation).
Lyrica/clonazapam makes me walk like a drunk person (uneven gait), unable to focus/limited short term memory +++. I have been on this combo now for 4 months.
So in moving to methadone, I have three questions:
1. How to best transition? Doctors are always non specific on this. Can I stop the Lyrica/clonazapam one day and start with methadone the next? I am concerned about mixing them as the combo appears deadly…
2. Has anyone experienced any side effects with methadone of concern?
3. How long can I be on methadone without concern around addiction? My doc is suggesting he may put me back on roperol in 6 months- 1 year. He considers this a reset.
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I have no experience with your situation, but if you don't get any other help here, I suggest you check out Dr Mark Buchfurer's site. In the letters Q and A pages ,he deals with these sort of matters regularly ( he is a great advocate for methadone) or you can email him direct through the site. Tiny yellow icon on Left margin of opening page. He usually replies within 36 hrs.
It's quite an old fashioned layout, but probably one of the top resources for RLS in the world. Mark is a tremendous asset for RLS sufferers.
I spend many a happy hour during the restless nights reading about other sufferers worse off than myself!🌚
I'd be going back to your doctor and asking about how to transition from your current regime to methadone. Ask and ask again if they're not giving specific replies. They have a duty of care to do so.In any event, neither Lyrica nor clonazepam should be stopped suddenly. Especially when you're taking such a high dose of Lyrica.
Personally I reduce Lyrica by 25mg per week on the two occasions that I've wanted to lower my dose.
With clonazepam i reduce by a quarter 0.5mg tab and stay at that dose for at least three or four days.
This is just how I do it.
I'd really encourage you to speak to your doctor about your specific circumstances.
And yes, you do need to take care with gabapentinoid /benzo/ opioid combining.
Thanks for validating my need to get more support from my doc on the transition. It is so much harder to do when you don’t have a relationship with the neuro specialist. I have never met him in person due to COVID. Only on Zoom.Our first in person appt scheduled in 2 weeks, just got moved to zoom.
He had me do a sleep study a month ago and diagnosed mild sleep apnea which could apparently also impact RLS negatively. He wants to start me on a CPAP to see if this helps my RLS symptoms. Being hooked up to a machine while I sleep is not my cup of tea, but at this pt in time I am ready to try anything to reduce meds and symptoms.
Anyone else gone that route before with any success?
Hi I don’t know about lyrica but I’m on clonazepam and have been for 15 years. I would only ever come off it with medical support. Its too powerful to stop on your own. Please make sure you get the support. Some people need diazepam to help get off clonazepam. Stopping benzos too quickly is dangerous. Really shocked they’re letting you go this alone!! 😳
I personally would ask your doctor for specific instructions on how to make the switch.Low dose opioids are safe to take for decades for severe RLS- Dr Winkelman is doing a study now on this to ensure opioids are prescribed to RLS patients amid the US opioid crisis. Addiction is different to dependence. You were totally dependent on Ropinirole yet your doctor wants to put you back on it. We are all dependent on our RLS meds but we're not addicted to them.
Consider very, very carefully before you take another DA like Ropinirole. Once you've suffered augmentation, you'll quickly suffer it again. I think Methadone is a better option.
I attach the opioid study and definitely ask Dr. Buchfuhrer what he thinks. Madlegs and I agree on that. He's a top US expert & gives advice for free. Contact him at somno@verizon.net
I am a patient of Dr. Buchfuhrer. He put on methadone to come off ropinirole. I had a very difficult time because of my extreme sensitivity to opioids. Won’t go into my long story but I will say I am now off ropinirole and would be more than happy to take methadone indefinitely as a replacement. It is very effective at relieving RLS symptoms. But, alas, my body cannot tolerate opioids. I get extremely sick and end up in bed for weeks whenever I give them a go, although I believe I am an exception. If you start methadone and it works for you I would suggest stay on it without going back to ropinirole unless there is an obvious reason to do so. In my opinion ropinirole is a very evil drug.
I was severely nauseous for 10 days after starting Buprenorphine. I was devastated as it completely stopped ALL my severe 36/40 RLS. However, I started cannabis oil with 20% THC and it resolved the nausea. Can you access cannabis oil in your state? It's used by chemo patients so might enable you to take the methadone.
That was my experience Jools, although I only managed one night on buprenorphine. I couldn't bring myself to take it again the nausea was so bad. I can't believe you managed 10 days of it!
Last chance saloon. My RLS on Oxycontin and pregabalin was still very, very severe 36/40. Cannabis had given me a miraculous respite by allowing me 3 hours sleep but I honestly couldn't face the rest of my life living with nightly torture. I'd researched painless suicide very calmly and logically. Another 5/10 years of the nightly torture was unbearable.That's why I stuck it out. The first day I was so ill I couldn't move and vomited at midday. The next few days were awful. I lost half a stone. Couldn't face food and felt dreadful. Apparently Zofran really helps but is only available from hospital in the UK. My MS nurse arranged a prescription but I read the side effects and freaked out. The cannabis light bulb moment stopped the nausea overnight. I remembered it stopped chemo nausea.
I don't use it anymore as I think most people adjust to Buprenorphine and methadone but the time varies enormously.
I'm clearly very sensitive to opioids as I then developed severe panic attacks but was expecting them as I had them at first with Oxycontin.
Pregabalin stopped them so I've added a small 50mg dose and hey presto! No panic. It does cause a racing heart for about a minute 3 times a day, but even that is wearing off.
I've now had 8 weeks of utter bliss with zero RLS night or day and sleeping 8 or 9 hours every night.
Even if it stops working, I will have had these blissful weeks.
If your RLS is bad, think about trying Buprenorphine again but stock up on Zofran or medical cannabis oil.
Your story really moved me Jools. Your experience pre-buprenorphine does sound like real torture.
And yes, desperation is a true motivator! I’m glad you did stick it out and now have something that works so well.
And it’s great to know that there’s something out there to help with the nausea from Buprenorphine. I happen to have scripts for all three….Bupe, Zofran (Ondansetron) and medical cannabis.
I’m still on pregabalin but tomorrow I’m starting a 6 week trial of repetitive Transcranial Magnetic Stimulation.
I’m hoping that makes a difference but good to know there’s something to fall back on should I need it.
I really hope the TMS helps. Do report back to let us know of it works. New treatments may help and we are the guinea pigs. No one is doing any trials in the UK or Europe or Oz so we have to do it ourselves. Fingers 🤞.
Thanks for you reply Joolsg. My experience with opioids, and I’ve tried most of them, has been that the nausea is minimal for a number of weeks but then it comes on like a ton of bricks as it builds up in my system. When this happens nothing helps. I become completely incapacitated. I live in California so I have access to all cannabis products. I’ve tried CBD with THC, smoking cannabis, eating edibles and taking Zofran. The last bout with this was 6 weeks ago. I was in bed for 2 weeks and lost 10 lbs. I am a very small person so that is a lot to lose. I was so desperate I was taking at least 10 (dose is supposed to be 2) zofran tablets a day with no relief. This was the 4th time going through this. I didn’t want to give up on using opioids so I kept trying. Unfortunately my body just does not tolerate any opioid. Dr. B. said he never came across anyone as sensitive to them as I am. Thanks for the advice. I’m glad you found nausea relief with CBD with THC.
I'm so sorry to hear that. I can completely understand why you can't continue with severe nausea. I remember thinking that my severe RLS was preferable to that overwhelming nausea. It's why we desperately need research into new drugs to treat severe RLS. I also have MS and there were no treatments at all in the early 90s. Funding & research has completely changed that & newly diagnosed will have minimal disability because of the incredible treatments now available. Imagine if that could happen for RLS?If we all join the US foundation, that money is used to spread awareness and fund research. It's a snowball effect.
Dr. B has put me on low-dose (5 mg, twice daily) methadone for over 2 years without any significant side effects. I consider it to have saved my life. As for tapering off your other meds, Dr, B would be a great person to consult with. Best of luck, as sometimes it is difficult to find a pharmacy to fulfill an opioid prescription. Walmart refused me - no questions asked. My local grocery's pharmacy, however, has been okay with it.
Hi The DoDahMan, I am planning to switch from oxycodone which after 4 years of taking daily gives severe insomnia to Methadone, I'd like to get your experiences with methadone, any insomnia, and how do you manage with the constipation? I have heard so many bad side effects from methadone, therefore I need your opinion on this before I make a decision to do the switch. Thanks.
I also take methadone (10 mg/day) for RLS and while I can’t speak about your first question, I can speak about your second question.
The biggest side effects I have experienced are constipation and daytime sleepiness. The constitution is treatable with over the counter remedies or increasing dietary fiber. I got used to the daytime sleepiness and it stopped being an issue for me after a couple of weeks or so.
The biggest hassle by far was/is finding a pharmacy who fills methadone (in the US -Texas).
Definitely do not go back on ropinirole. I was on .5 mg clonazepam and came off it by reducing by .125 mg every two weeks. You don't need to split your pills as that would be difficult to do. They make .125 and .25 dissolving tablets which is what I used.
I take 10 mg of methadone nightly. I started out with 5 mg ( it didn’t do much) then went to 7.5 and that worked great for a couple of months. Then it started to have less of an affect. So I went to 10mg.
I started on pramipexole and had horrible augmentation and impulse control issues. So opiates seemed to be my only option. I had tried gabapentin while on pramipexole, but felt like a walking zombie.
I find that methadone works the best for my symptoms. I have gotten super itchy but I took an antihistamine (non drowsy) and that stopped.
I see a therapist to help with the mental issues, withdrawal is a BITCH and reeked havoc on my life.
I am finally feeling better. Methadone has been a lifesaver.
I had 400 mg of Lyrica for maybe a year. It is the worst drug I have taken in my life. Stop it gradually and take the 5 mg dopamine (start with half a pill) but do not stop the clonazepam.
If you are taking ropinirole or pramipexole, you should stop it VERY VERY slowly, over a few months.
I am now on 5mg of methadone and 0.5mg of clonazepam and my RLS is totally under control.
I was on methadone 10-15 mg for several years. It wasn't perfect but it was better than clonazepam. I tapered off clonazepam before starting methadone.When I had knee replacement surgery, my doctor advised me to get off methadone and take morphine instead. He said that methadone could cause breathing problems during surgery. I am going back to methadone after dealing with surgery recovery.
There must be a better solution than these heavy drugs!
As others have said, make your transition carefully.
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