I've been diagnosed with nighttime RLS 3 years ago. for ~2 years I was being prescribed Mirapexin. It stopped working altogether half a year ago, when I was prescribed Lyrica (pregabalin). I could sleep well with Lyrica, but a horrible anxiety replaced the exhaustion-induced depression. It peaks in the morning and always weans off in the evening.
My doc said that he never heard about Lyrica causing these symptoms, but he prescribed gabapentin anyways, a very similar generic drug.
I can't take any of them anymore. I wonder if there are other alternatives for RLS medications?
Do you know of any?
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kukunta
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Hi yes I would suggest you try something from the opiate painkilling family. They work on the urge to move as well as any pain . The mildest of this type of med is Codeine, then a bit stronger you have Tramadol. If you are in the UK you can buy Co-codamol over the counter but the amount of Codeine in that is tiny so if your symptoms are severe it may be too weak . Many members on here swear by Tramadol. ..Pipps x
Those drugs are actually used to treat anxiety in some individuals!
Hi, i use codeine on a regular basis for another symptom and I can assure you it doesn't stop my RLS , but try for yourself in case it does help, I wish you luck in what ever you try because I know what your going through , all the best John
I was on Lyrica for a short while and we believe that it was that that caused me to have 2 major seizures resulting in being hospitalised and having CT and MRI scans, was a horrible few months, since coming off them I have felt so much better, I still take other meds for my bipolar disorder as well as cocoa il for legs n back. Let's face it once you hit 21 it's all downhill lol
I'll throw my vote in with the tramadol crowd!
Not all opiates are as effective in my experience and I've used several. Tramadol and Oxycontin would be the two best imo. I've gotten benefit from codeine also but not the 8/500mg co-codamol it had to be the 30/500mg ones.
Which country are you in? I know many people in the States,UK and Canada who are prescribed opiate meds for their RLS. Some doctors seem nervous of prescribing them and you may need to see a Neurologist or a Sleep Doctor to get them. Others have only been able to get them from a Pain Clinic. Other doctors simply do not know that they can help RLS. In the UK the first opiate to be licensed for RLS came out a couple of years ago it is called Targinact. ...Pipps x
Some Drs HATE to prescribe them while others hand them out like they are Smarties.
My GP would be of the reluctant variety but still does as he understands, but also I think more so because I had been seen by the pain clinic.
Everyone wants to abdicate responsibility and Drs are no different. If you land back in a years time claiming addiction or the Dr gets a letter from the addiction services asking him to review his prescribing practices they'll want to say 'It wasn't my fault'!
Also Drs are not the all knowing creature we are lead to believe and many haven't a clue about things such as RLS - so be reluctant to prescribe for what they don't understand.
Targinact which is Oxycontin/Naloxone (the Naloxne is there to prevent people crushing and injecting the pills) is actually licensed for RLS - which is mentioned by name so the GP may feel better about prescribing it.
I would suggest Requip. I used Requip for several years before my system got used to it and then changed to Meripex which works just as well. If my system gets used to the Meripex, I'll switch back to the Requip. Works for me.
I wonder if you can keep changing them in such a way? When Mirapex loses effectiveness they don't prescribe it anymore, AFAIK.
I never realized how many ways there are to treat RLS. I guess I have to count myself among the lucky ones that found relief pretty easily. Granted it took quite a few years to be diagnosed with RLS but once I was, I was able to treat it. I feel sorry for all of you that haven't found relief yet....my only advice would be to keep trying and change doctors if you can't find one that will work with you to find something that will help you.
Hi, I feel your struggle been dealing with RLS for over 8 years I to started out with Miraplex worked well for awhile then I found out it causes permanent memory loss so I refuse to take it any more, I've tried several different drug without any relief from this nightmare until I came across Oxycodone this has been a life saver for me as I told my doctor I'd rather have my body addicted to this pain medicine then loss my memory. He agreed. Plus what I like about this medicine if I don't need any I don't have it running thru me and when I do need it it gets right in there and 20 minutes or less all jumping of leg stops. Hope this helps
I used to meditate (zazen). The reason for stopping it was exactly the anxiety. I am far too agitated, can't sit for 3 minutes.
Pregabalin does cause sleepiness for most people but I don't know if taking it another time helps. It is indeed expensive. Gabapentin is a very similar compound and is much cheaper.
Ha, yep I was one of those people, guided meditations and mindfulness very good for anxiety though ( I'm agoraphobic and had to beg pysch for the pregablin, hasn't helped my pain though 😒)
In therapy we start with a meditation. Just breathing is great. Will relly help your nervous system and anxiety if you stick with daily meditation maybe some lavender essential oil too.
I agree about dihydracodeine never had any probe since taking them
Just to say I'm pretty certain that Pregabalin causes anxiety for me as well. I've seen other reports that it can.
I can wake with a panic and my heart racing. I think if there is anything mildly worrying going on, which there often seems to be, it escalates into blind panic when I can't work out what's logical or reasonable worry or what to do about it. It's horrible.
It's one of the reasons i'd forgotten about that made me wean myself off it a few years ago (which I did but it was helping the RLS ) which has now recurred and I recognise it from before.
So weaning off again.
Some of these side effects you don't recognise, blaming eg sleep deprivation or somehow feel the worry is at a reasonable level but it isn't. It's as if once you start worrying it does something to the logic or off mechanism of it or the ability to talk yourself down.
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