Day 31 since I last took the dose of Pramipex (0.125mg) after having been on it for 7 months and my RLS still hasn't gotten any better. I don't know if it is the withdrawal or this is what my RLS is now forever. It never used to be like this before pramipex when I used to only get it for an hour and then would go away. I now dread that there has been a permanent damage done by Pramipex which is apalling considering I had been on it for only a relatively short period of time. I'm still getting creepy crawling feeling in the afternoon (very mild) and night just bangs up.
Going to see a new doc (neurologist) this time tomorrow. Currently taking Gaba (100mg) and Tram (50mg ) for over 3 weeks now.
Don't know how and when this will end.
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Heatherlss
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I hope too that increasing gaba would be helpful. But can't increase it on my own. Went to see a neuro today a new one, and he was of the opinion that I should take Pramipexole. Didn't know what to tell him. Going to see another doc tomorrow.
I will see another one tomorrow. From what I've read increasing Gaba might help rather going back on Pramipex. I also think that if I were to take Pramipex now it would spoil all this rush of emotions I've had to go through in the past four weeks.
Also maybe, look into getting extended release Tramadol 100.
The rls situation may go on for a long time, but if you are not taking triggers of any sort, it should eventually get back to pre Prami days.
Have you kept a diary for possible triggers. It has to be forensic for difficult cases. For instance, I discovered one of my triggers was raising agent in cakes and biscuits. For others it may be oxalate foods- celery etc.
Sometimes a trigger may be something you like too much.
I am consciously following what I eat. I had a good night 2 days ago when I slept for 4 straight hours and followed the same routine for the next 2 days but they just weren't the same. I will be talking to a new doc tomorrow with the hope of discussion of a treatment something that doesn't involve DA at all.
The continued symptoms do not help to give you much needed rest, and the exhaustion itself may make the RLS worse. So, as lapsedrunner says, you may have to increase the gabapentin until you find your effective dose. Once your symptoms are well controlled again, you can then try to see of lower doses are equally effective. It is always wise to find the lowest effective dose. If gabapentin doesn’t work, pregabalin may. Otherwise you have to rely on the tramadol or (better in the long term) codeine or oxycodon.
I'm keen for RLS to settle down however seemingly that is yet to happen. I know perhaps increasing the Tram might help me but I don't want to take meds on my own without any supervision and I'm not having any supervision now since my previous doc wasn't keen on increasing Tram as he says that it risks addiction and should only be taken in critical situations. Saw a neurologist today who was of the opinion that I should take Pramipex.
Thank you so much Parminter for your kind words. I need some real good motivation these days as this withdrawal period has severely let me down time and time again.
My ferretin is quite low. 46 I think it was. I'm taking Gentle iron every night but I figure that an IV Iron is paramount. Will discuss that with a new doc who might be willing to listen to me.
My GP, when he understood how important it was, was happy to give me infusions in his rooms.
But remember that, if you do get infusions, it takes forever for the iron to get where you need it. It literally goes everywhere else first - brain last. That will also be happening with your gentle iron.
And perhaps your new neurologist will be happy to give you a stronger opioid to get you out to the other side.
I hope so.
You prove what I have always thought - that prami can cause augmentation almost from the word go. Nasty, nasty stuff.
My experience today was awful. This one was so arrogant. He literally asked me to leave and just take Pramipex. According to him, if Pramipex doesn't work then I wouldn't be able to sleep properly for the rest of my life. I discussed with him augmentation and he just put me off saying that ferretin 35 is good. It is such a bad feeling to have to face such arrogant doctors. They feel like they're god.
What about your GP, Heather? MIne was clueless to start, but after many years of hell I just decided to take my fate into my own hands. I started studying. Every sleepless night (when I was not compulsively spending money) I read and printed out good, up-to-date information. I joined the Restless Legs Foundation, I read all their stuff and listened to all their seminars. I followed every lead and became quite a good researcher. It took quite a while.
I waited until I have a good, fluent overview of the condition, then I put together a big file of evidence-based information, chiefly scientific papers, and took it to him. It was all upwards from there. He was grateful, in fact - of course he did not want to see me suffer.
GPs are entirely capable of treating this, it is not rocket science. But we must accept that they have no training in it, so we must do it for them. And GPs are seldom arrogant in the way that specialists are. I have avoided the latter like the plague.
Can you find the energy to pick yourself up and try again?
In the meanwhile would you consider a teeny-tiny dose of prami until you find a better solution? I am amazed that he did not discuss anything else, like gabapentin. Your GP could do that. Many people on this site do a mix-and-match, with an opioid as backup.
It need not seem like going backwards, just a respite while you find a better solution. You must not continue to suffer like this.
I know how that feels. I was completely overwhelmed for so long........exhausted from lack of sleep, exhausted from the hopelessness of it all, seriously wondering if it was worth it.
But you just keep picking yourself up and trying again.
Yes, when you have the energy, get a new doctor. Are you in a position to do that?
There is no point in having a doctor who will not help you. The great Doctor Buchfuhrer, who patients cross the world to see, says that he has a success rate of 98% - and he only sees the worst of the worst.
Why do you not write to him, clearly stating your case? He will reply, and you can take that reply to your next doctor. You can send him a message through rlshelp.org - the website of the Southern California RLS Support Group, to which he is attached via Stanford University, where he is a sleep specialist).
No-one should have put you on prami in the first place if your RLS was mild, and occasional.
(There was a young man in this chat-room who had taken the drug for off-label uses, for a short time. And he was rapidly knocked sideways just as you were.)
I had all of that printed out (my conversations with Dr B) but he was so arrogant and so dominating that I could not bring that up. It was just a really really bad experience.
I do look forward to waiting for a few days and then trying again with my GP in the hope that he would listen to me.
I wish you the very best. Practice what you are going to say to the GP so that you can be as cool and collected as possible. In my experience GPs don't worship specialists too much, for the same reasons we don't. You could start by saying, very calmly, that you saw the specialist but that he did not listen at all, and he was arrogant and dismissive and obviously out of date.
Thank you Elisse2. This forum helps me say these things out loud; something, I am unable to because people around me just don't get it. I had a doc telling me that it must be nothing and it shall pass. I've had someone tell me that I don't have RLS. It's been quite a journey so far. Yesterday, a neuro suggested to me that I should continue taking Pramipex. Going to see another one probably tomorrow. Hopefully, this doc would not be so stubborn
I am so sorry you are not finding the help you need. I hope this new neuro will be more understanding and know MORE about RLS and Augmentation than who you have seen so far. I really really think extra Tramadol will help you with the withdrawals. I dont know of anyone on here who has used Tramadol while withdrawing and got addicted. yes i can be addictive, but used wisely you should be ok, , and you can if need be weaned back off it later. Some doctors and neuro's have no idea how to deal with RLS, they dont seem to understand that opiates are used ALOT for RLS, Only if you are a addictive person , then of course they are not a good idea to take. Good luck seeing the new one.
I had an appointment with the neuro today and it was beyond awful. Things he said to me are so hurtful. He told me to get off google, that he had spent 12 years studying to reach where he is not for someone to read on google and tell him. He said that if Pramipex doesn't work, I should start praying that I manage to sleep well somehow for the rest of my life. He said that ferretin at 35 is good and therefore anemia is not the problem. He had got on my nerves so much that I could barely say anything and he ended up writing yet another prescription for Requip this time.
As for Tram and my GP, he said that he wasn't willing to prescribe any more opiod and that I should get a neurologist's opinion.
OMG, what a prat you saw. ! Where abouts do you live Heather, dont give full details, someone on here might just know of a decent neuro or even a doctor near where you live, This is beyond ridiculous seeing these stupid "professionals" who are in my opinion in no way Professional. Makes me soooooo damn angry that RLSers get treated so badly. !!
It was freaking unbelievable. I live in New Delhi, India. I went to what was supposedly one of the best hospitals in the city. Real shame though that I couldn't meet the director of neuro. Nevertheless, I'm quite averse to taking DA despite his prescription. The moment that he said that ferretin at 35 is fine, I decided not to mind whatever he said/wrote because he clearly lacked the knowledge.
Oh heck, India. i dont know how there health system works over there, but i dont like the fact that all who you have seen so far, are not willing to listen to you the patient. It might be to the best hospital in New Delhi, bu that doesnt mean they know enough about RLS. and that can be like that in any country. I really dont know what to suggest to you, apart seeing if you can get through the withdrawals on your own. Maybe someone else can suggest some ideas for you. Have you been prescribe the tramadol for just one a day, and only have enough for one a day. ?
I have been prescribed for only once a day and the stock ends in 3 days. I'm at wits end too. I actually thought about buying the medication on my own, apparently you can do that here. But I'm too scared to do any of this without any supervision.
Going to try again with my GP in a few days time. Hoping this time that he's in a good mood and is willing to read all that I will take along.
Sometimes it can be HOW you ask your doctor to read what you take, as in dont mention google. Try to say this is information from very reliable doctor's who do research and are RLS specialist and have found what can work and what cant work for RLS. Would you please read it and see what you think, that way you are not telling him you know more than he does. That way your doctor will still think he is in charge. I hope he will allow you to increase your Tramadol, you could say i only want to take extra for a while to get me through this then i will reduce it again. Good luck.
I went through the same thing you are describing with the RLS. It took a very long time to get off the pramipexole. I did not find gabapentin very helpful. My RLS was active during the day and in my arms and jaw not to speak of my legs. A doctor prescribed Oxcarbazepine (an anti-seizure drug). I have been increasing the dose slowly and now that I am on a little higher dose I am finally sleeping 6 to 7 hours a night. I am not sure how long this will last but I will take the relief I now am getting. I wish you the best.
I am so glad to hear that you are finding relief. Oxcarbapazine is similar to Gaba I suppose. I'm having such a hard time finding a good doctor who is at the very least willing to listen 😔
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