On day 23 off pramipexole and there seems to be no end to this agony.
Before I had begun taking this medication, my RLS used to be pretty mild. An hour or so in the bed and then I could doze off; however, since dropping the medication, it just doesn't want to stop. Did manage 4 hrs sleep yesterday so figured that some of it might be over however, that creeping crawling feeling has still yet to become anything less than severe. Have managed just 1hr of sleep so far and it is now 4am as I write.
Do you guys think its possible that my RLS would never go back to the way it was ?
The dream of a drug-free RLS is long dead.
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Heatherlss
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Hi Heatheriss, we would all love to be drug free and have no RLS, but you will see the majority of us have to take some type of med to get relief. It can take a while to get through the withdrawals, are you taking anything to help with that, like tramadol ?
I'm taking tramadol. It's been a withdrawal full of ups and downs. Like I said, the night before was relatively quiet. I managed 4 hours of sleep and figured that I might just have been done with the withdrawal. Clearly, I was wrong.
It is weird that I'm getting it at even 6:30 in the morning. This has never happened in my existence.
While you are sill withdrawing you will get RLS at different times of the day and night, until those withdrawals are done. It will get better, i know you dont think so at the moment, and most on here who have gone through withdrawals thought the same, 4 hrs sleep means you ARE on the way to those withdrawals getting less and less. How much tramadol are you taking and when are you taking it.
Thank you so much for your kind words. I hope I somehow do manage to get through this. I've been following Jools' post and Nick's as well and that is the only thing that I keep in mind that this will pass. I'm taking Ultram and Gabapentin 100 mg( started taking it 1.5weeks ago) while I'm also taking Gentle Iron every other day.
I have an appointment with the Neuro again next week. Perhaps, I need to ask for a stronger opiod to get through this.
Hi heatherless - with side effects from drugs such as unusual body movements, then may be you should ask about other drugs that can help the symptoms such as anticholinergics. It is irony that the drug you are on is meant to help restless legs but in some people it can increase the symptoms. The drugs you are on can be checked for side effects on yellowcardmrhsa.uk
This is a report system but you don't have to fill in any personal information to find the drugs profile analysis tab listed in A-Z format. Gabapentin has serious side effects including musculoskeletal . Drugs.com lists side effects of Pramexipole including unusal muscle movements. A paper by ncbi.nim.gov/
titled Management of acute movement disorders explains how the symptoms of withdrawal from dopamine agonists can be instantly helped by anticholinergics.
As your symptoms were mild, then there are other indications for restless legs including hypothyroid problems. Diabetes too can have these symptoms. Hope you can ask the doctor about the cause of your restless leg syndrome, as if it is drug induced such as with gabapentin, and pramexepole then indications show that instant relief can be obtained from anti cholinergics. Think you should go back and ask for help. Suffering like this is awful.
Thanks. I had my diabetes checked and did not have it. Thyroid I haven't yet been tested for them. Going to the neurologist on Wednesday, hopefully something good will come out of it.
You need to read how Jools a member on here came off her dopamine med it was not easy for her and it took time. Jools gives out good info on how to cope with those withdrawals. Nick the Turk, is another one who you can look at his journey having augmentation and withdrawing from his dopamine med, he was in a very bad place at the time, he is ok now and i think still delivering post and a lot happier person. Stay strong you can and will do it.
Hi, don't despair, when I went through withdrawal I too really worried the rls would never end. While the withdrawal seemed over at about 1 month, my arms and legs were jumping still for another month before they settled down. I really was afraid i was going to stay in that state forever. (I never had it in my arms until I took pramipexole). Anyhow, I have fewer issues now and usually can get away with just a marijuana edible, (It's legal here).
I understand and I'm relying on hope. It should not be like this. I read that RLS is a night disease but 6:30 am sounds very morning like. I wonder why I'm still getting such strong RLS. I hope like you, my RLS begins to subside with time.
i started to come off pramiprexole in jan this year for the 3rd time from 3 tablets and managed it this time around .i had 3 months off work and it was an horrendous experience
then tried pregabalin and also gabapentin but side effects were really bad
just a note once off i used to get rls late afternoon and early evening through the night
once i got off the medication my rls didn't start till 22:30- 23:00 meaning i could have a relaxing evening watching telly
i used tramadol 150mm at night which works fine for me but the Dr's have now stopped letting me have it and insisted i see a neurologist
have now gone back to mirapex but do not intend to stay on this more than a few weeks
I can relate with it. It is unbelievable to have symptoms in the afternoon or early night. You can't sit and watch tv like a normal person. I somehow hope that I do well on gabapentin. I have been taking them for over a week now.
I started on 100mg, my GP is happy for me to go up to 300mg but I have stuck on 200mg. I sometimes need to supplement with caffeine and if that doesn’t settle me then a paracetamol/codeine tablet does the trick. At present I think I’d rather do that than increase the Gabapentin.
Doesn’t have to be a tablet, I used to take a flask of coffee up to bed! Also, I’ve never tried it myself, but I’ve heard some say that nicotine lozenges/gum can help.
Really sympathize with you on this and thankfully most people do seem to get through it although the timescales can vary a lot.
I was lucky in that within three or four weeks my RLS returned to pre medication levels. I hope you stick with it with the help of some of the suggestions from fellow suffers on this forum. Good luck.
I tried the same thing lasted 4 weeks after seeing 2 doctors in one day I came to terms live this way the rest of my life or go back to meds I choose meds the positive part is I cut the dose in half for me the best medication is the neupro patch I was on 5mg now it’s 2mg every 24hrs
Withdrawing from pramipexole is absolute torture. I had a similar withdrawal to that of Joolsg - and, from the sounds of it, to your own. I would agree with an earlier poster who said that it seems to take different lengths of time for different people but sadly it is not unusual for really bad symptoms to last more than 23 days.
I understand that having raised iron levels is helpful. The other thing that is important is to try and get some sleep (I can almost hear your hollow laugh) because, in a cruel irony, lack of sleep exacerbates rls. I date the beginnings of my recovery after pramipexole withdrawal to the time when my GP finally prescribed oxycontin, which allowed me to get some sleep, and a more concerted effort by me to raise my serum ferritin.
It DOES get better and you will feel a huge sense of achievement and a sense that you have recovered control over your body and your symptoms. You will find a treatment regime that works for you. You will not have to experience rls at 6.30 am - that is entirely due to the dopamine agonist.
In your shoes I would ask your medical advisors for a stronger opioid (I needed 30mg of oxycodone each evening to start off with to get proper relief but was able to reduce this significantly over time). I would also make a concerted effort to raise iron levels. Supplements are good but eating organ meats, particularly liver, has been shown in studies to be more effective and certainly works best for me (obviously no use if you are a committed vegetarian but otherwise worth considering).
There are so many on this site who have been through this and everyone will be rooting for you, thinking of you and feeling for you. I doubt if a single one regrets having discontinued mirapexin and neither will you. You have shown incredible tenacity to get this far. Things will improve and improve a lot. Keep posting. We are all on your side.
Thank you so much. I can't believe the support I'm getting around here. Just wish that the medical community works towards finding the right solution for this.
I have read people's experiences that withdrawals could last more than 2 weeks. I hope the same thing is happening with me and this doesn't become a full time thing.
I took Pramipex for only 7 months as we speak however, it is remarkable that I have such strong withdrawals.
It is extremely unlikely that your current symptoms will become a full time thing. You are at rock bottom right now. You will start to come back up in due course and you almost certainly find a substantial improvement in your symptoms.
You are unfortunate to have such strong withdrawals after being on the drug such a relatively short time although sadly it is not all that unusual. It is a powerful drug.
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