I'm 40 and have suffered restless legs now for about 10 years. Unsure if its noteworthy but i suffered with epilepsy from the age of 28 - 38 and was taking lamictal and keppra to stop seizures. i had brain surgery in jan 2020 and have been seizure free ever since so have stopped my anti epileptic meds and my RLS is off the charts. It is DIBILITATING. i take 2mg of Ropinrole at night but witho7ut fail once i take the tablet, its a near certainty that im asleep. I literally KO on the sofa. great no restless legs but this isnt good long term that i have to take a tablet that's just sending me straight to sleep n matter what im doing. if i try and go without the tablet, im in absolutely floods of tears but the RLS is so bad,... I'm pacing the living room, lying on my front, on my back, on my hunkers at the foot of the bed, doing squats, nearly actually causing myself pain because its so bad. i literally sit on the edge of the bed in tears, the off course spend the next day absolutely shattered. Is it possible there's a link between the epilepsy and the RLS or the anti-epileptic meds being eradicated and the increasing severity of the RLS. either way, i don't think ropinirole is the answer. is Gabapentin available in the UK? is this something i should consider? has anyone heard of using magnesium oil? any advice would be great? without the ropinrole, RLS is every single night in life and with the ropinirole, its instant sleep (not practical with 3 kids). could someo0ne give me some advicve? the GP doesnt want to know,. they6 told me there was nothing they could give me for RLS... it was a neurosurgeon in London told me about ropinrole as the lack of sleep from RLS was effecting my seizures. id to buy it online then myself and only then the GP prescribed it. cheers all x
Ropinirole?: I'm 40 and have suffered... - Restless Legs Syn...
Ropinirole?
Yes gabapentin is available in the UK. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks so much for this really helpful reply, Sue. I am not currently taking any other medications but i think it goes without saying that the ropinirole needs to go. Ive made an appointment with the nurse for 2nd Nov at 8.50am to get bloods done (specified iron) and appointment at 9.20am on the same day with the GP to discuss a change to gabapentin. Im not looking forward to the withdrawal from ropinirole at all but it seems a necessary evil and i do realise i'll be glad in the long run. really interesting suggestions from you to help in the mean time so i fully appreciate your support. I'll keep you posted on how im getting on. what a great resource this is to have. Thanks for everything.
Be sure to ask for a full iron panel as they can test for iron without testing for ferritin.
Sue, bloods are back. FBC normal, magnesium normal, thyroid normal.
iron count 7 (whatever that means)
ferritin 35
they've done me a prescription for sulphurous fumarate 305mg once daily.
I have no idea what sulphurous fumarate is. I searched for it on the internet and couldn't find it. I would ask your pharmacist what it is used for.
Ferrous fumarate however contains 100 mg of elemental iron and will help raise your ferritin. with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
apologies Sue, just checked my notes...its ferrous fumarate.
thank you for the reply as well. very helpful. x
Hi Sue
I just wanted to give you an update having just come from the Dr's. The first app was with the nurse. I explained why i was having the full iron panel and mentioned the ferritin and transferrin saturation levels etc. she suggested magnesium and also suggested drinking tonic water (i knew she would) for the quinine. I told her id have to drink bucket loads of tonic water to get any relief and that we are talking about a case of chronic RLS. she mentioned needing a nerve conduction study? funny enough she didn't put it in her notes though and when i went in to see the GP 20 mins later, i couldn't remember the name and the GP seemingly had no idea what i was talking about. I told her i wanted off the Ropinrole, told her about the earlier onset in the day, that its moved into my arms and that the ropinirole is not a good drug to be on. when i mentioned gabapentin, she said "no GP will prescribe that to you". i asked why? she said because of its addictive nature.
in i go to the GP and start explaining it all to her. mentioned augmentation. she didnt even flinch. i mentioned that id done my own research and that i know ropinirole isnt a good drug to be on. i told her it makes me fall asleep instantly when i take it and that I've 3 children at home. she just hmmm'd and haaaa'd and told me they dont have many people on ropinirole for RLS because of its side effects but said she doesn't know really what else she can offer. told me to reduce the ropinirole to 1mg a night for 2 weeks and come back and see her then for a review to potentially discuss gabapentin. she told me to cut the tablets i have in half. she also said she'd drop a message to neurology to see if they can suggest anything else but has booked me in for physio in a fortnight as believes this will help (it wont).
to say im deflated is an understatement. i have to ring on Tuesday to get the results of the iron panel. they also done bloods for calcium, thyroid & FBC.
THE SAGA CONTINUES......
Doctors !!! And they think they know it all. Since you only have 2 mg tablets if you follow her advice by cutting out 1 mg a night for 2 weeks you will suffer as that is too much. I would call and ask if she will prescribe .25 tablets. If not you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and measure the tablet and divide by 8 to get .25 mg. Shave off the tablet until you have reduced it by 1/8. Then reduce by that amount every 2 weeks.
Have a look at DicCarlsons Post about augmentation.The video explains what patients go through as you reduce Ropinirole. Dr Earley advises a fast withdrawal and a drug free period of 12 to 14 days to allow dopamine receptors to settle.
UK GPs know ZERO about RLS, so be prepared to argue your case. It isn't taught at ANY stage in medical training and they don't know about augmentation or how difficult withdrawal can be.
You need to get off Ropinirole, as that is worsening your RLS. It's very common. It called Augmentation.
Then follow SueJohnson advice.
In the UK you can get both pregabalin and gabapentin for RLS. Gabapentin has to be taken in split 600mg doses 2 hour's apart. Pregabalin is absorbed better and can be taken in one dose. Both are in the same class of anti epilepsy drugs, but they are metabolised differently and have slightly different side effects.
Read the Mayo Clinic Algorithm and spend time looking through the RLS UK website. The more you learn, the better you can direct your GP.
Hi Jools
I just wanted to give you an update having just come from the Dr's. The first app was with the nurse. I explained why i was having the full iron panel and mentioned the ferritin and transferrin saturation levels etc. she suggested magnesium and also suggested drinking tonic water (i knew she would) for the quinine. I told her id have to drink bucket loads of tonic water to get any relief and that we are talking about a case of chronic RLS. she mentioned needing a nerve conduction study? funny enough she didn't put it in her notes though and when i went in to see the GP 20 mins later, i couldn't remember the name and the GP seemingly had no idea what i was talking about. I told her i wanted off the Ropinrole, told her about the earlier onset in the day, that its moved into my arms and that the ropinirole is not a good drug to be on. when i mentioned gabapentin, she said "no GP will prescribe that to you". i asked why? she said because of its addictive nature.
in i go to the GP and start explaining it all to her. mentioned augmentation. she didnt even flinch. i mentioned that id done my own research and that i know ropinirole isnt a good drug to be on. i told her it makes me fall asleep instantly when i take it and that I've 3 children at home. she just hmmm'd and haaaa'd and told me they dont have many people on ropinirole for RLS because of its side effects but said she doesn't know really what else she can offer. told me to reduce the ropinirole to 1mg a night for 2 weeks and come back and see her then for a review to potentially discuss gabapentin. she told me to cut the tablets i have in half. she also said she'd drop a message to neurology to see if they can suggest anything else but has booked me in for physio in a fortnight as believes this will help (it wont).
to say im deflated is an understatement. i have to ring on Tuesday to get the results of the iron panel. they also done bloods for calcium, thyroid & FBC.
THE SAGA CONTINUES......
Jesus, Mary and Joseph.The ignorance and negligence of GPs in the UK is terrifying.
I suggest you write an official complaint and copy it to the RCGPs. Say something like this.
I have been reading NICE and NHS guidance on RLS and the website of RLS-UK, the UK charity for RLS. The RLS-UK website contains a copy of the Mayo Clinic Algorithm for the treatment of RLS.
It is clear from the guidance and websites, and the medication leaflet for Ropinirole, that I am suffering drug induced worsening of my disease, known as Augmentation. This causes severe, unbearable RLS which makes daily activities and sleep impossible. Experts say it is more difficult than heroin withdrawal. All the websites recommend a slow withdrawal to prevent DAWS ( dopamine agonist withdrawal syndrome) and often a low dose opioid like tramadol or codeine is necessary to reduce the severity of withdrawal.
All the guidance makes it clear that full panel, morning, fasting blood tests should be taken and serum ferritin raised above 100, preferably 200, by iron supplements or iron infusions.
The NICE and NHS guidance states that pregabalin is a medication that should be used for RLS once Augmentation on dopaminergic drugs has occurred.
The RLS-UK website sets out the dose and timings. The starting dose is 75mg of pregabalin, taken around 2 hours before bed, titrated up as required. The average dose for RLS is 150-200mg, the maximum dose is 450mg.
I attach copies of the NHS, NICE, RLS-UK websites with information on RLS.
I am aware that RLS-UK campaigned in 2021 to have RLS included on the medical curriculum. The RCGPs responded that GPs would be aware of the disease and the NHS and NICE guidance. That does not appear to be correct.
I would like another appointment to discuss and arrange blood tests, iron supplements or infusions and help with the difficult withdrawal ahead of me. I would like 0.25mg Ropinirole tablets prescribed so I can reduce by 0.25mg every 2 weeks, to reduce brutal withdrawal symptoms and I would like a prescription of pregabalin, in accordance with NICE guidance, to be prescribed around 4 weeks before my last dose of Ropinirole.
I have reported my Augmentation symptoms via the Yellow Card Reporting Scheme.
Yours sincerely,
cks.nice.org.uk/topics/rest...
nhs.uk/conditions/restless-...
Then attach NHS, NICE and RLS-UK website.
Also, please report your worsening RLS via yellow Card Scheme. If navigation is difficult, list 'addiction' as symptom and then describe worsening of your RLS as augmentation.
We all need to report this so doctors will STOP prescribing them.
Address of RCGPs attached.
postgraduatetraining@rcgp.org
Sadly, the response you received is why RLSUK campaigned.
No one is listening.
I will do exactly as you instructed as soon as I finish work. thanks for composing the letter for me and including the links etc. It is crazy that i have received more support from this page than i have from my GP.
In all honesty, I think they were a bit put out when I started chatting about RLS in such an informed manner. when I mentioned Gabapentin, the nurse said "who told you that?". i replied "I've done my own research". she actually said quite sternly, "you listen to your GP". she told me the GP i was scheduled to see was "fabulous". Funny enough, I don't think she took me seriously at all. i felt like i was just another tick in the box on her schedule for the day. she was full of smiles, while im sitting there with my eyes glazed over chatting about not getting any sleep or worse falling asleep at the drop of the hat from Ropinrole. she was just shrugging her shoulders going "i don't really know what else to offer you". i mentioned the correlation between the reduced symptoms at the time i was taking my anti convulsant for epilepsy and she half smirked as if i was in there proclaiming to be a medical expert. Ive had to complain to the GP before when they told my husband he was infertile whilst trying to read the results of his sperm samples from the hospital (we have 3 children now) and then again when they were prescribing me medication for degenerative discs in my back, that caused seizures (ive had brain surgery because of epilepsy). The NHS is on its knees and the Drs are very ill informed. its far too handy to write a crappy prescription and send you on your way. never in my life have i been told to cut my own tablets in half with a knife before.... but nothing surprises me.
thanks for being so lovely, informative, helpful and supportive.
Stephanie x
RLS isn't taught at ANY stage in medical training. Instead of gaslighting us, our GPs, and nurses, should admit they know absolutely zero about the disease or the treatments.We would then respect them more.
Luckily, my MS neurologist and my current GP are brilliant. They both admit they know nothing about RLS. My MS neurologist actually started prescribing pregabalin to her MS patients with RLS after I had spoken to her about the horrors of Ropinirole.
My last GP was dreadful. She told me to drink a glass of milk for calcium to help the Ropinirole withdrawals. I was sobbing in her room after 4 days and nights of no sleep. I changed surgeries.
I then started researching and I've never stopped.
The best website is Relacs, by Dr Andy Berkowski.
Lots of excellent webcasts.
The US experts see thousands of RLS patients a year, so they see in real time the problem with dopamine agonists like Ropinirole.
A UK GP will see one or two patients a year and they probably don't even diagnose RLS because most people simply say they're having trouble sleeping.
Learn all you can. If your GP objects that shows they're not a good GP.
Hopefully, you will find a GP willing to listen, accept they know nothing and learn from the info you provide.
If you hit a brick wall, can you afford to see a specialist privately?
Dr Jose Thomas at Gwent Sleep Clinic in Wales is excellent.
Prof. Walker at Queen Sq, London, is usually good, but recently has prescribed Ropinirole AGAIN to someone who augmented on it years ago. So if you see him, insist you will NOT consider dopamine agonists.
Prof. Chaudhuri at King's College in London has an RLS clinic, but again, they are still wedded to dopamine agonists. However, they will prescribe pregabalin and Targinact for RLS.
If you let us know where you are someone will know a decent specialist near you.
Most do zoom/Teams appointments so you won't need to travel.
I'm in Northern Ireland. My currently nuerologist Dr John Craig is based in belfast in the Royal Hospital. I still have review appointments once a year over the phone due to the presence of a non cancerous tumour but failing that, to go privately id have to travel to England most likely. It was the hospital in Kings Square i attended for my epilepsy surgery and my neurologist there was Dr Fergus Rugg - Gunn, who informed me about Ropinirole to begin with, though i had a battle on my hands to even get it from the GP. They were terrified to even give it to me because at the time I was taking medication for epilepsy so had to run it by the Consultant before making a decision.
Private treatment would be a financial stretch but thats not to say I wouldn't at least enquire about it if i had the resources. Anything is better than this. it'll be interesting to get the results of the bloods done this morning though im worried I forgot to fast and had water melon this morning before my appointment.
Jools!!!!!!!!!!
just got my blood results back. full blood count normal, magnesium normal, thyroid normal... iron 7 & ferritin 35!!!!!!!!!!!!!!!!!!!!!!!!!!!
they've done me a prescription for sulphurous fumarate 305mg once daily.
whats your thoughts?
You would benefit from an iron infusion! Your iron and ferritin are extremely LOW. An infusion would get your levels up much faster. Iron pills can take months/years and meanwhile, you're suffering. It is probably what caused your RLS in the first place.Prof. Walker would see you privately by Zoom and as long as you have your blood tests to send, he can request an iron infusion in N. Ireland.
In the meantime, take the iron pills once daily and continue to slowly reduce the Ropinirole. If the GP won't give you low dose opioids to settle the withdrawals, you can buy Solpadeine Max, which contains low dose codeine. It will help a little.
Jools... just had review appointment, i specifically asked for an iron infusion as told the GP that the ferous fumarate wasnt working. I told him it was giving me cramps and making me sick. he said he cant arrange an iron infusion until 2 sources of oral iron have been tried. He has now given me ferrous sulfate tablets 200mg once daily. I mean, in all seriousness, will there be a massive difference? i asked about nerve conduction testing. he told me id need to speak to my neurologist in belfast about that and about other questions i may have about the entire situation. i went into the appointment and really knew what i was talking about. he just sat staring at me. he is kind of dead pan anyway but i wasn't sure if he was insulted that i dare come in and spout off this stuff being a lowly call centre worker or if he genuinely just didnt have a clue what i was talking about. i have consultant in Belfast on 12th December so i may prepare a list of questions in the hope i get a better response.
I suspect it will be the latter. He doesn't have a clue what you're talking about.Where is he getting the idea that you have to try 2 different sources of iron pills before an infusion is allowed?
If you can afford it, could you visit a private clinic?
Professor Toby Richards at the Iron Clinic in Harley Street, London, will do iron infusions for around £700. You simply send your detailed blood results to the Iron Clinic.
If ferrous fumerate is giving you cramps and making you sick, switch to gentle iron, ferrous bisglycinate and take last thing at night.
A nerve conduction test is only used to detect nerve damage and peripheral neuropathy. It can't be used to confirm RLS.
Your consultant is probably the one who prescribed Ropinirole and is very unlikely to accept that it causes worsening of RLS. Many neurologists simply won't accept it. But, there are now more legal cases against neurologists for prescribing these drugs. Mention the Mayo Clinic Algorithm. If he isn't aware of it, he is not up to date in his knowledge. Tell him you want help to get off Ropinirole and that withdrawal is brutal. He can look at Dr Earley's video to confirm this. Dr Earley is one of the world's top RLS experts.
hopkinsmedicine.org/profile...
Also look at Dr Andy Berkowski's website, which has lots of excellent webcasts. I've also attached useful articles on the effectiveness of iron infusions.
sciencedirect.com/science/a...
Hi there , ive just come off Ropinirole , its taken since March as my private neurologist had put me up to 6mgs ! He totally poo poohed augmentation even tho symptoms were spreading and starting earlier in the day . Ive been on dopamine agonists for 20 yrs and getting off them is the hardest and cruelest thing i have ever done but so worth it . Sue and Jools on here are abs amazing and prob kept me sane and alive . Quinine is not good they say now for the heart! Im still not there , my Gp is clueless and when i said i was feeling suicidal he barely replied. They wont give me an opioid to help with the withdrawing yet I had one 2 yrs ago from same Gp practice , apparently I might not wake up morning ! Once again Im going privately end of Nov. One wanted £265 for a phonecall , I did email him with a few comments but never got a reply strangely !Sadly its pretty much standard price now . Anyway sorry for rambling but good luck on your journey but it will be worth it in the end . Always happy to chat . Take care and good luck . By the way I take Gabapentin , Codeine , Clonazepam and Dipyridamole plus Magnesium , gentle iron and b12. Who knows what helps but something does ! I will be up in the night when they kick off so I knit as distraction works well for me . Take care
Hiya! Thanks for messaging. Glad to hear you are off the Ropinrole. it is a bloody curse isnt it? i started last night halfling my tablets as instructed by the GP. I was standing in the kitchen with a knife thinking "this cant be bloody right...." but on half the dose I had a terrible night as expected. I'm waiting to get to get results of bloods on Tuesday and I am really hoping that something shows up with the ferritin levels as i got a bit of hope from the replies above telling me that in a lot of cases, once this is addressed, RLS can improve or even be eliminated. going private is such a stretch for me. ive a baby in creche and 2 other children so on the mouth of Christmas, i just don't have the means to fund it unfortunately. You are right though, Sue and Jools have provided such reassurance as well as the fabulous information and I have now found myself absolutely addicted to researching this myself. At some point in the future i really hope this terrible condition is given the respect is deserves. i suffered seizures for 10 years and had brain surgery in London in 2020 as a result. Although I wouldn't wish it on my worst enemy, i genuinely have suffered more at the cruel hands of RLS.
the Doctors dont have a clue 
Hiya, thank you very much for your extremely helpful reply. I am currently sitting in work so just browsing some of the related info you suggested from the mayo clinic.... ihad heard of augmentation before but really wasnt too sure what it was... having read it... YES!!!!!!!!!!!!!!!! my symptoms are now not isolated to evening time and can happen randomly during the day as well. i forgot to mention in my last post about my arms but it happens to my arms as well. i have a lot of reading to do because I need to make sure i am as informed as possible prior to my docs appointment on the 2nd November. I am fully prepared for the fact that they'll make me feel stupid to compensate for the fact that they know little about the things I'll be talking about so i really do need to educate myself fully. I really appreciate your advice. thank you very much.
They'll possibly suggest increasing the dose or switching to Pramipexole or Rotigitone patch. Do NOT agree. Once you've augmented on these drugs, you'll quickly augment on another.
As Dr Earley says, EVERYONE taking thrse horrible drugs WILL experience severe worsening of RLS.
One day, hopefully, the RCGPs will agree to teach RLS properly and dopamine agonists will be banned ( or at least reserved for people where everything else has failed).
You have a choice. You can follow Dr. Early's method of coming off ropinirole cold turkey or the suggestion I gave above which is what most people do. If you come off it cold turkey prepare to really suffer and probably not sleep for the 12 to 14 days.
that was actually the question i was going to ask next.... what happens if i go9 off it cold turkey. you've now answered that. thank you. unsure i can cope with the prospect to be honest....
I took Ropinirole for 16 years and was up to 8mg per night. Been off it now for over 2 years. My advice is to taper off as slowly as you need to. Listen to your body. I hope you have people in your life who will emotionally support you through this. A low dose opiate can be very helpful as they can relieve RLS symptoms.
thanks so much.... it is a very tough situation. the RLS symptoms can send anyone into a melt down. I spend countless hours just sitting in tears in the middle of the night as can get no respite from the symptoms. the alarm goes then at 6am to get myself and the 3 kids ready and I could just break down into tears again from sheer exhaustion so I know exactly what you mean about needing emotional support. RLS isn't given the respect is deserves by medical professionals. it is a bloody curse of an illness. glad you are off the ropinirole now 
I feel for you having to go through this while working and caring for 3 children. I was retired with no children at home. Finger crossed you will have a relatively easy withdrawal. So true RLS and the horrors of dopamine agonists are so little understood and appreciated.
Please do not go cold turkey. I very foolishly did that had no sleep for days, the worst RLS, hallucinations and the augmentation symptoms never went away so that I still have RLS 24 hours per day and still have RLSin my arms as well as legs.
ahhhhh dear, i am so sorry to hear that. sounds absolutely horrific. i had to go and collect my tablets from the chemist yesterday as has no ropinirole the night before and it was absolutely horrific. i was like some sort of crazy drug addict, searching under the bed and pulling stuff out of drawers, in the hope of finding a tablet that had perhaps gone astray so the thought of cold turkey for a prolonged period of time, just sends shivers down my spine to be honest. i need t5o see if i can get my prescription changed so that until the 2nd Nov, i can get 0.25 tablets to help me reduce slightly as currently taking 2mg (though it barely does the job) took one last night and didn't really matter, within the hour i felt my legs going. really hope you get some respite soon x
Pregabalin / gabapentin is an anticonvulsant used for some forms of epilepsy so presumably will have some similarities to your previous epileptic medications. The fact that it can also be used to treat RLS seems consistent with your experience that your epilepsy medication was controlling your RLS. It also seems likely that gabapentin or pregabalin will help with your RLS. Fingers crossed.
I use Lyrica 200mg at bedtime and it works great. I used Requip for years with many breakthroughs. The side effects were staggering for me. I developed a gambling addiction that has ruined my life and 47 year old marriage. Get off that drug asap!!!
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