Ropinerole not working

Good morning from belfast,

Its now 6am and iv been awake for 27hrs straight, no sleep or rest as my rls is in overdrive, at the minute im on 1mg of ropinerole at night and I've been on this for quite a few months but clearly it's not working for me, I've an appointment with my doctor next week to discuss new meds for nerve pain and I'm wondering if any of u lovely ppl have any suggestions of other meds I cud mention to my doctor about trying as im at my wits end and physically and mentally exhausted, iv also been on pramipexole, tramadol and gabapentin but to no success 😢

36 Replies

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  • Might you be on any antidepressants?

    They wouldn't exactly be helping the rls.

  • I have been on a few different ones but stopped as I noticed a connection between them and an increase in my rls but I was free of antidepressants for about a yr and still had these struggles with my rls

  • So you didn't go with the Vensir?

    The Ropinerole should continue to work- unless something else is triggering the rls.

    Given that you have tried those other meds- then options are limited. Opiates would be your next step- but Tramadol didn't work.

    Have you got serum ferritin checked? Might be worth trying "Gentle Iron" Fer bysglicinate- search for advice on this site- or read some of the recent posts.

    Good luck.

  • Yes I tried the vensir but it aggravated my rls and gave me terrible sweats so im not taking anything atm, iv had my iron checked and it was slightly low, I must ask my doctor to check my serrum ferritin wen im down, I just feel at a loss and im struggling to function on so little sleep, thankyou for ur help.

  • Try taking iron Bisglycinate 25mg at night, must be taken with Orange juice to aid absorption. Some people on here get relief within an hour or so.. Even if this is not the case for you it will help in the long run by buildinng up your iron levels thus helping your symptoms. Have you ever seen a specialist for your RLS? if not maybe you shouldask your GP to refer you. Dope helps many people. I am in the UK but am going to try it. I am not a smoker so will make it in to cookies as someone else suggested on here. My son tells me it is really easy to get hold of even though illegal. desperate times call for desperate measures.

  • Iv placed an order for some iron as mine was slightly low, my doctor has referred me to a neurologist but like most referrals it cud take up to a year, that was a gd 6months ago so hopefully it will b sooner rather than later, I too have heard about cannabis helping but im not so sure about trying it, u can let me know if it works for u 😁

  • crikey ! that is a long time. The Iron I mentioned is the one you should get. I think regular iron tablets do not work as well and can cause constipation and other side effects.

  • Hi Mantel, is the iron still agreeing with you?

  • I tried chocolate brownies laced with Marajuana in addition to the Ropinerole i was taking rather than increase the Ropinerole. It seemed to me that the effect was the same as upping the R. On looking up how it works it seems it increases dopamine so it's no different from the R. And I've discovered chocolate triggers my rls so gave up that trial.

  • Hi i m on pregablin and pramipexole together .have good days and nights for weeks then god knows why its as bad as ever. But does help.

  • I was at the pain clinic and he sent my doctor a list of medication to help my nerve pain, he seemed to think it cud help my rls too so hopefully wen I see him next week we can find something to help, thankyou

  • I suggest, and I am suggesting this for anyone with really bad sleep problems, that you look into Chronic Fatigue Syndrome. RLS is one of the things that can cause CFS, but fixing the RLS does not necessarily stop the CFS, since with CFS the hypothalamus malfunctions and throws off the sleep-wake cycle and one is forever in a self-perpetuating vicious circle. (The CFS can aggravate the RLS and vice versa.) Meaning there is more to a sleep problem than RLS, evidenced by the fact that there are people who do not have RLS and do have sleep problems. Whew!

    A really good book is by Dr. Jacob Teitelbaum, "From Fatigued to Fantastic!". He has a website also. Another place to look is Dr. Tori Hudson's site, as well as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (this because one can have CFS and Fibromyalgia and RLS together.) Dr. Teitelbaum's book explains all of this very, very well. Yes, he does have a lot of info on RLS, as well as other things that can set one up for CFS. He goes into great detail of what is happening in the body with disordered sleep. There is a section on Adrenal insufficiency, which is a part of all this, as well.

    He also has a list of treatments, from medical to natural, and things the patient can do or take themselves to repair the damage done to the hypothalamus. One must be aware that times of stress, whether physical or emotional, etc., can cause a flare-up of sleep disorder. So it is not something that just goes away and you never have it again. He addresses this also.

    All in all, I urge anyone with sleep problems with RLS (or not) to look into this. It may just be what you are looking for. His explanations and information are excellent.

  • Sorry you are having probs,yes I have been where you are ,I have had many different meds for rls and am now on the patch 2 mg and 100mg Tramodol nearly scared to say but alls going well why don't you give that a go. Good luck

  • Thankyou, il be takin all this information with me so the doctor can see wot might help me....im at my wits end

  • Persistent RLS like that is truly awful and I really feel for you. It doesn't sound as though the ropinerole is working for you any more and it may be that you have augmented on it in which case you will have the unenviable prospect of having to withdraw from it. In my experience, the only thing that will work while coming off a dopamine agonist is a strong opiate like oxycontin although there are those who say that taking ferrous bisglycinate on an empty stomach when symptoms come on will completely resolve the symptoms. It doesn't work for me unfortunately, although bringing up my iron levels generally has helped a lot. You could try kratom which, as you live in Northern Ireland where it it illegal, you will have to import from somewhere like Holland. I find kratom very effective in dealing with symptoms. Cannabis is not so effective for symptoms but is great for inducing sleep which can be elusive even when rls is under control. You should also get your serum ferritin checked. If it has fallen recently that could also have caused your deteriorating symptoms.

  • Is there any particular variety of Kratom best for Rls?

  • Yes; Red Vein Borneo is the one most people seem to take although I have also taken Red Thai and don't notice a huge difference.

  • Thanks.

  • Ive just tried to research it and my internet provider is blocking all the sites

  • Wow. dekratomshop.nl is where I order from.

  • Its just blocked me again lol

  • Your own technology conspiring to save you from a criminal career!

  • I only wanted to read up on it 😂

  • I was in a similar position to you and was referred to a neurologist who told me to up my Ropinerole starting with 1.5 gradually going uo to 4mg. I had some .25 so I increased by that but felt lousy so went back to 1mg but now I'm up to 1.25 again. For the first 3 weeks or so I slept well then things started to deteriorate again. I've been up since 2am today and am in a quandary as to what to do. I'm experimenting reducing the oxalates in my diet and have had a couple of exeptionally good nights and thought I'd found the answer but now my rls and plmd are much worse!

    There certainly is no one solution. We all have to find what works for us. I do try everything that is suggested on this site.

  • I really would think twice before taking the higher dose of ropinerole. It seems very likely that you are suffering augmentation. I have heard one person give a VERY strong endorsement of a low oxalic acid diet but I think even a very effective diet will struggle to improve your symptoms if you are augmented on a dopamine agonist. The diet might be very effective once you get the d/a out of your system.

  • Hi Involuntrydancer,

    I had another excellent night last night after a low oxlate diet and taking my iron at bedtime. As it has to be taken on an empty stomach and the Ropinerole after a meal and the advice is to take magnesium at night juggling meal times and bedtimes gets tricky. The night before was bad after eating a very small amount of chocolate. I had already sussed that chocolate was a trigger - it is high in oxalate according to the NHS list. Different sites give slightly different lists.

    Reducing the Ropinerole is definitely on my agenda. I have reduced it before gradually but I gave in and went up again. As both the neurologist and G P advise increase up to 4 mg I feel on my own to sort it out. It is all detective work!

  • That's fantastic, Lois, I wish you many more such nights. I too struggle to manage the meals/empty stomach, medications timetable. It seems to get very complicated at times.

  • Hi Lois, glad you slept well. May I ask what type of iron you are taking and how long have you been taking the iron at night? I find that if I eat too much at night my RLS is worse.

  • Hi Tredlight,

    The iron I take is Spatone. It is water with naturally occuring iron from Snowdonia. I don't know where you are but, in England, it is easy to find in supermarkets and Holland & Barrat. They call it gentle iron and as that is what is reccommended on this site I guess it crosses the blood brain barrier.

    I've only just started taking it at night. I was taking it in the afternoon when my stomach was empty between lunch and evening meal. As yet, I don't know if that makes a difference but thought I'd try it.

    By the way, I had another good night last night.

  • I'm thrilled, as I'm sure you are. I'm with you, night time is the best time. I'm not sure that spatone is ferrous bisglycinate and I'm not sure that it matters. The bisglycinate is just what a lot of use that have found relief with the iron. Keep posting how it's going!!!

  • I've just had my 4th good night on the trot. Something I'm doing is right.

  • Hi Lois, I just looked up the Spatone and though it is ferrous sulfate (rather than ferrous bisglycinate) it is combined with vitamin c so that should help break it down. Normally ferrous sulfate is hard for anyone over the age of 12 to break down and absorb without that vitamin c.

  • Hi Tredlight,

    You can get Spatone wih or without Vit c. I always make sure I have Vit C with it if it's not included.

    I'm gioing away this weekend for a week, then a friend is coming to stay so, after that I shall experiment to identify what exactly makes the difference.

  • Its soul destroying, u try new things in the hope it will help then when it dsnt u feel so deflated, im waiting to see a neurologist but the waiting time is awful, im for my doctors this week and im going to ask for my ferritin levels to be checked, my iron is low which can aggravate the symptoms, its as u said we just need to keep searching for that treatment that will help us, iv tried so many but my search continues

  • Sorry to be blunt, but clearly the drugs are not working and I have been there so really hope you can try upping the magnesium and iron by quite a bit, that's what I did. The pharmaceutical drugs not good, just saying.... I a m so sorry to hear his sleep deprived you are :( so I hope this helps a bit

  • Hi Jules, we conversed before I believe. You were totally fine on the magnesium as I recall so what made you add iron into the mix? May I ask what kind of iron you take?

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