Hi, I’ve previously had advise when I was taking Ropinirole. I was on this drug for 11 years ended up augmenting and acquiring a gambling habit. I was advised to come off the Ropinirole which I did, taking a long and painful time doing so. I took a couple of Codeine to help me at the end. Since then I have tried Gabapentin which really didn’t suit me and affected my eyes. Came off them after about 3 weeks, I then carried on taking my 2 Codeine at night time. Because of Covid 19 I didn’t see my doctor for some time but managed to speak to him about 10 days ago. My doctor then suggested I try Gabapentin 100mg to see how I get on with it, I took it along with my 2 30mg Codeine tablets. It seemed fine for 3 days and on the 4th night of taking them I awoke at 1.30 feeling really sick and suffering from Vertigo. I was constantly sick that night and had Vertigo for 3 days. I didn’t take any more Pregabalin and have carried on taking just the Codeine. I sent a message to my doctor and asked his advice, this is what I was told ...
‘To go back on the Pregabalin + Ropinirole combination. To start taking 25mg of Pregabalin and increase by 25mg each week. Get to the maximum dose you can manage possibly 100mg and then add in small amounts of Ropinirole each week. Otherwise I think you will need to consult a neurologist again.’
I was gobsmacked when he suggested the Ropinirole as it’s only been about 8 months since I got off them. And I am just getting to the point when the urge to gamble is starting to subside, which I’m so thrilled about, so why on earth would I want to put myself through all of that again.
Can anyone help please? X
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Scattypatty
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Hi, I am sorry to hear it is such a struggle to find a good and effective medicine for your RLS. Well done for coming off the ropinirole. Your dr's advice has some good points and some bad points. First, it indeed may be wise to retry the pregabalin and build up slowly. An increase of 25mg each week is slowly enough, I would think. This way you may get used to the pregabalin better and avoid sudden side effects like the vertigo your described. You will not know unless you try 🤞🏼. Then, 100mg may be effective for you, but the international consensus is that most often a dose between 150mg and 300mg is needed for effectiveness. Pregabalin also need to be built up and may take a few weeks to show effectiveness. Given the latter point, if you can handle it maybe try to stick to the 25mg increments, but increase the pregabalin a bit faster.
Second, a combination of types of medicines may work better than one medicine on its own (monotherapy). However, since your long and in the end bad experience with ropinirole I wouldn't start back on it (yet.). If everything else fails, maybe yes. But it seems far far too early for that.
Third, your current combination of pregabalin with codeine is another one that may work well. Hopefully, if you can tolerate the pregabalin and you find an effective dose, you can lower the codeine and maybe in the end go without. All trial and error, I am afraid.
Do you feel this is a better approach?
Getting a referral to a neurologist seems to be a gamble. Not many neurologist appear knowledgeable and up to date about RLS and its treatment, especially not about refractory RLS, which is what you have (=several failed meds).
You certainly make a lot sense so thank you for the advice. I am so nervous about taking medication now after the nightmare of Ropinirole, I just don’t want to ever see that medication again, I would rather suffer than go back on it.
I will give it a bit of a rest and perhaps try the Pregabalin again soon.
Thanks x
You wrote you tried gabapentin and it didn't suit you. You then said your doctor suggested 100mg gabapentin, but I am assuming you mis-wrote this and you meant 100mg pregabalin.
The nausea and vertigo you suffered as a result of the pregabalin are common side effects of pregabalin and there's nothing unusual in that.
What is unusual is that the starting dose of pregabalin is 50mg, NOT 100 mg. The idea is to start at a lower dose and gradually build up the dose. The reason for this is to give you time to get used to it and hence reduce the initial side effects.
Good idea to start on 25mg and build up slowly. I would have been better to do that in the first place : no comment on your doctor.
It takes a few weeks for pregabalin to become effective. During that time the side effects such as drowsiness, dizziness and gait problems may wear off. If you can tolerate it it may need at least 150mg to be effective : no comment on your doctor.
You're quite right, if you augmented oin ropinriole before and additionally suffered an Impulse Control Disorder, (ICD - gambling), I'd say it would be extremely unwise to start taking ropinirole again. You did extremely well to get off it in the first place. People who develop an ICD are more likely to suffer DAWS (Dopamine Agonist Withdrawal Syndrome).: no comment on your doctor.
Just to reassure you about a point of law. Under the law of "informed consent" a health professional cannot expect you to udertake ANY treatment without your consent. You do NOT have to consent to taking the ropinirole.
Not only do they require your consent, it has to be "informed" that means that you have to have the benfits of the treatment explained to you PLUS the risks and the alternatives. It doesn't appear as if this has been considered. Even if you did consent to taking the ropinirole, it is not informed consent.
You can withold your consent or give it and later withdraw it at any time. That is your right. I have heard of doctors threatening people that if they don't take the advised treatment then it will be recorded that they are "non-compliant" This is abusive if not actually illegal.
The consent doesn'thave to be written, it can be "implicit. That is, unless you actually say "No", then the health professional can assume you have consented. To withold consent you simply have to say "No".
If you refuse to take a particular treatment then the health professional, doctor, is still responsible for your care and has to offer alternatives.
I would suggest that you do start on a low dose of pregabalin and gradually build it up to at least 150mg, if the side effects are tolerable. It will taken 3 - 4 weeks to work effectively in the higher dose, and for side effects to diminish, so you may have to wait for that.
If you can tolerate 150mg and are still troubled by symptoms, you can increase the pregabalin further.
I suggest that whatever the outcome with the pregabalin is you do NOT take the ropinirole. To advise someone to take a medicine which is highly likely to do them harn and has done i the past is irresponsible and possibly illegal, (law of tort). : no comment on your doctor.
If the pregabalin fails your doctor should refer you to a neurologist as according to the UK national guidelines for the management of RLS you would fit the criteria for referral to a neurologist.
Heres a link to the UK prescibing guidelines for pregabalin
I hope the pregabalin does work for you. Obviously, if the side effects are too bad for you then I'm afraid it won't, but it would still be very unwise to start on ropinirole again.
I agree with Lotte and Manerva. Don’t touch the Ropinirole.
Increase the pregabalin slowly as Manerva suggests and only take at night.
I had nausea, dizziness and vision problems with pregabalin but they subsided after 2-3 months so stick with it. Also watch your food intake as it increases your appetite dramatically.
A no go for Scarrypatty. Pramipexole is in the same class of medicines as ropinirole and rotigotine, they are all dopamine agonists (DA). Thus, if she takes pramipexole she will augment again very quickly. Once one has been through augmentation and subsequent withdrawal, it is advisable never to take a DA again.
I've been on Pramipexole for 11 years and augmented once for 2 weeks and went right back on with no problems for 6 years now. I take 1.5 and take 1/2 in am and then at night. I have extreme RLS and absolutely nothing else works. Our bodies and response to meds. are varied. Just my experience.
Thanks for your reply. I had such a bad time on Ropinirole that I would never take another DA medication. It’s good to hear though that you have been able to take Pramipexole very successfully and good luck with it in the future.
Hi Scattypatty - I was put on Ropinirole several years ago for restless legs syndrome - I must say here that for many years I was an opiate addict but free from using at this time I was given Ropinirole...but as a direct consequence of taking Ropinirole after a few weeks I very quickly became addicted again to opiates...this happened on two occasions and both times it took many months to get free from my addiction again - I found out afterwards that I should NEVER have been given Ropinirole because of the mental side effects for certain people - "GAMBLING" is another side effect for a certain type of person due to the dopamine high/mood swings some people are subject to when taking Ropinirole...it sounds to me that YOU TOO are one of the people who should NOT be taking Ropinirole...but I also want to ask WHY don`t you simply stick to the couple of codeine pills if they are enough to control the legs etc ?...I myself am now on "Buprenorphine" and have been for several years after getting myself free from opiates (but Buprenorphine is also given for addiction) and no longer suffer any effects whatsoever...I`ve come to terms with the fact that I will need to take something for the RLS for the rest of my life so the "addiction" side of things doesn`t come into it any longer...as long as I don`t suffer with RLS I am fine....I hope all is resolved for you but please take heed of my mention of the KNOWN effects for some people when taking Ropinirole....good luck.
Sounds like you have had a hell of a time with Ropinirole as well, I do sympathise.
I didn’t know if it was a problem to be on Codeine long term and although they do help a bit I wanted to see if there was anything better. To be honest for me I don’t think there is. Like you I would never go back to taking a DA Medication again. The dream is to sleep through the night without waking in pain and discomfort, it is such a long time since that happened, as with most RLS sufferers I expect!
Thanks Scattypatty.....codeine is an addictive drug - it is an opiate although several steps down from morphine/heroin - these drugs were used for many years to treat RLS but less prescribed now because of the potential for abuse I guess { I can see no other reason)....if codeine works for you in stopping RLS and your doctor is happy to prescribe them then why look for another drug ? - yes, it is addictive but it is a mild opiate and you will need to take some form of medication every day for RLS anyway - so if it works for you stay with it...good luck and thanks again.
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