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Re: Attempting to get off Ropinirole - again

Posted: Wed Nov 20, 2019 12:22 pm
by Polar Bear
Thanks Debs. You too.

Two weeks off ropinerole and no big changes with regard to rls symptoms. Nothing awful and just maybe, a wee bit easier. I'm taking my current medications religiously and on time. All is not to bad at all. Except for sleep.

I wrote to Dr B. He said that upon stopping ropinerole not everyone finds their symptoms improve greatly and suggests that part of this may be natural progression of the condition. He suggesting upping my Lyrica to help sleep but I'm reluctant to do that having read on various forums about the life changing horrors of Lyrica both on it and trying to get off it. Dr B says he has never had a difficulty with patients coming off Lyrica.

Regarding lack sleep, I rang my GP, ended up speaking with a Locum who agreed to give me Zopiclone 7.5mg for 7 days. I guess a Locum doesn't want to be too pro active. It's been many years since I had a sleeping pill.

Two nights ago I took a zopiclone going to bed at 11pm. And waited, and waited, my legs were calm, I was getting stiff lying in bed reading so long, I got up at around 1am. And then the RLS started. I walked, make a drink, had some toast etc etc felt sore and weary from walking, sit down, get up, took some codeine....... and at 5 am my legs eased off so off I went to bed.
Wow... slept until 11am, 6 consecutive hours, just wow again.

Last night I got two spells of 3.5 hours which is pretty good.

I didn't expect a lot from the zopiclone but it looks like there was indeed some benefit.

Only 7 days zopiclone provided so I will try to speak with one of the Practice Partners about continuing with this.

Re: Attempting to get off Ropinirole - again

Posted: Wed Nov 20, 2019 2:10 pm
by QyX
Hey Betty,

good job getting off the ropinirole!

In your current situation, I would probably go with Dr B's recommendation and increase the Lyrica as long as you haven't had any issues with Lyrica in the past. Personally, my reaction to Lyrica was always horrible, causing anxiety, depression, insomnia and additional RLS symptoms. But I never had any issues stopping it and after only 2-3 days of stopping it, I already felt "normal" again.

The only population who I know had problems stopping Lyrica are those people who abused the drug for recreational purposes in very high doses of several thousand mgs. If Lyrica is bad for you, you would have already noticed. When I got Lyrica, I knew after only 2 days that this drug is not good for me.

When you tolerate Lyrica well, it is probably your best option in your current situation. The only alternatives I can think off right now are other antiepileptics like Carbamazepine, Oxcarbazepine or Gabapentin and they have a somewhat similar side effect profile.

Zopiclone could be a good solution for a couple weeks. Maybe the insomnia is only temporary and will get better in the next few weeks. Just keep in mind that once you stop Zopiclone, you most likely will have some rebound insomnia in the first few days.

The thing with Zopiclone is: it basically works just as a Benzodiazepine (it binds at the same receptor complex as Benzodiazepines do, Zopiclone is just a bit more selective and therefore for example causing less muscle relaxation than Diazepam would) and therefore will cause physical dependence if taken too long. Here in Germany and most other countries doctors are very wary to provide those drugs for longer than 2 weeks. Most say not longer than a week.

RLS related insomnia is one of the few conditions where doctors might be willing to prescribe drugs like Zopiclone for a longer period. Personally, if I had to choose between Lyrica and Benzodiazepines / Z-Drugs, I would always choose Lyrica since stopping Lyrica is so much easier than short-acting sleeping pills like Zopiclone.

That it took so much time for the Zopiclone to have any relevant effect and make you sleep is a bit worrisome. It shows that your insomnia is significant. Maybe you get lucky and your insomnia will settle down in a couple months. For me, managing my insomnia is still the most difficult and exhausting part of my RLS drama.

Good luck for the next weeks. I am sure you will find a solution.

Re: Attempting to get off Ropinirole - again

Posted: Wed Nov 20, 2019 4:44 pm
by Polar Bear
Thank you Qyx. Thank you for explaining how the zopiclone works.
I came across a Forum folks with real horror stories and it is this that alarmed me. (gaining 80 lbs, hair falling out, teeth falling out, can't get out of bed, loss of memory. The posters appear to have been prescribed for legitimate reasons back pain/anxiety/nerve pain)

Dr B also suggested increasing my Lyrica for sleep even though 400mg daily is (I think) quite a high dose.
I will discuss it with my GP and see what she thinks. IIRC she offered a few months ago to increase my Lyrica although it wasn't about sleep at that time.
I will note that you personally would prefer Lyrica (if it worked for you) to Zopiclone.

Re: Attempting to get off Ropinirole - again

Posted: Thu Nov 21, 2019 5:16 am
by QyX
You can find horror stories about virtually (almost) every prescription drug. From the potential side effects you are describing, weight gain is one of the most common and is associated with many antiepileptics. However: if you haven't experienced relevant weight gain or any other of those side effects mentioned, it is rather unlikely they will occur in the future.

Personally the risk of physical dependence to Benzodiazepines / "Z-Drugs" would scare me much more. There are so many stories of people who have been addicted to those drugs for decades without being able to stop them.

In Germany, Lyrica is approved for general anxiety disorder (GAD) in doses up to 300 mg and for epilepsy in doses up to 600 mg. So 400 mg can still be considered a moderate dose.

If I had to make a prediction: when you tolerate Lyrica at your current dose, you will most likely also tolerate it at 400 mg without any relevant change in the side effects you are experiencing. However, there is one thing to consider, which is also an issue that is going to happen with Zopiclone.

So it is quite possible that a dose increase of Lyrica up to 400 mg will allow you to take less Codeine / Kratom and improve your current. But regarding your insomnia, it is possible that you will experience tolerance and lose the effect. I have a friend who used Lyrica for GAD and insomnia and he always had to stop Lyrica after a few weeks and restart it. Otherwise it was not working anymore as a sleep aid.

But tolerance and especially physical dependence is something that will happen for sure with Zopiclone. The major problem that comes with long-term use of Zopiclone is that it might still somewhat work at night and give you a few hours of sleep but during the day you will experience withdrawal symptoms like anxiety and restlessness, which will make you want to increase your dose at night. Unfortunately this is almost an guaranteed outcome when those drugs are taken too long. Back when those Z-Drugs were new, they were marketed as being less addictive than Benzodiazepines but this didn't turned out to be true at all and patients got hooked on those just as they got on Benzodiazepines.

At least with Lyrica, when you react bad to higher doses, you will have a relatively easy time to stop it while with Zopiclone, depending on how long you took it, you might be forced to switch to a long acting Benzodiazepine like Diazepam and then slowly reduce the dose over several weeks / months. In the end this is not that big of problem but many doctors are reluctant to prescribe Diazepam for something like this and force patients to do the withdrawal with Zopiclone alone. So before you commit to taking Zopiclone for a longer time, I would speak with your Dr. about how to handle the withdrawal afterwards.

I hope this information helps you to make an informed decision about what to do.

Re: Attempting to get off Ropinirole - again

Posted: Thu Nov 21, 2019 6:24 pm
by Polar Bear
Just to note, I already take 400mg lyrica daily, i.e. 200 x 2 daily.
Thanks again for your detailed information on zopiclone.

Re: Attempting to get off Ropinirole - again

Posted: Thu Nov 21, 2019 11:22 pm
by QyX
Polar Bear wrote:Just to note, I already take 400mg lyrica daily, i.e. 200 x 2 daily.
Thanks again for your detailed information on zopiclone.



Ahh ... so then your only option would be to go to 600 mg ... and I have to say, given that you are already on 400 mg Lyrica, I think it is unfortunately rather unlikely, that it will help you sleep more. It might help with RLS symptoms and might allow you to take a little bit less Codeine but some major improvement most likely wouldn't happen.

Be careful with the Zopiclone. This Wikipedia article has some very good information about the drug: https://en.wikipedia.org/wiki/Zopiclone

Re: Attempting to get off Ropinirole - again

Posted: Fri Nov 22, 2019 12:10 am
by Polar Bear
:thumbup:

Re: Attempting to get off Ropinirole - again

Posted: Mon Nov 25, 2019 10:32 pm
by oceanwalker
Hi all I am having a difficult time stopping the ropinirole but still at it
Had many blood tests and was called to come see my doc regarding my low iron I requested an iron infusion as before...but to no avail Apparently there have been issues with iron infusions I was told they are dangerous??
Anyone else had any issues with iron infusions? Just curious
[I did advise my doc of my plan to stop the ropinirole and again she advised to increase the tablets to 8/day I then mentioned that this is not a good idea But this all fell on quiet ears]
thanks Marie ( I forgot the exact amount )

Re: Attempting to get off Ropinirole - again

Posted: Wed Nov 27, 2019 6:34 pm
by QyX
Wow, this sounds like your doctor is horribly ill informed.

You can try educating your doctor but from what you are saying, it doesn't seem like she is willing to listen.

Is there a way to see a doctor who better understands how RLS works?

I am currently trying to get an iron infusion, too. If done right, the risk of adverse effects is minimal. She probably has no idea, how the treatment even works and why it is effective for RLS.

Basically, it sounds like she has no idea what the hell she is doing. So ... when educating doesn't work, I guess you have to find someone else?

When I was looking for doctors here in Berlin after I moved here, many doctors did not want to prescribe opioids, even though there is no alternative treatment option. So I kept looking and unfortunately ran into many "specialists", who had no idea how RLS should be treated.

Find someone who takes you serious.

And maybe make the augmentation issue crystal clear. You can claim to have taken 8 tablets/day and the situation only got worse. I wouldn't do something to myself when I know full that it is going to harm me. But when the doctor expects me to do this because he thinks it is the right thing to do, then he is forcing me to lie to make progress.

I mean, what did she say? She must offer you something. What was her rational for increasing the dosage even further when you already augment? Doesn't she believe in augmentation?

Re: Attempting to get off Ropinirole - again

Posted: Thu Nov 28, 2019 12:11 am
by ViewsAskew
oceanwalker wrote:Hi all I am having a difficult time stopping the ropinirole but still at it
Had many blood tests and was called to come see my doc regarding my low iron I requested an iron infusion as before...but to no avail Apparently there have been issues with iron infusions I was told they are dangerous??
Anyone else had any issues with iron infusions? Just curious
[I did advise my doc of my plan to stop the ropinirole and again she advised to increase the tablets to 8/day I then mentioned that this is not a good idea But this all fell on quiet ears]
thanks Marie ( I forgot the exact amount )


They are NOT dangerous these days. They used to be.

What can you do to switch doctors? You have been going through this for much too long, Marie. I feel so badly for you.

Re: Attempting to get off Ropinirole - again

Posted: Thu Nov 28, 2019 6:11 pm
by debbluebird
oceanwalker wrote:Hi all I am having a difficult time stopping the ropinirole but still at it
Had many blood tests and was called to come see my doc regarding my low iron I requested an iron infusion as before...but to no avail Apparently there have been issues with iron infusions I was told they are dangerous??
Anyone else had any issues with iron infusions? Just curious
[I did advise my doc of my plan to stop the ropinirole and again she advised to increase the tablets to 8/day I then mentioned that this is not a good idea But this all fell on quiet ears]
thanks Marie ( I forgot the exact amount )


It might be that you have augmented with the Ropinirole. Increasing will not help. If so, you need an opioid to take for the withdrawal, stop the Ropinirole. Possibly a new Doctor. If deaf ears now, they probably won't listen. You could try to take information for them to read. Good luck.

Re: Attempting to get off Ropinirole - again

Posted: Wed Dec 04, 2019 8:34 pm
by oceanwalker
Hi there Debbiebluebird, Ann QyX and all ... Unfortunately...I am unable to switch docs :(
I am trying but to no avail
So am doing the best ...it's just not good enough... so I dunno

What can I say ?

Thanks !

Sincerely, Oceanwalker (Marie)

Re: Attempting to get off Ropinirole - again

Posted: Thu Dec 05, 2019 7:46 pm
by QyX
What you can do is print out all the available high quality evidence that supports the treatment of severe RLS with opioids. While the amount of high quality studies for RLS and opioids are limited, there are at least a few studies who should even convince the most stubborn doctor that opioids are effective for RLS.

Then you go research the treatment guidelines for RLS and print out the relevant passages concerning opioids.

Take this all to your doctor and have another conservation with her.

Make her understand that increasing your Ropinirole dose only made things worse and worse and worse and that this is no option for you.

If she does not want to prescribe opioids, make her refer you to some specialist who knows how to prescribe opioids.

You need to communicate your desperation. Ask her what you are supposed to do when treatment with DAs and alpha 2 delta ligands (Gabapentin, Lyrica) is not effective for you but you can't access opioids. She is the one responsible for giving you options.

You can try to make the point that you would go to a specialist hospital with a station for movement disorders. This is something doctors do in Germany when they are reluctant to take responsibility for a certain type of treatment. They then let the doctors in the hospital initiate the treatment first before they continue it later.

Additionally: since you live in Canada, high quality Cannabis is easily accessible for you.

And you can go buy Kratom. Kratom can probably replace conventional opioid therapy in doses who are equal to 400 to 800 mg of Codeine.

Cannabis can give an additional boost to the opioid effects of Kratom which should allow you to survive a while and get rid of Ropinirole until you can obtain a regular opioid prescription.

Please don't give up. Opioids and medical Marijuana can both dramatically improve the quality of live. Opioids are a vital class of drugs for RLS.

Your experience makes me really sad and mad.

If you continue to post, I will try to help you with all my knowledge as best as I can. Unfortunately I am no expert in the Canadian health care system but maybe you can find a GP who is willing to consider opioid therapy.

You have to understand one thing in the end: the scientific arguments are on your side. Basically all you need is a doctor who cares for those arguments and is not afraid of opioids.

And maybe you can see a doctor who is specialised in pain and make your argument for RLS treatment with opioids via the pain route.

Re: Attempting to get off Ropinirole - again

Posted: Thu Dec 05, 2019 10:56 pm
by ViewsAskew
Marie - I think you are such a nice sweet person that they may be taking advantage of you. Do you have someone who can some with you? I have gone with my best friend as an advocate, and for my mother. Sometimes someone else who will be a bit more forceful can do what we cannot.

Re: Attempting to get off Ropinirole - again

Posted: Fri Dec 06, 2019 12:55 am
by QyX
ViewsAskew wrote:Marie - I think you are such a nice sweet person that they may be taking advantage of you. Do you have someone who can some with you? I have gone with my best friend as an advocate, and for my mother. Sometimes someone else who will be a bit more forceful can do what we cannot.


Oh, this is such a good idea. If this is not working, then nothing will work.

In Germany, we have many doctors who are not willing to prescribe opioids or medical Marijuana. However, since we have so many doctors and access to health care is cheap and easy, you will at least eventually always find somebody who is willing to treat you with the proper medication, as long as you are persistent enough.

What you need to make clear is that she is the one who has to come up with solutions, not you. When a certain group of medication, in your case opioids, are necessary for your treatment, this is not your fault. When she is the only doctor you can access, then it is her job to prescribe those substances.