For 7 years I have taken one 50mg Tramador and 0.5mg Ropinirole. Lately the rls has kept me awake unusually from around 3am for 4 hours. I feel fortunate that I have no underlying illnesses and have regular blood tests which show amonst other readings my ferritin levels hovver around 100. I am 74
The above medication I take around 7pm each evening. Sometimes I experience rls early evening before bed time and then after sleeping a couple of hours have to get up!!
This experience has been getting worse over the past 2 months although after nearly 7 years I ferl more fortunate than others on this site.
But now I really need to know what to do next! I visited my doctor but due to the Covid 19 crisis my appointment with the hospital neurologist was postponed and I received a text from my doctor confirming that J need to double the Ropinirole dose!!! I was aware from being a member of Health Unlocked that was an incorrect recommendation!.
If I could enlist recomnendations from those who know about rls from this site I can then reapproach my surgery?
Looking forward to receing any advice please
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m1946
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Doubling your dose would be the wrong move. You're right in that you managed 7 years on a combination of meds. That is as long as I would expect any medication to work for me. If it has worked for 7 years, I would call it a success.
Perhaps you need to look into reducing Ropinerole. That is not easy at all. Reduce in steps. That is the way forward. Where do you live ? If in the US, there are many experts.
BOTH tramadol and ropinirole can cause augmentation.
It's a shame that your neurologist postponed your appointment. I'm not 100% clear why they should. I have had two consultant appointments in the last month, one by phone and one online.
It also seems that your doctor, not unlike many doctors is unaware of augmentation as indicated by the advice to double the dose of ropinirole.
It is of course your choice, since 0.5mg rooinirole and even 1mg is not a large dose that you could decide to go along with this.
If you do decide to do this, it may work, but if it doesn't or if it actually makes symptoms worse then you'll need to consult your doctor.
In this case or if you decide NOT to double the dose, then you could hopefully arrange a telephone consultation with your doctor and discuss augmentation and your options.
In the meantime, 7pm seems to be quite early to be taking the ropinirole, it's not surprising that you wake very early, its effectiveness will have worn off when you still need it, i.e. when your doapmine levbels are at their lowest. Dopamine levels will be rising again about 6am.
In explanation, the rate at which medicines disappear from the blood is called the "half life", that is the time taken for half of it to disappear.
The half life of ropinirole is about 6 hours, his means, assuming that you absorb ALL of the 0.5mg you take at 7pm only 0.25 mg is left at 1am. This will further decline to 0.125mg at 7am. So at 3am, the level in your blood will be below 0.25mg.
Increasing the dose will alter this i.e. if you take 1mg at 7pm, by 1am there will be 0.5mg left. However at 3am, there will still be onky a small amoujt, less than 0.5mg left.
This is not completely right since it takes up to 2 hours for the dose to be completely absorbed. This is why, ideally, its' best to take the dose 2 hours before bedtime.
It just depends, of course, what time bedtime is!
As an example if bedtime is 10pm and you take 0.5mg ropinirole at 8pm, then the level in your blood will be nearly 0.5mg at 10pm, 0.25mg at 4am. It will be 0.5mg at 4am if you take 1mg at 8pm, which you'll note is a sufficient dose to get you to sleep.
The other "trick" you could try is taking the ropinirole and tramadol at different times.
I realise the problem may be that you take the ropinirole earlier because you get symptoms earlier.
If that's the case then it appears you're suffering augmentation. A further factor is that ropinirole like other Dopamine agonists (DAs) can itself cause insomnia - early waking.
It seems to me that in the longer term it would be best to review your medication options. I'm not 100% convinced that consulting a neurologist has any great advantage over consutling your primary care doctor. You can't guarantee that the neurologist is knowledgeable about how to manage augmentation.
If you do review your medication options, then there's several things you can negotiate.
Tramadol, if you need an opiate, is not the best choice for RLS. It does cause augmentation. There are other opiates more approrpiate for RLS. However, to get a prescription for any other may be difficult, you may need to consult a specialist for this.
Ideally, I'd suggest stopping the ropinirole. If you are suffering augmentation caused by this DA, then stopping it can reduce the augmentation.
Alongside this you could just take an opiate, but it would have to be potent enough and not tramadol. Otherwise, despite dealing with the augmentation, you will still have RLS.
You could continue on an opiate and switch to an alternative RLS medication, which may be fefective after augmentation has improved.
It's possible that if an alternative RLS medication is effective for you, you could stop the opiate.
I'm afraid this is all a matter of what you can get a prescription for and a matter of trial and error.
At least stopping the ropinirole, if nothing else, may improve your situation.
If your doctor agrees to switching to an alternative RLS medication, it's often the case that they suggest another DA i.e. either pramipexole or rotigotine. These both also cause augmentation and aren't truly alternatives.
The well accepted alternatives are gabentin or pregabalin. These are not without their own complications, but they don't cause augmentation and it's now beginning to be recognised that they should be prescribed as the first medication to be tried for RLS, not a DA.
A primary doctor can prescribe one of these and it's best to start taking one 3 - 4 weeks before reducing the DA. You may even find tha taking one of these AND the orpinirole does improve things as the gabas do help with insomnia.
Ropinirole,i f you decide to stop taking it, cannot be stopped suddenly, you have to wean off it. I realise that 0.5mg is a low dose, but even so, there can be withdrawal effects so reducing it to 0.25mg first, then stopping could be tried. If possible even reducing it to 0.375mg, then 0.25mg then 0.125mg might be better. This depends on how able you are to cut the tablets. You could try staying on each reduced dose for at least one week before reducing again.
During this reduction and after stopping,your RLS symptoms may get temporarily worse. This is the usual withdrawal effects as it takes your brain some time to get used to the lower dose.
Thisis a lot of information to take in, so I'll leave you to absorb it.
Some further informaion for you. Just in case your doctor isn't particularly knowledgeable about RLS.
As NHS doctor cannot ignore the evidence based guidelines issued by the National Institute for Health and Care Excellence (NICE). The NICE guidelines on the managment of restless legs syndrome clearly identify that
I’ve just watched the excellent Dr John Winkleman’s webcast for the USA RLS Foundation.
He says that all Dopamine Agonists are a ‘TICKING TIME BOMB’. He’s one of the world experts on RLS and he mentioned in his talk that tramadol is a short acting opioid so it can lead to RLS rebound ( symptoms occurring as your body ‘withdraws’ from the drug). I think you should definitely change the timing of both the Ropinirole and the tramadol and take them 1-2 hours before bedtime.
If that doesn’t help after a week or so you could ask for an extended release opioid ( one that works for 6-10 hours) like tramadolER or OxyContin.
If that doesn’t help, you may have to get off the Ropinirole.
In his talk, Dr Winkleman made it crystal clear that once augmentation sets in, the ONLY option is to slowly reduce and discontinue the dopamine agonist.
I take 900mgs Gabapentin at lunchtime, then again around 9pm. With this I also take either 1mg or 0.5mg Ropinirole depending how desperate I am! Some nights I don't even bother to go to bed while on other occasions I get between 2 and 5 hours sleep. I struggle to reduce my medication because I'm not doing that well on what I take at the moment but I wouldn't increase it after reading the very good advice given on this site. I am 72 and have suffered with this most of my life but it has definitely worsened over the last 10 years. I did ask my GP for Oramorph to take on occasions when I am gripped by violent leg movements which lasts for hours and I wish I was dead, but afterwards I am exhausted and depressed. He refused. I am now trying to film myself during a bad attack and plan to take it with me next time I have an appointment. I'm sorry I can't really help but there are some wonderful contributors here - I'm just so sorry for all of us who suffer this dreadful condition.
They say there is always someone worse off than yourself! I guess the term Restless Legs is not necessarily an apt description to stress the true nature of our disease
The medical fraternity must consider this affliction far more seriously than they have hitherto done.
At least this site provides a forum for discussion and ideas on how to combat the effects of rls.
I am so grateful for all those that contribute the results of their research and experiences - it provides me with something to do at 3.30am in the morning.
I wonder sometimes whether viewing an exciting drama from Netflix or BBC iplayer in the early hours helps to focus the brain (dopamine?) And dilute the effects of rls? I am watching Money Heist atm and my rls has subsided!!!
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