Went to neurologist yesterday to have epilepsy ruled out. (It was.)
Mentioned I had RLS. Told him I was taking .5 milligrams of Valium every third day or so to keep the monster at bay. Mentioned that hydrocodone really helps me (But prescriptions are getting harder to get in the US. Mention the word and you can almost hear the police outside the door.) Mentioned I've been experimenting with marijuana but don't like the way it makes me feel the next day.
He did not like either drug for me and suggested ropinirole instead. I said I was concerned about side effects and augmentation. I'm 54 and could conceivably be looking at 20 -30 years of med use once I start down that track.
Would love to read your advice! Been trying to do this without meds for nearly 20 years.
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Marlayna67
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Hi Marlayna67, I am delighted for you at having epilepsy ruled out.
There are a wide variety of drugs available so if you do start down this route you will be able to switch drugs down the line and like many of us here cycle through them. I've been on drugs for the last 20 years or so (am in late 40's now) and apart from that bit when one stops work and the other begins I don't have things too bad, (I made dietary and lifestyle changes to help too), all things considered.
Regarding the Oxycodone - mention you've been researching treatment and Targinact is prescribed then you are asking for a drug by trade name as opposed to asking directly for it - its f**king silly to have to play games like that but that is the society we have
If you do go the DA route PLEASE take good note of the side-effects and maybe if you are lucky enough to have someone else in your life you could let them know the side-effects and what to watch out for.
Thank you -- just looked up Targinact. Effing annoying to play this game, I agree. I've been reading that middle aged women are the up and coming drug addicts, so I picked a bad time to need drugs.
Personally speaking I think that drugs used to treat a physical problem, and physical only wont leave you addicted, dependant, but not addicted. It is when you are feeling low and need of 'a little something' or things are getting on top of you so you fire a few extra into you to take the edge off that the spectre of addiction appears.
I have been on and off opioids for the last 20 years after stumbling upon the fact that opiates treat RLS and have yet to start eating them by the handful and robbing old ladies of their bingo money for heroin! I use them to treat the RLS until they become ineffective then stop them and change to a completely different drug and apart from the physical withdrawal symptoms there are no more issues with the opiates.
**SORRY** I didn't realise you were living in Trumpton. There is the same drug as Targinact available - just a different name:
I can see that as soon as the word "hydrocodone" leaves my mouth, the doors start slamming. Like you, I've yet to rob little old ladies. Just want some damn sleep.
I have been taking ropinerole extended release 2 mg. for a few years now. I take it 2 to 3 hours before I go to bed, stretch my calves before bed, and now I only have trouble with RLS at night if there's something else that keeps me awake for over an hour. I sometimes have trouble in the evening, probably when the ropinerole is starting to wear off. Also occasional trouble if my legs are in a cramped position for a long time, such as traveling, or theater. I stretch my calves before those occasions, and ask for an extra, short-term, prescription for long plane flights. I asked my GP whether ropinerole was a heavy-duty drug that would affect my health in other ways or cause serious side-effects, and she said no. So I'd recommend that you try it.
Your Doctor does not understand ropinirole. I don't mean to sound rude but I feel so strongly about it. If you do the research you will find the FDA approved it without enough studies being completed' There have been thousands of lawsuits in the last 20 years since it has been introduced. Some people do well on it but if you're one who doesn't the consequences are dire. Please do the research the information is out there.
I am trying to get off this drug and it is hell. I will never take another dopamine agonist . It changes the chemical balance in your brain. My Doctor says my brain will return to about 80 % normal. I don't like to be so negative and I don't want to scare people but I feel a responsibility to say something.
whoa really? i'm glad you spoke up and wish you the best. that's definitely something to mention!
Hi Marlayna, i am not sure you have Targinact in the USA it might come under a different name over there. It would have been better to have started on the Neupro Patch which is a dopamine med like Ropinerole as it has a lower % of augmentation, altho it still can augment. As you are aware of augmentation then its best to keep the dose as low as possible to try to keep augmentation away as long as possible, altho again you can still augment on a low dose. but would be a bit easier to wean off a low dose than a very high dose which happens to many. Of course there are many post on here of non medical info on what members have tried for relief. But for most of us its the med route unfortunately. Its also trial and error on what suits you and works, sometime it can mean trying a few meds to find the one for you.
I am very pleased for you to have epilepsy ruled out.
I have not tried Ropinarol, Yet! I do know that inthe US that you can get Tranxene, I was prescribed this drug whilst living in Ireland and France it really did the trick, it is also known as Clorasapam, I cannot get it in UK, which annoys me intensely. I have suffered for 42yrs and it was the first and only thing that knocked it sideways.
I am no ‘expert,’ but I can only share my experience. I’ve had every test iron, vitamin D, vitamin B… All normal. I seem to remember my mom lying in bed saying “my legs are driving me crazy. “I can only assume I inherited it from her. I am on .25 of Pramipexole, although my neurologist says I should be on .5. When I said I’ve read too much about augmentation that I’m leery he shrugged his shoulders. I take half a tablet at 5 PM and the other half at 7:30PM. Before I get in bed I take 200 mg of gabapentin (neurologist says they should be taking 300!). None of this was really working and reading some of the comments I started taking powdered magnesium at night before bed. I get it in the health food store and it’s called Natures Calm! I don’t know if it’s coincidence, or what, but I have been sleeping like a log! Try it. In the meantime I have to find me a new neurologist. He is so dismissive and pompous. Good luck!
Five years ago I tried Gabapentin and after a quick 10 pound weight gain plus one dilated pupil made me not even last the month. I did sleep though! Calm used to work for me, and then didn't. What a merry go round this treatment is!I hope you can find a more understanding neurologist. The last thing you need is someone who doesn't listen or empathize.
0.25mg Pramipexole is enough.. If it's not working, do NOT increase it.
So arrogant to be dismissive of augmentation!
There are plenty of warnings about this.
However, the starting dose for Gabapentin is 300mg. That's "starting,"you then have to build it up in steps of 100mg, every 2 - 3 days. I take 600mg, you may need more. 900mg say. It doesn't cause augmentation.
Also, if you've only just started Gaapentin, it takes a few weeks to take effect.
At the moment, it sounds like the Pramipexole isn't working, which is what happens and you're NOT taking enough Gabapentin.
Hi Marlayna. I'm in the UK and identified with what you wrote as am 51 and managed without drugs for my RLS for 20 years (though didn't manage very well) and started trying medication last year. For what its worth, I was prescribed Pregablin but had awful side effects (gut and zombie state) even on half of the lowest dose (I cut the capsule and poured some out) so even though it calmed my legs at night I couldn't stay on it. I now have been on Ropinirole 0.25mg (yes - half of the lowest dose 0.5mg)and it seems a good enough solution for me for now. It has augmented the symptoms in the evening sometimes so I keep busy then doing cooking prep or something and take it 9 - 10pm. I am aware if the long term risks of a DA but this is the best.have slept for over 20 years so to me its worth it. My mother also has RLS and took 2 - 3mg Ropinirole and had terrible augmentation so is in the process of coming off them. I gather some of the US based RLS experts are against these higher doses for RLS (3 - 6mg that here in UK your GP says we can try) for this reason. I also find a high dose CBD oil (30mg+) can help but if I take regularly it becomes ineffective. Good luck.
Thank you for sharing. My mom also has RLS, and it's looking like two of my four children are starting to have early symptoms. They do say it's genetic. Yay. I tried CBD and all kinds of cannabis. I think there is some perfect combo we each need to find in order to have 100% peace.
It's great when a dopamine agonist is working for you. If symptoms get worse however, it really isn't a good idea to increase the dose. If a doctor says so, I'd say it's irresponsible.
However, if symptoms get a little worse in the evening, this is not augmentation. For me, as per the "text book" description augmentation was full blown twitching of arms, legs, shoulders any time of day and within seconds of staying still. Good nights - 3 hours sleep.
Here in the UK according to the National Institute for Health and Care Excellence (NICE) as identified in the British National Formulary, the official maximum dose for Ropinirole is 4mg.
A doctor prescribing 6mg would be in danger of being accused of malpractice. It isn't OK because your GP says it's OK. Your GP is wrong to say it.
In the NICE guidelines for the management of RLS it explicitly states that any doctor prescribing a dopamine agonist should make the patient aware of the risk of augmentation.
It is evident that the higher dose of a dopamine agonist, the higher the risk of augmentation.
I'm not trying to discourage you from continuing taking Ropinirole, I am simply trying make you aware of some things your doctor failed to do.
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