I live in the UK, I am 63 years old and retired. I suffer from RLS for some 15 years or so and it is getting worse. I have jumped the gun and have written a post on this site yesterday and had a wonderful reply from Manerva. Gosh how knowledgeable. I have probably been quite naïve regarding this matter and just did as my GP told me to do. I did have an idea thought, that not enough is known about RLS and there certainly is no cure. However, I am astonished to read how the medical profession is dealing with this, a bit hap hazard.
Anyway, I will digest all the information provided by Manerva and others suffering from RLS,
Written by
riaward
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Hello Golf, I would like to point something out that struck me in you reply to riaward. You write you mow rely on Madopar, tramadol and pregabalin after coming off of ropinirole. However, Madopar is levodopa, a precursor to dopamine. Like the dopamine agonists, incl ropinirole, they cause augmentation. Actually, the risk of augmentarion on levodopa is even higher than that of a dopamine agonist. Is the Madopar a temporary prescription and are you tapering it down? Or is it prescribed for incidental use? To quell breakthrough symptoms? Although that doesn't appear the case from tour story. Maybe with incidental use the risk of augmentation is supposed to be lower. But, from the countless stories on this forum, we have learned that augmentation often comes back with a vengeance after switching to another dopaminergic medicine. The augmentation most likely makes much harder for the pregabalin and tramadol to control your symptoms. Which seems to be your situation. Thus, my question is, why didn't you completely come of ALL dopaminergic drugs?
Ropinirole, a dopamine agonist, as you say is ill advised for RLS because of the risk of augmentation and ICD,
Riaward is already having problems with pramipexole which is even more renowned for these complication.
However, Madopar which contains Levodopa is the worst possible dopaminergic medication for causing augmentation.
As Lotte says, Madopar should never be used on a regular basis, only occasional i.e. 2 - 3 times a month.
If anybody has a problem with a dopaminergic medicine, then it's best to wean off them all and certainly not switch from one that's bad enough, to one that's even worse.
Interesting...my neurologist never even mentioned these drugs...He just put me on clonazepam valium norco lamictal...I ask him about the Dopamine type drugs...He looked at me and said Forget about it...
Your neurologist is probably right to say forget the dopamine agonists. They were the first drugs specifically prescribed for RLS. Years later it's become apparent what the complications of long term use are. Although it doesn't seem to have reached all doctors yet, they are no longer recommended.
I'm not sure why you have been prescribed both clonazepam and valium, they are both benzodiazepines so work more or less the same way. Both have a high risk of addiction and valium quite quickly loses its efficacy.
The medcines now recommended for the first line treatment of RLS are the alpha 2 delta ligands, either pregabalin or gabapentin.
These were originally developed as anticonvulsants, but are also licensed for neuropathy and nerve pain. They can be also quite effective for RLS.
I see that lamictal is an anticonvulsant, so I can see the logic in using it for RLS. However its action will be different from the ligands so may not be as effective.
The use of the ligands for RLS is very common and there have been studies demonstrating their effectiveness. You will see them mentioned a lot in this forum.
I've never heard of lamictal being used for RLS and never heard of any studies saying it's effective.
The norco contains an opioid and these are known to help with RLS,
Once again the hydrocodone in norco is not commonly used opioid n
for RLS.
If your happy with the effectiveness with all these four things you're taking that's great. However, that's 4 things and you can't really know which ones are actually working.
I only take gabapentin, nothing else. It works for me., but people are all slightly different. You might want to consider eliminating the benzodiazepines, but if you do, be careful of withdrawal effects.
I have very similar story to you and I live in Washington(Tyne and Wear)not dc,you mentioned a Dr Anderson at the RVI.Can I ask how I would go about contacting her or is it through gp's only?My gp's are also very vague when it comes to treatment of RLS.I was put on ropinirole straight away without being made aware of side effects or possibilty of augementation.Thanks.
Hi, welcome to the forum, you are so right about Manerva,very knowledgeable and very helpful, I've also had great advice from others on here. I too have always did as my gp.told me, I've been a sufferer for a long time and have been taking pramipexole,my doctor just doesn't seem interested and each time I try to discuss it he makes me feel so frustrated and I come off the phone feeling as bad as ever, this forum has been a lifeline regarding advice and knowing others are listening.
I was on Mirapex for many years. Ultimately, it was a really bad experience. My suggestion would be to stay away from dopamine agonists if you can. Good luck and I hope you are able to find a solution!
I also am new to this forum, I have had RLS for 12 years and hate it. Does anyone get low back pain at the same time as RLS, this just makes the RLS even worse. I find that having a good wet cry seems to help. I am on ropinirole and getting worse.
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I am new here. Is there such a thing as a RLS tracking app?
Hi all. I am new and pleased to find this web site, and hear about others with RLS, and their experience treating it.
Hi everyone,I'm a new poster
Hi I am Janine Iamhis 
