Hello I have had RLS for a long time,... - Restless Legs Syn...

Restless Legs Syndrome

21,441 members15,118 posts

Hello I have had RLS for a long time, pretty severe, have been on ropinirole worked good ,Gabepentin, not very good, Neupro, good leaves bu

Elijah5 profile image
6 Replies

Carbidopa Levodopa

Hello I have had RLS for a long time, pretty severe, have been on ropinirole worked good ,Gabepentin, not very good,

Written by
Elijah5 profile image
Elijah5
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Elijah5 profile image
Elijah5

So Ropinirole worked good,gabepentin not very effective, Neupro worked good except burn marks. My Dr prescribed Carbedopa LEVODOPA How effective is this MED my RLS Is pretty severe

in reply to Elijah5

A shame you had a reaction to Neupro, as Gabapentin didn't work, it might have been your best option.

Levodopa should work for RLS, but it's recommended to be used as necessary, not every day. Hence it's only really useful for intermittent RLS.

This is because of augmentation. The chances of getting augmentation with L Dopa is very high, that's why it's best not to use it regularly.

Dopamine agonists, e.g. Rotigotine, Ropinirole or Pramipexole are less likely to cause augmentation, but they will.

And that's the problem with all dopaminergic agents.

Augmentation doesn't happen with Gabapentin or Pregabalin.

I wonder why Gabapentin didn't work. What dose did you take and for how long? It doesn't work immediately. Was Pregabalin considered instead, it is more potent and more easily absorbed.

Failing this, another possibility is Pramipexole. However, not the normal immediate release version, there is an extended release version.

Pramipexole has the highest risk for augmentation of all the Dopamine Agonists used for RLS, but there is some evidence that using the extended release version helps prevent augmentation.

Hopefully you're aware of all the non medical steps you can take to relieve RLS. If not, it might be worthwhile investigating those.

In answer to your question, will L Dopa work, yes it should do. However in relation to augmentation, it's the worst thing you could take.

Abookwriter2 profile image
Abookwriter2 in reply to

Manerva, as usual, you are on top of all things rls. I haven't had rls as long as many (7 months) and it's abated quite a bit too but when I first got nightly bad attacks I went straight to my doctor thinking the .25 ropinole I'd been taking very rarely wasn't working. I went straight to gabapentin, 100 mg, the lowest dose.

I should've and eventually did take 1 low-dose ropinole with the gabapentin and I'd have no rls.

So my point is, don't discount one med before using with another or increasing a low dose more before saying it doesn't work.

I learned alot from this forum and you as well as a few other regulars who help everyone out!

Elijah5 profile image
Elijah5 in reply to

Hello Thanks for responding to my Post I think you've responded to a previous post, I was taking 900 Mg of Gabapentin before bed it lasted 6 hours I need a longer sleep time, it also left me feeling absent minded I'm in a profession, that I can't be making mistakes, because of Meds Thanks

in reply to Elijah5

It's just a thought, but you seem to be saying that Gabapentin didn't work because you didn't sleep long enough and it made you absent minded.

You didn't say that it didn't control your RLS symptoms.

Also, some people only take it for a couple of weeks, then say it isn't working and stop taking it. In fact it does take possibly longer than that to work.

I appreciate you may be between the devil and the deep blue sea, but this seems to be often the case with RLS.

I have read an. evidence based paper recently saying that if you take more than 600mg gabapentin it's best to split it. Take 1/3 late afternoon and 2/3 evening. For you, that would have been 300mg and 600mg.

The devil is that the half life of gabapentin is 5 - 7 hours, so it might not give 6 hours sleep.

(I must say when I was taking a dopamine agonist, the possibility of 6 hours sleep would been heavenly.)

This might however reduce the fogginess early next day.

Obviously, increasing the dose would.increase the length of cover to more than six hours.

The deep blue sea is that the fogginess will increase.

Frying pan and fire is the next idiom.

If getting enough sleep is your main issue, as it has always been for me Levodopa is a worse option. Although it's initially brilliant for controlling RLS symptoms, so you can GET to sleep, like all dopaminergic agents it can cause insomnia.

With pramipexole, I had severe insomnia, no RLS symptoms, just not sleeping, maybe 3 hours on a "good" night.

Lesser of two evils is the next idiom.

There is no ideal solution for RLS, you have to do what's best on balance for the optimum quality of life you can manage.

Taking Levodopa regularly, is possibly the worst option and will almost inevitably lead to augmentation.

An analogy, if only 6 hours cover is a wave in the blue sea, augmentation will be a tsunami.

I appreciate that mental alertness is necessary in many occupations and it takes more effort to be attentive as we get older anyway. I've always been absent minded. There are strategies for dealing with it.

I took early retirement! What's the point of having a bigger pension if you're too ill to enjoy it?

As I say, just a thought.

I just read the UK national recommendation for using L Dopa for RLS is that it should only be used if symptoms occur no more than 3 times a week.

Sorry if that puts you between the devil and the deep blue sea.

You may also like...

has anyone used ropinirole and had it stop working? I have to take several 1mg a day and a 4mg morning and night

I have had to keep upping the dose over the last two years, now I can't sleep for more than an hour.

Has anyone else had RLS all their lives, or a very long time? What coping mechanisms have you learnt?

I've had RLS my entire life and was probably born with the condition as I certainly had it as a baby

Hello,I have been taking ropinerole since the middle of August and am please to say it works

the terrible nausea is becoming less but I have developed a dry cough which is worse during the day

PRINT THIS - if you GP does not understand Buprenorphine

I have posted this on the RLS _stories page on Instagram too It’s a simple but good...

Reintroducing tramadol

Good morning from Greece. Well I hope it is a good one. Has anyone tried reintroducing tramadol...