Hi all : After months of getting 2-... - Restless Legs Syn...

Restless Legs Syndrome

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Hi all

Carpdiem profile image
9 Replies

After months of getting 2- 3 hours sleep a night recently saw a specialist who,s now changed my meds from ropinirole n rotigotine patches (as didnt seem to be working anymore or body got used to it)

Well after seeing the specialist he,s put me Carbamazepine/ tegretol as any body been prescribed this drug for RLS before ?

But I also saw a specialist privately who prescribed pramipexole totally different from the other drug totally confused right now.

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Carpdiem profile image
Carpdiem
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9 Replies
Joolsg profile image
Joolsg

I'm confused as well. You seem to have seen 3 specialists who have prescribed 3 different drugs.

So, are you now taking rotigitone patches, pramipexole or tegretol?

You say the Ropinirole stopped working. Read the pinned post on augmentation to make sure you aren't suffering from it because, if you are, switching to another DA will only lead to augmentation again.

Tegretol is an anti convulsant.

Anti convulsants like pregabalin and gabapentin are increasingly used as first line treatments for RLS.

Carpdiem profile image
Carpdiem in reply toJoolsg

Hi jools

I'm currently on the patches & ropinirole but slowly knocking them down while taking the tegretol, after which time I've come down off the patches n pills then itll just be tegretol I'm on.

But as I said I'm confused as the other specialist prescribed me pramipexole and come off the patches & ropinirole.

I dont know what's best as far as I know tegretol isn't a drug for RLS though I may be wrong on that point, as my condition is really bad and had it since I was a child and been in my arms and torso for couple of years now also, for last year or so now i've been twitching uncontrollably during day n night so embarrassing in public

Joolsg profile image
Joolsg in reply toCarpdiem

I t sounds to me like you are suffering augmentation. I f you're on the patch AND ropinirole, that will be too much Dopamine agonist medication in your system.

Cut down VERY slowly as withdrawal can be horrendous. You may find you need an opioid to get you through it.

I would NOT take pramipexole as that is yet another DA and will just add to your misery. If you are twitching uncontrollably that is classic Augmentation.

Start increasing the Tegretol slowly as you reduce the Patch and Ropinirole slowly.

Withdrawal will be at its worst 10-14 days after the last dose of Patch/ropinirole.

Once through withdrawal Tegretol should start to alleviate your symptoms.

Spend a few hours reading all the posts on this site on Augmentation and you will see you are not alone.

Carpdiem profile image
Carpdiem in reply toJoolsg

Thankyou for your reply n explanation

You've made more sense.

craigm1114 profile image
craigm1114

Stay away from Mirapex (pramipexole).

in reply tocraigm1114

I agree with you. What was your experience. I had severe body aches.

Carpdiem profile image
Carpdiem in reply tocraigm1114

Can you go in to a bit detail about why to stay away from pramipexole??

craigm1114 profile image
craigm1114 in reply toCarpdiem

I had great results when I first startedMirapex. The VA made me change from ropinerole but before I learned to spell pramipexole and the legs did their polka cc every night it quit working as well. And they wouldn’t increase the dose. Then I got a new neurologist who wanted to add the the rigitone patch. That’s when I pulled the plug and went to a doctor - non VA. I pay for the ropinerole myself. But I have so much heart trouble that RLS is but spittle that leaks out of my mouth. Just pray you never hear the words for “VT”.

I have suffered since a near fatal illness left me with RLS & Post Polio Syndrome I also have Arthritis top & base of my spine & throw in Fibromyalgia & Osteopenia & I’ve tried every drug & Morphine based patches they made me very ill & all other meds don’t work I wish I could give you some positive feedback but I do wish you the best of luck .

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