Restless Legs Syndrome (RLS) Discussion Board

Deb.... What a journey to get to where you are today. Still not perfect but great to get off five other meds.

I was fortunate that my Dr gave me lyrica to support my weaning and then I added the kratom myself.

To date I have only worked with my (two different) GP and methadone and even oxycodone does not come with the remit.

Fortunately I never ever got to the zombie stage. However, at one time I tried amitriptyline to help (unsuccessfully) with sleep and it left me so foggy that I took myself off it.

I can't take lyrics or amitriptyline. Both on my long list of tried, and will never take again. Glad lyrics works for you.

I have been weaning off my Ropinerole so slowly that I'm pretty much tired of the sound of my own voice.

At present I may or may not get an hour's sleep around 1am. Whether I do or not, the pattern is that I will generally fall asleep around 4am/5 or 6 and that can be for anywhere from 2 - 4 hours.
However at the beginning of this week from Sunday to Tuesday I had only 3 hours' sleep total. Then on the Tuesday night I managed 4 hours. Usually I am awake more often with insomnia than rls symptoms but recently the symptoms have been more active.

My husband would admit that my sleeplessness does not greatly physically affect him, if I'm restless I gently get out of bed and if/when I feel I might sleep I usually use a guest bedroom, so as not to disturb him. It does bother me that I spend so much time out of own bedroom. The upside is that my husband has a great sleep

Today I spoke with my husband about totally stopping altogether, no more weaning.
This week I was going to go down another .25mg and that would be at .5mg daily (from 5mg daily).
We discussed further weaning v stopping now cold turkey off the .75mg.
My husband's attitude is that 'we would never know unless we try'..... hmmm.... note the 'we' and if it was too difficult then return to the .5mg and wean. Nothing to lose.

So here we go. That's it. As of now.... cold turking off the .75mg ..... Ropinerole free.
I have put it in writing and have committed myself.

Good luck!

I guess the logic is if you dont sleep already , how much worse can it get ?

It can get worse in terms of symptoms , albeit temporarily

I'm in a similar boat as you in terms of wanting to get off a drug that is surely going to involve significant rebound.
I'm going a bit slower this try (I wish I didn't think I had to)

I keep saying I'm going to get off my tramadol, so I know how you feel , and how tired you are of your DA

We've both gone off our DAs before, so we know what to expect in terms of elevated RLS

Do you plan to use anything additional to cover symptoms ?

I should add that it's great your husband is on board .
It's very helpful (you can tell him I said that )
I cant ask that of my wife basically ever , as we have two very young girls .
Naturally , both of them are sick again already.

Icantsleep.... My medication cocktail for RLS has been ropinerole, codeine and lyrica. The lyrica was added most recently to help me wean off the ropinerole.

The only addition I have is kratom.

Polar Bear wrote:Icantsleep.... My medication cocktail for RLS has been ropinerole, codeine and lyrica. The lyrica was added most recently to help me wean off the ropinerole.

The only addition I have is kratom.

So ....

How are you managing ?

I'm sure many of us care and are here to support you .
Dont beat yourself up if things don't quite go as planned .

No worries if you are too exhausted to post

Just know I'm sending you good energy from Ottawa

Icantsleep - just to note this is the first time I have attempted to come off ropinerole, having been on it approx 15 years.

You ask how I am managing.
My regime is....
10pm normal meds plus one extra codeine making that dose 75mg. (The max should be 60mg)
12ish bedtime - 2mg kratom
4ish - 30mg codeine and 2mg kratom

Daytime meds are as usual minus ropinerole.

I have checked the half life of ropinerole and it should be 4 days when I'd expect to notice the lack of it. No big changes in symptoms so far.
Time will tell.
Thank You for your good wishes

I am now 7 days Ropinerole free and so far have not experienced any dreadful withdrawal symptoms.
Of Course, I am not drug free. I still use my usual Codeine and Lyrica regime with an added dose of Kratom at midnight and another around 4am.
I'm wondering, have I done it. Is this it?
If I was going to have a difficult time after having stopped the Ropinerole, I'd have expected it by now.

WOW!!!!!

Wonderful news PB!!!

That's pretty cool. You did it without withdrawal symptoms using a long slow taper (and codeine). Did you increase the amount of codeine you're using at all?

Well this is pretty remarkable

By day 7 you would at least think you were over the worst of it
.... and if the worst was essentially nothing, then ... wow !

I sincerely hope this continues

Beth.... At one point during the reduction I had an extra (about) 30mg Codeine added which took me up to the max daily dose. No extra Codeine added towards the end (because I was already at max) but I did add the Kratom, though only the two doses each night.

Icantsleep.... I agree that at day 7 I'd have expected any kick-back that there was going to be.
As you say it was.... essentially nothing... long may it continue

I will now wait and see
(a) if my symptoms will lessen and
(b) if I ever find sleep again.

Betty I do hope your sleep increases.