15 nights into withdrawal: Hello! Yes... - Restless Legs Syn...

Restless Legs Syndrome

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15 nights into withdrawal

RosieRow
RosieRow

Hello!

Yes, 15 nights into my withdrawal from Ropinirole and I'm down from 1.5mg to 0.75mg. Indeed, things were going so well that it had crossed my mind to start shortening the time between the reductions. But then, by the weekend the symptoms of RLS started coming on earlier in the evenings and being more noticeable during the night, waking me - mainly not awful ones, but enough to hinder my sleep and none of my usual tactics seemed to work.

Sunday night was really rotten and I felt awful during yesterday. But still reduced to 0.75mg last night.

However, as today was going to be a gentle day I decided to try a new tack:

a) not take any codeine as I’d taken the maximum of 60mg through Sunday night and it didn’t seem to be having any effect, and

b) try 50mg of Tramadol

I was slightly wary of the last as I have strange reactions – or even no reaction – to all sorts of medication. But felt this would be a good night to at least see what happened as I would be able to cope with any consequences today. Strangely it took longer to get to sleep than I’d anticipated – about 90 minutes from taking it. But I then slept like a log and only had to get up once for a call of nature! I felt much more rested this morning.

I’m wondering about trying to alternate Tramadol and Codeine each night. Or whether to stick with 50mg of Tramadol. However, I still have the last three reductions to cope with over 21 nights and then final ‘washing out’ process when I guess I'm going to need Tramadol all the more. So I'm disappointed to have had to use it this early on and would like to limit my use of it to nights when I really need it and try to time taking the codeine on the nights I'm not using Tramadol to make it more effective.

Any comments and advice on this possible plan would be welcome!

But, with all the encouragement you're giving me, I'm determined to see it through even though there will be some days when your experiences make me think I will might well find it hard!

Many thanks

RosieRow

14 Replies

Dear Rosie, thanks for your account, I find it really encouraging. You have done very well and wisely so far.

Re the tramadol and/or codeine in your withdrawing process. Now that the tramadol has given you a good night’s sleep, the symptoms maybe less tonight or you may be better able to cope with them. Thus, maybe tonight the codeine (30 or 60mg) will suffice again to suppress the RLS symptoms to an acceptable level. Give it a try? And keep up the good work!

RosieRow
RosieRow in reply to LotteM

Thanks, Lotte. That's very helpful and encouraging of my idea! I will give just the codeine a go tonight and hope it does have that beneficial effect. I've been keeping a daily record of medication, times taken and a note of how well I've slept for a couple of months, so I can at least look back and see what seems to work and what doesn't!

RosieRow

Well done, Rosie. You are now well underway and your instincts have seen you right so far. At this stage, it is almost futile to worry too much about the final furlong when you eliminate altogether. What will be will be and you will get through it in the end. Keep yourself as well rested as you can for now and experiment with the drugs a bit while things are still not at their absolute worst to see what works best.

The slower you go, the easier it will be.

Great at getting this far so well.

Well done on getting this far. Don’t beat yourself up too much about it.

You have the determination to get there and you will! I seem to remember I took Tramadol for the last 2 weeks as that was when I found out about them from this forum. Prior to that I struggled, if I’d known about how they helped I don’t think I would have hesitated. Do whatever you can to make the last stretch bearable 😔

Thanks so much ID, Madlegs and Pam. I think I must be feeling quite tired as when I read your three responses one after the other I almost cried - with gratitude for your kindness and warm support. It is so lovely to know you're all there for me - and for the many others who need your wisdom and support. You're all so good and I love seeing the way you patiently respond to newbies and continue to support others.

And your comment, Madlegs, has made me give myself 'permission' to take it even slower IF I feel I need to - but neither do I want to prolong the agony!! So I can allow myself to be flexible and make the decreases in dose when I'm ready to and not to feel I've failed if I don't meet my original timetable expectations of myself.

THANK YOU ALL VERY MUCH!

RosieRow

Was just wondering why does every one want to come off Ropinirol?

Joolsg
Joolsg in reply to Highlighters

Because they are suffering Augmentation. Once that happens,the only option is to go through withdrawal.

Well done Rosie. Do whatever you need to do to get as much rest as you can during withdrawal. After the last dose of Ropinirole I took 50mg tramadol every 4 hours for about a week on the advice of Dr Buchfuhrer (RLS expert). I also used cannabis for the last 2 weeks to get an hour’s sleep. Illegal here in UK but I was desperate. It did help me sleep.

Everyone responds differently so listen to your instincts and take whatever you need to during withdrawal to get through it as best you can.

Jools

Another good night's sleep - just 0.75mg Ropinirole, 45mg on codeine and, after seeing other posts on here, two glucosamine tablets (normally take one in the morning).

Whatever did it I'm so grateful. RLS was setting in as I tried to settle to sleep but then ... I obviously was asleep. I had also worn compression socks during the evening and put a tighter sock on overnight.

Wonderful!!!

RosieRow

Hi Rosie,

I discovered this off-license use for Tramadol about 4 years ago and have used it for RLS ever since - just one 50mg capsule at around 7.00p.m. Just stops it dead for me.

It might be all you need.

I don't think it's a good idea to alternate if you can avoid it.

Tramadol is my lifeline and I take 100mg (with Gabapentin). It also prevents me from getting off to sleep but I’d go through insomnia any time rather than RLS!

Aren't all the Opiates enough to just stop Ripinirole? The same receptors are at play (In your brain). It isn't chisiled in stone but there is a theory that the signal to move comes from the brain. It almost has to be brain related because if it wasn't brain related why do all the extremities feel to signal at once. The question is just where in the brain does it start. IF brain surgeons knew the ans to excessive involuntary movement, they couldn't wait to destroy that section as they do in other aliments of the same nature As far as I know there is not brain mapping to discover even by accident that region.

Thanks for your comment, Windwalker and aplogies if I have misunderstood what you are trying to say.

I have no idea about the cause of RLS except what I've read on here and the associated links. I have to say that not all my extremities feel the signal at once - it nearly always starts in the left leg; after three hours may transfer (silently as someone wrote not long ago) to the other leg; and into my arm - or even created this irresistible urge to move across my whole body even though it doesn't produce jerking movements as it does in my legs.

Codeine and Tramadol are in the same group of drugs - or so I'm told by my GP. Perhaps it is the strength of them which differs or somehow each targets different areas, but codeine on its own doesn't always stop RLS. It may limit it for a while but on a bad night (like last Sunday for me) it can seem to have had no effect whatsoever. We all respond very differently to different medications - one of the problems with treating RLS.

Also, I have no desire to become addicted to either Codeine or Tramadol (and two GPs I know say that it is addictive even if by taking a minimal dose we manage not to become addicted to it ourselves and can come off it with no problem - hence my desire not to take any more than I really need to and only when I need to take it.

Many thanks, though, for adding to the conversation.

RosieRow

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