Slowing down on Ropinirole withdrawal

[RosieRow]

Sorry not to have posted my report on withdrawing from Ropinirole at the beginning of the week but

a) things weren’t that great and

b) I was so busy that I didn’t have a spare minute before needing to be away for meetings for three days.

Things haven’t been great as Tramadol, on the three occasions I’ve taken it, doesn’t seem to help the sleep side of things and doesn’t take effect on RLS for at least two hours or more, so I’m having to experiment with what time I take it (with food or else I feel really queasy). I may ask my GP if there is an alternative to Tramadol. Anyone got any ideas?

I have had a couple of really dire nights (OK – they could have been worse, so maybe just not at all good rather than really dire) but I’ve been so tired as a result. Inevitably the RLS then gets worse in the afternoons and is bad all evening preventing me from doing anything. It didn’t help that when I was away the fire alarm went off in the hotel at 5am and we all had to go and stand outside in the rain for an hour before being given the all clear to return to our rooms!

I have subsequently found that taking some codeine as well as Tramadol has helped – but that seems a bit excessive so I’ve only done it once.

I’m also coming up to a concert in eight days’ time when I need to sing a solo and being tired isn’t helpful to my voice. The upshot is that I’ve decided not to reduce from the 0.75mg Ropinirole as quickly as I had planned so that maybe things don;t get worse between now and then. I shall go down to 0.5mg on 8th, the night of the concert. I will then see if I might be able to speed up the final decreases to five days between rather than a week and so only finish taking it a few days later than I had planned.

However, I am due to visit neurology on 6th December so hope that I find out something useful from them to help me through the last stages and deciding what to do next.

all the best,

RosieRow

[Hidden]

Hello!

Thanks for the update, but sorry to hear that things are still not great. I don't blame you one bit for slowing down on the withdrawal.

I see my neurologist the day before you see yours; I hope we both get the results we want!

Good luck with your solo! You'll do great! One of the most important things I've learned since my RLS started is that the body has some kind of magical ability to pull through even when desperately tired. I've said this before and I'll say it again: if I had a penny for every time I managed to do what I thought impossible due to being exhausted, I'd be rich.

Do you sing opera?

[RosieRow in reply to Hidden]

Dear Jess

Good to hear from you and thanks, as always, for your encouragement. It will be interesting to see what each of us gets from our neurology appointments.

As for opera - no, nothing that grand. I sing with a good local community choir and this Christmas we're doing Vivaldi's Gloria when I'm due to sing one of the alto solos, plus a variety of Christmas music and poems. First concert tomorrow and second (bigger one) next Saturday night. I also sing with an 'a capella' ladies' group - maximum of 10 of us - which is good fun. Just hoping my voice will be OK as I feel on the verge of my not infrequent laryngitis, hence the tiredness not helping!

You're right - I manage to cope with all sorts of things despite feeling tired - needs must!

RosieRow

[Pam34]

Hi Rosie

I used to take the Tramadol 1-2 hours before I went to bed, it certainly didn’t help me sleep (even when I was through the withdrawal) but I decided I’d put up with that as long as my legs were quiet. It also didn’t really keep my legs calm while I was withdrawing but it took the edge of it and made something unbearable slightly more bearable. You can’t expect complete relief until the dopamine drug is out of your system. I’m sure that’s not what you want to hear! And why not take the codeine with the Tramadol if it helps? You’re not doing it for ever, just til you get through this.

It is amazing what the body copes with, I held down a full time job on 1-2 hours of sleep a night. Caught up at weekends during the day. I’m pleased to say it’s much better now on the Pregabalin - not perfect, but I don’t think we should expect that.

Enjoy your singing. Our local carols (famous in Sheffield and north Derbyshire) have just started in the local pubs. Nothing like a pint and a good sing song!

RosieRow, you will get through it. Don’t necessarily expect too much from the neurologist, go prepared. Educate yourself as much as possible and work with him. Don’t be railroaded. But I don’t see you as somebody who would capitulate too easily!

Pamx

[rls_optimist]

Hi, Rosie, you may find that you'll need a stronger opioid to help get through your withdrawal. Both Tramadol and especially codeine are relatively weak. The stronger ones that many of us here have used effectively (both for withdrawal and in some cases for ongoing daily therapy) are oxycodone, OxyContin, Targinact (I.e., oxycodone + naloxone to help reduce constipation), and methadone. All these must be approached with caution, but they are very effective tools for making withdrawal much more tolerable. It might be worth asking your neurologist about going this route, if you're comfortable with it.

Meanwhile, I think you're wise to press the pause button on the withdrawal until after your concert(s). Good luck with those, and may your voice soar like the dove of peace!

[Shaft1952]

Hi RosieRow, I am currently on 25mgs pregablin 12 midday 75mgs 6pm & 10pm, pramipexole 0.18mg 10pm and 30mgs 10pm, I am also prescribed 15mgs codeine for any breakt through episodes, I have been on many meds, the one thing I can't take is tramadol, codeine 30mgs at night with the other meds works, also having 15mgs codiene help when they kick off during the day hope this is of help for you good luck Irene1952

[RosieRow]

Thanks to all of you for your constructive comments. At least I have some ideas to take with me to neurology on Thursday.

Had the first concert this afternoon (no solo this time - that comes on Saturday) but it went well and my voice is holding up pretty well - long may it last!

RosieRow