Pramipexole Panic: The bottom line is I... - Restless Legs Syn...

Restless Legs Syndrome

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Pramipexole Panic

Lineker profile image
10 Replies

The bottom line is I’m not coping. Ten days without Pramipexole and I’m starting to doubt myself: I can’t talk properly, I can’t think straight, I can’t read and I can’t keep still because my legs are twitching and screaming with pain from the moment I wake. I know massive anxiety is making this so much worse. Fortunately, I am getting some sleep.

Sorry to moan, but I’m feeling desperate. Is what I’m experiencing normal? Should I try taking Gabapentin during the day to get some relief?

Please talk to me. Thanks again.

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Lineker
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10 Replies
Madlegs1 profile image
Madlegs1

You might be coming down too quickly?

I suggest going back a step and starting again.

Lineker profile image
Lineker in reply toMadlegs1

In total I have been withdrawing for 36 days - the last 10 without any Pramipexole.

Joolsg profile image
Joolsg in reply toLineker

It seems that you are nearly through the worst of it. Dr Earley insists on a 2 week drug free withdrawal to establish base RLS levels.Gabapentin often doesn't work after years on dopamine agonists, BUT if you are sleeping, that's a massive positive.

If I were you, I'd stick it out, because you are very nearly there.

Do ask for some help from your GP with the daytime pain.

Maybe add in a small dose of opioid. NICE guidance does specifically mention this so your GP is prescribing within UK guidelines. Codeine 30mg in the daytime or oxycodone would relieve the pain.

Lineker profile image
Lineker in reply toJoolsg

Thanks Jools I needed that encouragement.

707twitcher profile image
707twitcher

Hang in there! But I'd strongly suggest trying to get some opioid help. Ideally, buprenorphine. But anything at this point to help you get through this. I found that cannabis helped me during withdrawal if you are open to that. If you can't get either, then I'd agree with MadLegs - your withdrwal was very fast and you might need to go back a step - maybe take .125mg pramipexole for a couple weeks?

Lineker profile image
Lineker in reply to707twitcher

Thanks Twitcher - your support is most welcome. Will have another conversation with my doctor.

Nikos64 profile image
Nikos64

I’ve been through pramipexole withdrawal and I know what you’re going through. I 100% agree with the previous commenters and I also urge you to ask your doctor for an opioid prescription because I don’t think gabapentin is enough. When I was tapered off pramipexole (due to augmentation and falling asleep during the day) I was given a combination of gabapentin and 2 x 50mg Tramadol pills. It took me about 6mo+ to fully adjust. For me, this combination was barely adequate to fully control my RLS but it was enough to ease the transition and eventually things settled down. I should also say that I do not recommend Tramadol, but that’s a long story.

In summary, there’s light at the end of the tunnel and there are therapies that will provide excellent relief from this nasty disorder.

Good luck and wishing you restful sleep!

Lineker profile image
Lineker in reply toNikos64

Dear Nikos, thanks for taking the time to respond. It is so good to hear from somebody who has experienced the same thing.

TheDoDahMan profile image
TheDoDahMan

Some people, like me, will need to be on a low-dose opioid regimen for the rest of our lives. Luckier ones, for only a week or two, after which gabapentin will do the trick. Keep us posted for further advice, and good luck!

loloball2 profile image
loloball2

how is it going since you posted last? I am getting ready to start the taper myself. I was wondering if you felt symptoms of depression from the taper? That’s what I am afraid of as I already suffer from depression and afraid of it getting worse. Hope things have leveled off for you!

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