Finally off Ropinerol but horrible RLS now...

[CrusoeCortez]

I've now been off Ropinerol for 2 nights (after gradually cutting down for 6 weeks), but they've been absolutely horrible. I've been taking gabapentin and uped the dose again last night to 1100mg but to no avail. Anyone have any idea how long before the RLS diminishes to a more reasonable level?

Also, I've noticed recently that I'm taking more risks when driving at the moment. Is lack of impulse control a feature of extreme RLS or of extreme doses of DAs, or is it more complicated than this?

Also, has anyone tried coming off gabapentin after increasing their ferritin? What are the side effects?

[SueJohnson]

Lack of impulse control is definitely a side effect of ropinirole. It will take several weeks and maybe more for the symptoms to settle. If you decide to come off gabapentin, do so very slowly and you will have no withdrawal effects. Also the gabapentin will not fully work until the symptoms from coming off ropinirole settle. Hang in there. If you can, get a low dose opioid to help in the meantime, or kratom, or CBD.

[rlsagain in reply to SueJohnson]

Hi Sue, you suggest coming off gabapentin really slowly - how slowly please? I’m currently taking 600 mg at around 9 pm then 300mg at around 11 pm and as you may know from my previous posts, I hate the side effects and what seems to be augmentation so want to stop taking it. I’m looking into cannabis as suggested by Joolsg and I’ve an appointment with the gp surgery in September, but yesterday made a phone request for 100mg gabapentin tablets so I can start weaning off before then (I can’t cut the 300mg capsules). Hopefully, they’ll oblige so I don’t have to wait until my appointment to explain and waste several weeks…

[SueJohnson in reply to rlsagain]

I would suggest reducing by 100 mg every 2 weeks, but it really is individual and you may need to go more slowly. The withdrawal symptoms are insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations. If you have any of these, you will know you need to back up to the previous dose and go more slowly.

[rlsagain in reply to SueJohnson]

Thank you for this, Sue. The withdrawal symptoms sound just like the side effects I’m having anyway, so at least I know what to expect!

[Joolsg]

It will be at least 3 weeks before it settles. The first 4 or 5 days will be very tough. You will get severe RLS and little to no sleep but it will start to improve by day 11 or 12. You should NOT drive for at least 2 weeks as you will be sleep deprived.The gabapentin will start to work once the withdrawal from Ropinirole settles.

[Frustrated-RLS]

Agreeing with the others—hang on!! It will take some time and be awful for a little while. I also came off ropinirole and had a terrible time. I actually waited a while (6 weeks or so if memory serves) to start gabapentin (I was just nervous to take another drug after the DA experience) but now 8 months later gabapentin is controlling most of my RLS most of the time and I am sleeping. Life is much better. Hold on!!

[SueJohnson in reply to Frustrated-RLS]

If it is controlling only most of the symptoms and only most of the time, try increasing it by 100 mg every 2 days until it completely controls your symptoms.

[Munroist]

Not sure if gabapentin has similar side effects to pregabalin as they are very similar drugs but pregabalin can definitely cause disinhibition and some dodgy decision making while driving. That was my experience anyway.

[PramAddict]

I weaned off of pramipexole back in 2019 it took me 3 months of the most horrible pain I've ever dealt with I tried other medicines nothing worked I ended up background pramipexole..

[SueJohnson in reply to PramAddict]

Did you try gabapentin?

[CrusoeCortez in reply to SueJohnson]

Yeah, I'm on 1200mg, spread out to aid absorption. But I'm still getting virtually no sleep. Im hoping that once the withdrawal from Ropinerol wears off, it'll start to work.