Trying another dopamine agonist (yeah, I know....🙁)

[11love]

I’ve posted here before. I have severe RLS. I was on requip and ambien for several years and augmented on the requip. Took me a year and a half to come off it-had terrible withdrawals. Took klonopin to help come off the last of it. Went on gabapentin 900 mg -still didn’t work with klonopin for help and even then it was not a consistent nights rest. Now the neurologist is trying me on a neupro patch. I’m hopeful-but I know the dangers of going back on a dopamine agonist. I also know that so far-nothing has worked on its own-I’ve always had to have a back up sedative or sleep aid.

Any thoughts or advice? Is there a remote chance this might actually be successful or just another pipe dram with a bad ending? All that’s left really is opioids.

[Graceman]

Methadone absolutely works. Miracle for me. Been on 10mg for years.

[11love in reply to Graceman]

Any side effects with the methadone? Sounds like it’s been good for you. I’d like to get away from the klonopin (clonazepam) and gabapentin because of side effects. Low libido, risk of early onset Alzheimer’s with klonopin, etc. dizziness and bouts of vertigo.

[Graceman in reply to 11love]

No side-effects, other than a bit of nausea in AM when I first started. It’s very known thing that methadone is kind of a wonder med for severe RLS. Dr Early at Johns Hopkins Hospital is a leading expert. Watch this... youtu.be/iCNI_UCj7SI(Not working as expected?)

[Hidden]

If both dopamine agonists and alpha 2 delta lignads have failed then you have refractory RLS The best option for this may be a low dose potent opioid such as oxycodone, methadone or buprenorphine.

You could try a combination of neupro and gabapentin, It may work, but as you know there is still the risk of augmentation.

[11love in reply to Hidden]

Thanks for the reply-I managed to keep the Neupro patch on (1mg) for approximately 14 hours. I ended up taking it off as I was so violently ill. Vomiting/diarrhea non-stop -lost 6 pounds-couldn’t even keep small sips of water down. I’m not able to take most anti-nausea drugs due to the RLS-so I’m not sure if this patch is going to be a viable option for me. The half life for this drug is about 5-7 hours and that’s about how long I was still ill after removing the patch.Perhaps it’s a sign(?) haha. I know there’s the risk of augmentation. Plus still having to take a side drug to help it along. It’s also very expensive here in the US. Even with coupons from the drug company -it’s still the equivalent of a monthly car payment to use these patches. And there’s no generic option available at the moment.

So...back to gabapentin or give the opioids a try. The neurologist is open to prescribing them for me.

Thanks for the replies -human connection is vital to survival with a chronic illness and a pandemic on top of that!

I’ll keep you posted.❤️

[Hidden in reply to 11love]

Sorry about the neupro. I hope you're feeling better now.

[Joolsg]

I agree with Manerva. I think low dose opioids would be the best option now. Fingers crossed 🤞