RLS - Alternate medicine Query

[Paula1007]

Hi All,

So happy to find other sufferers. I am at my wits end with the side effects of Ropinerole (current) & Pramipexole (previous). I wake up famished in the middle of the night and literally don't stop eating until around 4am, hence don't get a good nights sleep. I have picked up 20kg which is now effecting my health. Please, please can you let me know if there is an alternative medicine that doesn't have these side effects.

Thank you so much all

[cicek]

Feel so sorry for you Paula. I suffered like this for years on the standard Roprinorole. First thing that came to my mind when symptoms began was what can I eat!!!! Once I changed to the slow release Roprinorole the urges became much less. Good luck.

[Ramrod]

Paula, I have found that moving is a supplement for eating! Walking, riding a bike, etc. is really a great way to overcome over eating, which is going to add to the problem. Take with you water, a protein drink, etc, to curb your food desire! 👆🙏 a lot!

[Dougg]

Hi Paula.

I have had great success with kratom, and have not experienced any appetite side effects. You can probably search kratom on this site and find a number of helpful threads. It’s a natural approach and allowed me an easy exit off pramipexole and Oxycodone.

Good luck!

— Doug

[involuntarydancer]

Discontinuing a dopamine agonist such as ropinerole or pramipexole is very hard but almost everyone who does is pleased when they finally get through the misery. Mostly it results in some improvement in rls symptoms also. It is best done with the help of an opioid such as OxyContin or tramadol or even Kratom.

In your case, I would have thought it might be a good idea to get off the d/a and try to find an alternative treatment regime. The down side is that you have fewer options to treat your rls.

Have you had your serum ferritin checked? Raising iron levels can help a lot with symptoms. Current recommendation of rls experts is to get serum ferritin over 100.

Good luck. I hope you find a better way forward. Weight gain is demoralizing and unhealthy.

[Adge]

Hi Paula. I know exactly what you mean with the eating. I've had that problem for the last year ever since I augmented on pramipexole and swapped to tramadol/gabapentin, and now oxycontin/pregablin. I'm usually out of bed about 10 to 15 times a night pacing the kitchen floor, and the urge to eat (particular rubbish like biscuits and sweets) can be overwhelming. I've just started a low fodmap diet this week, so having to cut out these overnight treats has been challenging. I save my evening low fodmap snacks to have overnight, but they are not enough. The best thing I have found to avoid snacking is to actually get dressed and go out for a walk, rather than walking the kitchen. The food isn't then in your face while pacing at home, and I have found that sometimes the fresh air and brisker walk have helped me get better relief from the symptons and I can manage some sleep afterwards.

One advantage of the low fodmap is that I have lost 4 pounds already in the 4 days I have been on it, so it might make up for any extra snacking overnight.

Someone else posted the other day that they chew gum instead, which sounds like a sensible idea but I haven't tried it yet.

Good luck, let us know how you get on.

Adge