Restless Legs Syndrome (RLS) Discussion Board

I was on Ropinirole for 15 years or more. My RLS continued to worsen. Three months ago after finding this site I stopped taking Ropinirole. For the first three days I was unable to sit or lay down for more than a couple minutes at time. I paced the floor all night for three nights. Not a wink of sleep during this time. Like the site says, I went through hell for four or five days. The RLS lessened somewhat after that. Within a few days I was able to meet with a new physician. He put me on 50mg of Lyrica. It was like taking a sugar pill. Had no effect what so ever. He up the dose to 150 then to 200mg. This has completely changed my life. Lyrica has reduced my RLS completely during the day and 98% during the night. And when I do notice it, it is so mild that I am able to ignore it.
Before seeing this physician and starting on Lyrica I tried to find a physician who would prescribe an opioid. No luck there. I did purchase some opioids in Mexico which was a big help just prior to my appointment with the new physician.

It is wonderful to hear that you benefitted from the information here on our Discussion Board.

It sounds like you stopped your Ropinerole cold turkey. Well done.
How to you take your Lyrica, is it one dose or two doses.

Thank you so much for coming back and telling us of your success, it gives hope to other sufferers.

YAY!

I'm so glad that Lyrica has worked for you. Have you had any side effects from the Lyrica? I also just started one week ago after getting off pamiprexole and Neupro and am titrating my dose. I am currently on 200 mg/day, 100mg taken 12 hours apart. I may have to go up to 300 mg as I still feel it in my legs at night. However, I feel like I'm always in a fog and am so tired. Question for all board members: How long does it take to adapt to the side effects, or is this something I will continue to experience as long as I am on it?

I am taking Lyrica as a support to coming off Ropinerole which is a drug in the same category as Pramipexole. I started at 100mg x 2 daily and then up to 150 x 2 daily and can honestly say that I've had no side effects that would put me off it. Having said that I'm trying not to increase the Lyrica as there are two possible personal side effects that I'm aware of.

One is the tendency to gain weight and I'm keeping a close eye on that as I've gain a little recently (hence my lap of the park this morning and just under 5000 steps). The other is that I can very readily nod off during the day if sitting quietly such as reading. Not sure if this is Lyrica as I am also somewhat sleep deprived. At present I am happy to take the current Lyrica dosage as it appears to be helping the burning (neuropathy) that presents on my lower legs and the top of my feet, as well as supporting my Ropinerole reduction.

I think that some side effects work themselves out in a week or two but others may linger.
I understand that the fog can clear after a couple of weeks but have had no experience of that myself.
It really does become a balance judgement between side effects and benefits.

I just started Lyrica- what is therapeutic dose? Is is better to take it when symptoms occur or keep level stable taking it throughout the day?

I started lyrica at 100mg twice daily, then 150 twice daily. I now take 200mg twice daily, along with other meds, i.e. a med cocktail. I don't know if it would work taking lyrica as a one off, it's not meant to be taken like this.
Also, bear in mind that taking any meds for RLS don't work nearly as well once the symptoms have started. You must keep ahead of the symptoms for efficient results

I started taking 250 mg Lyrica once a day about six months ago. I'm also taking 2 mg of clonazepam but got off gabapentin. I can live with this state of things but would prefer a little more help. My sensations start as soon as I lay down. I attribute better sleep to Lyrica but the RLS is going the whole time I'm in bed. Daytime is pretty good unless I nap, then I pay in my arms and legs. At worst a hot bath settles that down.

I see Neurologist next month. He did not want me to quit Gabapentin but I'm glad I did. Less drugs, less side effects and less pain after I was off. Unless he has any bright ideas, which I doubt, I will try staying with this for a while.

I was on 150 mg twice a day. While that dosage of Lyrica controlled my RLS and I was able to sleep, I developed a profound depression. I was sad all the time, didn't want to get out of bed, didn't care about doing anything - taking a shower, seeing my adorable grandchildren - nothing! When I finally made the connection between my mood and Lyrica, my doctor decreased my dose immediately. My mood improved, but was still depressed even as we decreased the dose further and further. Plus I gained 5 pounds in the 2 months I was on Lyrica!! I am now on 150 mg Tramadol/day, which doesn't quite control my symptoms so I supplement by vaping some CBD/THC and also take a Sleep capsule of CBN. Not perfect, but pretty good.

brossman wrote:I was on 150 mg twice a day. While that dosage of Lyrica controlled my RLS and I was able to sleep, I developed a profound depression. I was sad all the time, didn't want to get out of bed, didn't care about doing anything - taking a shower, seeing my adorable grandchildren - nothing! When I finally made the connection between my mood and Lyrica, my doctor decreased my dose immediately. My mood improved, but was still depressed even as we decreased the dose further and further. Plus I gained 5 pounds in the 2 months I was on Lyrica!! I am now on 150 mg Tramadol/day, which doesn't quite control my symptoms so I supplement by vaping some CBD/THC and also take a Sleep capsule of CBN. Not perfect, but pretty good.

So glad you figured it out! And, that you have a solution that is workable.