Restless Legs Syndrome (RLS) Discussion Board

I have been away so I am just now starting to catch up on this thread.

1. Coming off of Neupro and pramipexole are pretty much the same. In both cases, you need to be under the guidance of a doctor who is familiar with the treatment of augmentation. If you are at the higher dosage ranges for these drugs, it might be best to back down to a lower dose before stopping. If you search the board, you will find references to DAWS (dopamine agonist withdrawal syndrome). DAWS can cause permanent problems if yo stop too quickly. Fortunately, it is not that common and from what I have been reading, appears to occur more frequently for those who are experiencing compulsion side effects from their DA (but not always).
2. You MUST gradually come off of gabapentin just like you had to titrate your dosage up when you started. Going cold turkey with any of the anti-seizure meds like gabapentin is a really bad idea.
3. Not all RLS experts agree with how to switch from DAs to opiates. I am facing that change in the near future and know how I want to do it and only hope that I can convince my doctor to do it my way.
4. I just watched the RLS Foundation's webinar on the use of Opiates to treat RLS. It was extremely useful for me, especially the part where Dr. Early compares all of the morphine-like opiates, including oxycontin and oxycodone. You have to be a Foundation member to see it now, but if opiates are of interest for you treatment, by all means become a member so that you can see it was well as the other webinars.

Steve, thanks. That's useful information. I would like to see the webinar, so I signed up as Foundation member. It was something of an arduous process since I live in Thailand and the system doesn't seem to allow for non-US-standard formats for fields like phone numbers. I see that the webinar was on 11 February. I don't see any option to view a recording of the session. Did you watch it live? Do you know if they will repeat the webinar in the near future?

David, the Webinar page of the website lists the various webinars that are available. You have two options for each, Webinar Recording or Powerpoint Slides. If you click on the Recording Option, it will ask you to register, just like they do to participate in the live webinar. Once that is done, you have access to a recording of the webinar that includes both audio and a "video" of the slides as they were used during the webinar.

Hope that helps.

Steve, thanks. I have now viewed the recorded webinar, and have printed the slides to give to my doctors. I have also printed the WED Foundation Revised Consensus Statement on the Management of RLS. I am now off the Neupro patch. The tapering down took about ten days. I was on 4mg at the start. I went to 3mg for 2-3 days and then to 2mg for a week and then to zero. I took 10 mg of morphine twice a day to help with the withdrawal. While I was at 2mg, I only got one or two hours sleep a night, if that. The morphine masked the worse of the symptoms, but I still couldn't sleep because of movement in the legs. On the day I went to zero, Tuesday, it was even worse. I slept not at all. On Wednesday, I managed a 20-minute nap and later a 45-minute nap, which allowed me to function the rest of the day. It is now just after midnight Wednesday (Thursday morning) here (I am in Thailand, 12 hours ahead of New York time), and so far this night seems a little easier. I can sleep for about 5-10 minutes of each hour, which I have been doing since 7 pm. Towards morning, I hope to sleep even more. I have no idea if the tapering was too fast, too slow or just right. Opinions seem to differ. I also don't know how much longer I will have trouble sleeping despite still being on morphine. I expected that withdrawal symptoms would continue for a while after getting off the patch, but I have no sense of what "a while" means. My next challenge is to convince my doctors to prescribe me either monotherapy with an opiate or combination therapy consisting of an anti-convulsant and an opiate. I believe these are my only options. I don't want to include a DA in the regimen. I have my work cut out for me because my neuro can't bring herself to utter the word "opiate" and my "pain" doctor knows little of RLS. She was fine with prescribing me morphine for the withdrawal but I don't know how she will feel about prescribing an opiate long-term. I have been trying to educate her about the use of opiates in RLS treatment. Neither doctor will discuss kratom because it is illegal here. I won't be able to get methadone or buprenorphrine. Oxycodone is my best hope (if the hospital has some in stock). I see my doctors Friday (separately). I wish they would work as a team.

And I complain! I hope it works out well for you.

Hi again. I just slept 11 hours. I now know there is a God. The difference? I am now on 40mg extended release oxycontin once a day instead of 10 mg extended release morphine twice a day –- wrong drug (I experienced bad dizzy spells about once every 48 hours; and probably for other reasons) and wrong dose. I think it was unrealistic to expect that after a couple of decades of being on dopamine agonists, all I needed was a 10-day tapering period a few days off the DAs. I am sure I am still in withdrawal. I am guessing that the withdrawal will last for another week or two at least. What happens after that I don't know yet. The whole situation was not managed very well. Contributing factors included: (1) long-distance treatment (I am three hours drive away from the hospital where RLS doctor and my pain doctor, both neuros, work); (2) the RLS doctor is not really very good; (3) the two doctors did not talk to each other about my treatment; (4) doctor-patient communications were not very good (for various reasons); (5) the hospital was not well stocked in terms of opiates, which limited my choices (when I started the taper, they didn't have oxycontin or oxycodone); and (6) lack of understanding by the neuros here about the role of opiates in treating RLS. Thank goodness the pain doctor was open to new ideas! It's just been one day since I started the oxycontin, so I'll stop here and report back later if there is something to report.

Very good news. 11 hours must have felt like bliss!

Ditto! Could I borrow a few hours? Please!

Wishing all who visit here some peace this night

How wonderful - 11 hours
Last night I got 5 hours all at once (which is unheard of for me) and thought I'd found Paradise.

Five hours at once for me is paradise. More typical is 2 or 3, up for a half hour, then 3 or 4, up again, then another 2 or 3. I usually end up with at least 6 which is okay.

I have been away from Mirapex now for 5 years and want to offer perspectives from a distance. As you can read from the many comments below, this drug affects people very differently. It was very bad medication for me, even at low dose. It didn't perceptively help my restless legs. What I didn't like is that the drug taker doesn't realize the side effects. For me the side effects were impairment of judgment, non-gambling compulsiveness, and heightened sexuality. As to judgment, something about which I am normally praised, I describe the effect as juvenile - not caring about the results of actions. As to compulsiveness, my focus was a house remodel project, for which I was totally absorbed and spent way too much. As to sexuality, I just had a heightened sense of sex and got way too close to a fellow worker. That almost ruined my 35 year marriage, but my wife, a psychotherapist, knew something wasn't right and checked on Mirapex. It takes a long time to get Mirapex fully out of your body, for me at least 6 months. Mirapex could have been a disaster for me if I kept taking it and if I increased the dosage. My wife also found a potential connection between Mirapex and a family history of manic-depression, which my father had. My advice: if you take this medication, be very aware of your individual results and be very open with your caretaker about what is happening; the side effects can be very subtle.

Kazul, I have the same side effects from Ropinirole except it helps significantly with my RLS (for now). I haven't got into trouble yet but had to clear the pantry to keep from blowing up like a tick from compulsive snacking. Horny all the time.

First I tried Mirapex but it instantly gave me a screaming headache. From the data I see, people last longer on Mirapex before augmenting in general. Did you continue any pharmaceuticals after quitting Mirapex?

Golly - my husband would be so sad to hear of those with an increased libido - pramipexole just about wipes out mine and then makes it hard to orgasm, so what's left is non-functional.

And, for so many, it's a wonder drug. We really DO have to be careful and be honest about how it affects us and be ready to drop it at any time.

There are a number of studies of DAWS (dopamine agonist withdrawal syndrome) with Parkinson's that link DAWS to compulsions. It appears that the individuals who had to get off of a DA due to compulsions were far more likely to encounter DAWS than those who needed to get off of their DA for other reasons. So, if you are encountering compulsions as a result of your DA use, be very careful how you end up getting off of your DA.

Stainless wrote:Did you continue any pharmaceuticals after quitting Mirapex?

As well, I felt an overwhelming depression/anxiety for a long period of time. I read somewhere that anxiolitics like benzodiazepines (diazepam, clonazepam, alprazolam etc.) are poor help for DAWS, wich was a matter of concern. I took daily 1mg Xanax alprazolam during my depression/anxiety, and it helped.