Restless Legs Syndrome (RLS) Discussion Board

My experience is exactly as yours. I did a taper, and I did it fast. No difference for me. BUT, you definitely have some benefits, so that is really good!

Made it through night 10. Nights 1-5, I averaged about 2 hours of sleep during the night, and nights 6-10, I averaged 3.5 hours. Last night (night 10), I got 4.75 hours, but really nothing significant until 4 a.m. During previous reductions in my Mirapex dose, I would see significant improvements in nights 11+. Here's hoping that continues.

I should note that, even though I haven't been able to sleep much during the night, I do believe the Lyrica has helped reduce the severity of my symptoms. Most nights, my RLS hasn't been too bad, although just bad enough to prevent sleep. At least I haven't been bouncing off the walls at night.

I reduced the Lyrica dose from 450 mg to 300 mg last night. I was planning on staying at 450 mg for a couple more nights, but cut back due to strange behavior. I felt like I wasn't in total control of what I was doing during the night. For example, I like to snack during the night; usually I would just grab a few almonds and maybe some raisins. One night, I was piling raisins into 3 separate piles on a plate. My wife came out, and I was kind of in a trance, and she asked me why I was doing that. I had no idea why I was doing it. I never used a plate for my snacks, I would just grab a handful and that was it. And why 3 piles? Weird. One other time, I caught myself starting to fill the bathtub in our kids' bathroom. There were a couple of other strange things like that, so I decided to cut back.

I should also note that I was very impressed with Dr. Silber at Mayo Clinic. He was very thorough, and gave me a complete neurological examination. I met with him one-on-one for over an hour. When I would see my doctor in town, the appointments usually lasted about 10-15 minutes. I went in to the Mayo appointment expecting I would walk away with an opioid script, probably oxycodone to start with. He discussed all of the options, including opioids, but indicated he sensed that I wasn't entirely comfortable going that route, and that he wasn't either, at least initially. So he prescribed Lyrica, which he said they have had very good luck with. When I sent him a message to ask if I could up the Lyrica dose to 450 mg, he indicated I could, and that I should expect sleep disruption for a couple of weeks. He said to call if it became unbearable (I'm assuming to discuss the possibility of an opioid Rx), but fortunately it never did.

Jimmylegs44 - a very interesting post. You are making such progress and it is reassuring to hear that your symptoms although sufficient to prevent sleep, don't have you climbing the walls.

Also good news to hear that you were impressed with Dr Silber, this is positive information for other sufferers.

There was a time when I found myself doing odd things in the middle of the night, reaching out for what was not there... or it was there but disappeared. Coincidence or not, those actions disappeared when I stopped taking the Amitryptiline which was to help me sleep (but didn't), a general fogginess also disappeared when I stopped it.

Best wishes for night 11.

Jimmylegs44, thanks for sharing your experience. I suspect that I maybe facing something similar in the next few weeks, so hearing about your experience gives me an idea of what to expect and also how to plan for when I actually do it.

I take 8 mg ropinirole I have taken it for about 10 years. I started a 4 mg, I tried stopping cold turkey once. My Dr. would not give me an opiate or any form of pain pill. He reasoned that RLS is not a painful condition . When I stopped , almost immediately, both my legs,unless I was walking, moved rigorously without stop. I could control them only momentarily. After about 20 hours of almost non stop walking, I gave up and took some ropinirole and was almost immediately better. No Dr. in my insurance network will ever give me an opiate. Finding a Dr. who will give me an opiate , if nothing else, might require I get a loan-I doubt I have the money on hand.
If it takes 5 days, that is good news to me. I may be foolish, well, that is a given, . I might be very very foolish , but I intend to try again. I am retired so I can be miserable more easily. I will try in January,2016. I may not succeed-I know how my thinking becomes ,but, I used to be a runner and when I ran, almost invariably I would reach aa point where I started telling myself to stop making myself hurt, so I know a little about dealing with that voice. all I can do is try. The situation I am in now is intolerable .

richviv, 8 mg is quite a high dose. When you previously stopped did you do it cold turkey.
I'm wondering if an email to Dr Buchfuhrer - somno@verizon.net - explaining your plan might provide a guideline to do this.
Dr B is very good at speedy responses however, this is the holiday season etc.. As you are not planning to stop until January it could be worth your while to write to him.

I am also retired and full understand your comment that you can be 'miserable more easily'.
Please keep us updated, this is of such interest to other sufferers.
It is from members like yourself that we can all learn.

Richviv,
I sympathize with you 100%.
Ropinirole and Mirapex are in my opinion 'poison' above 1mg with Ropinirole.
I contacted Dr Buchenfuhrer 3 years ago and only 2 months ago did I get approval for methadone.
RLS gone after one day. Yes there are side effects because it is a painkiller and you can expect constipation at least, but the dide effects are nothing compared with living a normal life.
I believe Horizant and Lyrica re pain killers too but may be successful after getting off Ropinirole, otherwise keep on methadone.
Addicts are on huge doses 100mg+, this is 10mg and not addictive.
It's just the name that bothers people, they don't consider quantity.
Drug administration approved ropinirole and mirapex and these cause problems, yet the DA's won't approve a drug that counters 'THEIR MISTAKE'.
I personally would support a class action

Hi Ronofold,

Have you considered using kratom to help you get off of ropinirole?? It's a mild opioid that is legal is most states and countries. There is a good deal of info on it on this website; you just have to search the term. I have fairly severe RLS and kratom is all that I use. Best luck to you . . .

Made it through night 18 off of Mirapex. Certainly not out of the woods, but maybe more than half way out?? Improvement has been very gradual, and it seems to be two steps forward, one step back. A couple of nights in the past eight, I haven't slept hardly at all until 5 a.m., which I wasn't expecting at this point in my recovery. The past two nights, I've had 3.5 hours of uninterrupted sleep each night, which has been a Godsend. I've averaged 4.5 hours of sleep per night for the past eight nights (up an hour from nights 6-10), and haven't had any other strange happenings since scaling back Lyrica to 300 mg.

Many nights I've asked myself why I don't just push for an opioid, or why I didn't push harder at my Mayo appointment, or why I didn't just stay at 0.125 mg of Mirapex (daytime symptoms were resolved at that level, and sleep was certainly acceptable with that plus 150 mg of Lyrica, and Dr. Silber even mentioned this as an option). I have to remind myself that I'm doing this because I've set a goal to find out what my baseline symptoms are after being off all medications for 90 days. I'm in this for the long haul.

I have always thought that the JH info - saying it gets better at 5 days, then pretty good by day 10 - is the best you can hope for. While people who come here are often the tough cases, too many of us haven't seen reasonable improvement until day 15 or 20! In that regard, you're right on target .

Many nights I've asked myself why......I have to remind myself that I'm doing this because I've set a goal to find out what my baseline symptoms are after being off all medications for 90 days. I'm in this for the long haul.

Good for you. That's a brutal hard thing to remember hour after interminable hour of being tortured. You're an inspiration.

I made it through what I consider a major milestone in my recovery....night 30 off of Mirapex. Still seeing very gradual improvement in sleep. I've been averaging 6 hours per night for the past 10 nights, which I can live with, although I'd love to be able to get that up to 7 hours per night. Hopefully that will happen in the next couple of weeks. I'd also love to be able to return to our new king-sized bed, which I usually only sleep in for the first 15-45 minutes (whenever I first awaken with symptoms), at which point I head downstairs to the recumbent bike and then the couch. For whatever reason, when I think my symptoms have settled and I have a decent shot at getting some sleep and try to go back to bed, my symptoms appear quickly, whereas on the couch, I'm usually able to fall asleep. My wife tells me (jokingly) that she has gotten used to having the bed to herself and that I'm not welcome back. We'll just see about that!

I'm still taking 300 mg of Lyrica. Talk of my drug holiday was premature. I started to taper off Lyrica a week or so ago, and that lasted two days. Before I go that route again, I want to put some serious distance between my last Mirapex pill (start of withdrawal) and the beginning of my planned 90-day drug holiday, so I know that I'm dealing with my baseline symptoms and not wondering if it is lingering DA withdrawal. My current plan is to wait until April or May, as I'll be busy at work through April and can ill-afford any additional sleep loss.

Considering the extent of my symptoms after 30 days off Mirapex, given that I'm taking 300 mg of Lyrica, I'm not hopeful that I will be one of the lucky ones that won't need medication after all is said and done. Still, I am committed to seeing where my baseline symptoms are at before deciding if I will stay on medication indefinitely.

Finally, I am so incredibly happy that I no longer have symptoms during the day at work, or on the car ride home, or at meetings, and that I can sit and watch TV at night without symptoms, and can go out to eat at a restaurant with my family without symptoms. The list goes on. I honestly never thought I'd be able to do those things again symptom-free. This has made it all worth-while, even if the nights are still a bit of a struggle. If you're reading this and are on a dopamine agonist and suffering augmentation (or even if you aren't experiencing augmentation yet), I encourage you to strongly consider getting off the DA. It's scary and hellish to go through, but in the end, it will be worth it.

Congrats and I hope things continue to go well for you.

JL44 - your last paragraph is so positive and full of hope, I applaud your determination and progress.

jimmyLegs44 wrote:If you're reading this and are on a dopamine agonist and suffering augmentation (or even if you aren't experiencing augmentation yet), I encourage you to strongly consider getting off the DA. It's scary and hellish to go through, but in the end, it will be worth it.

I've highlighted this part of JimmyLeg44's post from Jan 8 because it's so darn important.