Restless Legs Syndrome (RLS) Discussion Board

I've spend the last 8 days trying to give up pramipexole... It has been brutal. I was diagnosed with RLS about 3 years ago (but had it for about 15 years) and had been taking 0.125mg every night. This was my third time to try giving up, the other two recent times lasted about 5 days, but after not sleeping much I just couldn't handle it anymore. My third attempt has been successful so far. I've had to give up everything, nicotine (casual smoker), alcohol (moderate because I knew it sometimes flared my legs), and coffee. No drugs at all. Complete cold turkey. Over the first 5 days I was lucky to get 3 hours sleep, but completely no sleep for first 48 hours, and hellish between 11pm and 5pm. Then I threw away some clocks because I realized I was addicted to looking at the time. I ate as healthy as I could, but some nights I needed a distraction so raided the fridge. I found taking hour-long walks around the neighborhood at 3am was soothing, albeit frightening at first. My legs were good after that for an hour or so. Anything to get relief: lots of stretching, tai chi, NRW, jogging in the park in darkness (very frightening but was the best relief of all). I couldn't watch movies or TV, turned it off. I found playing chess in bed a good distraction. Push-ups and sit-ups gave a bit of instant relief. Luckily I didn't really have anything important to do over the week. I was functioning, but only just. I tried every technique I could think of to fall alseep, but it just wouldn't come, even at the times when my legs were feeling relaxed. Then after about 5 days, I had a night of really low intensity RLS and thought that was a positive sign.. but still couldn't sleep. Then after 7 days I slept quite well.. even I don't know how many hours because I'm trying not to look at any clocks. Next day felt really good, played my best golf in 10 years! but no sleep came that night. Overall feeling much better... feeling more like myself? That's my story so far...

YAY! Likely you were experiencing augmentation. And now you are not. That is wonderful.

wilabozo wrote:I've spend the last 8 days trying to give up pramipexole... It has been brutal.

Welcome wilabozo. You have come to the right place. "Brutal" is a good description of the torment you, me and many others on this forum have experienced. I usually use "torture" to describe my experience getting off pramipexole.

Do you have a plan going forward for treatment of your RLS? Please be sure to include IV Iron in your plans. IV Iron has recently been moved to a "first line" treatment status by an international group of RLS specialists. It is the only treatment that doesn't have significant side effects.

I am so impressed with you! That's hellish hard to do. You're approaching it right, not expecting anything of yourself and living in the moment as much as possible, finding what relief you could and snatching whatever sleep you can get. Don't forget, during those times that your symptoms are still but you can't sleep, that simple physical rest is good too.

I too am curious about your post-withdrawal plan. It seems you don't have a doctor who knows much about WED/RLS. Have you read up on the value of iron? Even oral iron works for many of us, reducing symptoms, and IV iron can actually eliminate symptoms if you're among the lucky ones. As Holland says, a series of infusions would be better but If you can't get an infusion , oral iron might help. If iron alone doesn't help enough, you will probably need to take an opioid at a low dose. Do you have access to a doctor who understands all this?

Thanks for the encouragement and info! I had a second day of decent sleep, legs are low intensity. I've adopted a low stress regime, resting my legs whenever I can, informal meditation especially relaxing the face, that seems to set the tone for the overall level of stress in my body. It's weird but I feel a little euphorical now that I've ditched the pramipexole, a bit more clarity about what's going on.
Yeah I'm going to educate my doctor more and look into iron. Thanks!

wilabozo wrote:Thanks for the encouragement and info! I had a second day of decent sleep, legs are low intensity. ... It's weird but I feel a little euphorical now that I've ditched the pramipexole, a bit more clarity about what's going on.

Why did you decide to get off the pramipexole? Exactly what problem did it cause?

Sounds like you are trying to manage your RLS with no medicine in the future, possible, but very difficult.

I am going for my first iron infusion this Wed., the 23rd. I am a little apprehensive and wonder if anyone has had an infusion. In my research, there are many references to patients having them 6-8 times, each lasting 6+ hours. My hematologist told me mine would be done twice...a week apart and each lasting about 45 min. This is confusing me; are there different types of iron infusions and is the kind I’m anticipating common for RLS patients? The side effects don't sound bad or common so I’ve decided to talk myself out of worrying about them! Any suggestions, hints, or success stories after the infusion would be greatly appreciated.

Reba1 wrote:I am going for my first iron infusion this Wed., the 23rd. I am a little apprehensive and wonder if anyone has had an infusion. In my research, there are many references to patients having them 6-8 times, each lasting 6+ hours. My hematologist told me mine would be done twice...a week apart and each lasting about 45 min. This is confusing me; are there different types of iron infusions and is the kind I’m anticipating common for RLS patients? The side effects don't sound bad or common so I’ve decided to talk myself out of worrying about them! Any suggestions, hints, or success stories after the infusion would be greatly appreciated.

Reba, Welcome to the RLS community. I have copied your post to the Injectafer thread, it is about IV Iron infusions. Click here for further information. http://bb.rls.org/viewtopic.php?f=4&t=10227&p=96901#p96901

Overall feeling much better... feeling more like myself?

That is exactly how I felt when I finally eliminated pramipexole. Could not believe just what an effect it had had on my personality until I was off it. Well done. It is truly torture getting off it ... but so worth it. Things can only get better from here. They certainly have for me.

Why did you decide to get off the pramipexole? Exactly what problem did it cause?

The first 6 months on pramipexole were brilliant... a miracle! Then it stated to taper off, and if I really wanted to make sure I had a good sleep before an important meeting next day, or a plane trip, I would double the dose, and suffer the consequences for about 2-3 days after. During this last year, I don't think it has been effective, so I want to find out exactly where my RLS is without drugs, and then decide whether to go down the medicine route again, eyes wide open! I didn't realize it was so addicted, the doctor gave me no such warnings. I think my sociability has deteriorated over the last few years, and that's probably because of the RLS, but I also feel now that pramipexole distorted my emotions somewhat. Very difficult to nail down in words, but something like I lost passion for many things and just went through the motions, I was over-sexed, which I think was just a distraction.. but maybe the drug enhanced that, and I guess I didn't quite feel myself. Now that I'm off for Day 9, I more 'own' my emotions.. I know it's early days, but I feel more alive, even when I'm suffering.
I don't know how I'll go drug-free in the long term. I'm working toward de-stress techniques.. and also not freaking out about not getting enough sleep.
I have a ski trip coming up in about a month, sharing a room with 2 other guys for a week. My brain is saying I should take the drug during that time, also for the long-haul flight to get there.. it's nice to have that option, and in the past it has really worked well after taking a break... but the come down and withdrawal is intense, and with such highly a addictive drug your brain can easily justify to take it again...

stjohnh wrote:Why did you decide to get off the pramipexole? Exactly what problem did it cause?.

wilabozo wrote:The first 6 months on pramipexole were brilliant... ...I think my sociability has deteriorated ... pramipexole distorted my emotions somewhat. Very difficult to nail down in words, but something like I lost passion for many things and just went through the motions, ... I guess I didn't quite feel myself.

Yup, that pretty closely describes my experience.

wilabozo wrote: I know it's early days, but I feel more alive, ...

Me too. Difference is I have been on low doses of 5 different drugs simultaneously until recently. All of them cause undesirable side effects, but I think the pramipexole is the worst. I recently had an IV Iron infusion, and am off nearly all RLS meds. Iron is the only accepted RLS treatment that doesn't have significant side effects. Check into IV Iron Infusions (Injectafer).

Now that I'm off pramipexole I'm finding I'm able to nap during the day.. whereas when I was on it, I tried but it never happened. Napping during daytime gives me a lot more options, and I don't worry about not being able to sleep at night. Like today, I was doing some work from home on the computer, and that wave over sleep washed over me, so I crawled off to bed and got a solid hour or so... I haven't been able to do that for years. Now I see the advantage of having a siesta!