RLS withdrawal symptoms

[99selkies]

I am coming off of Pramipexole which I have been on for just over 18 months, as I am going into augmentation. I have started on Gabapentin. Been on it for a week now. Slowly reducing the Prami & slowly increasing the Gabapentin. But its tough going as my nights have been mostly very bad. RLS spread to my upper body so up pacing nightly. Just wondered if anyone has any helpful suggestions or advice. Thank you

[Hidden]

I'm so sorry it's hard right now! I went through traumatic augmentation on Pramipexole. All I can say is that it will get better. To add merit to my last statement, let me say that I never thought I'd be around to say that.

Can you tell me where you are now in your dosages? Also, I'm assuming you're weaning off (and then on) with doctor guidance?

For help, you could try these gentle exercises. The site I wanted to refer you to is not working at the moment, but here's a similar one featuring the same exercises:

vivehealth.com/blogs/resour...

Other things that I tried during augmentation (some of which I've stuck with) were/are:

Suppprt stockings (there are also arm compressions if you have it in your arms like I do), freeze gel, lidocaine liquid roll-on, magnesium oil, Relaxing Leg Cream by Magnilife (can order on Amazon), heated massage, HARD hand massage, pounding water right up against every inch of my legs with the jet spray option on my shower head and magnesium tablets.

I want to note that many of these suggestions did not work for me (or worked for a very short time) while augmenting, but I wanted to give you plenty of things to try🙂.

Give a "shout out" if you have questions or wonder about something.

[Hidden]

Without knowing what dose of pramipexole you're taking, how slow or fast you're reducing it and what dose gabapentin you're taking it's not easy to say what's happenimg.

There's no doubt you are experiencing withdrawal effects from the pramipexole, which is not at all unusual. In respect of that, the slower you reduce the pramipexole, the less the side effects. I went through pramipexole withdrawal and I reduced it in steps of 44ug or half a 0.125mg (88ug) tablet. I reduced it once every four weeks. If withdrawals aren't too bad after a reduction you could do it faster. 2 weeks is possibly the minimum.

The other things I found helpful was to increase the gabapentin BEFORE reducing the pramipexole. I'm sure this helped reduce withdrawal effects

I also had some clonazepam available if sleeplessness got really bad and I was lucky to also have some codeine left from a previois prescription if I needed it, as an opiate can help with withdrawal.

If you've only been taking pramipexole 18 months, this is unlucky. Augmentation usually takes longer to occur.

It also implies that you were only diagnosed with RLS 18 months ago, or, it only became severe then. I write this because it may be that you haven't tried the non pharmacological strategies for RLS . Maybe you did and they failed, but it's worth re-visiting these.

You'll find a description of some of these at this link. Look at iron replacement and non pharmacological therapy.

uptodate.com/contents/treat...

If something triggered your RLS as it did in my case, many years ago, then if the trigger is removed, once you've withdrawn from pramipexole, it's possible you might not need medication.

What happened with me was instead of looking at triggers and non pharmacological therapies, a neurologist just prescribed a high dose of pramipexole and I spent nearly ten years dependent on it. It's possible I might not have needed it. Too late to say now, after being on it that long it may have made some irreversible changes.

[Joolsg]

I’ve just replied to someone else about a webcast broadcast by the USA RLS foundation on Friday. Dr John Winkleman advised taking a minimum of 3 months & up to a year to slowly reduce DAs. He also advised slowly increasing the med you will be taking instead ( alpha2delta ligands like pregabalin, Gabapentin or Horizant or long lasting opioids) so that you’ve reached optimum dose before you get off the DA.

The slower the better. I reduced 4mg in 3/4 months and think that’s why my withdrawal was so horrendous- didn’t think I’d make it through.

All the suggestions above are helpful but they didn’t make much difference to my severe withdrawal symptoms either.

The 2 things that helped are an opioid ( I used tramadol every 4 hours during the last stage) and illegal cannabis which literally saved my life by giving me 30mins sleep after no sleep in 3/4 days.

I wish you luck. Life off DAs is a lot better so don’t give up.

[Hidden]

My doctor has told me to go on a drug holiday meaning that I immediately stop Sifrol...not gradually and take tapentadol for one week and then go straight back onto Sifrol (pramipexole). No rls at night and after one week off sifrol no augmentatation. I have done this a number of times and it is amazing. When I start to feel augmentatation after about 4 months I do this. It is a life saver. I would like to say also that my specialist also has RLS so he really understands. This is what he does ...it works so well. No withdrawal symptoms and augmentation just disappears . I wish all doctors advised this instead they say to go off slowly...you really don't need to if you take tapentadol for 1 week on its own.

[Hidden in reply to Hidden]

Yep, it just goes to show that not everyone taking a DA augments or goes through horrible withdrawal. It is possible to have even severe RLS and still be able to deal with it the "non-research" way. I wish "non-research" ways would be more widely accepted here and that people wouldn't be made to feel unaccepted for being able to do that.

I'm glad you are doing well!🙂

[Joolsg in reply to Hidden]

There are a few people who follow the drug holiday route.

I’ve never heard of using a benzodiazepine for a week to do it though.

How brilliant that you can do that and have no daytime or nighttime RLS.

I have also heard of drug rotation and drug holidays helping, but only when a DA has stopped working, not when it’s caused true augmentation.

Glad you are RLS free.

[Hidden in reply to Joolsg]

I have had two surgeries within 6 months and did not use sifrol because I was using tapentadol...no issues with RLS.. sifrol was still working and then went straight back on sifrol...works really well for me.

[Girlinmy_soup]

Have you tried pranayam.... Shavasana in particular...?

I found emptying the bladder and Adjusting the room temperature... maybe putting the fan on... or opening a window.... can help.... me settle at night....

[Henshaw241241]

Hi am sorry to hear about this I was on them then I went in to Augmentation very bad climbing the walls and walking outside I went to the doctors then she sent me to see a neurologist the best thing happened then she put me on pregabalin 75 mg I at 6 pm and 1 at 9 pm very good the best nights sleep I have had for a long time all the best Tony Henshaw 241241

[Marvene1942]

I went thru the same thing. I had been taking prampixole for 8-9 years. It was terrible feeling. I went to a Dr. in Los Angles area and he put me on a opiate. It worked for awhile. Then all of a sudden I had vertigo. Which lasted for almost a year. Then he put me on Gabapentin and it is a miracle no RSL and no Vertigo. I guess I am allergic to Opiates. I have been very happy with the results. I hope this helps you.

[Dougg]

If you are able to obtain it, kratom has worked for many - including me - in mitigating RLS symptoms. I used it to make the final push off pramipexole, and I had no withdrawal symptoms (which I definitely was having prior to the kratom).

If you do choose to try kratom, be sure to find an outlet that sells pure unadulterated kratom with no additional ingredients. It's also best to rotate strains, if possible, to avoid building up tolerance.

Good luck on your journey! There is lots of helpful RLS support on this site.

Best regards,

Doug

[J296]

I would stick at it but it is difficult. I was on pramipexole for 9 years. Initially it worked well. But I had to keep increasing the dosage from 0.088mg at the start to 0.7mg for the last 3 years. Like you I was suffering from augmentation and it became clear that pramipexole was making my condition worse. My sleep was down to 4/5 hours a night.

Coming off pramipexole was very difficult and I had a number of sleepless nights. Since then I've tried rotigotine patches and gabapentin without much success. I'm now on 300mg of pregabalin.

Although I'm not cured, my RLS is much less pronounced during the day and evenings. I am also getting more sleep - 6/7 hours. But nightimes are still a challenge often waking with RLS symptoms in my legs and sometimes arms. When this happens cocodamol or a soak in a bath with Epsom salts can provide relief.

Hope this helps.