RLS/Augmentation and Refractory RLS

[Maggiemay9]

I have been dealing with RLS for almost 40 years. It wasn’t until 1996 that I was officially diagnosed through a sleep study. I was prescribed Sinemet at the lowest dose, and over the course of 5 years developed augmentation. Doctors tried prescribing other types of medications such as antidepressants, anticonvulsants, etc., but found they did nothing to reduce my symptoms, and in some cases, these drugs made the symptoms worse. I was then prescribed Mirapex in 2001 at the lowest dose of I believe .5mg. During the 12 years I was taking Mirapex, my dosage was increased until it reached 2.5mg daily. I developed a gambling problem because of the Mirapex, and almost lost my house and marriage. I blame these drugs for my augmentation, and my symptoms are so bad that I require 24/7 medication to control them. I am currently taking 300mg of Tramadol ER, and 100mg of Tramadol IR a day and have been for almost 5 years. Unfortunately, the Tramadol isn’t working like it used to, and I’m afraid I have either built up a tolerance, or I am augmenting again. My main GP is referring me to a neurologist because he does not want to prescribe anything considered a true opioid like OxyContin, Oxycodone, etc. Those of us with Refractory RLS have been through the wringer. I’m 60 years old. I just want some relief already!

[LotteM]

Maggie, you may have indeed become tolerant to the tramadol and/or augmenting on it. It is the one drug besides dopamine agonists that also may entail augmentation, although that may also apply to pregabalin.

I had the same thing - although on a much lower dose - as well as e.g. Pam34. She recently pasted a reply from Dr Buchfuhrer, one of THE RLS specialists, to her question for recommended treatment after tolerance/augmentation on tramadol. Indeed, a low(er) dose of a slightly stronger opioid, like oxycodon or methadon may prove succesful. I switched successfully to oxycodon (Targinact).

The oaper below on te use of opioids for RLS may help to guide your neurologist: mayoclinicproceedings.org/a...

Please do some reading on this forum, it may help you. You can use the search bar to find relevant posts on e.g. augmentation, tramadol, oxycodon/oxycontin/targinact and opioids in general. Or on alternative approaches to help you lessen the symptoms, such as diets, exercises, iron and magnesium and other supplements etc.

Good luck and take care.

[Joolsg]

Hi MaggieMay,

Are you still on Mirapex? If so, you’ll have to withdraw from that slowly before you can tell which drug is causing Augmentation.

If you are now only on Tramadol and no dopamine agonists, Tramadol can cause Augmentation.

As Lotte advises, OxyContin at low dose works well for refractory RLS.

I take OxyContin and pregabalin and follow a vegan diet and I no longer get RLS in the day and I get about 4 night’s a week free of RLS.

Take care

Jools

[Madlegs1]

Hi Maggie, as the others- I take a low dose of opiate ( oxycodone/ oxycontin 25mg per day) and have complete relief.

The only times I get rls is when I take triggers.

Print that article and give it to your neurologist.

There is a version of oxy that is recommended specifically for rls. Can't think of the name at the moment.

Good luck.

[restlessstoz]

Your story sounds so similar to mine in some ways; fortunately I haven't had the gambling problem and really feel you that you went through this. However, your story is very similar in that you've been through the wringer too.

I am currently a relatively new forum member and eternally grateful for the help I've received already and hope I can pass the benefit on.

I have been augmenting on pramipexole so have reduced and now gone off that though I suspect I am still having withdrawal symptoms. My nights are hell which means my days are spent in a fog of tiredness and the torture of wanting to sleep and often staggering through the day as if intoxicated. Currently I cannot have a daytime nap to help with the nights as I get RL as soon as I try to sleep in the daytime.

One thing I've learned in the last week is that Tramadol can cause augmentation as well which I wasn't aware of previously. Firstly my neurologist raised the issue and then and email from Dr Buchfuhrer confirmed that it does indeed cause augmentation and so I am now beginning the slow decrease. The suggested rate of reduction is 50 mg per week. I was very keen to drop it and it wasn't until I experienced head shocks that I looked up whether there were withdrawal effects so now have gone back onto the dose I was on minus 50 mg which was 150 in the daytime and 100 at night. I am now taking 100 for both and will reduce further next week.

I now have the challenge of following Dr B's advice on taking oxycodone or methadone as LotteM also mentions as I will have to instruct my doctor about the best practice treatments for refractory RL. One thing that Dr B says is that most neurologists are not able to treat severe RL as they do not have the necessary knowledge to do so. It is up to sufferers to educate the specialist, if indeed they are open to being instructed!

Also as LotteM mentions, my diet and lifestyle are completely geared to help with RLS and I will continue to do anything that will help to make life bearable.

Good luck with your struggle but know you're in safe hands if you listen to the experienced people who post on here.

[restlessstoz]

One thing to note though Maggiemay is that we are all different and therefore what is successful for one, does not mean it will work for all. They don't fully understand the reasons for RL or what causes it so the cures are often varied as are the responses to those treatments. Also, we/they may be experienced in a lot of ways, but we/they are not doctors so do your own research as well to back up what you read. You need to become the expert on YOUR own RL. I'm only a beginner on this road (only on the forum for 6 weeks or so) so you're not the only one who's in the dark!

[dugasjohn]

Low dose opioid therapy with gabapentin is the only way through this terrible journey once you have developed refractory RLS. Good luck !!