How does everyone differentiate between RLS symptoms, vs. augmentation from one of your meds vs. withdrawal symptoms

[Tobias10]

I have been dealing with RLS for 20 years and the past year has been by far the worst with significant escalation of the disease. I have experienced augmentation from Mirapex and then severe withdrawal due to very bad advice from my neurologist. I was then put onto Neupro patches at 2mg and a week later upped to 4mg but have now stopped those as I had no evidence that they were doing anything and I was trying to get into a clinical trial that required no Neupro patch. I am currently taking Sinemet and Mirapex, along with Gabapentin and am struggling to come up with a regimen that avoids severe breakthrough episodes in the evening. My fear, once again, is that I will continue to need more and more of the Sinemet and Mirapex to sustain me throughout the day and to try and get some sleep at night and be back in the same vicious cycle of augmentation again, requiring withdrawal again. I am hoping to travel next year across country to see my daughter but cannot imagine right now how I will tolerate a plane trip without having a sedative from my PCP and having to be poured onto the plane and back off again on the other end.

[LotteM]

Dear Tobias, your story doesn't sound good. Not at all. You said you augmented on Mirapex, withdrew, were put on Neupro, another dopamine agonist! that didn't do anything so stopped it, and are now back on Mirapex combined with Sinemet. The latter is a precursor to dopamine, and has a much higher chance of augmentation than Mirapex or the other dopamine agonists (DAs).

If anything, it seems you have moved backward rather than forward. Most likely you will have to come off the Sinemet and Mirapex (very slowly!!) and seitch to a non-DA medicine. Gabapentin or pregabalin, or when in the US Horizant are the next choices. They take several weeks to start working, and most likely not work well until a few weeks after you have completely withdrawn from the Sinemet and Mirapex. If these alternatives don't work, low dose opiates are the now accepted effective treatment. Oxycodon/Oxycontin, methadon and recently buprenorphine are the most effective ones.

I suspect you are in the US? If so, tell us where you are and we can point you to a quality care centre for RLS recommended by the US rls.org organization. You clearly need a more knowledgeable doctor . Or to a support group nearby. I am in Europe but a member of rls.org anyway, because of their knowledge and support. Many others on this forum are members of rls.org and can help you by sharing information.

[dklohrey in reply to LotteM]

Was on ropinirole ( a dopamine agonist for 20+ years, maxing out at 3mg every night before bedtime). My experience with augmentation was that my RLS symptoms, rather than occurring just at night while in bed, started to occur during the day, while sitting. It got to where I would stand while watching tv or kick my legs against my car seat while driving, just to relieve that awful feeling in my legs. I also started to get that same antsy feeling in my hands, causing me to shake them, again to relieve that feeling. Now that I have weaned myself from ropinirole, all of my daytime feelings have left. I can now sit and watch tv or sit for lunch. I can drive a car without issue. I can even lay in bed and read for an hour or two without incident. I am currently on 600 mg of gabapentin but suspect I will have to go up to 900 mg. Though I can lay in bed a couple of hours without incident. after those hours have passed I do start to feel antsy, not to where I feel an urge to kick, but to where I feel the urge to move my arms and legs. After another hour or two, I fall to sleep and wake 6 or more hours later.

[Mazzi2 in reply to dklohrey]

Did you just use gabapentin to help come off sifrol

[dklohrey in reply to Mazzi2]

No. I had read where gabapentin was a good solution for RLS and that augmentation would never be an issue with this particular drug. The drug does, however, take a couple of weeks before it becomes effective, so when I started to wean myself off of ropinirole, I decided to supplement gabapentin, beginning with 300 mg. Of course, I discussed all of this with my physician and thankfully she was on board. She by the way also suffers from RLS. I have now been off of ropinirole for a couple of months and am now at 900 mg of gabapentin. For the most part I am free from RLS symptoms, though I still get brief reminders of the condition during the day. I can now sit and do a crossword, watch tv or drive a couple of hours in the car without issue. I usually get about 6-8 hours of sleep a night. One curious issue of my withdrawal off of ropinirole is the ease with which I can now lose weight. Plus I no longer have the desire for binge eating. I have gone from 267 pounds down to 235 pounds. I will say this. I am retired. I do not know how I would have withdrawn from ropinirole if I had still been working. I would probably have taken more time in the process. I was done with ropinirole in about three months, going from 3 mg to nothing, but it was difficult, with many sleepless nights, followed by days of exhaustion. I fought depression. Ropinirole, a nasty drug. I was fortunate to have a very supportive wife.

[Madlegs1]

Plus Lotte.To answer your heading- rls symptoms at their simplest are an uncomfortable feeling ( tickly, fizzy, unease and even cramp or pain ) in the feet and legs, that are only eased by moving those limbs.

Augmentation is the extension of those feelings to the rest of the body, and in greater severity . But-- only after having been on dopamine agonist medications for a while.

Withdrawal symptoms ( after almost any substance) is horrendous. No mistaking. Hunger pangs, shivering, flu like feelings, cramping, headache ,miserable. You will be capable of doing absolutely anything, just to get rid of this hellish state of being. It is NOT just feeling off colour or uncomfortable.

If you are near CA ,you could try contacting Dr Buchfuhrer. He has a clinic somewhere there.

Good luck.

[Tobias10 in reply to Madlegs1]

I am in Pennsylvania. I have looked at his website but thought it was a bit quirky that he refuses to respond to anyone who does not use perfect grammar. I am trying to get into Johns Hopkins to their RLS specialty clinic but new patients r on hold as they r overloaded and I am out of state

[Madlegs1 in reply to Tobias10]

I can appreciate your feelings.However, if I were suffering, I would walk barefoot over red-hot coals to get top advice.

But then, I'm just an awkward sort of cuss.😜

[Tobias10 in reply to Madlegs1]

Agreed, but there is no guarantee that he is even seeing people in CA so I'll wait until after the first of the year and apply to Johns Hopkins again - i can dive there in 4 hours, stay overnight and be back home the next day.

[LotteM in reply to Tobias10]

Hi Tobias, I didn't see your reply until today. Indeed, Johns Hopkins is the nearest. Other quality care centres are Yale Center for Restless Legs Syndrome, Nee Haven, Connecticut. And Vanderbilt University Medical Center, Franklin Tennessee. JH is probably the best though. Do check out their website. And di consider becoming a member of rls.org.

Meanwhile, I hope the gabapentin keeps working for you. 600mg is still not high, thus increasing to 900mg may work out well for you. I hope so.