I have taken Neurontin for RLS for years. At least "off and on" I should say. I recently detoxed off morphine and the PA gave me Librium. The PA did not notice I have RLS and prescribed Librium for me during detox. The Librium REALLY sent my RLS through the roof. Not realizing the Librium was making my RLS worse, I took it for several days. I walked around the house like a zombie, sleeping about 2-3 hours in the first couple of days I was detoxing. Medical people said detox was like that .... too lazy to read my charts I guess. Easier to just tell me the "book answer". When I found out Librium was not for people with RLS, I quit it and the RLS was not as bad.

I was put on Mirapex, but it did not seem to work. Then Ropinirole and it worked, but it seems my nausea gets worse with every 3mg tablet I take. It takes 6mg a day to stop the RLS. I have taken it with food, without food, 30 minutes after eating and so on. Another strange item with Ropinirole is that I was NOT nauseated the first month I took it. It is like the more of it I put in my body, the less tolerant my body is of it. My last attempt at using Ropinirole would be to try taking 2mg at a time, 3 times a day, or 1mg at a time, 6 times a day. Any ideas?

How about Neupro (rotigotine), anyone use it? I understand every human body is different, but -- I guess I am trying to find a med that works without the nausea.

Suggestions appreciated.......Dave

Walgreens does not have Neupro on its list of drugs. They think it hasn't been approved in the US yet. EU has approved it. It is a patch.

I got my prescription for Ropinirole changed from 3mg twice a day to 2mg three times a day. I hope that does it.

Adding insult to injury, my feet burn at night. Neurologist said it is Fibromyalgia. I don't remember him running any tests to determine that. Sometimes it feels like when they don't have any idea what is bothering them, they call it Fibromyalgia. I put lotion on my feet and they quit burning. A couple of hours later they are burning again, sometimes so bad I wake up.

Last question for me is ...... anyone actually taken ReQuip? One pharmacist said he was told ReQuip is not as nauseating. Anyone know?

Dilfo--
Have you tried asking your dr if he could prescribe an anti nausea med (Zofran, Phenergan, Reglan , etc )? If the RLS med your on is working, it might be worth it to try taking an anti nausea med to combat that side effect. I don't have RLS, but some of my neuro meds cause nausea and taking an anti nausea med really helps...

Just an idea --
L2L

I have the Phenergan here, for the grandkids. I did not think of it. It is worth a try.

I think the reason I did not think of anti-nausea meds is because I am trying hard to cut back on the number of meds I am taking. I have reduced the prescriptions from around 25 a day to about 12-15 a day and I am reducing the quantities there. I was on three quinine capsules a day for severe leg cramps. 972mg a day. Quinine is hard on our bodies, so I have got that one down to one capsule a day, and so on.

Last night was extremely stressful on me, I was so tired from "fighting" the RLS I fell asleep in seconds. I put my oxygen mask on, turned the Ventilator on and don't remember a thing after that. I did take 5mg of Valium and 10mg of Flexeril to help me sleep. So far, it works, but I only do that about twice a week.

I GUESS WHAT BOTHERS ME THE MOST IS THAT THE ROPINIROLE DID NOT MAKE ME SICK THE FIRST MONTH OR TWO. NOW IT MAKES ME NAUSEAS ABOUT A HALF HOUR AFTER I TAKE IT. SORRY, ALL CAPS FOR EMPHASIS, NOT A RANT.

Thanks again for the suggestion, I will add that to my list of meds and vitamins. I carry all of them in a large Craftsman tool bag.

I have RLS and Zofran sent me thru the roof with dystonia. The dystonia from Zofran is NOT stopped by dopamine agonists. (I got my first dose in the ER, after puking from IVIG, and they gave me a double dose.....OMG) I have had RLS my whole life and this was RLS on steroids non-stop for 10 hours.

I was on high doses of Mirapex for a good while, however, took it all at night. I was up to .675mg at bedtime for a while. Mild to moderate nausea was an issue. I was on it for 8 years or so.

Dopamine agonists have their downside, one is nausea, the other hypotension, and some folks get sleep attacks.

Generally, SSRIs (serotonin reuptake inhibitors), anticholinergics and antidopaminergics exacerbate RLS.

You may be having more RLS from coming off opiates and benzos. Been there done that, as has every one with a chronic pain issue....and yes, it is OK to walk around for a few WEEKS like a zombie. It will pass....but it stinks right now.

One caveat, we are all different.

cyclelops-
Thanks for the encouraging words. I just got my Mirapex prescription renewed and took .125mg about 7:30pm tonight. I went to bed around 10:30pm and RLS slowly cranked up.
You know the drill. I sleep on a Ventilator, with oxygen, so I sleep on my right side...so any "blow by" of air misses my wife. Right leg started up...I moved so that my left leg was not on top of my right leg. Ah...relief...for about 5 minutes. Rats...I moved around to where I was on my back, with pillows under my knees so my lower back could tolerate it...remembering I am not on opiates anymore, so minor problems can push the pain level up. Nope, on my back did not do it.

I got up, took another .125mg Mirapex about 11:50pm, then ate something so nausea would not get to me. It is 12:02am and I am doing.... sort of ok.

LISTEN TO THIS...MY WIFE NOTICED I CAN SIT ON A HARD CHAIR FOR A COUPLE OF HOURS WITHOUT RLS ATTACKING. SITTING IN MY LAZYBOY....GIVE IT 30 MINUTES AND I AM IN BAD SHAPE WITH RLS. A HARD CHAIR. WOOD. Please let me know if this helps you.

Now, the other side of the coin is, my lower back does NOT like hard chairs. Darned if I do, and darned if I don't at times.

I have not tried the anti-nausea meds .... I was going to, but .... one of the side effects of my years on morphine is reduced memory. I have to write everything down.

My goodness, I just looked up Dystonia. Arrrrgh, that sounds terrible. I have not had that problem yet. But at least I am aware of it thanks to you.

Of all my problems, and I have a bunch of medical problems, the Neurological issues concern me the most. I was born with CCHS, which many doctors now think is "SIDS". A baby just dies and no one knows why. Quick explanation is when normal people sleep, a part of their brain/CNS tells their heart to beat and tells them to breathe. My system does not tell me to breathe. That is why I sleep on a Ventilator. I have hit 30cmH2O for 30 straight minutes per the software program that monitors me. I have a lot of lung problems, including COPD, second hand smoke damage to my lungs = an excellent chance at Emphysema ---and I have never smoked one time. At least I will die that way, Neurological problems just make me wish I were dead!!

Oh well, I am pretty lucky. I have the greatest wife I could ever hope for, all 5 kids are talking to me and my Service Dog/Medic Alert Dog loves me. PLUS...I have a full stomach and a roof over my head. Life is good.......

Plus, you're not blind.

Pian,
You are right. I am not blind. I could be a whole lot worse off. I know that.

The Mirapex is working and the nausea is gone. That is good. I hope you are doing ok.

Doctors tend to prescribe dopamine agonists (Mirapex, Requip) the same way for RLS that a Parkinson's patient takes....BIG no, no. RLS patients need it at night, generally in far lower doses than Parkinson patients.

I have found it is easier to prevent the RLS than try to tangle with it. I too find myself taking too little, then, later having it rage up at midnight. I have it in my legs, arms and upper back.

I have also had dystonic reactions to meds....Zofran being the worst. It is in the family of SSRIs. I will not let a doc come near me with any SSRI, antidopaminergic or anticholinergic.....which leaves me with very little to take.....and they think I am nuts....whatever. I know what it feels like to writhe for hours and hours on end.

dflo, you know where to find me if you need me....glad you are feeling better, and I too had the best Thanksgiving. My son and daughter in law are having a girl in Feb/March! So excited!!