Relief after years of "Can't do anything for that"

[Christene]

Well after years and years of suffering with itchy, twitching, restless legs, l got a break with a new GP. We had a chat about this as he was reviewing my medical history, and he revealed he was also a sufferer...

Told him all the thins I had tried, magnesium spray being the most recent, as the lack of magnesium is a trigger for the nervous system, and twitching ...

He said that this was unlikely as I would have presented with other symptoms... he mentioned that some work had been done with Parkinson's related drugs, and was I interested in following this line of medication. He seemed to understand my issues, as he was a fellow sufferer, I decided to go with his thoughts on a new medication routine. The Codeine I'd been taking was now not allowed to be prescribed for non pain conditions.

He suggested. Ropinerole, 250micro gram capsules. This is the mildest medication and the smallest dose, at a quarter of a milligrams that's small.

My restless legs improved noticeably, but not completely... after a few weeks we agreed on a 500microgram capsule once a day, double the original dosage, bingo... all the twitching and itching has gone, I now sleep through the night, instead of being awake and tossing and turning for hours until I was so knackered I slept because of exhaustion...

If I miss my tablet, as I have been known to, I know about it, the effect of the Ropinerole is like a light switch.

Talk to your GP about it.

[Windwalker]

Cobbler174,

I have been down the road you are traveling.The reason your doc gave you ropinirole is it is being ted as an off label treatment, because there is no med that is made for RLS. I started on Maripex and was really happy with the results until all my compulsions became so dominate

I couldn't control them, as everyone who has been there knows, it becomes a substitute for intimate things. I fixated on winning a lot of money, and sometimes I did. My pensions are all looted and I owe a ton of money . I was diverted by ropinirole which is not even close to maripex and how it makes you feel and how it stop your symptoms.

I sleep less than 3 hours in 24. I take time released ripinirole 2 mg 4 times a day and am never at rest.

It is such a depressing existance that have to look for little things to make me want to go on.. Having blown a fortune, I now live modestlyn

and try to forget my problems. I also take Gabapentin and vicodin in small doses and that is how I get any sleep at all.

Cobbler, I74--live for the moment--one day at a time-- try to be happy.

[roxyshopper in reply to Windwalker]

What was your dose of Mirapex ? Unusual to have that reaction at a low dose. I started at .25 mg in 2001 and am now at .5 mg twice a day. No compulsive behaviors.

[marsha2306 in reply to roxyshopper]

That sounds like a high dose to me.

[Windwalker in reply to roxyshopper]

YOU probably didn't have obsessive compulsive disorder already. Most who have it don't know it until it becomes excessive to the extreme. You didn;t I did.

[Joolsg in reply to Windwalker]

Wow Windwalker,

You are in full blown Augmentation due to the 8mg of ropinirole you are on. 1mg is the maximum recommended dose.

Look at the video on the front page of the RLS UK website and read all the posts about augmentation. You need to get off it over months, slowly, with the help of a strong pain med.

Bganim has just come off a similarly high dose so have a look at her posts and her journey.

I wish you all the best in getting off it.

Any questions, just ask as loads of people on here have been in your situation and managed to get off ropinirole and get some good days and nights.

[LotteM in reply to Joolsg]

Hi Windwalker,

What Jools just wrote: my thoughts exactly!

Your life can be better than what you describe. It may take a while and be difficult to get there, but we're here for support and - if needed - a shoulder to cry on.

[Yorgi1950 in reply to Windwalker]

Hi Windwalker. Just had to write you. Long story, short. I suffered MANY years like you, then was offered to try magnetic mattress pad for 2 weeks. Had not slept more than 2 to 3 hours a night for 3 months. 1st night with mattress and I slept all night and every night for all 2 weeks. Needless to say, I purchased mattress and have had 25 years of no RLS what-so-ever! Only problem, mattress costs $700US here in the States, but without it I don't know if I would still be alive. In UK I believe can only purchase thru distributor and probably very expensive. It is ordered thru NIKKEN company and is called Kenko Naturest Mattress Topper. Just had to let you know as I see you are going thru same h..l I went thru. Pray that maybe this will be of some help to you and anyone else on this forum.

[Christene in reply to Yorgi1950]

Just had a look, the Nikken one for a King size bed is $1441 !!!!, but a Google search revealed this one .... promagnet.com/collections/b...

at just over $550 its seems like its a snip. This is the first I have heard of using this type of technology for RLS. Its OK at home, of course, but what about holidays and vacations ... can't really take a mattress .... am interested though ....

[Yorgi1950 in reply to Christene]

Very good due diligence Cobblers174!! Since I had solved my problem 25 years ago, I had not researched the subject any further. This info may be of great help to others. I see a twin size is only $317, so if they don't want or need to share with their bed partner, this is great news. I am amazed, they also have a 45 day return policy which NIKKEN does not have. Have you thought of getting just the twin? Hope others see this post so that they may consider trying it. ( P.S., my wife did not like the somewhat harder feel of the mattress so I was able to cut the queen into 2 twin sizes.)

[Hidden in reply to Windwalker]

OCD? 100% with you. But that I am now 'kinda' controlling. Without Sifrol (Mirapex) there's no way I could control the hideous symptoms of my RLS.

Obsessiveness was my downfall. Gambling ... not with money. Increased sex drive. Enough said.

[Windwalker in reply to Hidden]

When I posted the blog about Obsessiveness, I knew I didn't go to every possibility, nor should anyone have to confess to the world the really stupid things they have done since taking one med or another. WE had these latent characteristics already and they were under control, but our inhibitions were released and we expected a pleasurable outcome and when it didn't always happen, we doubled our efforts to find the pleasure we sought and in my case almost lost everything I treasure.

[Hidden in reply to Windwalker]

I am sorry, Windwalker, but I will have to respectfully disagree with your following quote regarding obsessiveness ...

"WE had these latent characteristics already and they were under control".

When the obsessiveness first reared up it's ugly head in my life (which BTW was immediately after my first dose of Sifrol, I can still remember thinking, 'WTF is going on. Why am I doing this'? But I couldn't stop it. And then I was advised of the side effects, and I immediately related. But I still couldn't stop.

It was a physical movement that I would actually feel kick in. And when the obsessiveness took over, I'd think, 'OK Mum, put the paint brush down and go to bed. Four hours later I'd put the brush down and go to bed ... maybe.

The very first time I had Sifrol was 2008 and I had just built a new home on a quarter acre block of virgin land. I have never gardened before in my life. Never wanted to, never enjoyed it, but I put in a magnificent garden in this block. I'd garden from sun-up to sun-down and I absolutely loved it.

I can vividly remember saying to Mum, while digging a hole, 'Please stop me Mum ... I can see China'!

ATT I had only been taking Sifrol for approximately 6 months. I stopped taking it because it stopped working ... but apparently the obsessiveness continued. But the three heart attacks soon put a stop to the gardening.

The feeling of obsessiveness was so foreign to me and so out of character. In hindsight I kinda wish I'd had some of it in my earlier years .... not quite to the extent that I eventually had it but a little bit wouldn't have been too bad. I would have been able to accomplish quite a bit.

[Hidden in reply to Hidden]

Hi Phogan. Great response. And great explanation of side effects popping up after taking a new med. Since you didn't exhibit these compulsive behaviours prior to taking the medicine, my opinion is that you didn't have any latent characteristics to draw on. Therefore it appears your compulsions were directly related to the medication. Take care, Burma (burmag)

[Hidden in reply to Hidden]

Hi Phogan. Just wanted to tell you I have rejoined-new user name irina1975. Just rejoined in January and also belong to the atrial fibrillation community. Take care Burma

[Madlegs1]

Good that it's working for you.

Research Augmentation on this site and Google to see what may be in store for you.

The most effective treatments for rls are off label and if insurance is a consideration , may not be covered. Sometimes the diagnosis has to be "creative"! ( I have opiate prescribed for back pain- but it is for rls that I need it most)

It would be well worth researching on this site and

rlshelp.org

To educate yourself. Your doctor would also benefit from that as well.

Cheers.

[Windwalker in reply to Madlegs1]

My guy handles diagnosis well. He prescribes one med after another until one works. My opiate is prescribed for Fibromylgia and in the record he says not a canidate for NASIDS and needs stronger meds. He's better than most neurologists but does not have the malady so he says right off that he is like a pilot flying a plane he never flew before with the windscreen blacked our and a candle held by an assistant as his source of lite. he is trying to be funny but he is very close to correct.

[Hidden in reply to Windwalker]

Hi Windwalker, I like that guy. Is he near Atlanta? Burma

[Windwalker in reply to Hidden]

Not near Atlanta.... My RLS dominates my life, except a few hours in the morning. I take a load of things trying to sleep and get 3 or 4 hours before I am up walking the floor again. There won't be a good med in my lifetime. I am 80, soon to be 81. My neurologist is afraid I will become addicted to Opiates, so he limits me by witholding the hard copy of my prescription. I limit myself so I don't run out, but I don't care if I get addicted to opiates or the other addictive meds I take. If I were younger i would probably be concerned about it, but my goal is to be as comfortable as possible and nothing more. There are no cures and indeed there are no really good treatments available.

[Hidden in reply to Hidden]

Hi Windwalker. Have a new user name irina1975. Take care Burma

[Joolsg]

Thanks Cobblers,

Ropinirole at very low dose can be a godsend. Just don't increase the dose without looking up augmentation on here.

A lot of us enjoyed years of RLS free days and nights on ropinirole until we developed augmentation and had to get off it ( which is hellish).

Really pleased you're getting relief and may it continue for many years.

[Smiler53]

Hi Cobblers147,

Please do take note of joolsg and Madlegs1. Their advice is spot on and are so knowledgeable about RLS and medication etc. Wishing you all the best. Smiler x

[Christene in reply to Smiler53]

Hearing the advice, loud and clear, only been on the .5's for four weeks, started a new pack last night. I'll be having a discussion with my GP at my next prescription.

Are you saying Ropinirole isn't safe in any dosage?

[Smiler53 in reply to Christene]

No, not at all. The lower the better. But when you have to keep increasing the dosage you get augmentation (meds increase rls) Have a look at the info on the website about medications and augmentation. X

[Christene in reply to Smiler53]

Good, the .5 is working well for me. But am considering asking to go back to .25, on the basis of I can take two if I start to struggle again.

Have printed some documents off to discuss with GP, as I said earlier, he had a vested interest as he's a fellow sufferer.

Thanks to you all for your help, support, and guidance. Knowledge is invaluable when shared this way.

[LoisTonya]

Hi Cobblers,

About 6 years ago I also started on .25 Ropinerole , then, as you have, increased to .5. Now I'm on 1.25 mg and the side effects of loss of balance, general exhaustion have kicked in. Every so often I reduce to 1 mg again and my brain becomes more alert but when rls gets worse I increase again. Trying hard not to go any higher IN SPITE OF THE NEUROLOGIST TELLING ME I CAN GO TO 4mg

[lorrinet]

Has your GP not suggested opiates? They have literally saved my life and although not working so well now, I've had about 14 years of restful nights with them, and I'm still managing.

[Christene in reply to lorrinet]

Had opiates before, for depression,but my recollection is that they didn't help my RLS.

I'm sticking with the Ropinirole at .5, unless I can get back to .25 again.

Am also going to do some research into magnetic mattress toppers too, though I'm not sure it's a solution for me, I do a lot of touring, and pills are a lot more portable... 🙄

[Hidden]

It's exhilarating isn't it, when you first find a med that gives you the peace we all crave. Congrats and good luck

[Retren]

Windwalker I am 81 and was on dilaudid for many years without any problems in the last few years have tried everything imaginable without success finally take tramadol and hope it continues to treat the dreaded lurgy I feel at my age what does addiction matter we all presumably handle our medications responsibly although dealing with this condition would try a saint.