CatoG

[CatoG]

Hello everyone, I am to this post. I have suffered with RLS for over 40 years. I have tried all the usual methods of dealing with it and am presently on ropinole. I take 6 mg a night (not knowing until recently what s high dose that is). I am experiencing abreaction and need to get off it.

I have an appointment with a neurologist in Houston, Tx who specializes in RLS, Dr William Ondo. I know he treats with iron infusions and, apparently, with a low does of methadone.

Does anyone have any experience with either of these treatments?

I am, of course, anxious about both the ropinole withdrawal and with staring a low dose of meth, if that’s what he prescribed.

Can anyone offer their experiences?

Thanks

[Hoffie]

Hello CatoG, I have been on all the usual medications without much success. But last week, my neurologist put me on 5mg methadone and it is working wonderfully. I only get up once during the night to use the rest room and then fall right back to sleep without taking any more medications. So far so good.

[CatoG in reply to Hoffie]

Hoffie,

That is great news. How are you feeling during the day?

[Hoffie in reply to CatoG]

A little tired, but I think that is my normal state now. But I will take that over thrashing around all day and night.

[Joolsg]

Dr Ondo is a well known expert and he will help you get off the poisonous Ropinirole and onto an alternative.

I know there are several US visitors to this site who are on low dose methadone and it has transformed their lives. At low dose, it does not give the "high" and has very few side effects. It is cheap and can be taken for decades.

I am delighted you will be seeing an expert who knows all about RLS and how to treat it. He will prescribe opioids or methadone to get you safely off ropinirole.

[solticeart]

Hi CatoG,

I just made a post about his but I just ran across this for restless legs restiffic.com/products/rest... seems it works for some and I did it with a rolled up sox right behind the meatarsl bone of the big toe and an ace bandage and using slight pressure not a lot. it worked, so maybe read my post called has anyone tried the restiffic foot wraps.

[solticeart]

whoops, I meant to type metatarsal bone ( behind the ball of the foot straight down form the big toe.) can't figure out how to edit that.

[solticeart]

Oh one more thing, Im u=in the USA and the drugs dont work on my and make it worse so I use Kratom and it does work but only 4 hours at a time. It's a leaf off a tree in Indonesia and is sold in online stores. It's very safe and you can't overdose on it, you throw up if you take too much but thats it. If you are in the US and want more info on Kratom message me.

[involuntarydancer]

I have only heard good things about Dr. Ondo and would be very interested to hear how you get on with him. Good luck.

[Parminter]

I have done both, very successfully.

And Doctor Ondo is one of the finest RLS physicians on the planet - do not be afraid!

[CatoG in reply to Parminter]

Thank you, Parminter. Your words offer hope.

[Parminter in reply to CatoG]

There is always hope, Cato, and with Doctor Ondo you are dealing with a man who is at the forefront of RLS research. He does not just read other people's research - he does it.

I envy you, frankly - you will have the Real Thing.

[tweedy66]

Hi.....wow!!! I can relate so well! I also have been on ropinirole for many years ...6 mg as well. Last summer I experienced augmentation and it was horrendous plus I was having both hips replaced...May and July. Being close to Boston I figured there must be someone who could help. Found a Dr. Winkleman....read up on him and decided to try and get an appointment.....this was last August.....he ought to be good as I could not see him until this past April!! He said I should definitely get off ropinirole.....SLOWLY. I am currently down to a little over 2 mg. Knock on wood it hasn't been bad..past few nights I haven't had bad symptoms but enough to leave me with such restless sleep. My primary doctor had also put me on 300 mg lyrica and Dr. Winkleman said that was fine. So that's where I am now...are you familiar with the RLS Foundation?? There's also a Dr. Buchfuhrer in California that you might want to look up.....he's very helpful and one of the best in this field....has written some books as well. Look forward to hearing how things go for you with this insidious condition!!

[Sara_2611]

Hi 40 years?????!!!!! bloody hell!!! Thats the same period of time Ive been horseriding for !!!

Ive had it for a few years which started out when I moved to another town to live with my then partner.& still have RLS now -but just when my feet are hot

I went to my doctor about it who prescribed me with a cream called Balneum Cream which works a treat

I can recommend it to you because it wouldnt be for everyone & could have negative effects on anyone else's skin who decide to use it ' Should you do wish to try it I have to make the other point that you are doing so at your own risk

[byrnzy4]

I went to male clinic in Rochester Minnesota hoping to start on the 5 mg of methadone and they would not prescribe anything because I was out of state. Please check to see if you are seeing them as a patient out of state if they can prescribe.

[byrnzy4]

Mayo clinic

[larryggarner2001]

I'm with the others I've tried most other medications some with disastrous effects adding water of 40 pounds etc. but I've been on methadone for 10 months now and the only side effect that I have experienced is constipation which is small pill from a drugstore solved.

5 mg methadone I found to be the best and cheapest with little side effects.

I wish you well

[CatoG in reply to larryggarner2001]

I read your post and cried with relief. Thank you.

[larryggarner2001 in reply to CatoG]

Hi I went from a all time high in weight of 285 pounds 10 months ago back to my normal weight of 230 pounds which was all water build up which means a lot to me

5 mg of methadone two hours before you go to bed works for me.

Best wishes

Larry in Michigan

[CatoG in reply to larryggarner2001]

I have been feeling so defeated by this damned disease.

[ke34715]

Hello, CatoG! I took Ropinirole for my RLS for 6 years before augmentation made me look and ask for other options. I having to take more ropinirole pills each day, earlier in and throughout the day just to sit through a movie, a class, luncheon, or anything. My sleep specialist here in California, Dr. Mark Buchfuhrer, prescribed me low-dose methadone a few years ago, and it has worked wonders in that I only take 7.5 mg or 1 and a half pills in the evening and have not had any noticeable augmentation. I initially had a lot of nausea until my body adjusted to the methadone. I do have frequent drowsiness during the day, however, but I prefer that to constant pill-taking throughout the day to chase away the RLS, which involves my arms, too, unfortunately. I hope you and your doctor can find a medication that will relieve your symptoms.