Which one should I choose?

[ookla]

So, it turns out that the amitriptyline was making my legs worse after all (but made the itching stop, oh well). The doctor's next suggestions are sinimet (which I don't want to do because I had bad experiences with the other dopamine agonists), carbamazepine, propranolol, or oxycodone. Anyone have any experience with any of them? Have any thoughts, feelings, suggestions, or recommendations? Which one should I try next?

[RLS247]

Personally, I'd ask about methadone over the oxycodon. But I've never tried the oxy. I've heard it's addictive an must be taken multiple times per day but I could be wrong. Methadone works very well and (at least for me) doesn't give me a buzz so I can work easily

[ookla in reply to RLS247]

I tried methadone. I didn't feel much from it, but got a slew of bad side effects.

[Pete-1]

Sinemet is Levodopa and carbidopa and is not a Dopamine agonist. It is naturally occurring substance that is found in the brain . It exists as part of a chain of reactions leading to the production of Dopamine. If Dopamine i taken orally it is unable to pass through the "blood / brain barrier" so Levodopa is administered instead which will cross that barrier. The carbidopa helps prevent the Levodopa being absorbed into body tissue before it gets to the brain thus allowing smaller doses of Levopdpa which tends to make people feel sick, The name Sinemet is made from Sin = without, emet from emetic = as in made to vomit. Hence Sinemet "without vomiting". The brain may then complete the manufacture of the missing Dopamine. Carbidopa is eliminated via urine without taking any further action.That is how it is seen from a PD perspective anyway.

[ookla in reply to Pete-1]

Regardless of what it is, I've read that the two main problems with it are rebound and augmentation, just like the DAs. So I think I should steer clear of all of the meds for Parkinson's.

[Pete-1 in reply to ookla]

Yes, sounds like a good idea and in any case from a PD point of view it takes quite a while for a DA to start working. I don't know if that would be true about RLS. All I know is that if I try and wean myself off the DA (Pramipexole), my RLS goes bonkers with twinges in both arms and legs every 15 seconds or thereabouts.

[ookla in reply to Pete-1]

I had that same problem when I came off the DAs... was really surprising to feel all the same leg symptoms in my arms!!! It was pure hell, I felt like a fish on a hook, flopping my legs and arms all around for hours. But 30 minutes after taking tramadol, it all washed away and I finally fell asleep. I think it took 3 days on tramadol for the augmentation/rebound to go away. If you ever need to get off pramipexole, I strongly suggest having some tramadol on hand.

[cicek]

Hi Ookla. I tried amytriptiline which I too found out later made the symptoms worse. I was on propanalol for many years before my RLS was diagnosed to that too obviously didn't help. I am fortunate and can tolerate Roprinirole but have now had to resort to 3.5 Zoplicone at night. Of course I still get "breakthrough" bouts of RLS as do many people but the whole situation is more bearable. No-one will have the answer for you personally I'm afraid because what suits one person doesn't suit another. (You will find that comment on this forum from lots of members). If you are in the UK (as I am) you will not get the choice of everything that can possibly be obtained in the states. Hope you find something to suit you. Good luck.

[ookla in reply to cicek]

I'm a bit skeptical of the propanalol suggestion, I haven't seen that mentioned anywhere in connection to treating RLS... plus, as a blood pressure med, I assume sexual dysfunction would come with it and I really don't want that. Glad to hear ropinirole is working for you, hope that keeps up for a long time.

[nightdancer in reply to ookla]

Propranalol is a blood pressure md that I take and I can categorically state that it has never helped MY RLS. It is not recommended for treating RLS. It was 'thought" years ago, but no more than that.

[Hidden]

Ookla have you looked those meds up...?? Sinemet, isnt used so much these days for RLS, as it causes augmentation quicker than the dopamine agonists. Carbamazepine, is a anti convulsion med. and Oxycodone is a narcotic. I havent used any of them, so cant give an answer on how they would work, if they would work etc etc. and which one you should try. Apart from skipping on the oxycodone, as narcotics are not a good idea for you with your history of apnea..

[ookla in reply to Hidden]

I knew I could count on you for a response. Yes, I've spent hours looking them up, but wanted to see if I could get any feedback from people I trust. I'm definitely not going to take the Sinemet because of what you just said - I had bad experiences with rebound and augmentation with the DAs, so I'm staying away from all of the Parkinson's meds now. As for the carbamazepine, I would have considered it, but I've read that you need to take regular cbc tests and other monitoring tests to make sure it's ok to keep taking it... that's enough to scare me away, no thank you (if something you're on requires monitoring other things to make sure it's ok, I'll pass - don't want to trade one problem for another). So that leaves me with the oxycodone. The sleep apnea is a concern, but that's not something I normally have - that was a side effect from being on 200 mg (100 mg twice a day) of tramadol for 6 months... once I stopped taking tramadol, the apnea went away. And I didn't get apnea from the codeine sulfate (although I wasn't on it for very long), so maybe that side effect is just with tramadol? Anyway, enough about me, how are you doing?

[Hidden]

I am glad you looked them up, lots of people dont look to see what they have been given, altho they should ask before they leave the doctor's surgery. I always used to look up any new meds i was given, i LIKE to be prepared for any side effects i MIGHT get. Maybe the oxycodone could work, without the apnea appearing, only by using it would you know. It is quite a strong narcotic. I am doing as good as anyone else i guess. Still get side effects from the Pamipexole. I cant win, so just plod on...

[ookla in reply to Hidden]

Side effects is the first thing I look up. It's too bad we have to rely on meds for other things and they can't just come up with RLS-specific meds. We need someone really famous to come out with RLS.

[Hidden in reply to ookla]

I have always said that, we dont have any meds just for RLS.

[Hidden in reply to Hidden]

It is because we all are so different and have different sympthomes and react so different. RLS is a syndrome.

[Hidden]

My experience from morphine is very good, but because my ileo ostomy I had some problems with the pills so I now have a spinal morphine pump. Before I got the pump I tried with Metadonthat nearly killed me, it was terrible.