Drs visit

[Artsy]

Ok I tried to stay on the positive side the whole visit with my neurologist. I told him I'm doing so much better on the extended release I can enjoy my life without so many side effects. I ask him if I could get.50 and see if I can take less of it because I'm seeing how much it takes to control this RLS. Well of course they don't have extended release Meripex in .50 so he said ok we will prescribe you 3.5 milligrams 2 a day and that should do it . Well my insurance company would not pay for it even though I'm trying to help myself take lower doses for my own good. Back to the starting block I don't give up. I don't like the regular Meripex but if I have to I will try to use it to go down in milligrams. He ask me do I have a family physician I said well I fired all my Drs and I'm starting over so I'm going to a new one and maybe she will help me with this. The other Drs I had to change didn't have interest in my RLS so this hopefully will be a positive change if I have to have some kind of pain meds to help me at first give them to me. Like I said Drs will put people on meds and when it comes time to try to lower or get off of these they don't have interest to help. I remember reading something someone wrote on this and the side effects are gambling and the lists go on and on that concerns me because that's not good. I have a question when you all were put on this medicine for RLS did they tell you all the side effects and how hard this would be to get off of? Thanks for listening and this group is awesome.

[Madlegs1]

Very few people even know or care about the side effects . Grapefruit juice is an absolute no no for opiates- but neithr my dr or pharmacist knew about it. Same for magnesium and Gabapentin.

One thing one learns from this site is- DO YOUR OWN RESEARCH..

Google- google - google. Until you're googleyed. And then some more.😨😢😩

[Linda_pink in reply to Madlegs1]

One advantage of rls is that you have all night to Google away while the legs are jumping

[Hidden in reply to Madlegs1]

Hi Madlegs.Surfing thru old posts and saw this.I agree with you re research. Wanted to add my 2 cents' worth. If there is one thing I've learned re rls it's DO YOUR OWN RESEARCH INCLUDING WRITING DOWN THE SOURCES and bring to your docs. Most likely you will be more knowledgeable than many of them. They may or may not be interested in learning more about rls but at least you will have some ammunition for involving yourself in a treatment plan that works! Of course there is also the battle to get them to order tests,and try things a different way. We have to stick to our guns and not be dismissed. "The squeaky wheel gets the grease." (LOL-but not really!) And wear them down. They may get so tired of listening they may give in. irina1975

[Pippins2]

No I wasn't told very much about side effects but my GP did tell me it can cause compulsive gambling. I was never told how difficult it would be to get off the Mirapex( Pramipexole ) in fact when I needed to get off it due to augmentation my GP was so ignorant of the withdrawal process that she prescribed me Amitriptyline to "help ".Needless to say the Amitriptyline was the worst possible med and sent my symptoms to a new high. ! Pipps x

[Suckerbeagle in reply to Pippins2]

It can cause compulsive almost anything. About 15% of people on dopamine develop an impulse control disorder (ICD). I also read about the gambling when I first went on dopamine. It seemed so crazy that I forgot about it. Months later and I could not stop myself from going to the all-night store across the street and buying Hostess Fruit Pies. Ridiculous! I never ate this stuff before, but I was unable to stop myself. I thought it was me, that I was weak, no self control etc. I gained 35 pounds. My GP sent me to a wonderful neurologist who specializes in RLS. Right away she told me it wasn't me. A relief to hear, and sure enough as I came off the dopamine this compulsive behavior stopped. I can't ever take dopamine again. But I have Gabapentin and an opioid. It's been 10 years and these two meds are working really well.

There's a lot more awareness now about augmentation but not so much about ICD.