Newbie
Newbie
new to the site. I'm 50. Had rls since I was 18. Been mostly on mirapex since my 30s Experienced augmentation on mirapex a few years back. Switched to ropinrole. Worked well for a bit but stopped after a few months. Went back to mirapex about a couple years ago Now taking 1.5 and it's not doing the trick. Going to try and ween off. Been reading and getting armed for my doc who says he doesn't know sh** about it yet gets mad at my suggestions Frustrated and tired at this point. Trying a Keto diet which is supposed to be helpful for seizures so might be helpful for rls. I work out 5 days a week. I'm fit. Any advice welcome. Thanks
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Re: Newbie
Welcome to the board. You can find discussions for most of the points that you made here, so take a look around.
Your issue with your doctor is one that is familiar to many of us. Many doctors resist listening to patients whose source of information is the Internet, so you will need to be careful how you feed him/her what you learn. There are a number of brochures available from the WED Foundation website that are sometimes received better than simply stating what you have read. Another suggestion is to buy a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. You can get it from Amazon for about $25. It is written for physicians, but is also understandable by lay persons and describes the latest thinking on the treatment of WED by the experts. Some patients mark sections and then hand the book to the doctor with the question "what is your opinion on this?"
As for the Keto diet, take a look at the discussion at http://bb.rls.org/viewtopic.php?f=20&t=8835&p=74626&hilit=wahl#p74626
Finally, the 1.5mg of mirapex that you are taking is considerably higher than what is currently recommended for the treatment of WED (in the book). As you probably already know, getting off of mirapex can be difficult, especially if your doctor is know knowledgeable and willing to help you get through it.
Good luck!!!
Your issue with your doctor is one that is familiar to many of us. Many doctors resist listening to patients whose source of information is the Internet, so you will need to be careful how you feed him/her what you learn. There are a number of brochures available from the WED Foundation website that are sometimes received better than simply stating what you have read. Another suggestion is to buy a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. You can get it from Amazon for about $25. It is written for physicians, but is also understandable by lay persons and describes the latest thinking on the treatment of WED by the experts. Some patients mark sections and then hand the book to the doctor with the question "what is your opinion on this?"
As for the Keto diet, take a look at the discussion at http://bb.rls.org/viewtopic.php?f=20&t=8835&p=74626&hilit=wahl#p74626
Finally, the 1.5mg of mirapex that you are taking is considerably higher than what is currently recommended for the treatment of WED (in the book). As you probably already know, getting off of mirapex can be difficult, especially if your doctor is know knowledgeable and willing to help you get through it.
Good luck!!!
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Re: Newbie
Thanks for response. Definitely too high a dose. Not looking forward to coming off. I'm trying to delay my first pill to supper. And cut dose by .25 every week. I think I can see my doctor I saw a sleep doc who wrote in a nice way to shut the **** up and listen to me instead of getting all arrogant. Last time he said why don't I give you the script pad. Lol. I said ya great . I'm a bodybuilder so lyrica weight gain worries me. Only drug I take is mirapex. I'm going to arm myself with literature. Since his admission of knowing nothing concedes he needs to learn. I have no problem fighting with him Site looks Awsome. I'll be reading away
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Re: Newbie
Hi Kupkee - there is almost no way you can come off of pramipexole without some assistance. I tried three times.
You may be able to reduce it. But, when you try to stop it, your symptoms are likely to go through the roof. I had NO idea what really bad symptoms were until I tried it. By day 5, I was exhausted, had had NO sleep, and hadn't stopped moving.
Great idea to arm yourself with literature. The book, Clinical Management of Restless legs Syndrome, 2nd edition, has some great advice on how to deal with WED in general and specifically related to meds.
The link in my signature will take you to goo links and general information. Each of the moderators has links in their signature - all of it is worth reading.
Good luck! And, we're here for you.
You may be able to reduce it. But, when you try to stop it, your symptoms are likely to go through the roof. I had NO idea what really bad symptoms were until I tried it. By day 5, I was exhausted, had had NO sleep, and hadn't stopped moving.
Great idea to arm yourself with literature. The book, Clinical Management of Restless legs Syndrome, 2nd edition, has some great advice on how to deal with WED in general and specifically related to meds.
The link in my signature will take you to goo links and general information. Each of the moderators has links in their signature - all of it is worth reading.
Good luck! And, we're here for you.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.