Hi everyone, I have had RLS for a long time. I first started taking klonopin. But after many years of taking it and being drowsy during the day I needed something else. The doctor has put me on Sinemet. I have been on it for about 6 months. But it is not working very well. I still have nights of walking the floor and days of getting up from my desk and walking around. Do any of you recommend something else to try. By the way, I also have RA and OA but the pain from the RLS is by far the worst.
Thanks for your help.
Medications
Dear nanawal -
{{{{{BIG HUG}}}} RLS is a never ending journey of discovery - you have come to the right place. There are many wise and insightful individuals who have contributed to this message board. There are new drugs like Requip that may be helpful. If you haven't please visit the New to RLS??? section, here you will find information regarding RLS treatments.
http://www.rls.org/phpBB2/viewtopic.php?t=94
Others will have more information and direction. I just wanted to let you know you are not alone. It has been especially helpful to me to come here for advice when my brain was so tired from dealing with the physical aspects of RLS. Many times just reading the information and posts helps quiet my restless mind and brings some sense of direction for dealing with medical professionals and others in my search for RLS relief.
*******Positive Energy*********
Hazel
{{{{{BIG HUG}}}} RLS is a never ending journey of discovery - you have come to the right place. There are many wise and insightful individuals who have contributed to this message board. There are new drugs like Requip that may be helpful. If you haven't please visit the New to RLS??? section, here you will find information regarding RLS treatments.
http://www.rls.org/phpBB2/viewtopic.php?t=94
Others will have more information and direction. I just wanted to let you know you are not alone. It has been especially helpful to me to come here for advice when my brain was so tired from dealing with the physical aspects of RLS. Many times just reading the information and posts helps quiet my restless mind and brings some sense of direction for dealing with medical professionals and others in my search for RLS relief.
*******Positive Energy*********
Hazel
Hi nanawal,
Sorry to hear of your frustrations - I, too was on Klonopin and then put on Sinemet. We had to turn my dosage up to 25/250 from 25/100 for (hopefully) long term relief. My doc has metioned Requip, but not unless the 25/250 variety of Sinemet no longer helps.
Perhaps Requip may work for you? What does your doc think of the Sinemet no longer working? My brain is failing at other drugs besides Requip to try. I can offer you hugs, though; it's frustrating when something that has been working stops.
*hugs*
Sorry to hear of your frustrations - I, too was on Klonopin and then put on Sinemet. We had to turn my dosage up to 25/250 from 25/100 for (hopefully) long term relief. My doc has metioned Requip, but not unless the 25/250 variety of Sinemet no longer helps.
Perhaps Requip may work for you? What does your doc think of the Sinemet no longer working? My brain is failing at other drugs besides Requip to try. I can offer you hugs, though; it's frustrating when something that has been working stops.
*hugs*
Diagnosed RLS in February 2005.
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Butterfoot
- Posts: 43
- Joined: Fri Apr 15, 2005 3:11 am
- Location: Kissimmee, FL
- Contact:
Sinemet
Hi nanawal,
The meds-go-round can get you confused and frustrated, can't it? From what I've heard, read and experienced, becoming tolerant to some meds and having to change after a few weeks/month/years is just the norm. Sinemet is one that gets mentioned here often as one that causes augmentation and rebound after a short time of use....the RLS symptoms come earlier in the day and worse than before, and you end up having to up the dosage until it doesn't work at all. I believe I read that as many as 80% of ppl who use Sinemet end up with this problem. Ksxroads is right, if you look on the sticky notes in the "New to RLS" section, you'll find a list of different medications that relieve the symptoms of RLS. Unfortunately, there are a lot, and what works for one person, doesn't work for another, and some experience side effects that are intolerable. So, you may have to experiment some before you find what works best for you. Quite a few of us have a "cocktail" of meds. Currently, I'm on Sinemet and Permax at bedtime. I also have pain medication which I take in early to mid evening which I think helps the most. I'm getting ready to go to doc to quit the Sinemet altogether as I think I'm beginning to experience augmentation.
It may take awhile to find the right one(s) for you, but keep with it and don't give up. If your doctor doesn't have the list of meds that are helpful, you might want to print them off and take with you to your next appt.
And never feel you're alone in this. Everyone here is on the same wavelength, most have gone through just what you're going through now and all are willing to listen, a lot will give their insights from their own experiences to help you. I'd be nuts if I didn't have this board to log onto on those frustrating and painful nights when nothing seems to work.
Hang in there....hope you soon have peaceful days and restful nights.
Margot
The meds-go-round can get you confused and frustrated, can't it? From what I've heard, read and experienced, becoming tolerant to some meds and having to change after a few weeks/month/years is just the norm. Sinemet is one that gets mentioned here often as one that causes augmentation and rebound after a short time of use....the RLS symptoms come earlier in the day and worse than before, and you end up having to up the dosage until it doesn't work at all. I believe I read that as many as 80% of ppl who use Sinemet end up with this problem. Ksxroads is right, if you look on the sticky notes in the "New to RLS" section, you'll find a list of different medications that relieve the symptoms of RLS. Unfortunately, there are a lot, and what works for one person, doesn't work for another, and some experience side effects that are intolerable. So, you may have to experiment some before you find what works best for you. Quite a few of us have a "cocktail" of meds. Currently, I'm on Sinemet and Permax at bedtime. I also have pain medication which I take in early to mid evening which I think helps the most. I'm getting ready to go to doc to quit the Sinemet altogether as I think I'm beginning to experience augmentation.
It may take awhile to find the right one(s) for you, but keep with it and don't give up. If your doctor doesn't have the list of meds that are helpful, you might want to print them off and take with you to your next appt.
And never feel you're alone in this. Everyone here is on the same wavelength, most have gone through just what you're going through now and all are willing to listen, a lot will give their insights from their own experiences to help you. I'd be nuts if I didn't have this board to log onto on those frustrating and painful nights when nothing seems to work.
Hang in there....hope you soon have peaceful days and restful nights.
Margot
May only good come your way.
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Hi there!
Trial and error. That's what seems to be the norm with this stuff.
I did try Requip. Too much gave me migraines for the whole time I was taking the Requip.
Now, I'm taking 300 mg of Neurontin and (give me some wood to knock on) it's calming things down.
With taking only the 300 mg, I have room to increase once this doesn't work any longer.
Knowledge is power, just always remember that. And if something doesn't work, then you don't have to keep taking it.
Love, Luck and Hugs
Penguin
Trial and error. That's what seems to be the norm with this stuff.
I did try Requip. Too much gave me migraines for the whole time I was taking the Requip.
Now, I'm taking 300 mg of Neurontin and (give me some wood to knock on) it's calming things down.
With taking only the 300 mg, I have room to increase once this doesn't work any longer.
Knowledge is power, just always remember that. And if something doesn't work, then you don't have to keep taking it.
Love, Luck and Hugs
Penguin
Beware the Penguin
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RGOILLY
RLS REQUIP
HELLO. I ALSO HAVE RLS BAD. I SAW MY DR AND SHE GAVE ME REQUIP WHICH I TOOK A HALF A PILL AND THREW THE REST OUT. IM TIRED OF BEING DOWN ALL THE TIME WITH THESE DRUGS THEY GIVE YOU. I WONT TAKE IT. JUST WANT TO SHARE THIS WITH YOU AND HOPE IT HELPS. I AM TAKING A PAIN PILL SO I CAN EXCERCISE DUE TO A SERIOUS FALL. RLS WAS SOOO BAD I TOOK 2 OF MY PAIN PILLS TO SEE IF IT WOULD HELP BECAUSE I COULDNT STAND IT ANYMORE AND HAVE INSOMIA BECAUSE OF IT.
I COULDNT BELIEVE IT BUT IT REALLY REALLY WORKS. I HAVE NOT BEEN AWAKENING OR FELT IT THROUGH THE NIGHT. I SLEEP BETTER AND JUST A MAZING HOW THESE PAIN PILLS WORK. IM GOING TO SEE MY DR THIS WEEK AGAIN TO SPEAK TO HER ABOUT THE RESULTS AND ASK IF SHE WILL INCREASE IT. IT TAKES TWO PILLS FOR IT TO WORK. IM NOT SURE IF I CAN MENTION THE NAME OF THE PAIN PILL OR NOT. ITS 500 MG OF WHAT I TAKE. AND I TAKE IT JUST BEOFRE BEDTIME THATS WHEN ITS THE WORST. THE PAIN PILLS DOES NOT MAKE ME DROWSY DIZZY NOTHING. ONCE I GET TO SLEEP THATS IT. AND FINE THROUGH THE DAY.
JUST TO LET YOU KNOW YOU DO NOT NEED OR HAVE TO HAVE DRUGS OR ANY MEDS THAT MAKE YOU DOWN ALL THE TIME. EVEN THE HEALTH FOOD STORES HAVE AN HERB FOR RLS. IF MY DR WONT INCREASE MY PILLS I WILL GO THE THE HEALTH FOOD STORE AND GET SOMETHING. ALL THE HERBS I HAVE BEEN TAKING DOES THE JOB RIGHT. SO WORTH LOOKING INTO. I SYMPATHIZE WITH YOU. ITS NO FUN BELIEVE ME. I KNOW.[/quote]
I COULDNT BELIEVE IT BUT IT REALLY REALLY WORKS. I HAVE NOT BEEN AWAKENING OR FELT IT THROUGH THE NIGHT. I SLEEP BETTER AND JUST A MAZING HOW THESE PAIN PILLS WORK. IM GOING TO SEE MY DR THIS WEEK AGAIN TO SPEAK TO HER ABOUT THE RESULTS AND ASK IF SHE WILL INCREASE IT. IT TAKES TWO PILLS FOR IT TO WORK. IM NOT SURE IF I CAN MENTION THE NAME OF THE PAIN PILL OR NOT. ITS 500 MG OF WHAT I TAKE. AND I TAKE IT JUST BEOFRE BEDTIME THATS WHEN ITS THE WORST. THE PAIN PILLS DOES NOT MAKE ME DROWSY DIZZY NOTHING. ONCE I GET TO SLEEP THATS IT. AND FINE THROUGH THE DAY.
JUST TO LET YOU KNOW YOU DO NOT NEED OR HAVE TO HAVE DRUGS OR ANY MEDS THAT MAKE YOU DOWN ALL THE TIME. EVEN THE HEALTH FOOD STORES HAVE AN HERB FOR RLS. IF MY DR WONT INCREASE MY PILLS I WILL GO THE THE HEALTH FOOD STORE AND GET SOMETHING. ALL THE HERBS I HAVE BEEN TAKING DOES THE JOB RIGHT. SO WORTH LOOKING INTO. I SYMPATHIZE WITH YOU. ITS NO FUN BELIEVE ME. I KNOW.[/quote]