Hi, I am new to this site - have read it zillions of times but this is the first time I'm posting. Have had SEVERE restless legs for over 7 years now of which I treated with narcotics - vicoden - alternating with ultram - which they argue if it's a narcotic or not. Have tried mirapex, siminet, prosac, wellbutrin, effexor, neurotin, elavil (one neuro insists this works - others say absolutely not!), valium, ativan, oxycontin (went off that one after all of the news of drugstores being robbed), quinnine, paxil, b vitamin, e vitamin, iron, diet alterations and many forms of exercise.
I don't like the idea of staying on the narcotics - as the breaks you need from them are brutal to go through and am trying desperatly to find a drug that will stop the restless legs/arms that I have not only in the night but the day as well. I'm not that old either - 43 - and I don't see how on earth I'm suppose to stay with just a narcotic all the rest of my days!
Unfortunately several doctors you have listed on this site for Pennsylvania are no longer treating restless legs but I have been to 3 others now (2 are listed here that do)...it is very frustrating to hear dopamine, dopamine, dopamine enhancers, neurotin, siminet - they sound like a broken record - find one that you can "life with" the side effects!!! What a cop out!!! All say vicoden and other narcotics are very effective but are a last resort - I beg to differ...
Hasn't anyone taken a good look at posts from RL suffers (I've seen these on other sites) that state Ritalin works, Adderall works and there is alot of information online that notes Pediatric doctors have found that Ritalin works for children with "growing pains" aka RLS.
I got ONE neurologist (not listed on this site) to let me try Provigil (a MILDER stimulant approved for narcolepsy - but a stimulant all the same) and it was like a light when on in my life....I was able to cut back the narcotics - where they used to work for only 3 hour spans, they now work for 6 to 8.
While taking this the restless legs remain quiet during these times when I know the vicoden would not hold them this long - I've also been able to sleep soundly because it works the same at enhancing the vicoden dosage at night. But when I tried to cut vicoden out completely the provigil did not stop an "episode" form stopping like a vicoden can....yet I cannot deny the fact that provigil has to be doing something quite substantial!
I've seen numerous posts on other restless leg sites that state Ritalin and Adderall can stop the sensation as quickly as vicoden.
I'd like to know if anyone has an opinion on this other classification of drugs???
With the success I've had with the provigil - I'm wondering if maybe this is another direction we can go in for a treatment for those of us who feel like we've been battered by DA's, Benzos, and Anti Seisure meds (excuse spelling here please!)
I resent the adds now for requip - and restless legs - like it's a miracle cure!!! What a joke!! All doctors are in agreement we've got no one certain cure - why then are we beating the same old drugs (one version or another of them) into the ground???
I found it so frustrating to go to people who are suppose to be on the cutting edge of treatments for this condition and find that although they prescribe so many DA's - as an "off label use" - they will not try any "off label" uses for other drugs that may just give someone like me - and I'm sure many others out there a little HOPE for a change!
Thank you for letting me vent - and if anyone has any imput on this I would love to hear what you have to say!!!
Annie2
provigil, ritalin, adderall and restless legs???
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ViewsAskew
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Hi Annie2,
I thought I vaguely remembered something about these drugs, so I did a little research.
Here's a post I copied from www.rlshelp.org.:
"Adderall, like most potent stimulants (amphetamines and Ritalin) generally worsen RLS and PLMD. Provigil, which is a stimulant also but does not have the side effects of the older more potent amphetamines does not seem to cause this problem. There have been no studies on this problem but this is my general impression from managing many RLS patients with these problems."
Dr B, who wrote this, is one of the most up to date people in RLS literature. He's on the Foundation's board of directors. I'm not impying that he can't be wrong, just that he has access to a bunch of patients and abstracts that we don't!
If you have any research that shows a connection, we'd love to hear of it! Although many people do find effective treatment, many of the people that post here don't.
Per Provigil, as I understand it, it's used to help you feel refreshed and awake even when you don't sleep well and aren't very refreshed! Again, I haven't heard anyone say that it actually relieves the RLS itself. But we are so different. That's the major problem with this disorder. None of these drugs were created for it. So, they have different effectivenss ratings on those who take them. Works for some, not for others. Maybe this just happens to be something that works for you, but not a lot of others. I say, if it works, do it! Just don't assume it will work for everyone else.
Per the doctors on the list, please send an email to the Foundation. To my knowledge, they do not read the board. Those of us here are just other people with RLS and/or PLMD. It would be good for them to hear from people that the doctor info is out of date or incorrect.
Hope you stay and post more.
Ann
I thought I vaguely remembered something about these drugs, so I did a little research.
Here's a post I copied from www.rlshelp.org.:
"Adderall, like most potent stimulants (amphetamines and Ritalin) generally worsen RLS and PLMD. Provigil, which is a stimulant also but does not have the side effects of the older more potent amphetamines does not seem to cause this problem. There have been no studies on this problem but this is my general impression from managing many RLS patients with these problems."
Dr B, who wrote this, is one of the most up to date people in RLS literature. He's on the Foundation's board of directors. I'm not impying that he can't be wrong, just that he has access to a bunch of patients and abstracts that we don't!
If you have any research that shows a connection, we'd love to hear of it! Although many people do find effective treatment, many of the people that post here don't.
Per Provigil, as I understand it, it's used to help you feel refreshed and awake even when you don't sleep well and aren't very refreshed! Again, I haven't heard anyone say that it actually relieves the RLS itself. But we are so different. That's the major problem with this disorder. None of these drugs were created for it. So, they have different effectivenss ratings on those who take them. Works for some, not for others. Maybe this just happens to be something that works for you, but not a lot of others. I say, if it works, do it! Just don't assume it will work for everyone else.
Per the doctors on the list, please send an email to the Foundation. To my knowledge, they do not read the board. Those of us here are just other people with RLS and/or PLMD. It would be good for them to hear from people that the doctor info is out of date or incorrect.
Hope you stay and post more.
Ann
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NoSleepForMe
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Adderall has been a miracle drug for my RLS
I'm actually suprised to hear that stimulants used to treat ADHD has made some people with RLS suffer more.
I've had RLS since childhood, I can't remember when it started been so long now.
I was always told by my grandmother it was growing pains. I remember feeling so helpless growing up that I would get up and walk out of class because sitting was so hard to do.
I remember thinking "if only I could stand up and do my work".
I ended up dropping out of school when I was 14, never even stepped foot inside a 7th grade class.
I was one of those people who wanted to stay up all night and sleep all day, all because of my legs, but being untreated then and still today being untreated I didn't know what I had wasnt growing pains.
I finally sought help a little over a year ago for something else I knew I had, ADHD.
Went to one psychiatrist who wanted to label me as bipolar after a 20 minute conversation I think his reasoning for that was because of me telling him I would stay up all night a lot and couldnt think straight.
I went to a university and spent all day there, test after test. About two weeks later I recieved my diagnosis, ADHD.
Finally!!
I took my results to my local Doctor who prescribed me Stratterra, a non stimulant medicine... my legs got worse...I did some research on the feeling I get in my legs when I came across a few articles that link ADHD and restless leg syndrome.
After a month trial of using Strattera and it not working for my ADHD symptoms and making me sleepy all the time my Doctor (who isn't very knowledgeable in the treatment of ADHD) put me on Adderall, however a dose meant for a child's starting dose. 10mg extended release.
The first day I took it I noticed I was able to sit down and watch a T.V. show, my legs didn't bother me as much.
But that wore off in about two days.
On my next D.R's appointment about a month later I explained to her the Adderall wasn't working, that it only worked for a couple of days, she was going to take me off of it, luckily I came prepared, I had researched the doses, and I had my own knowledge of how to treat ADHD using stimulant and non-stimulant medication.
She agreed to not take it away but up the dose to 20 mg and we would work our way up to 40 mg in the next few months.
The 20 mg completely took away my RLS, I went from being a night person to a morning person. I slept for the first time in my life I was able to lay down at night and go to sleep.
I owed it all to a stimulant medication.
For me a miracle drug in two aspects, my ADHD and my RLS.
But now I need to fast foward to a few months back, I was having what I thought to arthritis pains, that's the only thing I could think of it being related to, on some days I could not even button my shirt.
I had popping sounds in my neck and upper back that just weren't normal for me, and to top it off I began having what I thought to be seizures.
I've had what I call "jerks" all my life, but they weren't that bad and never we're noticed by others, then over the past few months they progressed, and one day completely took over upper body.
Sometimes it'll just be my arms that jerk, sometimes my head will jerk, and sometimes all three at the same time.
I thought perhaps my Adderall was causing it and stopped taking them, flushed them down the toilet.
Went to two different hospitals, the first hospital I was told it sounded like a pinched nerve, that ticked me off so bad I walked out. I was so scared of being misdiagnosed and never finding out my problem.
The next day I went to another hospital and refused to leave until I got an MRI or a catscan.
They did a catscan on my brain and Xrays on my back.
Told me they couldn't find anything and reffered me to a neurologist.
Well, I finally got what I sought after, an MRI, but he did something unusual, intead of doing it just on my brain, he did it on the cervical area of my back also.
About a week later I called (after being in bed for 3 days straight with what I thought was a headache that radiated to my neck)
3 herniated disks holy s*** was my reply!!! LOL
I was relieved to find out my Adderal wasn't the cause of my problems, because that medicine has helped me in more ways than I can explain..
Anyway (sorry to ramble) my neuro put me on Cymbalta for my headaches, which as most know is also an Anti-depressent.
The very first night I took it my RLS came back, hit harder than ever but was ALL over my body. Not just my legs and Arms, I mean in my back, in my chest, my head, EVERYWHERE.
I was UP ALL NIGHT.
And keep in mind I didn't have my adderall, I had flushed it prior.
A couple of days later I went to my regular dr and told her I wanted my medicine back!!!!!
Problem is, even the Adderall can't compete with the Cymbalta, I am on 30 mg XR now, but after being up for almost two days because of pain from my herniated disks, my RLS so severe that I couldn't even sit down for 10 mins, I doubled my Adderall dose one day, still no relief.
I decided, screw this, i'd rather deal with the pain of my disks than to deal with RLS!
I took myself off the Cybalta and my body is almost back to normal. My RLS will go away again once I get that crap out of my system completely.
To make a long story short..... Adderall probably saved the quality of my life. RLS has made it hell for me, has been the source of a lot of problems I had growing up.
I've had RLS since childhood, I can't remember when it started been so long now.
I was always told by my grandmother it was growing pains. I remember feeling so helpless growing up that I would get up and walk out of class because sitting was so hard to do.
I remember thinking "if only I could stand up and do my work".
I ended up dropping out of school when I was 14, never even stepped foot inside a 7th grade class.
I was one of those people who wanted to stay up all night and sleep all day, all because of my legs, but being untreated then and still today being untreated I didn't know what I had wasnt growing pains.
I finally sought help a little over a year ago for something else I knew I had, ADHD.
Went to one psychiatrist who wanted to label me as bipolar after a 20 minute conversation I think his reasoning for that was because of me telling him I would stay up all night a lot and couldnt think straight.
I went to a university and spent all day there, test after test. About two weeks later I recieved my diagnosis, ADHD.
Finally!!
I took my results to my local Doctor who prescribed me Stratterra, a non stimulant medicine... my legs got worse...I did some research on the feeling I get in my legs when I came across a few articles that link ADHD and restless leg syndrome.
After a month trial of using Strattera and it not working for my ADHD symptoms and making me sleepy all the time my Doctor (who isn't very knowledgeable in the treatment of ADHD) put me on Adderall, however a dose meant for a child's starting dose. 10mg extended release.
The first day I took it I noticed I was able to sit down and watch a T.V. show, my legs didn't bother me as much.
But that wore off in about two days.
On my next D.R's appointment about a month later I explained to her the Adderall wasn't working, that it only worked for a couple of days, she was going to take me off of it, luckily I came prepared, I had researched the doses, and I had my own knowledge of how to treat ADHD using stimulant and non-stimulant medication.
She agreed to not take it away but up the dose to 20 mg and we would work our way up to 40 mg in the next few months.
The 20 mg completely took away my RLS, I went from being a night person to a morning person. I slept for the first time in my life I was able to lay down at night and go to sleep.
I owed it all to a stimulant medication.
For me a miracle drug in two aspects, my ADHD and my RLS.
But now I need to fast foward to a few months back, I was having what I thought to arthritis pains, that's the only thing I could think of it being related to, on some days I could not even button my shirt.
I had popping sounds in my neck and upper back that just weren't normal for me, and to top it off I began having what I thought to be seizures.
I've had what I call "jerks" all my life, but they weren't that bad and never we're noticed by others, then over the past few months they progressed, and one day completely took over upper body.
Sometimes it'll just be my arms that jerk, sometimes my head will jerk, and sometimes all three at the same time.
I thought perhaps my Adderall was causing it and stopped taking them, flushed them down the toilet.
Went to two different hospitals, the first hospital I was told it sounded like a pinched nerve, that ticked me off so bad I walked out. I was so scared of being misdiagnosed and never finding out my problem.
The next day I went to another hospital and refused to leave until I got an MRI or a catscan.
They did a catscan on my brain and Xrays on my back.
Told me they couldn't find anything and reffered me to a neurologist.
Well, I finally got what I sought after, an MRI, but he did something unusual, intead of doing it just on my brain, he did it on the cervical area of my back also.
About a week later I called (after being in bed for 3 days straight with what I thought was a headache that radiated to my neck)
3 herniated disks holy s*** was my reply!!! LOL
I was relieved to find out my Adderal wasn't the cause of my problems, because that medicine has helped me in more ways than I can explain..
Anyway (sorry to ramble) my neuro put me on Cymbalta for my headaches, which as most know is also an Anti-depressent.
The very first night I took it my RLS came back, hit harder than ever but was ALL over my body. Not just my legs and Arms, I mean in my back, in my chest, my head, EVERYWHERE.
I was UP ALL NIGHT.
And keep in mind I didn't have my adderall, I had flushed it prior.
A couple of days later I went to my regular dr and told her I wanted my medicine back!!!!!
Problem is, even the Adderall can't compete with the Cymbalta, I am on 30 mg XR now, but after being up for almost two days because of pain from my herniated disks, my RLS so severe that I couldn't even sit down for 10 mins, I doubled my Adderall dose one day, still no relief.
I decided, screw this, i'd rather deal with the pain of my disks than to deal with RLS!
I took myself off the Cybalta and my body is almost back to normal. My RLS will go away again once I get that crap out of my system completely.
To make a long story short..... Adderall probably saved the quality of my life. RLS has made it hell for me, has been the source of a lot of problems I had growing up.
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ViewsAskew
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Please go to the site I referenced before. Dr B discussed ADs and how most of them make RLS worse.
You're absolutely right about the believed connection between ADD/ADHD in children and RLS. And, it makes sense in a way. Both are issues with dopamine.
ADD/ADHD is another one of those disorders that they used to use drugs developed for other things to treat it. Is that still the case? I know that there are new drugs being used and Ritalin isn't the top choice anymore; what I don't know is if the new drugs were specifically designed for ADD/ADHD.
Now, I know almost zero about this, but here's a hyphothesis. What if RLS is secondary in ADD/ADHD, like pregnancy, Parkinson's, kidney failure, etc. If it is secondary, it would make complete sense that taking something for the primary problem, ADHD, would make the RLS go away. It would still make sense that a drug like Cymbalta, which probably beefs up serotonin, would make it worse - it worse on increasing a different neurotransmitter and the dopamine is decreased.
Of course, I'm really just spouting off some random theory that has little basis in scientific reality! It just seems sort of logical. OK, my turn to stop rambling
Please go to the www.rlshelp.org site. He talks about all the anti-depressants. You might find something there you can take and that might help resolve the problem for you.
Ann
You're absolutely right about the believed connection between ADD/ADHD in children and RLS. And, it makes sense in a way. Both are issues with dopamine.
ADD/ADHD is another one of those disorders that they used to use drugs developed for other things to treat it. Is that still the case? I know that there are new drugs being used and Ritalin isn't the top choice anymore; what I don't know is if the new drugs were specifically designed for ADD/ADHD.
Now, I know almost zero about this, but here's a hyphothesis. What if RLS is secondary in ADD/ADHD, like pregnancy, Parkinson's, kidney failure, etc. If it is secondary, it would make complete sense that taking something for the primary problem, ADHD, would make the RLS go away. It would still make sense that a drug like Cymbalta, which probably beefs up serotonin, would make it worse - it worse on increasing a different neurotransmitter and the dopamine is decreased.
Of course, I'm really just spouting off some random theory that has little basis in scientific reality! It just seems sort of logical. OK, my turn to stop rambling
Please go to the www.rlshelp.org site. He talks about all the anti-depressants. You might find something there you can take and that might help resolve the problem for you.
Ann
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Guest
newcomer stimulants migrane meds
I'm new to this site. I have had rls since i was a teenager but i was diagnosed 3 years ago. It took a year to figure me out not only did i have rls I also have a type of narcolepsy. At night i take clonopin and elavil.I am out like a light. But during the day i take concerta to stay awake. I did not know how it felt to have a solid nights rest and not get tired during the day. I almost got divorced because of rls that was before i sought help.I was rude lazy depressed stay at home mom with an adhd child talk about not getting sleep. I thought i needed the looney bin thank god the gyno finally listned to me and sent me for a sleep test. Actually i had to do 2 tests a night test and a nap test. Talk about no sleep the ambien they gave me knocked me out for 2 hours then i was wide awake.
well gotta get the kids to bed and me to
to tired
well gotta get the kids to bed and me to
to tired
I take Provigil for Narcolepsy and also have RLS. While I don't think the Provigil makes my RLS worse, it definitely doesn't make it "go away" either. I still get the sensations when relaxing or sitting still.
I have noticed that being more awake and alert has lessened it to a degree, which is beneficial, and there are days that are better than others.
I have noticed that being more awake and alert has lessened it to a degree, which is beneficial, and there are days that are better than others.