I have been using Mirapex for about 9 months. I supplemented it with the ammino acid tyrosine and the enzyme Gutamine - because both helped my legs from hurting. However, I got tired of the upset stomach, even with the very small amount that I was taking.
Last month my Neurologist gave me a prescript for Clonazepam. I had told him that I feel nervous in the evenings because of stress and that the more nervous I was the worse my RLS. Apparently Clonazepam is a tranquilizer and muscle relaxer. I am taking .25 in the evening and it is working really well.
My question is: I would like to find a neuologist or specialist who could help me understand, based on the experiences that I have had with both supplements and pharma drugs - what is the root cause of my own RLS? I mean, I thought it was all about dopamine and I was going to great lengths to get enough dopamine in my system...but it was not stopping my RLS to my own satisfaction.
So, if Clonazepam is working better, does that indicate that my RLS is stemming from anxiety and or subtle panic/muscle restrictions, and not a lack of dopamine. If my RLS is stemming from an anxiety related problem, then clearly I want to continue to research what that is about.
Can anyone else tell me if they have tried to understand their own RLS by what drugs have worked for them?
Sherry
Clonazepam
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ViewsAskew
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Sherry, I'll share the little I know.
RLS is a combination of several things they know (and some things they still don't know). That's part of the problem. Until they really know exactly how it manifests, we can't know why things work.
What we do know is that is involves iron and dopamine. But, dopamine is hard to "make" through other sources because many things do not cross the blood/brain barrier. Iron is also a tough one because we can't get it to get into the substantia nigra.
So, we know brain chemistry and the substantia nigra is involved. Most recently, the dopaminergic system in a little-studied area of the spine was implicated. This may be why people with back issues all of the sudden "get" RLS out of the blue.
We also know that other categories of drugs help some people. Opioids, benzodiazepines and antiseizure meds. What these all have in common is that they all affect brain chemistry somehow. We also know that the drugs that make RLS worse also affect brain chemistry - obviously in the wrong way.
So, stuff is going on that we still just don't know about. The benzos, like the Clonazepam, help some people, but not the majority. The assumption at this time is that they prevent the body from reacting to the feeling, not that they stop the feeling from occuring. Same with the PLMs at night - they still happen while a person is sleeping, but the benzo keeps them from waking up in reaction to it. But, it seems to me that it may also affect the brain chemistry in a way that helps the dopamine. I was shocked to find out that for many of the drugs that affect brain chemistry, that they have no idea of how they work! They guess!
I think many of us would love to know why what we take works, but we just are missing too much information at this time. Many of us would also love to take fewer drugs - if any. Again, it's just not possible for some of us.
I do hope your doc did tell you that clonazapam can cause extreme physical dependence in some people. While about 50% of people taking it have little or no difficulty stopping it, the other 50% can have a very hard time. As I was one of them, and wasn't expecting it, I can attest to how difficult it can be. It took me longer to stop taking it (reducing it by tiny quantities each week so I wouldn't get violently ill) that I actually used it for symptoms. Since you have been very concerned about what you are taking and it's side effects, I wanted you to know this in case you didn't. Your dose is extremely low, which is good. It also means that the chances are much greater that you will not have any problems.
RLS is a combination of several things they know (and some things they still don't know). That's part of the problem. Until they really know exactly how it manifests, we can't know why things work.
What we do know is that is involves iron and dopamine. But, dopamine is hard to "make" through other sources because many things do not cross the blood/brain barrier. Iron is also a tough one because we can't get it to get into the substantia nigra.
So, we know brain chemistry and the substantia nigra is involved. Most recently, the dopaminergic system in a little-studied area of the spine was implicated. This may be why people with back issues all of the sudden "get" RLS out of the blue.
We also know that other categories of drugs help some people. Opioids, benzodiazepines and antiseizure meds. What these all have in common is that they all affect brain chemistry somehow. We also know that the drugs that make RLS worse also affect brain chemistry - obviously in the wrong way.
So, stuff is going on that we still just don't know about. The benzos, like the Clonazepam, help some people, but not the majority. The assumption at this time is that they prevent the body from reacting to the feeling, not that they stop the feeling from occuring. Same with the PLMs at night - they still happen while a person is sleeping, but the benzo keeps them from waking up in reaction to it. But, it seems to me that it may also affect the brain chemistry in a way that helps the dopamine. I was shocked to find out that for many of the drugs that affect brain chemistry, that they have no idea of how they work! They guess!
I think many of us would love to know why what we take works, but we just are missing too much information at this time. Many of us would also love to take fewer drugs - if any. Again, it's just not possible for some of us.
I do hope your doc did tell you that clonazapam can cause extreme physical dependence in some people. While about 50% of people taking it have little or no difficulty stopping it, the other 50% can have a very hard time. As I was one of them, and wasn't expecting it, I can attest to how difficult it can be. It took me longer to stop taking it (reducing it by tiny quantities each week so I wouldn't get violently ill) that I actually used it for symptoms. Since you have been very concerned about what you are taking and it's side effects, I wanted you to know this in case you didn't. Your dose is extremely low, which is good. It also means that the chances are much greater that you will not have any problems.
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.
Ann's response was very well put but I also want to add here that drugs, in general, are often used not just for "treatment" but for "palliation"... which, is what I think you're referring to, Sherry? While dopamine agonists do help "treat" any dopamine-deficient condition you have, a benzodiazepine might help lessen your body's perception of such pain. Like you, I couldn't tolerate the DAs either, so rather then focus on "treatment", I have accepted that narcotics help lessen my perception of the pain and I'm happy with that. My oxycontin may treat my RLS, it may not, but I do know it makes my legs feel better and I can sleep. I think it's a matter of semantics more then anything? I am not thinking as clearly today as usual.... I hope this isn't confusing!
Josh
Thank you Josh and Ann for your information and perspectives. I am always searching for the root cause of my own RLS. Some interesting examples of RLS causes are from people that I know. For example, I had one doctor who had RLS because he had surgery on his knee and they accidentally cut a nerve ending. He taught me a great deal about RLS. So he has RLS in that one leg, and it is true RLS with all the typical symtoms. And, I have another doctor who used to have RLS - also full sypmtoms and she had a kidney transplant and the RLS stopped.
So, I am approaching my own RLS with the idea that RLS can be highly individual as to why I have it, and while experts don't know alot about what is happening, that should be no barrier to what I am able to learn about my own body. I did have some rather extreme experiences in childhood where I felt fear and it intensified in my lower back. I am suggesting that I may have a small area in my back that is cutting off the clear brain connection and the result could be my RLS. Which could indicate that no amount of dopamine is going to help my RLS.
So, I am using all my experiences with supplements and drugs as an avenue to understand what might be my own root cause. I actually believe that if I can get entirely clear about this, I may be able to be heal the issue....
There is alot I do not know about drug theories and both of you helped fill in some of the blanks!
Sherry
So, I am approaching my own RLS with the idea that RLS can be highly individual as to why I have it, and while experts don't know alot about what is happening, that should be no barrier to what I am able to learn about my own body. I did have some rather extreme experiences in childhood where I felt fear and it intensified in my lower back. I am suggesting that I may have a small area in my back that is cutting off the clear brain connection and the result could be my RLS. Which could indicate that no amount of dopamine is going to help my RLS.
So, I am using all my experiences with supplements and drugs as an avenue to understand what might be my own root cause. I actually believe that if I can get entirely clear about this, I may be able to be heal the issue....
There is alot I do not know about drug theories and both of you helped fill in some of the blanks!
Sherry
Also,
Josh your comments on these drugs was helpful and not at all confusing!
I know just what you mean, it is nice to find something that will work.
Ann thanks for the chemical dependence warning on Clonazepan. I have been so relieved that I have something that is working I haven't been giving so much thought to side effects. It sounds like it did not work well for you and that getting off of it was hard. Right now I am taking .25 a day and I am mostly watching out for any signs of foggy headedness in the mornings. It's been about 4 weeks and so far it has been fine.
I also saw an entry on the non-pharm discussion board about Gaba 750, I thought I would eventually look into some alternatives for Clonazepan, just in case other supplements would have similar effects.
Sherry
Josh your comments on these drugs was helpful and not at all confusing!
I know just what you mean, it is nice to find something that will work.
Ann thanks for the chemical dependence warning on Clonazepan. I have been so relieved that I have something that is working I haven't been giving so much thought to side effects. It sounds like it did not work well for you and that getting off of it was hard. Right now I am taking .25 a day and I am mostly watching out for any signs of foggy headedness in the mornings. It's been about 4 weeks and so far it has been fine.
I also saw an entry on the non-pharm discussion board about Gaba 750, I thought I would eventually look into some alternatives for Clonazepan, just in case other supplements would have similar effects.
Sherry