I am female and have suffered from RLS for about three years now, ever since I had taken Geodon, which was used to help treat my Bipolar Disorder. I have been off Geodon for two years now but still suffer RLS symptoms, but not as severely now.
Anyhow, I just wanted to introduce myself and get some ideas from others from the list as I browse this forum.
New to the list
Welcome T-j!
So you were prescribed Gideon and that started your RLS symptoms? Possibly that antipsychotic drug decreased the dopamine level in your brain cells?
So Gideon (ziprasidone HCl)is a dopamine antagonist!. No wonder that your symptoms of RLS became worse. You probably heard that dopamine agonists are used to negate the symptoms of RLS?
What are you taking for your RLS now? I would start to use a dopamine agonist such as Mirapex to repair the possible damage caused in the brain cells' dopamine traffic by taking Geodon for a year. Discuss it with your doctor, of course first
Approved in the United States in February of 2001 for the treatment of schizophrenia, Geodon is licensed in 63 countries, and more than 2 million prescriptions have been written worldwide.
Discovered and developed by Pfizer, Geodon is a serotonin and dopamine antagonist. In short-term trials, the most commonly observed side effects associated with Geodon at an incidence of 5 percent and at least twice the rate of placebo were somnolence (14 percent vs. 7 percent), respiratory distress (8 percent vs. 3 percent), and EPS (5 percent vs. 1 percent).
Geodon is contraindicated in patients with a known history of QT prolongation, recent acute myocardial infarction, or uncompensated heart failure, and should not be used with other QT-prolonging drugs. Geodon has a greater capacity to prolong the QTc interval than several antipsychotics. In some drugs, QT prolongation has been associated with torsade de pointes, a potentially fatal arrhythmia. In many cases this would lead to the conclusion that other drugs should be tried first.
Source: www.pfizer.com
So Gideon (ziprasidone HCl)is a dopamine antagonist!. No wonder that your symptoms of RLS became worse. You probably heard that dopamine agonists are used to negate the symptoms of RLS?
What are you taking for your RLS now? I would start to use a dopamine agonist such as Mirapex to repair the possible damage caused in the brain cells' dopamine traffic by taking Geodon for a year. Discuss it with your doctor, of course first
Jumpy Owl
Hello, Sole!
Are you still up or woke up early? I did the latter. Working on a questionnaire as I had some good ideas in my drug-induced dreams. 
I have been following your work and I am amazed at your progress in becoming an RLS expert.! You must be a quick study and also a nice, unselfish person. Your friends discovered that way before I did. I guess I have a lot to learn. I think you give much more than you take and thereby giving all of us a shiny example.
I do not want to get too mushy but I am proud of you, young lady!
A (less sensitive)
I have been following your work and I am amazed at your progress in becoming an RLS expert.! You must be a quick study and also a nice, unselfish person. Your friends discovered that way before I did. I guess I have a lot to learn. I think you give much more than you take and thereby giving all of us a shiny example.
I do not want to get too mushy but I am proud of you, young lady!
A (less sensitive)
Jumpy Owl
Re: Hello, Sole!
jumpyowl wrote:Are you still up or woke up early? I did the latter. Working on a questionnaire as I had some good ideas in my drug-induced dreams.
Yes, I was still up. My best friend has been visiting this weekend and I jumped online, briefly, to show her this board. She suffers from RLS occasionally and has severe lupus. So we were doing some reseach together.
I have been following your work and I am amazed at your progress in becoming an RLS expert.! You must be a quick study and also a nice, unselfish person. Your friends discovered that way before I did. I guess I have a lot to learn. I think you give much more than you take and thereby giving all of us a shiny example.
I do not want to get too mushy but I am proud of you, young lady!
Thank you.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Welcome T-Jay
Hi T-Jay, This is Jan
As Sole said, You've found a family (and you've met one of our very best!). Here, you'll find many fine people who are ready, willing and able to help you in many ways. I'm sorry you have RLS, but be assured that you WILL be listened to here and will find answers!! There are people who are knowledgeable in pharmaceuticals, people who are extremely good at researching anything from helpful websites to finding doctors in your area, and people who are willing to just listen to you when you are down, tired, feeling defeated, alone, etc. We've all been "there" and I, for one, can say that I have been so fortunate to have found this forum--it has helped me so much--that I want to "pass it on" in any way I can. I can only offer a shoulder and my own personal experience. But I am willing to listen anytime!! As are others!! You've found a home!! Welcome!! By the way, please feel free, if you so wish, to complete a personal biography. We would appreciate it very much. You can find it under New to RLS/New Members and Current Members Please Help. We are trying to gather information to take to our national meeting in November. Below, you'll see where my bio is listed. Once again, welcome!!
Jan
As Sole said, You've found a family (and you've met one of our very best!). Here, you'll find many fine people who are ready, willing and able to help you in many ways. I'm sorry you have RLS, but be assured that you WILL be listened to here and will find answers!! There are people who are knowledgeable in pharmaceuticals, people who are extremely good at researching anything from helpful websites to finding doctors in your area, and people who are willing to just listen to you when you are down, tired, feeling defeated, alone, etc. We've all been "there" and I, for one, can say that I have been so fortunate to have found this forum--it has helped me so much--that I want to "pass it on" in any way I can. I can only offer a shoulder and my own personal experience. But I am willing to listen anytime!! As are others!! You've found a home!! Welcome!! By the way, please feel free, if you so wish, to complete a personal biography. We would appreciate it very much. You can find it under New to RLS/New Members and Current Members Please Help. We are trying to gather information to take to our national meeting in November. Below, you'll see where my bio is listed. Once again, welcome!!
Jan
No one is alone who had friends.
New to this list
Hi everyone,
I am new to this list and just wanted to introduce myself. My name is Diana and I am 41 years old. I have had RLS for appx. 18 years. I have not been diagnosed with RLS and have never been to or discussed the subject with any doctor. I thought it was just me and my mom and thought maybe the two of us were just weird or something. Never told the doctor because I thought he would think I was crazy (Note: during my last C-section 3 years ago, the urge to move my legs was overwhelming, and brought me to tears, the assisting doc sort of laughed and told me to move them if I could). It was only a couple of years ago, while flipping through a home remedy book,that I discovered that what I had been experiencing had a name. Just started researching the internet a couple of weeks ago. Have now found out that my grandmother, mother, and at least 1 of my sisters also suffer. And of course none of us have been to the doctor.
In researching, I have found that meds are taken on a daily basis. My episodes are sporadic and I don't want to take meds everyday for something that doesn't occur everyday. Would like to be able to take something when it happens. Do most of you experience RLS everyday? If not, how often? Do you know of anything or med that can been taken as needed? From what I have been reading, I will have to educate my doctor when I discuss this with him. Any help is appreciated.
Diana
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pjshannon
RLS
Hi there,
Just needed to vent after being up ALL NIGHT LONG! I haven't been officially "diagnosed" as the couple of doctors I've mentioned this to looked at me like I had lost my mind!
I first started having the creepy crawly legs back in about 1985. Antihistimine used to be the only thing that triggered it. Those days are gone. I can't pin point anything in particular but now it gets really bad in my arms even worse than my legs. Nothing that cutting off a few limbs wouldn't solve! I joke but actually felt like doing that last night at 4 am when I was sitting in a hot bath trying to make the feeling go away.
I don't have pain or the jerks at all so not sure if this would even be my diagnosis. I just know that I want to crawl right out of my skin and it happens very often.
Thanks!
Just needed to vent after being up ALL NIGHT LONG! I haven't been officially "diagnosed" as the couple of doctors I've mentioned this to looked at me like I had lost my mind!
I first started having the creepy crawly legs back in about 1985. Antihistimine used to be the only thing that triggered it. Those days are gone. I can't pin point anything in particular but now it gets really bad in my arms even worse than my legs. Nothing that cutting off a few limbs wouldn't solve! I joke but actually felt like doing that last night at 4 am when I was sitting in a hot bath trying to make the feeling go away.
I don't have pain or the jerks at all so not sure if this would even be my diagnosis. I just know that I want to crawl right out of my skin and it happens very often.
Thanks!
Welcome, PJ
I have only one question and if your answer is yes, then you do have RLS!
The bothersome feelings you have (paresthesia), do they cease when you move the limbs and immobility brings them on?
You may not have noticeable jerks, but you could and probably do have near arousals while asleep. Only a sleep test with polysomnography would be able to tell. Even if you do not have that (periodic limb movement disorder), you could still have RLS.
What medications are you taking for it and otherwise? Do you have trouble sleeping?
Let me know and we can help.
The bothersome feelings you have (paresthesia), do they cease when you move the limbs and immobility brings them on?
You may not have noticeable jerks, but you could and probably do have near arousals while asleep. Only a sleep test with polysomnography would be able to tell. Even if you do not have that (periodic limb movement disorder), you could still have RLS.
What medications are you taking for it and otherwise? Do you have trouble sleeping?
Let me know and we can help.
Jumpy Owl
Hi again, T-Jay and Welcome PJShannon and dlsfipps
This is Jan
PJShannon and dlsfipps, please read my welcome to T-Jay!
I found some information that was helpful to me, which you might find useful, so I thought I'd pass it along. On the home page of this site, you will find drop-down menus, which have information that you can either download or print out. Here they are: What is RLS and RLS and Surgery (which I wish I would have had several months ago--the anesthesia they give you during pre-op is NOT what RLS sufferers should take!!). Under Announcements on this site, there is a link which has an RLS Algorithm: it is www.mayo.edu/proceedings/2004/jul/7907/cre.pdf. And, finally, there is a web site from which you can download a medical alert card which has listed any medication you should and should not be given and on which you can list all medications you are on, as well as your name, address, dr., etc. That link is: www.rlshelp.org. Of course, first you have to determine if you have RLS and Jumpy asked some very good questions. But, just in case, thought I'd pass this info along, just as it was passed along to me. Good luck and take care!!
Jan
PJShannon and dlsfipps, please read my welcome to T-Jay!
I found some information that was helpful to me, which you might find useful, so I thought I'd pass it along. On the home page of this site, you will find drop-down menus, which have information that you can either download or print out. Here they are: What is RLS and RLS and Surgery (which I wish I would have had several months ago--the anesthesia they give you during pre-op is NOT what RLS sufferers should take!!). Under Announcements on this site, there is a link which has an RLS Algorithm: it is www.mayo.edu/proceedings/2004/jul/7907/cre.pdf. And, finally, there is a web site from which you can download a medical alert card which has listed any medication you should and should not be given and on which you can list all medications you are on, as well as your name, address, dr., etc. That link is: www.rlshelp.org. Of course, first you have to determine if you have RLS and Jumpy asked some very good questions. But, just in case, thought I'd pass this info along, just as it was passed along to me. Good luck and take care!!
Jan
No one is alone who had friends.