Anticonvulsants?
Hi Em,
I don't have much to offer here, but would follow what jan and Josh said, someone is missing something here. And it is time they just did the whole testing gambit to find what is torturing you.
I'm so sorry honey, I was so hoping that this was going to be eaiser.
And NO I do not believe that you should lack hope! We just haven't asked the right questions or the right test yet. You'll get there. One step at a time it seems, but you'll get there.
You know the acupuncture/doctor I saw in NM, told me that many in our community seem to be medication opposites, and that our systems were a bit more fragile that way than the "normal" popluation. To be honest it does seem to work out that way for many of us. But don't let yourself think for one minute that there is not hope or an answer.
I do understand and know how hard your struggling right now. I have been right there and am in the sleep area still. But your coming with us, if I have to drag you down the path with the most hope.
I know how hard you've worked and you've done everything any doc has asked. Your tired and tortured right now, but you still got me and everyone here.
I hope at the very least you know I love you like your my little sisiter, my family. I would carry it for you if I could.
Keep pushing and don't you dare give up here.
I'm so glad to see your name. and You've got me anytime you need me. That is a promise.
Love, hugs, and The clearest, brightest moon ever to you,
Lynne
I don't have much to offer here, but would follow what jan and Josh said, someone is missing something here. And it is time they just did the whole testing gambit to find what is torturing you.
I'm so sorry honey, I was so hoping that this was going to be eaiser.
And NO I do not believe that you should lack hope! We just haven't asked the right questions or the right test yet. You'll get there. One step at a time it seems, but you'll get there.
You know the acupuncture/doctor I saw in NM, told me that many in our community seem to be medication opposites, and that our systems were a bit more fragile that way than the "normal" popluation. To be honest it does seem to work out that way for many of us. But don't let yourself think for one minute that there is not hope or an answer.
I do understand and know how hard your struggling right now. I have been right there and am in the sleep area still. But your coming with us, if I have to drag you down the path with the most hope.
I know how hard you've worked and you've done everything any doc has asked. Your tired and tortured right now, but you still got me and everyone here.
I hope at the very least you know I love you like your my little sisiter, my family. I would carry it for you if I could.
Keep pushing and don't you dare give up here.
I'm so glad to see your name. and You've got me anytime you need me. That is a promise.
Love, hugs, and The clearest, brightest moon ever to you,
Lynne
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Em, there are something like 20 or 30 other disorders that can cause secondary RLS. Yikes! It might not be one of those, but it might.
You know, I just had a thought. What if the people who all were "untreatable" all had something in common? But we just don't know what that something is????
Anything with the back can cause it, I know you were tested for celiac - but the blood tests (in a minority of people) can be negative and the person be positive. I'm not saying these are what you have, just saying that it is very possible that something is being missed. There IS something wrong. And it's just weird that nothing helps - and some things that should help are making it worse!
Secondary RLS is considered often is "worse" than primary. Many primary people are like your dad. But, secondary often comes on very, very fast, and worsens to 24/7 quickly. So, in that regard, what you are experiencing may be secondary.
I wish I knew. I don't. I can only spout out RLS factoids that I've memorized
and I don't know how much that helps (or hinders).
I do know that people suffer from things for years before people find out what it wrong. Jan is an example. My DH, too. He had celiac for 10-15 years before they found it. He had so many strange things going on. The doctors thought he was a hypochondriac.
So, I guess the only thing I really know is that it can pay to keep forcing them to keep looking at things. Any thing. Even if it seems like a 100-1 chance, if it's a possibility, they need to look at it. You are worth it. You need your life back if at all possible.
You know, I just had a thought. What if the people who all were "untreatable" all had something in common? But we just don't know what that something is????
Anything with the back can cause it, I know you were tested for celiac - but the blood tests (in a minority of people) can be negative and the person be positive. I'm not saying these are what you have, just saying that it is very possible that something is being missed. There IS something wrong. And it's just weird that nothing helps - and some things that should help are making it worse!
Secondary RLS is considered often is "worse" than primary. Many primary people are like your dad. But, secondary often comes on very, very fast, and worsens to 24/7 quickly. So, in that regard, what you are experiencing may be secondary.
I wish I knew. I don't. I can only spout out RLS factoids that I've memorized
and I don't know how much that helps (or hinders).
I do know that people suffer from things for years before people find out what it wrong. Jan is an example. My DH, too. He had celiac for 10-15 years before they found it. He had so many strange things going on. The doctors thought he was a hypochondriac.
So, I guess the only thing I really know is that it can pay to keep forcing them to keep looking at things. Any thing. Even if it seems like a 100-1 chance, if it's a possibility, they need to look at it. You are worth it. You need your life back if at all possible.
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.
Hi Em,
I know you must be beyond worn out, I just know it. Heck I have lived it before you and with you in the last year. You and I have spoken a couple of times, I so know the path your walking. it's just crappy and it's got a time limit in my head. It better start packing cause WE will not let it go for to uch longer. There are answers.
I think what you honestly need to do is get a referal to a Neuro and go for it. Be Blunt and don't worry if he or she knows one thing about RLS, because, if they don't it won't matter. You need a full round of testing. And someone that is willing to just say yes to helping you find an answer, hope on that wagon and forge ahead.
My uneducated opinion, is that you very well could have the nastiest case of medication restitant RLS and it's certainly presents itself in an unusual form. However, for myself that will never mean that you have to live with it this way forever. We simply have not found the source, if there is another, or we haven't asked the right questions to the right person yet.
The doctor up in NM I saw this summer, explained to me that there are many "medication opposites" among us, all of us, not just RLS. What really works in the general popluation, would have the wrong effect on a medication opposite. SO your not the only one and your not alone in that fact either. But there is answer or help and hope oput there.......what feels like tortous baby steps right now, will still get you closer to the answer. And no that would not make me feeling better RIGHT NOW. But you can't stop looking and hoping, and trying to do the best you can, without the pressure of caring first for yourself. Somedays it will have to be you first. That is just the truth.
You know that Ann and I will be down in SA with some of our communities best. You know I will corner more than one and ask about their thoughts about you. So I can not offer much just now. And yes, I know you've seen one of our best docs already, but I ain't giving up hope! Won't do it. I bet your sick of hearing that, but I do so mean it with all my heart.
Today look up every number for teaching hospitals in your state. Get the numbers for the medical departments and start calling, neuros. This is either a brain chemical imbalance or it's a spinal thing, who knows but fight your way through that door and ask questions of them all. And if any one of them says "I don't know" you shot back with "well could you ask around for me, I need my life back TY". That is your homework until Ann or myself get back with what we've found out.
Start calling and take no prisoners. If I knew anyone where you were I'd call myself, but you do it, and start breaking down doors.
Take that which helps ( I know very little does without side effects for you) and give your body a rest, your heart and emotions a rest. Come here and scream and yell and vent my love, we'll hold on to you. You will not go through this alone, just give us the chance to put our arms around you. We'll walk beside or carry you, if needed.
Don't you let go of that moon honey, I've packed you into my heart and your going with me to SA. I'll be home on Sunday night and I will come to you first and tell you what I found out. I imagen Ann will try for you too. She'll be here as well asap.
Anyone reading this , we have a family member in need. Pray, meditate, offer her up to the moon and hold her in your hearts. Send her warm thoughts and healing vibes. We're not letting go and we are not giving up. We will row for you right now my dear.
My love, my biggest hugs, my moon to you.
Lynne
I know you must be beyond worn out, I just know it. Heck I have lived it before you and with you in the last year. You and I have spoken a couple of times, I so know the path your walking. it's just crappy and it's got a time limit in my head. It better start packing cause WE will not let it go for to uch longer. There are answers.
I think what you honestly need to do is get a referal to a Neuro and go for it. Be Blunt and don't worry if he or she knows one thing about RLS, because, if they don't it won't matter. You need a full round of testing. And someone that is willing to just say yes to helping you find an answer, hope on that wagon and forge ahead.
My uneducated opinion, is that you very well could have the nastiest case of medication restitant RLS and it's certainly presents itself in an unusual form. However, for myself that will never mean that you have to live with it this way forever. We simply have not found the source, if there is another, or we haven't asked the right questions to the right person yet.
The doctor up in NM I saw this summer, explained to me that there are many "medication opposites" among us, all of us, not just RLS. What really works in the general popluation, would have the wrong effect on a medication opposite. SO your not the only one and your not alone in that fact either. But there is answer or help and hope oput there.......what feels like tortous baby steps right now, will still get you closer to the answer. And no that would not make me feeling better RIGHT NOW. But you can't stop looking and hoping, and trying to do the best you can, without the pressure of caring first for yourself. Somedays it will have to be you first. That is just the truth.
You know that Ann and I will be down in SA with some of our communities best. You know I will corner more than one and ask about their thoughts about you. So I can not offer much just now. And yes, I know you've seen one of our best docs already, but I ain't giving up hope! Won't do it. I bet your sick of hearing that, but I do so mean it with all my heart.
Today look up every number for teaching hospitals in your state. Get the numbers for the medical departments and start calling, neuros. This is either a brain chemical imbalance or it's a spinal thing, who knows but fight your way through that door and ask questions of them all. And if any one of them says "I don't know" you shot back with "well could you ask around for me, I need my life back TY". That is your homework until Ann or myself get back with what we've found out.
Start calling and take no prisoners. If I knew anyone where you were I'd call myself, but you do it, and start breaking down doors.
Take that which helps ( I know very little does without side effects for you) and give your body a rest, your heart and emotions a rest. Come here and scream and yell and vent my love, we'll hold on to you. You will not go through this alone, just give us the chance to put our arms around you. We'll walk beside or carry you, if needed.
Don't you let go of that moon honey, I've packed you into my heart and your going with me to SA. I'll be home on Sunday night and I will come to you first and tell you what I found out. I imagen Ann will try for you too. She'll be here as well asap.
Anyone reading this , we have a family member in need. Pray, meditate, offer her up to the moon and hold her in your hearts. Send her warm thoughts and healing vibes. We're not letting go and we are not giving up. We will row for you right now my dear.
My love, my biggest hugs, my moon to you.
Lynne
Okay everyone!
Em needs us badly (Make Mine Coffee! I'll post this in several places.
I ask that everyone pray for her, keep her in your thoughts, whatever it takes--- She has suffered so long and it's getting worse and she needs an answer! Even if the answer is something she doesn't want to hear, it's an answer!!!!!
I know how that feels and I'm sure I'm not alone. She is at her wit's end. She is part of our family and I ask that everyone who can please drop her a note here on the forum in this thread or in the one I'm starting called "PLEAS FOR MAKE MINE COFFEE).
Em, you are in my heart and mind constantly. Bless your heart, don't give up. Listen to Lynne, honey. She helped give me the courage to search for myself until I found an answer. We will all help you in any way we can. I'll PM you with my phone #. Please use it anytime.
Much love
Jan
Em needs us badly (Make Mine Coffee! I'll post this in several places.
I ask that everyone pray for her, keep her in your thoughts, whatever it takes--- She has suffered so long and it's getting worse and she needs an answer! Even if the answer is something she doesn't want to hear, it's an answer!!!!!
I know how that feels and I'm sure I'm not alone. She is at her wit's end. She is part of our family and I ask that everyone who can please drop her a note here on the forum in this thread or in the one I'm starting called "PLEAS FOR MAKE MINE COFFEE).
Em, you are in my heart and mind constantly. Bless your heart, don't give up. Listen to Lynne, honey. She helped give me the courage to search for myself until I found an answer. We will all help you in any way we can. I'll PM you with my phone #. Please use it anytime.
Much love
Jan
No one is alone who had friends.
Pleas for making my coffee
Hi Em I have been saying a prayer for you everynight since I have met you on the board. I will not give up and will continue praying for you all of the time. Pray is so powerful and just know something good will come out of this. Post anytime and please let me know how you are doing. I know that at times you probably do not have the energy to get on the computer and that is fine but you are in my thoughts and prayers. We are not giving up on you. Love you and will be there for you at anytime whether you need me or not. If you would want my phone number,let me know and I will pm it to you. If not, that is ok as I will still be there for you.
Charlene
Taking one day at a time
Taking one day at a time
Thank God I logged back on.
Emily, my love, this is not the end. I know what your saying, but this will not kill you today, nor tomorrow.
The is a beautiful, charming, smart, loving woman inside of you, A mom, a wife, a real you! She is there and she needs my broom to ride around some doc's office til someone finds an answer.
If I could I'd come right up there and just hold your hand and take you everywhere we could think of. Do what ever it took, to make sense of this all.
Yes, I understand, as do so many here, the hopelessness. It's a real feeling and often feels overwhelming. But you come here and vent, then we row and hold you, carry you til you feel a bit better. If we have to do this everyday, We Will. I will be gone til Sunday, But come Sunday night I'm yours. Everyone not going to the meeting will, I promise, behold you, row for you, let you scream and plead, but we are not giving up on you. It's just the fact, never. So you hang in there and take my broom and call those darn docs again.
Get mad and demand help. Beg and plead, and demand help. Scream and yell and DEMAND help.
I love you Emily. That I mean with all my heart.
This too shall pass and we will win together.
Love Lynne
Emily, my love, this is not the end. I know what your saying, but this will not kill you today, nor tomorrow.
The is a beautiful, charming, smart, loving woman inside of you, A mom, a wife, a real you! She is there and she needs my broom to ride around some doc's office til someone finds an answer.
If I could I'd come right up there and just hold your hand and take you everywhere we could think of. Do what ever it took, to make sense of this all.
Yes, I understand, as do so many here, the hopelessness. It's a real feeling and often feels overwhelming. But you come here and vent, then we row and hold you, carry you til you feel a bit better. If we have to do this everyday, We Will. I will be gone til Sunday, But come Sunday night I'm yours. Everyone not going to the meeting will, I promise, behold you, row for you, let you scream and plead, but we are not giving up on you. It's just the fact, never. So you hang in there and take my broom and call those darn docs again.
Get mad and demand help. Beg and plead, and demand help. Scream and yell and DEMAND help.
I love you Emily. That I mean with all my heart.
This too shall pass and we will win together.
Love Lynne
Hi Emily,
I've read quite a few of your posts, and really wish that in some way I could help you with the pain (physical and emotional) that you're feeling now. I've read where you've tried so many meds that work for some of us, and yet you remain in pain. I'm gonna tell you a few things that may or may not help, but I personally have experienced these, and so I'm gonna throw them out your way. First, I'm a person whose body doesn't respond to medications like most people do...I'm very sensitive to most medications (antidepressants, dopamine agonists, anti-convulsive meds, pain meds, and the list goes on). I experience adverse effects from medications that most people don't, and I don't get relief from many medications, like most people do. One thing that I've noticed is that whenever I take too much of a med (ya know...if one pill works, then 5 will work 5 times better), I experience a kind of paradoxical reaction, where any positive effects of the med diminish to zero. Also, if I try any medication, and anticipate difficulties or non-response, these usually become a reality. Over the years, I've come to realize that (for me), there's a tremendous connection between my mind and my body. In the old days doctors and other non-professionals would call this psychosomatic illness, and the sufferer would be viewed as a neurotic nut-case. Well, things have changed since those days (thankfully), and the concept that our emotions and thoughts have an extremely powerful effect on the health of the rest of our bodies has finally made it into the realm of our present-day culture...have you noticed the recent ads for Cymbalta, and how this anti-depressant addresses the physical as well as the mental and emotional pain of depression? When my depression kicks in, my physical health deteriorates as well...and doctors can't find a "cause" for my symptoms. Em, I know you've recently discontinued Topamax, and I think when a neuro prescribed it for my RLS and neuropathic pain a few years back, that it made my legs go nuts also.
I know that you've tried many of the meds typically prescribed for our conditions, and I know that you, like me, have increased doses of some of the meds beyond what normally works for others. I don't know what meds you're currently taking, or in what dosages, but do you think that possibly your dosing is too aggressive? Please understand, I'd never minimize anyone's need for relief from our conditions, and that my questions are put out to you to maybe help look at all possibilities for your past treatment ineffectiveness. I think that some of the others on this forum who insist that there is something definitely "going on" to give you the unrelenting pain you're in is right on the money, and I think we all need to think "out of the box", especially since we all respond to things differently. Like what was said above, don't ever throw up your hands and surrender to this...don't stop until you identify the cause for your condition, and find a treatment option that works. And Em, please believe me...there is an effective treatment option for you...you just need to find a professional that is compassionate, and who absolutely refuses to abandon the search for the cause of and cure for your condition. And I'm confident that your search for this person will be successful. There are so many wonderful people on this forum who are wishing and praying for your success in this, and I'm going to say a prayer for you every night until your finally free from your pain, and can get your life back. I can't say that I know how you're feeling right now, but I am certain that nobody here is giving up on you...we all care too much. Well, as usual, I've written another novel within a thread. Please, please keep posting here...and give us a chance to let you know how much you mean to us. ---Andy
I've read quite a few of your posts, and really wish that in some way I could help you with the pain (physical and emotional) that you're feeling now. I've read where you've tried so many meds that work for some of us, and yet you remain in pain. I'm gonna tell you a few things that may or may not help, but I personally have experienced these, and so I'm gonna throw them out your way. First, I'm a person whose body doesn't respond to medications like most people do...I'm very sensitive to most medications (antidepressants, dopamine agonists, anti-convulsive meds, pain meds, and the list goes on). I experience adverse effects from medications that most people don't, and I don't get relief from many medications, like most people do. One thing that I've noticed is that whenever I take too much of a med (ya know...if one pill works, then 5 will work 5 times better), I experience a kind of paradoxical reaction, where any positive effects of the med diminish to zero. Also, if I try any medication, and anticipate difficulties or non-response, these usually become a reality. Over the years, I've come to realize that (for me), there's a tremendous connection between my mind and my body. In the old days doctors and other non-professionals would call this psychosomatic illness, and the sufferer would be viewed as a neurotic nut-case. Well, things have changed since those days (thankfully), and the concept that our emotions and thoughts have an extremely powerful effect on the health of the rest of our bodies has finally made it into the realm of our present-day culture...have you noticed the recent ads for Cymbalta, and how this anti-depressant addresses the physical as well as the mental and emotional pain of depression? When my depression kicks in, my physical health deteriorates as well...and doctors can't find a "cause" for my symptoms. Em, I know you've recently discontinued Topamax, and I think when a neuro prescribed it for my RLS and neuropathic pain a few years back, that it made my legs go nuts also.
I know that you've tried many of the meds typically prescribed for our conditions, and I know that you, like me, have increased doses of some of the meds beyond what normally works for others. I don't know what meds you're currently taking, or in what dosages, but do you think that possibly your dosing is too aggressive? Please understand, I'd never minimize anyone's need for relief from our conditions, and that my questions are put out to you to maybe help look at all possibilities for your past treatment ineffectiveness. I think that some of the others on this forum who insist that there is something definitely "going on" to give you the unrelenting pain you're in is right on the money, and I think we all need to think "out of the box", especially since we all respond to things differently. Like what was said above, don't ever throw up your hands and surrender to this...don't stop until you identify the cause for your condition, and find a treatment option that works. And Em, please believe me...there is an effective treatment option for you...you just need to find a professional that is compassionate, and who absolutely refuses to abandon the search for the cause of and cure for your condition. And I'm confident that your search for this person will be successful. There are so many wonderful people on this forum who are wishing and praying for your success in this, and I'm going to say a prayer for you every night until your finally free from your pain, and can get your life back. I can't say that I know how you're feeling right now, but I am certain that nobody here is giving up on you...we all care too much. Well, as usual, I've written another novel within a thread. Please, please keep posting here...and give us a chance to let you know how much you mean to us. ---Andy
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Anonymous
Em, the info is in the sticky on managing RLS is the New to RLS section: http://bb.rls.org/viewtopic.php?t=1068
I can only imagine how you must feel. I can also only imagine how hard it is to be positive. I felt so sad when I read how you feel. To really feel that nothing good happens and that you feel doomed - it must be such a burden. There is a possibility that you are right in one sense - you might not get your life back as you knew it. But, you can still find a way to live this life with what you have. It won't be easy. But it is a choice. I'm not sure if I could make the choice to let it go when it's in your face (literally and figuratively) every day. I hope you can. There are some great mediation tapes by Jon Kabatt Zinn that were developed for people going through cancer pain. It might be a place to start - finding a way to accept that it is horrible and that it might not change. That might open the door to finding true change and from there? Who knows.
I can only imagine how you must feel. I can also only imagine how hard it is to be positive. I felt so sad when I read how you feel. To really feel that nothing good happens and that you feel doomed - it must be such a burden. There is a possibility that you are right in one sense - you might not get your life back as you knew it. But, you can still find a way to live this life with what you have. It won't be easy. But it is a choice. I'm not sure if I could make the choice to let it go when it's in your face (literally and figuratively) every day. I hope you can. There are some great mediation tapes by Jon Kabatt Zinn that were developed for people going through cancer pain. It might be a place to start - finding a way to accept that it is horrible and that it might not change. That might open the door to finding true change and from there? Who knows.
Hi Em
I'm so sorry---I have been gone all day until just now and saw your posts.
Everyone is so right, honey. You will get through this. I understand the hopelessness you feel (as much as anyone can understand someone else's situation). I understand going from doctor to doctor trying to find an answer.
I wish I could give you a hug, take care of your kids for you, anything!! I'd cry with you..... but, honey, don't give up hope. Because there is always hope. I'm not telling you to "shake it off" because I know that's not possible right now. I'm just asking you to hang on as tight as you can. We are all here for you. You have friends who care, very much!
You said:
Em, you are a wonderful example for others...... you are open about your struggles, your pain, you hopelessness. You do have courage deep inside. And, your statement about being made to feel crazy, neurotic, etc. could fit so many of us here on the forum. I applaud your honesty, I applaud the fact that you can come here and tell us all exactly how you feel. That's the first step, honey.
You may never be the Em you thought you would be. But, you will be a new Em---most likely made stronger because of the trials you've been through. You have a wonderful spirit, Em, and I know that will get you through this. I know because you are walking in steps others have walked before you. You a stronger than you think--you are just tired, sick and tired right now.
And, we are here for you, to help hold you up, to help carry you through this. We are family and we are here.
Love
Jan
I'm so sorry---I have been gone all day until just now and saw your posts.
Everyone is so right, honey. You will get through this. I understand the hopelessness you feel (as much as anyone can understand someone else's situation). I understand going from doctor to doctor trying to find an answer.
I wish I could give you a hug, take care of your kids for you, anything!! I'd cry with you..... but, honey, don't give up hope. Because there is always hope. I'm not telling you to "shake it off" because I know that's not possible right now. I'm just asking you to hang on as tight as you can. We are all here for you. You have friends who care, very much!
You said:
I know this is a terrible example to set for others who are struggling, but the truth is I have all but given up on myself. I wish I had the nerve and the strength and the courage to knock on every doctor's office in town, but I don't. I have been made to feel crazy, neurotic, and like I'm being difficult...all because these lazy local doctors don't want to run all the tests on me.
Em, you are a wonderful example for others...... you are open about your struggles, your pain, you hopelessness. You do have courage deep inside. And, your statement about being made to feel crazy, neurotic, etc. could fit so many of us here on the forum. I applaud your honesty, I applaud the fact that you can come here and tell us all exactly how you feel. That's the first step, honey.
You may never be the Em you thought you would be. But, you will be a new Em---most likely made stronger because of the trials you've been through. You have a wonderful spirit, Em, and I know that will get you through this. I know because you are walking in steps others have walked before you. You a stronger than you think--you are just tired, sick and tired right now.
And, we are here for you, to help hold you up, to help carry you through this. We are family and we are here.
Love
Jan
No one is alone who had friends.
anyone got worse from anticonvulsants
Oh Em,I also wish I could take the pain away for you. Please, please do not give up on yourself. We are all here for you and praying. I do not know what you are going through, but know all of us are here for you day and night. There is hope for you and please listen to what everyone is saying to you. I am still praying to God to please take the pain away and find a good dr that will listen and do something for you. Remember what Jan says - You may never be the Em you thought you would be, but you will be a new Em. We are family and will help you through this no matter what.
Charlene
Taking one day at a time
Taking one day at a time