Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi Donna, Sorry too hear you are now doing this too. I have been a member of this group for a while, though due to physical and technical difficulties have not been on, posting or recieving the newsletters for atleast 5-6 months. I have had these "jerks" for quite a few years, to the point that I appear to be having a seizure in one part of my body or another. I have one in my face right now that keeps pulling my left cheek up,almost like it is trying to close my eye. I have them over my whole body, and even whacked someone in a store once when my arm went off. MY Docs have put me on Lamictal 100mg. which I can only take at night, dose help some with sleep, but during the day I use Klonopin,both are anti-epilectic meds. The Klonopin I originally started with for panic attacks, then found it helped with mild spasms. Though neither stop the Jerking they do make them more tolorable and the muscles are not nearly as sore after. Blessings of Love, Hugz and Peace __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I have had these " jerks " for quite a few years, to the point that I appear to be having a seizure in one part of my body or another. I have one in my face right now that keeps pulling my left cheek up,almost like it is trying to close my eye. I have them over my whole body, and even whacked someone in a store once when my arm went off. My dr took me off of the Pamelor that I was on and that seems to have helped some, I still am having smaller ones in my affected arm but its not nearly as bad as before. I'm hoping that this resolves them for now at least, thank you for telling me your experience with this however. So many of these weird little episodes seem like they only happen to you until you hear someone else speak of them. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I have had these " jerks " for quite a few years, to the point that I appear to be having a seizure in one part of my body or another. I have one in my face right now that keeps pulling my left cheek up,almost like it is trying to close my eye. I have them over my whole body, and even whacked someone in a store once when my arm went off. My dr took me off of the Pamelor that I was on and that seems to have helped some, I still am having smaller ones in my affected arm but its not nearly as bad as before. I'm hoping that this resolves them for now at least, thank you for telling me your experience with this however. So many of these weird little episodes seem like they only happen to you until you hear someone else speak of them. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Donna I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE SOFT HUGS TO YOU PAMDonna wrote: I have had these "jerks" for quite a few years, to the point that I appear to be having a seizure in one part of my body or another. I have one in my face right now that keeps pulling my left cheek up,almost like it is trying to close my eye. I have them over my whole body, and even whacked someone in a store once when my arm went off. My dr took me off of the Pamelor that I was on and that seems to have helped some, I still am having smaller ones in my affected arm but its not nearly as bad as before.I'm hoping that this resolves them for now at least, thank you for telling me your experience with this however. So many of these weird little episodes seem like they only happen to you until you hear someone else speak of them.HugsDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Donna I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE SOFT HUGS TO YOU PAMDonna wrote: I have had these "jerks" for quite a few years, to the point that I appear to be having a seizure in one part of my body or another. I have one in my face right now that keeps pulling my left cheek up,almost like it is trying to close my eye. I have them over my whole body, and even whacked someone in a store once when my arm went off. My dr took me off of the Pamelor that I was on and that seems to have helped some, I still am having smaller ones in my affected arm but its not nearly as bad as before.I'm hoping that this resolves them for now at least, thank you for telling me your experience with this however. So many of these weird little episodes seem like they only happen to you until you hear someone else speak of them.HugsDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep... Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep... Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep... Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 This is merely a thought, but I have taken Clonazepam for restless legs, actually used on Parkinsons Disease to help with involuntary tremors. Wonder if that would help you guys? I'm on a more generic version since I can't go up on the Clonazepam. It's not working quite as well, and am tempted to go back on the Clonazepam with the dose I was taking. The only reason it was changed was when I went for the sleep study the doctor who read the tests must have felt it wasn't doing the job. But most of the time it did, better than what this is doing. Love, N.Donna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 This is merely a thought, but I have taken Clonazepam for restless legs, actually used on Parkinsons Disease to help with involuntary tremors. Wonder if that would help you guys? I'm on a more generic version since I can't go up on the Clonazepam. It's not working quite as well, and am tempted to go back on the Clonazepam with the dose I was taking. The only reason it was changed was when I went for the sleep study the doctor who read the tests must have felt it wasn't doing the job. But most of the time it did, better than what this is doing. Love, N.Donna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 This is merely a thought, but I have taken Clonazepam for restless legs, actually used on Parkinsons Disease to help with involuntary tremors. Wonder if that would help you guys? I'm on a more generic version since I can't go up on the Clonazepam. It's not working quite as well, and am tempted to go back on the Clonazepam with the dose I was taking. The only reason it was changed was when I went for the sleep study the doctor who read the tests must have felt it wasn't doing the job. But most of the time it did, better than what this is doing. Love, N.Donna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Donna, Just curious about the twitching, how long have you had the actual twitching when you go to sleep? I have had RSD for two years now, but the twitching only just started a couple of weeks ago! I am wondering if this is something that happens after you have had the disease for a while! Do you have any ideas about this? Once again very curious and would love to have more information about this when I go to the doctors on the 25th. Please let me know what you can. LOL Always! DawnDonna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep...HugsDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Donna, Just curious about the twitching, how long have you had the actual twitching when you go to sleep? I have had RSD for two years now, but the twitching only just started a couple of weeks ago! I am wondering if this is something that happens after you have had the disease for a while! Do you have any ideas about this? Once again very curious and would love to have more information about this when I go to the doctors on the 25th. Please let me know what you can. LOL Always! DawnDonna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep...HugsDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Donna, Just curious about the twitching, how long have you had the actual twitching when you go to sleep? I have had RSD for two years now, but the twitching only just started a couple of weeks ago! I am wondering if this is something that happens after you have had the disease for a while! Do you have any ideas about this? Once again very curious and would love to have more information about this when I go to the doctors on the 25th. Please let me know what you can. LOL Always! DawnDonna wrote: I GET THESE ALL THE TIME DID YOUR DOCTOR RECOMEND ANY THING THAT WOULD HELP FOR THEM. MY ARMS DO THEM A LITTLE BUT MY LEGS DO THAT A LOT. FOR A WHILE I THOUGHT IT WAS SOMETHING I WAS DOING WRONG BUT I GUESS IT IS PART OF THE RSD.. THANKS AT LEAST THAT MAKES MORE SENSE The dr didnt really have much of a solution for me. She just suggested that I stop taking the Pamelor that I was on for sleep. I found that the last two nights I havent had the twitching quite so badly..its more localized to just my affected arm. I have been taking Valerian root instead which helps me to sleep...HugsDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 > Donna, > Just curious about the twitching, how long have you had the actual twitching when you go to sleep? Dawn The twitching started just a few weeks ago. I've had RSD diagnosed since May but was injured 1 yr ago October 1, 2003. Its funny cuz when I asked the nurse practioner, she wouldnt confirm for me whether it had anything to do with RSD, she seemed more convinced that it was medicinally related and since she took me off the Pamelor the twitching has decreased immensely, so perhaps she was right, well at least in respect to my circumstances. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 > Donna, > Just curious about the twitching, how long have you had the actual twitching when you go to sleep? Dawn The twitching started just a few weeks ago. I've had RSD diagnosed since May but was injured 1 yr ago October 1, 2003. Its funny cuz when I asked the nurse practioner, she wouldnt confirm for me whether it had anything to do with RSD, she seemed more convinced that it was medicinally related and since she took me off the Pamelor the twitching has decreased immensely, so perhaps she was right, well at least in respect to my circumstances. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 > Donna, > Just curious about the twitching, how long have you had the actual twitching when you go to sleep? Dawn The twitching started just a few weeks ago. I've had RSD diagnosed since May but was injured 1 yr ago October 1, 2003. Its funny cuz when I asked the nurse practioner, she wouldnt confirm for me whether it had anything to do with RSD, she seemed more convinced that it was medicinally related and since she took me off the Pamelor the twitching has decreased immensely, so perhaps she was right, well at least in respect to my circumstances. Hugs Donna Quote Link to comment Share on other sites More sharing options...
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