Re: [TMIC] Looking for input.
Janet I think I am one of the odd ones out there who has more problems with the heat than I do with the cold weather. I always seem to have more issues with spasms and pain during the summer months, especially if we are having hot days with high humidity. Lynne --- On Mon, 6/25/12, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: [TMIC] Looking for input. To: tmic-list@eskimo.com Date: Monday, June 25, 2012, 1:29 AM Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet My problem with the heat is fatigue. The hotter it gets the more my fatigue increases. I also have increased muscle weakness more numbness. It seems worse every summer. It is difficult to do much I basically spend the summer in the house. My husband has relatives in North Dakota (we live in Texas) we are considering spending next summer there because of the heat here. I have never taken Lyrica, but I have never had much of a problems with spasms. I haven't found anything that helps except cooler temperatures. I don't have near the problems with the cold. PS There is still people here, I just don't write much. Linda E. From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Monday, June 25, 2012 9:48 AM Subject: Re: [TMIC] Looking for input. Janet I think I am one of the odd ones out there who has more problems with the heat than I do with the cold weather. I always seem to have more issues with spasms and pain during the summer months, especially if we are having hot days with high humidity. Lynne --- On Mon, 6/25/12, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: [TMIC] Looking for input. To: tmic-list@eskimo.com Date: Monday, June 25, 2012, 1:29 AM Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I haven't really noticed if spasms are worse, but my main problem with the heart is that it just drains me of energy. I'm much more easily fatigued in the heat, but I am stiffer in the cold and am almost home-bound when it is icy due to balance and footing problems. Barbara H. http://barbarah.wordpress.com On Mon, Jun 25, 2012 at 1:29 AM, Janet Dunn j.d...@shaw.ca wrote: Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
Well, the both of us here in Elvisland suffer the heat . greatly. Welost a tall tree to a nasty storm last year and as a result, our back yard is about ten degrees hotter'n before. It's great for some of the veggies we have growing out there but the dawgs and us ... prefer to stay inside. Arghh... BobbyJim - Original Message - From: Barbara H. To: Janet Dunn Cc: tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:11 AM Subject: Re: [TMIC] Looking for input. I haven't really noticed if spasms are worse, but my main problem with the heart is that it just drains me of energy. I'm much more easily fatigued in the heat, but I am stiffer in the cold and am almost home-bound when it is icy due to balance and footing problems. Barbara H. http://barbarah.wordpress.com On Mon, Jun 25, 2012 at 1:29 AM, Janet Dunn j.d...@shaw.ca wrote: Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet, I have not noticed increased pain anywhere with the heat. I do, however, have problems with heat affecting my ability to handle my body’s heat from the shoulders up.I have excessive sweating from head and face.I wear a patch – it is Clonidine and it helps with our hot weather. I still don’t spend any time outside when it is s hot anymore. Are you taking something else instead of Lyrica? Janice, always still here with this group. From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet, one more thought. Do you take Baclofen for spasms?Really works great for me as long as I take it 3 times a day. Janice From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Bernie..You may find this strange but I’m just the opposite. When I get to cold my pain level goes up. In the summer I will go out on the back porch for the warmth and sunshine. We keep our home at about 76 or 77. In the winter even with the central heating I have a small portable heater in the bathroom because I get to cold in the shower. This TM thing is a strange affliction. Please call me this winter when you order up the snow. Maybe I can have time to go further south somewhere. LOL!.Cody in Austin From: Bernie Pelow Sent: Monday, June 25, 2012 10:46 AM To: Janet Dunn ; TMIC Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I have found that heat and cold have no effect on my condition. The only thing that makes me struggle is high humidity and or rain. I have found both Lyrica and Cymbalta to be helpful. Rob in New Jersey -Original Message- From: Janice Nichols jan...@centurytel.net To: Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Mon, Jun 25, 2012 2:23 pm Subject: Re: [TMIC] Looking for input. Janet, I have not noticed increased pain anywhere with the heat. I do, however, have problems with heat affecting my ability to handle my body’s heat from the shoulders up.I have excessive sweating from head and face.I wear a patch – it is Clonidine and it helps with our hot weather. I still don’t spend any time outside when it is s hot anymore. Are you taking something else instead of Lyrica? Janice, always still here with this group. From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
RE: [TMIC] Looking for input.
Coincidentally, someone from a different TM support group recently expressed similar difficulty and here's a response that may be of help. Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated. --- My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps. From: Janet Dunn mailto:j.d...@shaw.ca Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
wont leave home without it...lol From: Janice Nichols jan...@centurytel.net To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 2:25 PM Subject: Re: [TMIC] Looking for input. Janet, one more thought. Do you take Baclofen for spasms? Really works great for me as long as I take it 3 times a day. Janice From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Folks, If I forget to take Lyrica, then within hours I light up from within like a Roman candle. Suddenly, it is as if I am being dragged through a prickly pear patch. I'm not kidding: I would need hospitalization and enough other meds that I would be a zombe. DG Dalton H. Garis Flushing, Queens New York, USA From: Todd Tarno toddtm2...@sbcglobal.net Date: Monday, 25 January 2012 3:49 PM To: TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 12:53:55 -0700 I have only got good things to say, about getting off Lyrica.Was on Neuronten for 5 yrs Lyrica for 5 yrs. 1. Had a bad reaction with one of my other medication. 2. I lost 10 lbs in the first 2 months. 3. Got more good feeling in both of my legs. With the heat no AC right now, I'm having trouble with the stiffness of both legs. Hope to get a new unit this week. Todd in Warm Corpus Christi, TX Bernie: ( where for the next 3 months it will average about 95 to 105 degrees at the peak heat in the afternoon ) --- On Mon, 6/25/12, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] Looking for input. To: Bernie Pelow bpe...@austin.rr.com, Janet Dunn j.d...@shaw.ca, TMIC tmic-list@eskimo.com Date: Monday, June 25, 2012, 11:55 AM Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
ME TOO! Although the Lyrica makes my thinking fuzzy, I really hate the Roman candle or as I put it, The demon with the taser gun. I have tried so many medications, and all of them either don't work or have really negative side effects. Hot and cold effect me too, either lots of fatigue or pain. Roger in Kennewick, WA From: Dalton Garis malugss...@gmail.com To: Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 4:19 PM Subject: Re: [TMIC] Looking for input. Folks, If I forget to take Lyrica, then within hours I light up from within like a Roman candle. Suddenly, it is as if I am being dragged through a prickly pear patch. I'm not kidding: I would need hospitalization and enough other meds that I would be a zombe. DG Dalton H. Garis Flushing, Queens New York, USA From: Todd Tarno toddtm2...@sbcglobal.net Date: Monday, 25 January 2012 3:49 PM To: TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 12:53:55 -0700 I have only got good things to say, about getting off Lyrica. Was on Neuronten for 5 yrs Lyrica for 5 yrs. 1. Had a bad reaction with one of my other medication. 2. I lost 10 lbs in the first 2 months. 3. Got more good feeling in both of my legs. With the heat no AC right now, I'm having trouble with the stiffness of both legs. Hope to get a new unit this week. Todd in Warm Corpus Christi, TX Bernie: ( where for the next 3 months it will average about 95 to 105 degrees at the peak heat in the afternoon ) --- On Mon, 6/25/12, john snodgrass jcs...@yahoo.comwrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] Looking for input. To: Bernie Pelow bpe...@austin.rr.com, Janet Dunn j.d...@shaw.ca, TMIC tmic-list@eskimo.com Date: Monday, June 25, 2012, 11:55 AM Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice From: Elizabeth Clark Sent: Monday, June 25, 2012 2:36 PM To: 'Janet Dunn' ; tmic-list@eskimo.com Subject: RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help… “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” *From:* Janet Dunn j.d...@shaw.ca *Sent:* Monday, June 25, 2012 12:29 AM *To:* tmic-list@eskimo.com *Subject:* [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and
Re: [TMIC] Looking for input.
We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
