Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Randee, I used Topamax for about 10 years. I was initially prescribed it to control the chronic headaches i developed after a few hemorrhages from a vascular malformation in my brain. It just so happened that when I started having neuropathy from my TC, it was good for that too. It worked fairly well. Better than other things i have tried. There were 3 side effects that I dealt with when I took it. 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause weight gain. Amazing, huh? When I started taking it, I got down to a size 6. It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... after my last surgery, the weight came back on and it never fell off again. 2) problems with word finding. This was probably the biggest problem. It can really screw with the language center of the brain, and it sure did mine. I had such problems giving oral presentations in my MPH program. I felt like I sounded like a moron. The best way to describe it is with an example. So, I may be wanting to say the word " dog " but instead, I would say, " you know... the furry animal, with for legs that says woof. " But the word dog was just not there. I'll never forget one day when I was in PT. I had been off Topamax for a while and decided to go back on it. I couldn't find anything that worked any better for the neuropathy with side effects I could tolerate. I was laying on the mat, trying to have a conversation with my PT and I could hardly get a word out. That is when it struck me just how bad the word finding was that I had been dealing with. I had just gotten used to it. But at that moment, it reduced me to tears. I could hardly get a single word out other than a preposition. SO frustrating. I stuck with it for a while, and eventually, I hated the side effects so much and it didn't seem to control my pain as well as it once had, so I quit. 3) tingling in my extremities and face. This was most noticeable when I first started taking it (or right after a dose increase) or during cold weather. It was not horrible. Most often when I would notice it, I would think I had a stray hair tickling my face. I would keep trying to brush it away, only to eventually realize it was the tingling from the topamax. Not bad, not too annoying. For some reason, it seemed more prevalent during really cold weather. All in all, this is the med I have best been able to tolerate over the years. I don't know if I could stand the word-finding problems if I took it again. It took a LONG time for that side effect to resolve. And I'm not sure that it has fully resolved. I have read several sites that say that this med can cause permanent changes in the brain. I still don't feel the same mentally as I did before I took it. I do know that the word-finding issue and other language issues took more than a year off of it before I felt like they were to the point I was pretty close to before I took it. Then again, I took it for 10 years or more. Jenn On Fri, Aug 19, 2011 at 10:09 PM, randeejae@... wrote: > ** > > > Hi all, > Has anyone used topomax for pain control and, if so, what was your > experience? Thanks. Randee > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Thanks, Jenn. Your weight is fine I would say! I did ask for that reason as my daughter is suffering so from the weight gain from neurontin. She knows that it is most important to control her pain, but at 21 to have gained so very much in a year is really hard for her. And her appetite is so huge which makes it so much harder to lose weight. I did read about all these awful side effects on line but wanted to see what " real people " had to say. She is in college as you know so not being able to wordfind would be a bit difficult as it was for you during your Masters program. Randee In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, jlbobin@... writes: Randee, I used Topamax for about 10 years. I was initially prescribed it to control the chronic headaches i developed after a few hemorrhages from a vascular malformation in my brain. It just so happened that when I started having neuropathy from my TC, it was good for that too. It worked fairly well. Better than other things i have tried. There were 3 side effects that I dealt with when I took it. 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause weight gain. Amazing, huh? When I started taking it, I got down to a size 6. It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... after my last surgery, the weight came back on and it never fell off again. 2) problems with word finding. This was probably the biggest problem. It can really screw with the language center of the brain, and it sure did mine. I had such problems giving oral presentations in my MPH program. I felt like I sounded like a moron. The best way to describe it is with an example. So, I may be wanting to say the word " dog " but instead, I would say, " you know... the furry animal, with for legs that says woof. " But the word dog was just not there. I'll never forget one day when I was in PT. I had been off Topamax for a while and decided to go back on it. I couldn't find anything that worked any better for the neuropathy with side effects I could tolerate. I was laying on the mat, trying to have a conversation with my PT and I could hardly get a word out. That is when it struck me just how bad the word finding was that I had been dealing with. I had just gotten used to it. But at that moment, it reduced me to tears. I could hardly get a single word out other than a preposition. SO frustrating. I stuck with it for a while, and eventually, I hated the side effects so much and it didn't seem to control my pain as well as it once had, so I quit. 3) tingling in my extremities and face. This was most noticeable when I first started taking it (or right after a dose increase) or during cold weather. It was not horrible. Most often when I would notice it, I would think I had a stray hair tickling my face. I would keep trying to brush it away, only to eventually realize it was the tingling from the topamax. Not bad, not too annoying. For some reason, it seemed more prevalent during really cold weather. All in all, this is the med I have best been able to tolerate over the years. I don't know if I could stand the word-finding problems if I took it again. It took a LONG time for that side effect to resolve. And I'm not sure that it has fully resolved. I have read several sites that say that this med can cause permanent changes in the brain. I still don't feel the same mentally as I did before I took it. I do know that the word-finding issue and other language issues took more than a year off of it before I felt like they were to the point I was pretty close to before I took it. Then again, I took it for 10 years or more. Jenn On Fri, Aug 19, 2011 at 10:09 PM, randeejae@... wrote: > ** > > > Hi all, > Has anyone used topomax for pain control and, if so, what was your > experience? Thanks. Randee > > Sent from my Verizon Wireless Phone > > [Non-text portions of this message have been removed] > > > [Non-text portions of this message have been removed] ------------------------------------ NOT MEDICAL ADVICE. We Are Not Doctors. Need help with list?Email Darlene: darlene_self@... or : hollygolightly1916@... Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Randee, I was in college most of the time when I took it and I managed to get used to the effects it had on my language center. Most people knew it was an issue for me and would just give me the word I was looking for. I also talked to my profs at the beginning of class. I was also registered with disability services for my MPH. I was allowed extra time on tests and took them separate from the class. I didn't necessarily take them at a different time, often, just in an empty classroom nearby. Just so I could have complete quiet so someone's sniffle, cough, vibrating cell phone or question to the prof didn't make the word I just searched for disappear. It worked out well and all my profs were very accommodating. While I hated the language issues Topamax caused, at the time, it gave me the best pain control with the most tolerable side effects. I guess after having tried so many meds, dealing with the speech issue was the lesser of the evils when the others caused so many more problems. I remember when I took Tegretol (carbamepazine). I felt like I was running in slow motion. Unfortunately, it wasn't just my perception. Most people said I talked like I was in slow motion too. So, even though it is annoying, it is possible to work around it with college. And it may be less annoying than different side effects caused by the alternate meds. Jenn > ** > > > Thanks, Jenn. Your weight is fine I would say! I did ask for that reason > as my daughter is suffering so from the weight gain from neurontin. She > knows that it is most important to control her pain, but at 21 to have > gained so very much in a year is really hard for her. And her appetite is > so > huge which makes it so much harder to lose weight. I did read about all > these awful side effects on line but wanted to see what " real people " had > to > say. She is in college as you know so not being able to wordfind would be a > > bit difficult as it was for you during your Masters program. Randee > > > In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, > jlbobin@... writes: > > Randee, > > I used Topamax for about 10 years. I was initially prescribed it to control > the chronic headaches i developed after a few hemorrhages from a vascular > malformation in my brain. It just so happened that when I started having > neuropathy from my TC, it was good for that too. It worked fairly well. > Better than other things i have tried. There were 3 side effects that I > dealt with when I took it. > 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause > weight gain. Amazing, huh? When I started taking it, I got down to a size > 6. > It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... > after my last surgery, the weight came back on and it never fell off again. > > 2) problems with word finding. This was probably the biggest problem. It > can really screw with the language center of the brain, and it sure did > mine. I had such problems giving oral presentations in my MPH program. I > felt like I sounded like a moron. The best way to describe it is with an > example. So, I may be wanting to say the word " dog " but instead, I would > say, " you know... the furry animal, with for legs that says woof. " But the > word dog was just not there. I'll never forget one day when I was in PT. I > had been off Topamax for a while and decided to go back on it. I couldn't > find anything that worked any better for the neuropathy with side effects I > could tolerate. I was laying on the mat, trying to have a conversation with > my PT and I could hardly get a word out. That is when it struck me just how > bad the word finding was that I had been dealing with. I had just gotten > used to it. But at that moment, it reduced me to tears. I could hardly get > a > single word out other than a preposition. SO frustrating. I stuck with it > for a while, and eventually, I hated the side effects so much and it didn't > seem to control my pain as well as it once had, so I quit. > 3) tingling in my extremities and face. This was most noticeable when I > first started taking it (or right after a dose increase) or during cold > weather. It was not horrible. Most often when I would notice it, I would > think I had a stray hair tickling my face. I would keep trying to brush it > away, only to eventually realize it was the tingling from the topamax. Not > bad, not too annoying. For some reason, it seemed more prevalent during > really cold weather. > > All in all, this is the med I have best been able to tolerate over the > years. I don't know if I could stand the word-finding problems if I took it > again. It took a LONG time for that side effect to resolve. And I'm not > sure > that it has fully resolved. I have read several sites that say that this > med > can cause permanent changes in the brain. I still don't feel the same > mentally as I did before I took it. I do know that the word-finding issue > and other language issues took more than a year off of it before I felt > like > they were to the point I was pretty close to before I took it. Then again, > I > took it for 10 years or more. > > Jenn > > On Fri, Aug 19, 2011 at 10:09 PM, randeejae@... > wrote: > > > ** > > > > > > Hi all, > > Has anyone used topomax for pain control and, if so, what was your > > experience? Thanks. Randee > > > > Sent from my Verizon Wireless Phone > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Thanks, Jenn...the pain is pretty well controlled with the neurontin so weight loss might not be a good reason for her to switch to something with so many annoying effects. Switching from Prozac to Cymbalta has helped her pain as well. She will see a physiatrist for the first time in October..i think that would be the right MD to follow her long term..and I will ask her, if she wants, to raise the issue with him. Randee In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, jlbobin@... writes: Randee, I was in college most of the time when I took it and I managed to get used to the effects it had on my language center. Most people knew it was an issue for me and would just give me the word I was looking for. I also talked to my profs at the beginning of class. I was also registered with disability services for my MPH. I was allowed extra time on tests and took them separate from the class. I didn't necessarily take them at a different time, often, just in an empty classroom nearby. Just so I could have complete quiet so someone's sniffle, cough, vibrating cell phone or question to the prof didn't make the word I just searched for disappear. It worked out well and all my profs were very accommodating. While I hated the language issues Topamax caused, at the time, it gave me the best pain control with the most tolerable side effects. I guess after having tried so many meds, dealing with the speech issue was the lesser of the evils when the others caused so many more problems. I remember when I took Tegretol (carbamepazine). I felt like I was running in slow motion. Unfortunately, it wasn't just my perception. Most people said I talked like I was in slow motion too. So, even though it is annoying, it is possible to work around it with college. And it may be less annoying than different side effects caused by the alternate meds. Jenn > ** > > > Thanks, Jenn. Your weight is fine I would say! I did ask for that reason > as my daughter is suffering so from the weight gain from neurontin. She > knows that it is most important to control her pain, but at 21 to have > gained so very much in a year is really hard for her. And her appetite is > so > huge which makes it so much harder to lose weight. I did read about all > these awful side effects on line but wanted to see what " real people " had > to > say. She is in college as you know so not being able to wordfind would be a > > bit difficult as it was for you during your Masters program. Randee > > > In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, > jlbobin@... writes: > > Randee, > > I used Topamax for about 10 years. I was initially prescribed it to control > the chronic headaches i developed after a few hemorrhages from a vascular > malformation in my brain. It just so happened that when I started having > neuropathy from my TC, it was good for that too. It worked fairly well. > Better than other things i have tried. There were 3 side effects that I > dealt with when I took it. > 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause > weight gain. Amazing, huh? When I started taking it, I got down to a size > 6. > It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... > after my last surgery, the weight came back on and it never fell off again. > > 2) problems with word finding. This was probably the biggest problem. It > can really screw with the language center of the brain, and it sure did > mine. I had such problems giving oral presentations in my MPH program. I > felt like I sounded like a moron. The best way to describe it is with an > example. So, I may be wanting to say the word " dog " but instead, I would > say, " you know... the furry animal, with for legs that says woof. " But the > word dog was just not there. I'll never forget one day when I was in PT. I > had been off Topamax for a while and decided to go back on it. I couldn't > find anything that worked any better for the neuropathy with side effects I > could tolerate. I was laying on the mat, trying to have a conversation with > my PT and I could hardly get a word out. That is when it struck me just how > bad the word finding was that I had been dealing with. I had just gotten > used to it. But at that moment, it reduced me to tears. I could hardly get > a > single word out other than a preposition. SO frustrating. I stuck with it > for a while, and eventually, I hated the side effects so much and it didn't > seem to control my pain as well as it once had, so I quit. > 3) tingling in my extremities and face. This was most noticeable when I > first started taking it (or right after a dose increase) or during cold > weather. It was not horrible. Most often when I would notice it, I would > think I had a stray hair tickling my face. I would keep trying to brush it > away, only to eventually realize it was the tingling from the topamax. Not > bad, not too annoying. For some reason, it seemed more prevalent during > really cold weather. > > All in all, this is the med I have best been able to tolerate over the > years. I don't know if I could stand the word-finding problems if I took it > again. It took a LONG time for that side effect to resolve. And I'm not > sure > that it has fully resolved. I have read several sites that say that this > med > can cause permanent changes in the brain. I still don't feel the same > mentally as I did before I took it. I do know that the word-finding issue > and other language issues took more than a year off of it before I felt > like > they were to the point I was pretty close to before I took it. Then again, > I > took it for 10 years or more. > > Jenn > > On Fri, Aug 19, 2011 at 10:09 PM, randeejae@... > wrote: > > > ** > > > > > > Hi all, > > Has anyone used topomax for pain control and, if so, what was your > > experience? Thanks. Randee > > > > Sent from my Verizon Wireless Phone > > > > [Non-text portions of this message have been removed] > > > > > > > > [Non-text portions of this message have been removed] > > ------------------------------------ > > > NOT MEDICAL ADVICE. We Are Not Doctors. > Need help with list?Email Darlene: darlene_self@... or > : hollygolightly1916@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2011 Report Share Posted August 21, 2011 I had good luck with Cymbalta too. Just too expensive and nit enuf benefit to justify the expense. If neurontin & cymbalta are controlling her pain well & weight is the only real side effect, IMHO, I would leave well enuf alone and concentrate on diet & exercise. Although, at least with Depakote, some ppl will never plateau with the weight gain. I gained 40# in 6 mos & was still gaining. That is y I quit that med, even tho I had good pain control. It never would have stopped. Some ppl on Depakote will just continue to gain. I was one of them. Besides, doesn't do any good to b skinny if u r miserable in pain. Hopefully the physiatrist will have some ideas. But if the pain is managed well enuf so she can exercise, I would do that route first. I know just going it is my problem. Is a personal trainer a possibility? Maybe someone that could meet her at the university gym? Or maybe she could find someone on campus that is really into it to b her " gym buddy " & hold her accountable. I know I'm more likely to go if I have a scheduled meeting with a friend. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > Thanks, Jenn...the pain is pretty well controlled with the neurontin so > weight loss might not be a good reason for her to switch to something with so > many annoying effects. Switching from Prozac to Cymbalta has helped her > pain as well. She will see a physiatrist for the first time in October..i > think that would be the right MD to follow her long term..and I will ask her, > if she wants, to raise the issue with him. Randee > > > In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, > jlbobin@... writes: > > Randee, > > I was in college most of the time when I took it and I managed to get used > to the effects it had on my language center. Most people knew it was an > issue for me and would just give me the word I was looking for. I also > talked to my profs at the beginning of class. I was also registered with > disability services for my MPH. I was allowed extra time on tests and took > them separate from the class. I didn't necessarily take them at a different > time, often, just in an empty classroom nearby. Just so I could have > complete quiet so someone's sniffle, cough, vibrating cell phone or > question > to the prof didn't make the word I just searched for disappear. It worked > out well and all my profs were very accommodating. While I hated the > language issues Topamax caused, at the time, it gave me the best pain > control with the most tolerable side effects. I guess after having tried so > many meds, dealing with the speech issue was the lesser of the evils when > the others caused so many more problems. I remember when I took Tegretol > (carbamepazine). I felt like I was running in slow motion. Unfortunately, > it > wasn't just my perception. Most people said I talked like I was in slow > motion too. So, even though it is annoying, it is possible to work around > it > with college. And it may be less annoying than different side effects > caused > by the alternate meds. > > Jenn > > > >> ** >> >> >> Thanks, Jenn. Your weight is fine I would say! I did ask for that reason >> as my daughter is suffering so from the weight gain from neurontin. She >> knows that it is most important to control her pain, but at 21 to have >> gained so very much in a year is really hard for her. And her appetite is >> so >> huge which makes it so much harder to lose weight. I did read about all >> these awful side effects on line but wanted to see what " real people " had >> to >> say. She is in college as you know so not being able to wordfind would > be a >> >> bit difficult as it was for you during your Masters program. Randee >> >> >> In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, >> jlbobin@... writes: >> >> Randee, >> >> I used Topamax for about 10 years. I was initially prescribed it to > control >> the chronic headaches i developed after a few hemorrhages from a vascular >> malformation in my brain. It just so happened that when I started having >> neuropathy from my TC, it was good for that too. It worked fairly well. >> Better than other things i have tried. There were 3 side effects that I >> dealt with when I took it. >> 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause >> weight gain. Amazing, huh? When I started taking it, I got down to a size >> 6. >> It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... >> after my last surgery, the weight came back on and it never fell off > again. >> >> 2) problems with word finding. This was probably the biggest problem. It >> can really screw with the language center of the brain, and it sure did >> mine. I had such problems giving oral presentations in my MPH program. I >> felt like I sounded like a moron. The best way to describe it is with an >> example. So, I may be wanting to say the word " dog " but instead, I would >> say, " you know... the furry animal, with for legs that says woof. " But > the >> word dog was just not there. I'll never forget one day when I was in PT. > I >> had been off Topamax for a while and decided to go back on it. I couldn't >> find anything that worked any better for the neuropathy with side > effects I >> could tolerate. I was laying on the mat, trying to have a conversation > with >> my PT and I could hardly get a word out. That is when it struck me just > how >> bad the word finding was that I had been dealing with. I had just gotten >> used to it. But at that moment, it reduced me to tears. I could hardly > get >> a >> single word out other than a preposition. SO frustrating. I stuck with > it >> for a while, and eventually, I hated the side effects so much and it > didn't >> seem to control my pain as well as it once had, so I quit. >> 3) tingling in my extremities and face. This was most noticeable when I >> first started taking it (or right after a dose increase) or during cold >> weather. It was not horrible. Most often when I would notice it, I would >> think I had a stray hair tickling my face. I would keep trying to brush > it >> away, only to eventually realize it was the tingling from the topamax. > Not >> bad, not too annoying. For some reason, it seemed more prevalent during >> really cold weather. >> >> All in all, this is the med I have best been able to tolerate over the >> years. I don't know if I could stand the word-finding problems if I took > it >> again. It took a LONG time for that side effect to resolve. And I'm not >> sure >> that it has fully resolved. I have read several sites that say that this >> med >> can cause permanent changes in the brain. I still don't feel the same >> mentally as I did before I took it. I do know that the word-finding issue >> and other language issues took more than a year off of it before I felt >> like >> they were to the point I was pretty close to before I took it. Then > again, >> I >> took it for 10 years or more. >> >> Jenn >> >> On Fri, Aug 19, 2011 at 10:09 PM, randeejae@... >> wrote: >> >> > ** >> > >> > >> > Hi all, >> > Has anyone used topomax for pain control and, if so, what was your >> > experience? Thanks. Randee >> > >> > Sent from my Verizon Wireless Phone >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2011 Report Share Posted August 21, 2011 yes, we agree and is trying hard..so hard between the slowing of the metabolism and the increase in apetite. My husband and I estimate that she has gained maybe 60 pounds in the last year but yes, her pain is well controlled now and nothing is worth giving that up. Hopefully, she will make some progress and find the motivation to do some exercise as well. A personal trainer is not in the picture but she has a gym right there in her apt. building. We are hoping the weight gain will not continue. Thanks for all the feedback! Randee In a message dated 8/20/2011 6:28:29 P.M. Central Daylight Time, jlbobin@... writes: I had good luck with Cymbalta too. Just too expensive and nit enuf benefit to justify the expense. If neurontin & cymbalta are controlling her pain well & weight is the only real side effect, IMHO, I would leave well enuf alone and concentrate on diet & exercise. Although, at least with Depakote, some ppl will never plateau with the weight gain. I gained 40# in 6 mos & was still gaining. That is y I quit that med, even tho I had good pain control. It never would have stopped. Some ppl on Depakote will just continue to gain. I was one of them. Besides, doesn't do any good to b skinny if u r miserable in pain. Hopefully the physiatrist will have some ideas. But if the pain is managed well enuf so she can exercise, I would do that route first. I know just going it is my problem. Is a personal trainer a possibility? Maybe someone that could meet her at the university gym? Or maybe she could find someone on campus that is really into it to b her " gym buddy " & hold her accountable. I know I'm more likely to go if I have a scheduled meeting with a friend. Jenn ~~~Sent from my Samsung Infuse 4G~~~ On Aug 20, 2011 5:25 PM, <_Randeejae@..._ (mailto:Randeejae@...) > wrote: > Thanks, Jenn...the pain is pretty well controlled with the neurontin so > weight loss might not be a good reason for her to switch to something with so > many annoying effects. Switching from Prozac to Cymbalta has helped her > pain as well. She will see a physiatrist for the first time in October..i > think that would be the right MD to follow her long term..and I will ask her, > if she wants, to raise the issue with him. Randee > > > In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, > _jlbobin@..._ (mailto:jlbobin@...) writes: > > Randee, > > I was in college most of the time when I took it and I managed to get used > to the effects it had on my language center. Most people knew it was an > issue for me and would just give me the word I was looking for. I also > talked to my profs at the beginning of class. I was also registered with > disability services for my MPH. I was allowed extra time on tests and took > them separate from the class. I didn't necessarily take them at a different > time, often, just in an empty classroom nearby. Just so I could have > complete quiet so someone's sniffle, cough, vibrating cell phone or > question > to the prof didn't make the word I just searched for disappear. It worked > out well and all my profs were very accommodating. While I hated the > language issues Topamax caused, at the time, it gave me the best pain > control with the most tolerable side effects. I guess after having tried so > many meds, dealing with the speech issue was the lesser of the evils when > the others caused so many more problems. I remember when I took Tegretol > (carbamepazine). I felt like I was running in slow motion. Unfortunately, > it > wasn't just my perception. Most people said I talked like I was in slow > motion too. So, even though it is annoying, it is possible to work around > it > with college. And it may be less annoying than different side effects > caused > by the alternate meds. > > Jenn > > On Sat, Aug 20, 2011 at 9:49 AM, <_Randeejae@..._ (mailto:Randeejae@...) > wrote: > >> ** >> >> >> Thanks, Jenn. Your weight is fine I would say! I did ask for that reason >> as my daughter is suffering so from the weight gain from neurontin. She >> knows that it is most important to control her pain, but at 21 to have >> gained so very much in a year is really hard for her. And her appetite is >> so >> huge which makes it so much harder to lose weight. I did read about all >> these awful side effects on line but wanted to see what " real people " had >> to >> say. She is in college as you know so not being able to wordfind would > be a >> >> bit difficult as it was for you during your Masters program. Randee >> >> >> In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, >> _jlbobin@..._ (mailto:jlbobin@...) writes: >> >> Randee, >> >> I used Topamax for about 10 years. I was initially prescribed it to > control >> the chronic headaches i developed after a few hemorrhages from a vascular >> malformation in my brain. It just so happened that when I started having >> neuropathy from my TC, it was good for that too. It worked fairly well. >> Better than other things i have tried. There were 3 side effects that I >> dealt with when I took it. >> 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause >> weight gain. Amazing, huh? When I started taking it, I got down to a size >> 6. >> It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... >> after my last surgery, the weight came back on and it never fell off > again. >> >> 2) problems with word finding. This was probably the biggest problem. It >> can really screw with the language center of the brain, and it sure did >> mine. I had such problems giving oral presentations in my MPH program. I >> felt like I sounded like a moron. The best way to describe it is with an >> example. So, I may be wanting to say the word " dog " but instead, I would >> say, " you know... the furry animal, with for legs that says woof. " But > the >> word dog was just not there. I'll never forget one day when I was in PT. > I >> had been off Topamax for a while and decided to go back on it. I couldn't >> find anything that worked any better for the neuropathy with side > effects I >> could tolerate. I was laying on the mat, trying to have a conversation > with >> my PT and I could hardly get a word out. That is when it struck me just > how >> bad the word finding was that I had been dealing with. I had just gotten >> used to it. But at that moment, it reduced me to tears. I could hardly > get >> a >> single word out other than a preposition. SO frustrating. I stuck with > it >> for a while, and eventually, I hated the side effects so much and it > didn't >> seem to control my pain as well as it once had, so I quit. >> 3) tingling in my extremities and face. This was most noticeable when I >> first started taking it (or right after a dose increase) or during cold >> weather. It was not horrible. Most often when I would notice it, I would >> think I had a stray hair tickling my face. I would keep trying to brush > it >> away, only to eventually realize it was the tingling from the topamax. > Not >> bad, not too annoying. For some reason, it seemed more prevalent during >> really cold weather. >> >> All in all, this is the med I have best been able to tolerate over the >> years. I don't know if I could stand the word-finding problems if I took > it >> again. It took a LONG time for that side effect to resolve. And I'm not >> sure >> that it has fully resolved. I have read several sites that say that this >> med >> can cause permanent changes in the brain. I still don't feel the same >> mentally as I did before I took it. I do know that the word-finding issue >> and other language issues took more than a year off of it before I felt >> like >> they were to the point I was pretty close to before I took it. Then > again, >> I >> took it for 10 years or more. >> >> Jenn >> >> On Fri, Aug 19, 2011 at 10:09 PM, _randeejae@..._ (mailto:randeejae@...) >> <_Randeejae@..._ (mailto:Randeejae@...) >wrote: >> >> > ** >> > >> > >> > Hi all, >> > Has anyone used topomax for pain control and, if so, what was your >> > experience? Thanks. Randee >> > >> > Sent from my Verizon Wireless Phone >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 I wish having a gym in the complex was all it took to get one to exercise. When I lived in the house previous to my loft, I used to say I didn't exercise because I would have to drive somewhere to do it and that was inconvenient. When I saw that my loft had a treadmill in the gym under my building, I said that I was surely start walking the treadmill every other day. Unfortunately, that hasn't happened in the 3+ years I've lived here. I always have some reason or another - busy, tired, UTI, don't want to, don't feel like it.... I've used them all. I wish I liked to exercise. I envy those kind of people. The only thing that has ever motivated me to exercise was my wedding. I went to the gym every other day for a year. I was at my heaviest when I got engaged and didn't want to be that weight when I got married. Before I was dealing with TC, while I still didn't love exercise, I did enjoy jogging (especially when I was mad or had a bad day) and hiking. I used to live close to Kennesaw Mtn, and one summer, I hiked that every other day and enjoyed it. Unfortunately, the only two forms of exercise I ever enjoyed are not accessible to me anymore. There is a walking path that was made close to my loft a few months after I moved in. I said I was going to start rolling that every other day - or even just once a week. But, haven't yet managed to do that either. If only I had someone that was willing to go with me... or is that just another excuse that won't happen even when I find someone? I suppose I'll find out. I have two friends that are willing to go... but this summer has just been too hot. Hopefully we'll start when it eventually gets below 85 (although it feels like that's never going to happen). Jenn > ** > > > yes, we agree and is trying hard..so hard between the slowing of the > > metabolism and the increase in apetite. My husband and I estimate that > she has gained maybe 60 pounds in the last year but yes, her pain is well > controlled now and nothing is worth giving that up. Hopefully, she will > make > some progress and find the motivation to do some exercise as well. A > personal trainer is not in the picture but she has a gym right there in her > apt. > building. We are hoping the weight gain will not continue. Thanks for > all the feedback! Randee > > > In a message dated 8/20/2011 6:28:29 P.M. Central Daylight Time, > jlbobin@... writes: > > I had good luck with Cymbalta too. Just too expensive and nit enuf benefit > to justify the expense. If neurontin & cymbalta are controlling her pain > well & weight is the only real side effect, IMHO, I would leave well enuf > alone and concentrate on diet & exercise. Although, at least with Depakote, > some ppl will never plateau with the weight gain. I gained 40# in 6 mos & > was still gaining. That is y I quit that med, even tho I had good pain > control. It never would have stopped. Some ppl on Depakote will just > continue to gain. I was one of them. > > Besides, doesn't do any good to b skinny if u r miserable in pain. > Hopefully the physiatrist will have some ideas. But if the pain is managed > well enuf so she can exercise, I would do that route first. I know just > going it is my problem. Is a personal trainer a possibility? Maybe someone > that could meet her at the university gym? Or maybe she could find someone > on campus that is really into it to b her " gym buddy " & hold her > accountable. I know I'm more likely to go if I have a scheduled meeting > with > a friend. > > Jenn > > ~~~Sent from my Samsung Infuse 4G~~~ > On Aug 20, 2011 5:25 PM, <_Randeejae@..._ (mailto:Randeejae@...) > > > wrote: > > Thanks, Jenn...the pain is pretty well controlled with the neurontin so > > weight loss might not be a good reason for her to switch to something > with > so > > many annoying effects. Switching from Prozac to Cymbalta has helped her > > pain as well. She will see a physiatrist for the first time in October..i > > think that would be the right MD to follow her long term..and I will ask > her, > > if she wants, to raise the issue with him. Randee > > > > > > In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, > > _jlbobin@..._ (mailto:jlbobin@...) writes: > > > > Randee, > > > > I was in college most of the time when I took it and I managed to get > used > > to the effects it had on my language center. Most people knew it was an > > issue for me and would just give me the word I was looking for. I also > > talked to my profs at the beginning of class. I was also registered with > > disability services for my MPH. I was allowed extra time on tests and > took > > them separate from the class. I didn't necessarily take them at a > different > > time, often, just in an empty classroom nearby. Just so I could have > > complete quiet so someone's sniffle, cough, vibrating cell phone or > > question > > to the prof didn't make the word I just searched for disappear. It worked > > out well and all my profs were very accommodating. While I hated the > > language issues Topamax caused, at the time, it gave me the best pain > > control with the most tolerable side effects. I guess after having tried > so > > many meds, dealing with the speech issue was the lesser of the evils when > > the others caused so many more problems. I remember when I took Tegretol > > (carbamepazine). I felt like I was running in slow motion. Unfortunately, > > it > > wasn't just my perception. Most people said I talked like I was in slow > > motion too. So, even though it is annoying, it is possible to work around > > it > > with college. And it may be less annoying than different side effects > > caused > > by the alternate meds. > > > > Jenn > > > > On Sat, Aug 20, 2011 at 9:49 AM, <_Randeejae@..._ > (mailto:Randeejae@...) > wrote: > > > >> ** > >> > >> > >> Thanks, Jenn. Your weight is fine I would say! I did ask for that reason > >> as my daughter is suffering so from the weight gain from neurontin. She > >> knows that it is most important to control her pain, but at 21 to have > >> gained so very much in a year is really hard for her. And her appetite > is > >> so > >> huge which makes it so much harder to lose weight. I did read about all > >> these awful side effects on line but wanted to see what " real people " > had > >> to > >> say. She is in college as you know so not being able to wordfind would > > be a > >> > >> bit difficult as it was for you during your Masters program. Randee > >> > >> > >> In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, > >> _jlbobin@..._ (mailto:jlbobin@...) writes: > >> > >> Randee, > >> > >> I used Topamax for about 10 years. I was initially prescribed it to > > control > >> the chronic headaches i developed after a few hemorrhages from a > vascular > >> malformation in my brain. It just so happened that when I started having > >> neuropathy from my TC, it was good for that too. It worked fairly well. > >> Better than other things i have tried. There were 3 side effects that I > >> dealt with when I took it. > >> 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause > >> weight gain. Amazing, huh? When I started taking it, I got down to a > size > >> 6. > >> It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... > >> after my last surgery, the weight came back on and it never fell off > > again. > >> > >> 2) problems with word finding. This was probably the biggest problem. It > >> can really screw with the language center of the brain, and it sure did > >> mine. I had such problems giving oral presentations in my MPH program. I > >> felt like I sounded like a moron. The best way to describe it is with an > >> example. So, I may be wanting to say the word " dog " but instead, I > would > >> say, " you know... the furry animal, with for legs that says woof. " But > > the > >> word dog was just not there. I'll never forget one day when I was in PT. > > I > >> had been off Topamax for a while and decided to go back on it. I > couldn't > >> find anything that worked any better for the neuropathy with side > > effects I > >> could tolerate. I was laying on the mat, trying to have a conversation > > with > >> my PT and I could hardly get a word out. That is when it struck me just > > how > >> bad the word finding was that I had been dealing with. I had just gotten > >> used to it. But at that moment, it reduced me to tears. I could hardly > > get > >> a > >> single word out other than a preposition. SO frustrating. I stuck with > > it > >> for a while, and eventually, I hated the side effects so much and it > > didn't > >> seem to control my pain as well as it once had, so I quit. > >> 3) tingling in my extremities and face. This was most noticeable when I > >> first started taking it (or right after a dose increase) or during cold > >> weather. It was not horrible. Most often when I would notice it, I > would > >> think I had a stray hair tickling my face. I would keep trying to brush > > it > >> away, only to eventually realize it was the tingling from the topamax. > > Not > >> bad, not too annoying. For some reason, it seemed more prevalent during > >> really cold weather. > >> > >> All in all, this is the med I have best been able to tolerate over the > >> years. I don't know if I could stand the word-finding problems if I took > > it > >> again. It took a LONG time for that side effect to resolve. And I'm not > >> sure > >> that it has fully resolved. I have read several sites that say that > this > >> med > >> can cause permanent changes in the brain. I still don't feel the same > >> mentally as I did before I took it. I do know that the word-finding > issue > >> and other language issues took more than a year off of it before I felt > >> like > >> they were to the point I was pretty close to before I took it. Then > > again, > >> I > >> took it for 10 years or more. > >> > >> Jenn > >> > >> On Fri, Aug 19, 2011 at 10:09 PM, _randeejae@..._ > (mailto:randeejae@...) > >> <_Randeejae@..._ (mailto:Randeejae@...) >wrote: > > >> > >> > ** > >> > > >> > > >> > Hi all, > >> > Has anyone used topomax for pain control and, if so, what was your > >> > experience? Thanks. Randee > >> > > >> > Sent from my Verizon Wireless Phone > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 I recently had to drop Topamax because not only was it destroying my ability to speak/write, it was starting to cause severe sleep issues. It was sad because it did work so well for nerve pain. I have reduced the dosage from 400mg a day to 200mg and trying to switch to Zonegram. Zonegram is not helping my sleep problems either though, so I may just be stuck with the pain. M. > Hi all, > Has anyone used topomax for pain control and, if so, what was your experience? Â Thanks. Â Randee > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 LOL Don't I know it...my treadmill was in the rec room..sitting there quietly, not bothering anyone and totally ignored! In a message dated 8/22/2011 10:00:52 P.M. Central Daylight Time, jlbobin@... writes: I wish having a gym in the complex was all it took to get one to exercise. When I lived in the house previous to my loft, I used to say I didn't exercise because I would have to drive somewhere to do it and that was inconvenient. When I saw that my loft had a treadmill in the gym under my building, I said that I was surely start walking the treadmill every other day. Unfortunately, that hasn't happened in the 3+ years I've lived here. I always have some reason or another - busy, tired, UTI, don't want to, don't feel like it.... I've used them all. I wish I liked to exercise. I envy those kind of people. The only thing that has ever motivated me to exercise was my wedding. I went to the gym every other day for a year. I was at my heaviest when I got engaged and didn't want to be that weight when I got married. Before I was dealing with TC, while I still didn't love exercise, I did enjoy jogging (especially when I was mad or had a bad day) and hiking. I used to live close to Kennesaw Mtn, and one summer, I hiked that every other day and enjoyed it. Unfortunately, the only two forms of exercise I ever enjoyed are not accessible to me anymore. There is a walking path that was made close to my loft a few months after I moved in. I said I was going to start rolling that every other day - or even just once a week. But, haven't yet managed to do that either. If only I had someone that was willing to go with me... or is that just another excuse that won't happen even when I find someone? I suppose I'll find out. I have two friends that are willing to go... but this summer has just been too hot. Hopefully we'll start when it eventually gets below 85 (although it feels like that's never going to happen). Jenn > ** > > > yes, we agree and is trying hard..so hard between the slowing of the > > metabolism and the increase in apetite. My husband and I estimate that > she has gained maybe 60 pounds in the last year but yes, her pain is well > controlled now and nothing is worth giving that up. Hopefully, she will > make > some progress and find the motivation to do some exercise as well. A > personal trainer is not in the picture but she has a gym right there in her > apt. > building. We are hoping the weight gain will not continue. Thanks for > all the feedback! Randee > > > In a message dated 8/20/2011 6:28:29 P.M. Central Daylight Time, > jlbobin@... writes: > > I had good luck with Cymbalta too. Just too expensive and nit enuf benefit > to justify the expense. If neurontin & cymbalta are controlling her pain > well & weight is the only real side effect, IMHO, I would leave well enuf > alone and concentrate on diet & exercise. Although, at least with Depakote, > some ppl will never plateau with the weight gain. I gained 40# in 6 mos & > was still gaining. That is y I quit that med, even tho I had good pain > control. It never would have stopped. Some ppl on Depakote will just > continue to gain. I was one of them. > > Besides, doesn't do any good to b skinny if u r miserable in pain. > Hopefully the physiatrist will have some ideas. But if the pain is managed > well enuf so she can exercise, I would do that route first. I know just > going it is my problem. Is a personal trainer a possibility? Maybe someone > that could meet her at the university gym? Or maybe she could find someone > on campus that is really into it to b her " gym buddy " & hold her > accountable. I know I'm more likely to go if I have a scheduled meeting > with > a friend. > > Jenn > > ~~~Sent from my Samsung Infuse 4G~~~ > On Aug 20, 2011 5:25 PM, <_Randeejae@..._ (mailto:Randeejae@...) > > > wrote: > > Thanks, Jenn...the pain is pretty well controlled with the neurontin so > > weight loss might not be a good reason for her to switch to something > with > so > > many annoying effects. Switching from Prozac to Cymbalta has helped her > > pain as well. She will see a physiatrist for the first time in October..i > > think that would be the right MD to follow her long term..and I will ask > her, > > if she wants, to raise the issue with him. Randee > > > > > > In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, > > _jlbobin@..._ (mailto:jlbobin@...) writes: > > > > Randee, > > > > I was in college most of the time when I took it and I managed to get > used > > to the effects it had on my language center. Most people knew it was an > > issue for me and would just give me the word I was looking for. I also > > talked to my profs at the beginning of class. I was also registered with > > disability services for my MPH. I was allowed extra time on tests and > took > > them separate from the class. I didn't necessarily take them at a > different > > time, often, just in an empty classroom nearby. Just so I could have > > complete quiet so someone's sniffle, cough, vibrating cell phone or > > question > > to the prof didn't make the word I just searched for disappear. It worked > > out well and all my profs were very accommodating. While I hated the > > language issues Topamax caused, at the time, it gave me the best pain > > control with the most tolerable side effects. I guess after having tried > so > > many meds, dealing with the speech issue was the lesser of the evils when > > the others caused so many more problems. I remember when I took Tegretol > > (carbamepazine). I felt like I was running in slow motion. Unfortunately, > > it > > wasn't just my perception. Most people said I talked like I was in slow > > motion too. So, even though it is annoying, it is possible to work around > > it > > with college. And it may be less annoying than different side effects > > caused > > by the alternate meds. > > > > Jenn > > > > On Sat, Aug 20, 2011 at 9:49 AM, <_Randeejae@..._ > (mailto:Randeejae@...) > wrote: > > > >> ** > >> > >> > >> Thanks, Jenn. Your weight is fine I would say! I did ask for that reason > >> as my daughter is suffering so from the weight gain from neurontin. She > >> knows that it is most important to control her pain, but at 21 to have > >> gained so very much in a year is really hard for her. And her appetite > is > >> so > >> huge which makes it so much harder to lose weight. I did read about all > >> these awful side effects on line but wanted to see what " real people " > had > >> to > >> say. She is in college as you know so not being able to wordfind would > > be a > >> > >> bit difficult as it was for you during your Masters program. Randee > >> > >> > >> In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, > >> _jlbobin@..._ (mailto:jlbobin@...) writes: > >> > >> Randee, > >> > >> I used Topamax for about 10 years. I was initially prescribed it to > > control > >> the chronic headaches i developed after a few hemorrhages from a > vascular > >> malformation in my brain. It just so happened that when I started having > >> neuropathy from my TC, it was good for that too. It worked fairly well. > >> Better than other things i have tried. There were 3 side effects that I > >> dealt with when I took it. > >> 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause > >> weight gain. Amazing, huh? When I started taking it, I got down to a > size > >> 6. > >> It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... > >> after my last surgery, the weight came back on and it never fell off > > again. > >> > >> 2) problems with word finding. This was probably the biggest problem. It > >> can really screw with the language center of the brain, and it sure did > >> mine. I had such problems giving oral presentations in my MPH program. I > >> felt like I sounded like a moron. The best way to describe it is with an > >> example. So, I may be wanting to say the word " dog " but instead, I > would > >> say, " you know... the furry animal, with for legs that says woof. " But > > the > >> word dog was just not there. I'll never forget one day when I was in PT. > > I > >> had been off Topamax for a while and decided to go back on it. I > couldn't > >> find anything that worked any better for the neuropathy with side > > effects I > >> could tolerate. I was laying on the mat, trying to have a conversation > > with > >> my PT and I could hardly get a word out. That is when it struck me just > > how > >> bad the word finding was that I had been dealing with. I had just gotten > >> used to it. But at that moment, it reduced me to tears. I could hardly > > get > >> a > >> single word out other than a preposition. SO frustrating. I stuck with > > it > >> for a while, and eventually, I hated the side effects so much and it > > didn't > >> seem to control my pain as well as it once had, so I quit. > >> 3) tingling in my extremities and face. This was most noticeable when I > >> first started taking it (or right after a dose increase) or during cold > >> weather. It was not horrible. Most often when I would notice it, I > would > >> think I had a stray hair tickling my face. I would keep trying to brush > > it > >> away, only to eventually realize it was the tingling from the topamax. > > Not > >> bad, not too annoying. For some reason, it seemed more prevalent during > >> really cold weather. > >> > >> All in all, this is the med I have best been able to tolerate over the > >> years. I don't know if I could stand the word-finding problems if I took > > it > >> again. It took a LONG time for that side effect to resolve. And I'm not > >> sure > >> that it has fully resolved. I have read several sites that say that > this > >> med > >> can cause permanent changes in the brain. I still don't feel the same > >> mentally as I did before I took it. I do know that the word-finding > issue > >> and other language issues took more than a year off of it before I felt > >> like > >> they were to the point I was pretty close to before I took it. Then > > again, > >> I > >> took it for 10 years or more. > >> > >> Jenn > >> > >> On Fri, Aug 19, 2011 at 10:09 PM, _randeejae@..._ > (mailto:randeejae@...) > >> <_Randeejae@..._ (mailto:Randeejae@...) >wrote: > > >> > >> > ** > >> > > >> > > >> > Hi all, > >> > Has anyone used topomax for pain control and, if so, what was your > >> > experience? Thanks. Randee > >> > > >> > Sent from my Verizon Wireless Phone > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 havne't heard of Zonegram. Is that in the same class. I am assuming, , that the usual suspects didn't help ie lyrica, neurontin and now cymbalta and the other new antidepressants. The combo of neurontin and cymbalta is working well for pain for my girl..now anyway..we know these things can change. Randee In a message dated 8/22/2011 10:24:10 P.M. Central Daylight Time, mbmeiser@... writes: I recently had to drop Topamax because not only was it destroying my ability to speak/write, it was starting to cause severe sleep issues. It was sad because it did work so well for nerve pain. I have reduced the dosage from 400mg a day to 200mg and trying to switch to Zonegram. Zonegram is not helping my sleep problems either though, so I may just be stuck with the pain. M. On Fri, Aug 19, 2011 at 9:09 PM, _randeejae@..._ (mailto:randeejae@...) <_Randeejae@..._ (mailto:Randeejae@...) > wrote: > Hi all, > Has anyone used topomax for pain control and, if so, what was your experience? Thanks. Randee > > Sent from my Verizon Wireless Phone > > [Non-text portions of this message have been removed] > > > > ------------------------------------ > > NOT MEDICAL ADVICE. We Are Not Doctors. > Need help with list?Email Darlene: _darlene_self@..._ (mailto:darlene_self@...) or > : _hollygolightly1916@..._ (mailto:hollygolightly1916@...) > Yahoo! Groups Links > > > > -- M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 Do antidepressants really work for TCS? Honestly, I think the reason that a lot of us are anxious or depressed is because of the pain and numbness we're experiencing. I'm not trying to speak for everyone, I just think it would be better if these doctors would find a way to treat the source of the problem, not the reaction to it. Just my opinion. > Hi all, > Has anyone used topomax for pain control and, if so, what was your experience? Thanks. Randee > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 Sorry, I meant TSC. > Hi all, > Has anyone used topomax for pain control and, if so, what was your experience? Thanks. Randee > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 Jenn:     I can relate to everything you said. I have been a member of a gym for over 10 years. I started when my weight reached 123 (I'm 4'9 " ) and I was beginning to have mobility problems. At first I was going 4 days a week, weight training  with a personal trainer 2 days and doing either water aerobics or spinning the other 2. Finally got down to 98 and was really buff (at least my upper body was). Then my trainer and the water instructor quit ... I got another trainer and continued 2 days a week. The mobility problems continued to progress and I had to drop some exercises over time. I weighed 104 when I had my surgery in Jan. 2010. Now I am so pissed off at the negative results of the surgery, and frustrated, depressed. All the best quacks tell me is to keep doing resistance exercises 3 times a day - which I am not doing because I have seen NO progress. The only thing that keeps me going to the gym is that I am paying a bunch of $$$$ for the trainer. Money is a great motivator. My butt pain is worse than before surgery. Gabapentin (Neurontin) kept me awake (an idiosyncratic reaction), and mirtazepine and Lexapro (antidepressants) caused weight gain, all without significant pain reduction. I'm now into month #2 of Cymbalta, which isn't doing anything for the pain either although I have dropped 4 pounds (YAY). The pain isn't that bad, just annoying, so I'll probably give up the Cymbalta which is darned expensive, even with insurance.  To: tetheredspinalcord Sent: Monday, August 22, 2011 8:00 PM Subject: Re: Pain and topomax I wish having a gym in the complex was all it took to get one to exercise. When I lived in the house previous to my loft, I used to say I didn't exercise because I would have to drive somewhere to do it and that was inconvenient. When I saw that my loft had a treadmill in the gym under my building, I said that I was surely start walking the treadmill every other day. Unfortunately, that hasn't happened in the 3+ years I've lived here. I always have some reason or another - busy, tired, UTI, don't want to, don't feel like it.... I've used them all. I wish I liked to exercise. I envy those kind of people. The only thing that has ever motivated me to exercise was my wedding. I went to the gym every other day for a year. I was at my heaviest when I got engaged and didn't want to be that weight when I got married. Before I was dealing with TC, while I still didn't love exercise, I did enjoy jogging (especially when I was mad or had a bad day) and hiking. I used to live close to Kennesaw Mtn, and one summer, I hiked that every other day and enjoyed it. Unfortunately, the only two forms of exercise I ever enjoyed are not accessible to me anymore. There is a walking path that was made close to my loft a few months after I moved in. I said I was going to start rolling that every other day - or even just once a week. But, haven't yet managed to do that either. If only I had someone that was willing to go with me... or is that just another excuse that won't happen even when I find someone? I suppose I'll find out. I have two friends that are willing to go... but this summer has just been too hot. Hopefully we'll start when it eventually gets below 85 (although it feels like that's never going to happen). Jenn > ** > > > yes, we agree and is trying hard..so hard between the slowing of the > > metabolism and the increase in apetite. My husband and I estimate that > she has gained maybe 60 pounds in the last year but yes, her pain is well > controlled now and nothing is worth giving that up. Hopefully, she will > make > some progress and find the motivation to do some exercise as well. A > personal trainer is not in the picture but she has a gym right there in her > apt. > building. We are hoping the weight gain will not continue. Thanks for > all the feedback! Randee > > > In a message dated 8/20/2011 6:28:29 P.M. Central Daylight Time, > jlbobin@... writes: > > I had good luck with Cymbalta too. Just too expensive and nit enuf benefit > to justify the expense. If neurontin & cymbalta are controlling her pain > well & weight is the only real side effect, IMHO, I would leave well enuf > alone and concentrate on diet & exercise. Although, at least with Depakote, > some ppl will never plateau with the weight gain. I gained 40# in 6 mos & > was still gaining. That is y I quit that med, even tho I had good pain > control. It never would have stopped. Some ppl on Depakote will just > continue to gain. I was one of them. > > Besides, doesn't do any good to b skinny if u r miserable in pain. > Hopefully the physiatrist will have some ideas. But if the pain is managed > well enuf so she can exercise, I would do that route first. I know just > going it is my problem. Is a personal trainer a possibility? Maybe someone > that could meet her at the university gym? Or maybe she could find someone > on campus that is really into it to b her " gym buddy " & hold her > accountable. I know I'm more likely to go if I have a scheduled meeting > with > a friend. > > Jenn > > ~~~Sent from my Samsung Infuse 4G~~~ > On Aug 20, 2011 5:25 PM, <_Randeejae@..._ (mailto:Randeejae@...) > > > wrote: > > Thanks, Jenn...the pain is pretty well controlled with the neurontin so > > weight loss might not be a good reason for her to switch to something > with > so > > many annoying effects. Switching from Prozac to Cymbalta has helped her > > pain as well. She will see a physiatrist for the first time in October..i > > think that would be the right MD to follow her long term..and I will ask > her, > > if she wants, to raise the issue with him. Randee > > > > > > In a message dated 8/20/2011 12:35:50 P.M. Central Daylight Time, > > _jlbobin@..._ (mailto:jlbobin@...) writes: > > > > Randee, > > > > I was in college most of the time when I took it and I managed to get > used > > to the effects it had on my language center. Most people knew it was an > > issue for me and would just give me the word I was looking for. I also > > talked to my profs at the beginning of class. I was also registered with > > disability services for my MPH. I was allowed extra time on tests and > took > > them separate from the class. I didn't necessarily take them at a > different > > time, often, just in an empty classroom nearby. Just so I could have > > complete quiet so someone's sniffle, cough, vibrating cell phone or > > question > > to the prof didn't make the word I just searched for disappear. It worked > > out well and all my profs were very accommodating. While I hated the > > language issues Topamax caused, at the time, it gave me the best pain > > control with the most tolerable side effects. I guess after having tried > so > > many meds, dealing with the speech issue was the lesser of the evils when > > the others caused so many more problems. I remember when I took Tegretol > > (carbamepazine). I felt like I was running in slow motion. Unfortunately, > > it > > wasn't just my perception. Most people said I talked like I was in slow > > motion too. So, even though it is annoying, it is possible to work around > > it > > with college. And it may be less annoying than different side effects > > caused > > by the alternate meds. > > > > Jenn > > > > On Sat, Aug 20, 2011 at 9:49 AM, <_Randeejae@..._ > (mailto:Randeejae@...) > wrote: > > > >> ** > >> > >> > >> Thanks, Jenn. Your weight is fine I would say! I did ask for that reason > >> as my daughter is suffering so from the weight gain from neurontin. She > >> knows that it is most important to control her pain, but at 21 to have > >> gained so very much in a year is really hard for her. And her appetite > is > >> so > >> huge which makes it so much harder to lose weight. I did read about all > >> these awful side effects on line but wanted to see what " real people " > had > >> to > >> say. She is in college as you know so not being able to wordfind would > > be a > >> > >> bit difficult as it was for you during your Masters program. Randee > >> > >> > >> In a message dated 8/19/2011 11:05:23 P.M. Central Daylight Time, > >> _jlbobin@..._ (mailto:jlbobin@...) writes: > >> > >> Randee, > >> > >> I used Topamax for about 10 years. I was initially prescribed it to > > control > >> the chronic headaches i developed after a few hemorrhages from a > vascular > >> malformation in my brain. It just so happened that when I started having > >> neuropathy from my TC, it was good for that too. It worked fairly well. > >> Better than other things i have tried. There were 3 side effects that I > >> dealt with when I took it. > >> 1) weight loss. I know! I know! A Rx for neuropathy that doesn't cause > >> weight gain. Amazing, huh? When I started taking it, I got down to a > size > >> 6. > >> It was WONDERFUL! Gosh, how I miss it. Unfortunately, for some reason... > >> after my last surgery, the weight came back on and it never fell off > > again. > >> > >> 2) problems with word finding. This was probably the biggest problem. It > >> can really screw with the language center of the brain, and it sure did > >> mine. I had such problems giving oral presentations in my MPH program. I > >> felt like I sounded like a moron. The best way to describe it is with an > >> example. So, I may be wanting to say the word " dog " but instead, I > would > >> say, " you know... the furry animal, with for legs that says woof. " But > > the > >> word dog was just not there. I'll never forget one day when I was in PT. > > I > >> had been off Topamax for a while and decided to go back on it. I > couldn't > >> find anything that worked any better for the neuropathy with side > > effects I > >> could tolerate. I was laying on the mat, trying to have a conversation > > with > >> my PT and I could hardly get a word out. That is when it struck me just > > how > >> bad the word finding was that I had been dealing with. I had just gotten > >> used to it. But at that moment, it reduced me to tears. I could hardly > > get > >> a > >> single word out other than a preposition. SO frustrating. I stuck with > > it > >> for a while, and eventually, I hated the side effects so much and it > > didn't > >> seem to control my pain as well as it once had, so I quit. > >> 3) tingling in my extremities and face. This was most noticeable when I > >> first started taking it (or right after a dose increase) or during cold > >> weather. It was not horrible. Most often when I would notice it, I > would > >> think I had a stray hair tickling my face. I would keep trying to brush > > it > >> away, only to eventually realize it was the tingling from the topamax. > > Not > >> bad, not too annoying. For some reason, it seemed more prevalent during > >> really cold weather. > >> > >> All in all, this is the med I have best been able to tolerate over the > >> years. I don't know if I could stand the word-finding problems if I took > > it > >> again. It took a LONG time for that side effect to resolve. And I'm not > >> sure > >> that it has fully resolved. I have read several sites that say that > this > >> med > >> can cause permanent changes in the brain. I still don't feel the same > >> mentally as I did before I took it. I do know that the word-finding > issue > >> and other language issues took more than a year off of it before I felt > >> like > >> they were to the point I was pretty close to before I took it. Then > > again, > >> I > >> took it for 10 years or more. > >> > >> Jenn > >> > >> On Fri, Aug 19, 2011 at 10:09 PM, _randeejae@..._ > (mailto:randeejae@...) > >> <_Randeejae@..._ (mailto:Randeejae@...) >wrote: > > >> > >> > ** > >> > > >> > > >> > Hi all, > >> > Has anyone used topomax for pain control and, if so, what was your > >> > experience? Thanks. Randee > >> > > >> > Sent from my Verizon Wireless Phone > >> > > >> > Quote Link to comment Share on other sites More sharing options...
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