Guest guest Posted September 8, 2011 Report Share Posted September 8, 2011 Jan, I can't take the Savella because it isn't compatible with my blood thinner. That's not a good thing. Lyrica was " wonderful " but one of the side effects was total loss of bladder control. But for that, I'd be on it. Btw, I'm half Dutch. : ) >All i can say is try it , then decide to go on. I'm on Oxcarbazepine right now (don't know the difference between your Carbamazepine) and it helps me to function. But it's not giving me much pain relief. That's what I want to. >I am now on 3 times a day Carbamazepine 200, lyrica 75 and tramadol 50 mg.All low dose now. And not sleepy anymore only difficulties to stand up in the morning but i changed this dose three day's ago and feel better every hour and less pain in my legs. And thats what i want. I think we all want that. : ) >Lower the pain and by happy again. , I don't have fibro. That was already ruled out. It's definitely TC. I had it back in 1994 and had surgery for it, which put me in a wheelchair. The Dr. who did the surgery never told me that it could come back, which kind of ticks me off. It's better to know than to be blindsided. >I don't remember if you said you have some sort of " sensitization " ... they also call it fibromyalgia. .. I'm trying to get my Dr. to increase the Oxcarbazepine just to see if that makes a difference. I know several of you are on multiple meds but he's very conservative and (at this point) won't even discuss it. *sigh* >If senstitzation is the case then medications have to be on the high dose side to make an impact, and constantly being in pain does not regulate your system into " normal " mode. >The suspicion is (in my case) that I was in severe pain for so long that my brain is constantly sending " flight " signals now. Meaning now I experience all pain differently from a " normal " person. Complex Regional Pain Syndrome (most severe pain ever) is caused by sensitization which is gone even further. They are trying out a Ketamine coma for 10 days, and then infusions to " reset " the brain for CRPS. I'll do that. >Try looking up central sensitization syndrome... it requires higher doses of medications, and a combination treatment plan. I guess my point is that if you are not having your pain controlled this is not getting a chance to get better. I don't know if you have other options as far as physicians but you need someone who understands this syndrome/concept treatment. S'ok. : ) >Sorry.. this got rather long. My Dr. was very worried about my mood in regards to side effects (thoughts of suicide, etc.) but after a surgery in my early 20's (for a year I was in SO much pain that I wanted to die), I know what that feels like and I don't feel that way now. >I can tell you one thing, in February I did not want to wake up anymore. I was constantly in severe pain, I felt like I was 90. My WHOLE body had some kind of sensitization pain- joints, eyes, ears, back.. all over muscle pain. At this point that is mostly controlled and the hope is that if I stick to increasing my workout schedule by 10% weekly (starting slow) and sleeping better (insomnia and narcolepsy!) the pain will start even getting better, and I may go into a remission period. But the credit for my pain decrease goes to my physicians who started a combination treatment and change my narcotic med when needed (increase). No problem! I KNOW I need more. I just wish my Dr. was more open-minded to multiple meds because, honestly, that's what I feel I need. >Once again, sorry for the crazy rant here, I just want to make sure you understand that you may need more to start getting better. Thanks! >Take care, and feel free to comment! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 Jodi, The carbamazepine is only to reduce the shocks that you get when nerves give bad signals. And it seems it works fine with by me in combination with lyrica but it did his job too with neurotin I know if people do have elliptical problems ore dizziness walking upstairs the reaction on that is much stronger. Therefor you need to dose exactly the same everyday. Oxcarbazepine Incentives in the brains can cause seizures. Oxcarbazepine affects these incentives and thus helps certain epileptic seizures. It is used when there is a risk on to much sideeffects. But the working is the same for us as carbazepine. Just slow down the shocks thats why we take it. So it is not a bad choice of your dockter. We are not epileptic so it wil not make that risk bigger cause the working on that has no effect on us. Hope i explain it wel. JW -----Oorspronkelijk bericht----- From: J.J. Sent: Thursday, September 08, 2011 9:58 PM To: tetheredspinalcord Subject: Jodi - Savella Jan, I can't take the Savella because it isn't compatible with my blood thinner. That's not a good thing. Lyrica was " wonderful " but one of the side effects was total loss of bladder control. But for that, I'd be on it. Btw, I'm half Dutch. : ) >All i can say is try it , then decide to go on. I'm on Oxcarbazepine right now (don't know the difference between your Carbamazepine) and it helps me to function. But it's not giving me much pain relief. That's what I want to. >I am now on 3 times a day Carbamazepine 200, lyrica 75 and tramadol 50 >mg.All low dose now. And not sleepy anymore only difficulties to stand up >in the morning but i changed this dose three day's ago and feel better >every hour and less pain in my legs. And thats what i want. I think we all want that. : ) >Lower the pain and by happy again. , I don't have fibro. That was already ruled out. It's definitely TC. I had it back in 1994 and had surgery for it, which put me in a wheelchair. The Dr. who did the surgery never told me that it could come back, which kind of ticks me off. It's better to know than to be blindsided. >I don't remember if you said you have some sort of " sensitization " ... they >also call it fibromyalgia. .. I'm trying to get my Dr. to increase the Oxcarbazepine just to see if that makes a difference. I know several of you are on multiple meds but he's very conservative and (at this point) won't even discuss it. *sigh* >If senstitzation is the case then medications have to be on the high dose >side to make an impact, and constantly being in pain does not regulate your >system into " normal " mode. >The suspicion is (in my case) that I was in severe pain for so long that >my brain is constantly sending " flight " signals now. Meaning now I >experience all pain differently from a " normal " person. Complex Regional >Pain Syndrome (most severe pain ever) is caused by sensitization which is >gone even further. They are trying out a Ketamine coma for 10 days, and >then infusions to " reset " the brain for CRPS. I'll do that. >Try looking up central sensitization syndrome... it requires higher doses >of medications, and a combination treatment plan. I guess my point is that >if you are not having your pain controlled this is not getting a chance to >get better. I don't know if you have other options as far as physicians but >you need someone who understands this syndrome/concept treatment. S'ok. : ) >Sorry.. this got rather long. My Dr. was very worried about my mood in regards to side effects (thoughts of suicide, etc.) but after a surgery in my early 20's (for a year I was in SO much pain that I wanted to die), I know what that feels like and I don't feel that way now. >I can tell you one thing, in February I did not want to wake up anymore. I >was constantly in severe pain, I felt like I was 90. My WHOLE body had some >kind of sensitization pain- joints, eyes, ears, back.. all over muscle >pain. At this point that is mostly controlled and the hope is that if I >stick to increasing my workout schedule by 10% weekly (starting slow) and >sleeping better (insomnia and narcolepsy!) the pain will start even getting >better, and I may go into a remission period. But the credit for my pain >decrease goes to my physicians who started a combination treatment and >change my narcotic med when needed (increase). No problem! I KNOW I need more. I just wish my Dr. was more open-minded to multiple meds because, honestly, that's what I feel I need. >Once again, sorry for the crazy rant here, I just want to make sure you >understand that you may need more to start getting better. Thanks! >Take care, and feel free to comment! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 So happy to hear you are doing better!!! Subject: Jodi - Savella To: tetheredspinalcord Date: Thursday, September 8, 2011, 2:58 PM  Jan, I can't take the Savella because it isn't compatible with my blood thinner. That's not a good thing. Lyrica was " wonderful " but one of the side effects was total loss of bladder control. But for that, I'd be on it. Btw, I'm half Dutch. : ) >All i can say is try it , then decide to go on. I'm on Oxcarbazepine right now (don't know the difference between your  Carbamazepine) and it helps me to function. But it's not giving me much pain relief. That's  what I want to. >I am now on 3 times a day Carbamazepine 200, lyrica 75 and tramadol 50 mg.All low dose now. And not sleepy anymore only difficulties to stand up in the morning but i changed this dose three day's ago and feel better every hour and less pain in my legs. And thats what i want. I think we all want that. : ) >Lower the pain and by happy again. , I don't have fibro. That was already ruled out. It's definitely TC. I had it back in 1994 and had surgery for it, which put me in a wheelchair. The Dr. who did the surgery never told me that it could come back, which kind of ticks me off. It's better to know than to be blindsided. >I don't remember if you said you have some sort of " sensitization " ... they also call it fibromyalgia. .. I'm trying to get my Dr. to increase the Oxcarbazepine just to see if that makes a difference. I know several of you are on multiple meds but he's very conservative and (at this point) won't even discuss it. *sigh* >If senstitzation is the case then medications have to be on the high dose side to make an impact, and constantly being in pain does not regulate your system into " normal " mode. >The suspicion is (in my case) that I was in severe pain for so long that my brain is constantly sending " flight " signals now. Meaning now I experience all pain differently from a " normal " person. Complex Regional Pain Syndrome (most severe pain ever) is caused by sensitization which is gone even further. They are trying out a Ketamine coma for 10 days, and then infusions to " reset " the brain for CRPS. I'll do that. >Try looking up central sensitization syndrome... it requires higher doses of medications, and a combination treatment plan. I guess my point is that if you are not having your pain controlled this is not getting a chance to get better. I don't know if you have other options as far as physicians but you need someone who understands this syndrome/concept treatment. S'ok. : ) >Sorry.. this got rather long. My Dr. was very worried about my mood in regards to side effects (thoughts of suicide, etc.) but after a surgery in my early 20's (for a year I was in SO much pain that I wanted to die), I know what that feels like and I don't feel that way now. >I can tell you one thing, in February I did not want to wake up anymore. I was constantly in severe pain, I felt like I was 90. My WHOLE body had some kind of sensitization pain- joints, eyes, ears, back.. all over muscle pain. At this point that is mostly controlled and the hope is that if I stick to increasing my workout schedule by 10% weekly (starting slow) and sleeping better (insomnia and narcolepsy!) the pain will start even getting better, and I may go into a remission period. But the credit for my pain decrease goes to my physicians who started a combination treatment and change my narcotic med when needed (increase). No problem! I KNOW I need more. I just wish my Dr. was more open-minded to multiple meds because, honestly, that's what I feel I need. >Once again, sorry for the crazy rant here, I just want to make sure you understand that you may need more to start getting better. Thanks! >Take care, and feel free to comment! Jodi Quote Link to comment Share on other sites More sharing options...
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