Hi STEF you asked me if baclofen was helping me and I really wasn’t sure…but I am now. I was taking three of them three times a day…quite a lot. It makes me Very TIRED AND DIZZY, so I thought I would cut back to two three times a day. I finally figured out that was why my pain has been so bad the last few day. So…I am back to being in lala land, and taking three, three times a day. Hopefully the pain will let up. It won’t go away, but it gets some better. Hope this helps…I would try it if I were you…what have you got to lose?? Maybe the money for the script??
Hi, Mary.
My other page was messed up, so I had to get a new one. I appreciate you writing down your experience with this drug for me. I think I will take my chances with what I know has been working, for now, and hold onto the script. I can't afford any down time. My children and housework don't allow me to be tired or dizzy much. So the very tired and dizzy part would not be an option.
I see the APN at my PM Clinic again soon. Oh, these appointments make me nervous. Since Baclofen was prescribed by my Neuro, it is an optional drug. My pain clinic regimen isn't. I just typed in my status, something about my 2 p.m. pain spike not hitting yet. Well, 10 mins. after I typed that, it did. EWWWW! It made me so mad. But, I took my Neurontin, Diazepam and Oxycodone. Hopefully, in about 30 minutes, relief will come again for 2-3 hours.
My Dad would like it if we could attend the meeting that you are attending on the 5th. I think you e-mailed me the specifics, maybe to my old account. But, I cannot access my old e-mails. (I must give a special thanks here to Scott, Ben for trying diligently to fix the problem, and to Gloria for the concern she expressed to them that I was not up and running here).
I didn't notice until today that you had reviewed your medication just for my benefit, I am so grateful.
I sincerely hope I am able to attend the meeting, any place where answers may be found, I'm there, if I am able.
I don't get out much anymore. I guess that's why LWTN has sort of taken the place of Facebook for me. I still log in, but feel better understood here.
I am going to check your profile to see if you also take Neurontin. If I do take a notion to have my Baclofen filled, it occurred to me that I am afraid to start my Neurontin, and even though I am told I can take the two at once, the Neurontin already makes me need more sleep that the typical person. I used to only need 4-6 hrs. of sleep, when I was a hard driving professional, trying my best to climb up the food chain in the white collar world. I would never cut it there now, especially with the amount of sleep I need.
I wonder how you are, lady. I think I sent you a new friend request. I am trying to get all of my friend back which were on my old page, such kind and brave souls are here, don't you think? Anyone who is "Living with TN", can be no less.
Please update me on your condition via chat, e-mail to my new page, or on this Discussion Board. Let me know how you've been, as this post is a few days old now.
Hugs,
Stef
Hi Stef…I am still the same. I have an appt. on the 4th to meet with the Dr. that does the Gamma Knife. My second opinion Neurosurgeon wants me to see him before I decide on MVD. He says if it were him he would do the gamma knife. I am so confused. The NS at Vanderbilt said that would not be good because it takes months to work, sometimes it doesn’t work and if it does, sometimes the pain comes back. I am really confused. I am so looking forward to that support group meeting on the 5th. Let me know if you need the address again…I know it is from 10 to 12 on the 5th. I have the address too if you need it…just too lazy to get up now and get it. lol…Pain in manageable with all the meds, but the groggy feeling is not something I cannot stand. Hope you get to go to the meeting. I am positive it will be really good. Mary
Stef said:
Hi, Mary.
My other page was messed up, so I had to get a new one. I appreciate you writing down your experience with this drug for me. I think I will take my chances with what I know has been working, for now, and hold onto the script. I can't afford any down time. My children and housework don't allow me to be tired or dizzy much. So the very tired and dizzy part would not be an option.
I see the APN at my PM Clinic again soon. Oh, these appointments make me nervous. Since Baclofen was prescribed by my Neuro, it is an optional drug. My pain clinic regimen isn't. I just typed in my status, something about my 2 p.m. pain spike not hitting yet. Well, 10 mins. after I typed that, it did. EWWWW! It made me so mad. But, I took my Neurontin, Diazepam and Oxycodone. Hopefully, in about 30 minutes, relief will come again for 2-3 hours.
My Dad would like it if we could attend the meeting that you are attending on the 5th. I think you e-mailed me the specifics, maybe to my old account. But, I cannot access my old e-mails. (I must give a special thanks here to Scott, Ben for trying diligently to fix the problem, and to Gloria for the concern she expressed to them that I was not up and running here).
I didn't notice until today that you had reviewed your medication just for my benefit, I am so grateful.
I sincerely hope I am able to attend the meeting, any place where answers may be found, I'm there, if I am able.
I don't get out much anymore. I guess that's why LWTN has sort of taken the place of Facebook for me. I still log in, but feel better understood here.
I am going to check your profile to see if you also take Neurontin. If I do take a notion to have my Baclofen filled, it occurred to me that I am afraid to start my Neurontin, and even though I am told I can take the two at once, the Neurontin already makes me need more sleep that the typical person. I used to only need 4-6 hrs. of sleep, when I was a hard driving professional, trying my best to climb up the food chain in the white collar world. I would never cut it there now, especially with the amount of sleep I need.
I wonder how you are, lady. I think I sent you a new friend request. I am trying to get all of my friend back which were on my old page, such kind and brave souls are here, don't you think? Anyone who is "Living with TN", can be no less.
Please update me on your condition via chat, e-mail to my new page, or on this Discussion Board. Let me know how you've been, as this post is a few days old now.
Hugs,
Stef
Oh, I COMPLETELY UNDERSTAND. I've been there (too lazy to get up) DAILY!!!! When you get time, and feel like it, please forward me the address, or perhaps contact information regarding the meeting, as I cannot access the information on my old page.
I hope the side effects of your meds decrease and the grogginess lessens as the days go by, sweetheart.
One of the side effects of Oxycodone, I've found, or so I've been told, is that is makes me cranky. I think I'm cranky because I feel tired, not at my family and friends.
I am sorry to be so much trouble.
Thanks again,
Mary Miller said:
Hi Stef...I am still the same. I have an appt. on the 4th to meet with the Dr. that does the Gamma Knife. My second opinion Neurosurgeon wants me to see him before I decide on MVD. He says if it were him he would do the gamma knife. I am so confused. The NS at Vanderbilt said that would not be good because it takes months to work, sometimes it doesn't work and if it does, sometimes the pain comes back. I am really confused. I am so looking forward to that support group meeting on the 5th. Let me know if you need the address again..I know it is from 10 to 12 on the 5th. I have the address too if you need it....just too lazy to get up now and get it. lol..Pain in manageable with all the meds, but the groggy feeling is not something I cannot stand. Hope you get to go to the meeting. I am positive it will be really good. Mary
Stef said:
Hi, Mary.
My other page was messed up, so I had to get a new one. I appreciate you writing down your experience with this drug for me. I think I will take my chances with what I know has been working, for now, and hold onto the script. I can't afford any down time. My children and housework don't allow me to be tired or dizzy much. So the very tired and dizzy part would not be an option.
I see the APN at my PM Clinic again soon. Oh, these appointments make me nervous. Since Baclofen was prescribed by my Neuro, it is an optional drug. My pain clinic regimen isn't. I just typed in my status, something about my 2 p.m. pain spike not hitting yet. Well, 10 mins. after I typed that, it did. EWWWW! It made me so mad. But, I took my Neurontin, Diazepam and Oxycodone. Hopefully, in about 30 minutes, relief will come again for 2-3 hours.
My Dad would like it if we could attend the meeting that you are attending on the 5th. I think you e-mailed me the specifics, maybe to my old account. But, I cannot access my old e-mails. (I must give a special thanks here to Scott, Ben for trying diligently to fix the problem, and to Gloria for the concern she expressed to them that I was not up and running here).
I didn't notice until today that you had reviewed your medication just for my benefit, I am so grateful.
I sincerely hope I am able to attend the meeting, any place where answers may be found, I'm there, if I am able.
I don't get out much anymore. I guess that's why LWTN has sort of taken the place of Facebook for me. I still log in, but feel better understood here.
I am going to check your profile to see if you also take Neurontin. If I do take a notion to have my Baclofen filled, it occurred to me that I am afraid to start my Neurontin, and even though I am told I can take the two at once, the Neurontin already makes me need more sleep that the typical person. I used to only need 4-6 hrs. of sleep, when I was a hard driving professional, trying my best to climb up the food chain in the white collar world. I would never cut it there now, especially with the amount of sleep I need.
I wonder how you are, lady. I think I sent you a new friend request. I am trying to get all of my friend back which were on my old page, such kind and brave souls are here, don't you think? Anyone who is "Living with TN", can be no less.
Please update me on your condition via chat, e-mail to my new page, or on this Discussion Board. Let me know how you've been, as this post is a few days old now.
Hugs,
Stef
Hi again already…the address is 1004 N Highland Ave. Murfreesboro, Tn really hope you get to go.
Stef said:
Oh, I COMPLETELY UNDERSTAND. I've been there (too lazy to get up) DAILY!!!! When you get time, and feel like it, please forward me the address, or perhaps contact information regarding the meeting, as I cannot access the information on my old page.
I hope the side effects of your meds decrease and the grogginess lessens as the days go by, sweetheart.
One of the side effects of Oxycodone, I've found, or so I've been told, is that is makes me cranky. I think I'm cranky because I feel tired, not at my family and friends.
I am sorry to be so much trouble.
Thanks again,
Mary Miller said:Hi Stef...I am still the same. I have an appt. on the 4th to meet with the Dr. that does the Gamma Knife. My second opinion Neurosurgeon wants me to see him before I decide on MVD. He says if it were him he would do the gamma knife. I am so confused. The NS at Vanderbilt said that would not be good because it takes months to work, sometimes it doesn't work and if it does, sometimes the pain comes back. I am really confused. I am so looking forward to that support group meeting on the 5th. Let me know if you need the address again..I know it is from 10 to 12 on the 5th. I have the address too if you need it....just too lazy to get up now and get it. lol..Pain in manageable with all the meds, but the groggy feeling is not something I cannot stand. Hope you get to go to the meeting. I am positive it will be really good. Mary
Stef said:
Hi, Mary.
My other page was messed up, so I had to get a new one. I appreciate you writing down your experience with this drug for me. I think I will take my chances with what I know has been working, for now, and hold onto the script. I can't afford any down time. My children and housework don't allow me to be tired or dizzy much. So the very tired and dizzy part would not be an option.
I see the APN at my PM Clinic again soon. Oh, these appointments make me nervous. Since Baclofen was prescribed by my Neuro, it is an optional drug. My pain clinic regimen isn't. I just typed in my status, something about my 2 p.m. pain spike not hitting yet. Well, 10 mins. after I typed that, it did. EWWWW! It made me so mad. But, I took my Neurontin, Diazepam and Oxycodone. Hopefully, in about 30 minutes, relief will come again for 2-3 hours.
My Dad would like it if we could attend the meeting that you are attending on the 5th. I think you e-mailed me the specifics, maybe to my old account. But, I cannot access my old e-mails. (I must give a special thanks here to Scott, Ben for trying diligently to fix the problem, and to Gloria for the concern she expressed to them that I was not up and running here).
I didn't notice until today that you had reviewed your medication just for my benefit, I am so grateful.
I sincerely hope I am able to attend the meeting, any place where answers may be found, I'm there, if I am able.
I don't get out much anymore. I guess that's why LWTN has sort of taken the place of Facebook for me. I still log in, but feel better understood here.
I am going to check your profile to see if you also take Neurontin. If I do take a notion to have my Baclofen filled, it occurred to me that I am afraid to start my Neurontin, and even though I am told I can take the two at once, the Neurontin already makes me need more sleep that the typical person. I used to only need 4-6 hrs. of sleep, when I was a hard driving professional, trying my best to climb up the food chain in the white collar world. I would never cut it there now, especially with the amount of sleep I need.
I wonder how you are, lady. I think I sent you a new friend request. I am trying to get all of my friend back which were on my old page, such kind and brave souls are here, don't you think? Anyone who is "Living with TN", can be no less.
Please update me on your condition via chat, e-mail to my new page, or on this Discussion Board. Let me know how you've been, as this post is a few days old now.
Hugs,
Stef
Hi -
For what it’s worth, my adjustments to the tegritol/baclofen mix had dramatically better results. I actually have much better results with trileptol. I’m taking much higher doses than what you say you are taking, but I’m likely a bigger guy. 220#… I tolerate the medicine quite well, but I am trying to reduce my doses - proving to be a little difficult.
I’d increase or change/add meds for right combinations. Neurontin might help. I take all 3.
I’m having the most effective results by passive stretching my neck / shoulder area. I’m learning that muscle tension in my neck / shoulder certainly contribute to my pain.
I’ve been helped by changing meds, even when I thought the meds did not help me at all.
Don’t give up just because your not getting immediate results - add or change meds.
Baclofen worked really well for me due to the tension/cramping trigger.
Keep at it and and you may find the right combo for you.