Hi
I have RRMS (12 Yrs) and A-typical TN (approx 6 yrs). I wondered whats meds anyone with the same two conditions take?. I currently take Gabapentin & Oxcarbazepine & Amitriptyline (not doing the job) Pain worse at night cannot lie on side with pain. Feel tired all of the time...Any help greatly appreciated.
Thanks
Hi oneday,
I too have RRMS (6years) and A-typical TN. I have taken all the meds you mentioned and more with no positive results at all. Then I went to a new neurologist and pain management team and they put me on Carbamazepine. It immediately gave me relief from the excruciating pain that I had. As in all cases results vary, but this was a life saver for me. For my RRMS I am on Betaseron. I hope this helps you in some way and you get the relief you need. Please feel free to send me a note if you would like to chat. Best of luck.
Gary
MS 10 years on copaxone. TN started same time but not diagnosed for awhile. It was not severe initially &. I kept going to the dentist. Just start to get bad this year. I was already established on a lot of meds like cymbalta so added Wellbutrin then had bad episode ;added alieve, then ultram then fioricet to get quiet. Not taking them now. I guess we’ll see if there needs to b a change if frequency increases.
OK -- I'm just wondering why we get labelled with 'atypical TN' when the TN is related to our MS. My neurosurgeon and my MS neurologist call it MS-related TN. If you have lesions in the brainstem (pons) causing your pain, then you have the same thing. The first drug of choice is carbamazepine (Tegretol) and if the drugs fail or you're allergic, there is the option of a rhizotomy. This needs to be discussed with your neuro and an experienced/competent neurosurgeon.
I gave a talk about my MS and TN last week and it's on youtube if you want to see it. https://www.youtube.com/watch?v=2zIFrSSI1VU
I too have RRMS and TN. I am on Rebif for the MS. i am currently on Lyrica, Neurotin and Baclofen for the TN. I have had pretty good results but hate the way the Neurontin and Lyrica make me feel. I feel dopey all the time and like having an out of my mind episode. I have found that the Lyrica really seems to help. Both are used for nerve pain. I am also tired all the time but I just do the best I can.
I also have MS and TN. I currently take Tegretol and Gabapentin 100 mg each. I also take Amitriptyline for my legs. I had a gamma knife radio surgery 1-03, but the MRI I finally had last week revealed the nerve was not affected. The Dr. asked if I wanted to do it again! No was my response. I don't know what to do now, either. I am looking for someone who is getting relief.
painmagtwig said:
I also have MS and TN. I currently take Tegretol and Gabapentin 100 mg each. I also take Amitriptyline for my legs. I had a gamma knife radio surgery 1-03, but the MRI I finally had last week revealed the nerve was not affected. The Dr. asked if I wanted to do it again! No was my response. I don't know what to do now, either. I am looking for someone who is getting relief.
Jennifer, I am sooo sorry you had to go through all that pain!! (I just watched your youtube video). My sister had the same 'it's all in your head' misery before her diagnosis (late 70's) - luckily mine came quickly (1998).
I had a bout of TN 5 yrs ago, lightening like pain through my face. It went away until this summer. I got so depressed, it lasted about 5 weeks. Got an appt at UCSF (univ San Francisco) - they were great and I will have the probe surgery like you had when the TN comes back next time.
My questions for you are, when did you have the procedure, has your TN come back and are you doing well now?
Many thanks,
Sally (Yllas)
Jennifer said:
OK -- I'm just wondering why we get labelled with 'atypical TN' when the TN is related to our MS. My neurosurgeon and my MS neurologist call it MS-related TN. If you have lesions in the brainstem (pons) causing your pain, then you have the same thing. The first drug of choice is carbamazepine (Tegretol) and if the drugs fail or you're allergic, there is the option of a rhizotomy. This needs to be discussed with your neuro and an experienced/competent neurosurgeon.
I gave a talk about my MS and TN last week and it's on youtube if you want to see it. https://www.youtube.com/watch?v=2zIFrSSI1VU
I also take these same 3 drugs: Gabapentin & Oxcarbazepine & Amitriptyline. Things go pretty good. My TN is in my face right side. I do have the tiredness issue buts only if I am not being active. Sitting etc make me nap. If I am moving, doing something I do not have the problems. I take the Amitriptyline when I go to bed and only on the weekends. I recently had a nighttime issue but am seeing a surgeon to maybe do a Rhizotomy surgery.