What's the optimal period of staying without pain before deciding to lower the dose of Tegretol? My mother has been pain-free for 3 days but the medication has already taken a toll on her..is it safe to lower the dose now? We're in Africa and her doctors are useless. We manage her medication ourselves. Please share your experience.
I'm sorry, but there are no real rules when it comes to something like this, everyone is different. I was on 1600mgs of Tegretol per day after a number of attacks which saw me hospitalised. My side effects, while bad (I didn't know how bad until I came off Tegretol completely after an MVD), were preferable to the intense pain I had suffered. Prior to my MVD, I had been pain free for around 8 months, but kept my dosage at 1600mgs as the memory of the pain was extremely raw. I simply could not have gone through it again and emerged with my sanity. After what, so far, seems like a successful MVD, under medical supervision, I took around four months to reduce and stop the Tegretol. I should mention that I was also taking Gabapentin, Baclofen and Amitryptiline. I am in the very fortunate position that I am now drug free.
Thanks so much Jim.
I really appreciate that you took the time to reply and I'm very happy for you because I can completely understand what 1600 mgs can do to you..May you continue to enjoy many many pain free years and may this MVD mark the end of all your pain.
Blessings
Hi Asmara,
I agree with Jim. Everyone is different and there are no rules. It's something you need to discuss with your doctor. The fact that you may be pain free could be because you're on that particular dose and you may need to stay on that to keep the pain away.
AND you should never lower a dose of any medication without the permission of your doctor.
Hi Gloria
Thank you for replying <3
The problem is there are barely any pain doctors or neurologists where we live so we really have no option when it comes to lowering and upping the dose but trust me 8 years with TN have certainly made us more qualified than any doctor over here.
It's just that she's never been on such a high dose and we're not quite sure how long she should stay on it..May God help her.
Gloria E. said:
Hi Asmara,
I agree with Jim. Everyone is different and there are no rules. It's something you need to discuss with your doctor. The fact that you may be pain free could be because you're on that particular dose and you may need to stay on that to keep the pain away.
AND you should never lower a dose of any medication without the permission of your doctor.
I have just read that you should be pain free for 4 weeks before you try and lower the dose. From the Skull Institute, I believe.
I had my MVD four weeks ago, was TN pain-free immediately. I have weened myself gradually off all the meds ( was on mix daily of max-dose tegretol, gabapentin, baclofen, and arthrotec for last four years) as of last friday. I kind of wish I had read this group before doing that, but so far I feel great but will see how it goes. I agree though that everyone's body and tolerance is different. I have a very physical job walking and delivering the mail all day for the last 17 years, seven of which I did with TN and medications so my body may be in a different health state than someone else may be. Other health issues, age, weight, lifestyle may also dictate how long you need to ween. Your doctor would have the best word for you on what your body needs to do for safety. Congratulations on being pain-free and take your time, enjoying each new day.
Thats great Nikki! Congrats on ur MVD. I wish you a long pain free life :)