Hi Ella and Sewingchick
I have bilateral TN. In July 2016 I started getting horrendous attacks, where I couldn’t eat, drink, talk or walk (vibration from walking!!). I had attacks daily for 7 months. I saw a neurosurgeon to confirm diagnosis, which he did. It was suggested that I try Oxcarbazeine, which is very similar to carbamazpine, which I tried first but was allergic to it. Oxcarbazeine made me dizzy, but I got use to it. I was on a extremely high dose (2,000 a day), but now take 300 in the morning and the same at night. I still have attacks, but they are muted and certainly not as often.
Can I ask why you have to come off Carbamazpine? If it works for you, personally I would not change it. These meds are extremely strong and will cause dizziness etc. It’s a choice I guess. I couldn’t go anywhere until 1pm daily due to dizziness. Now I get slightly dizzy for an hour or so but that’s it. I find stress can cause a flair up.
We are all different and our bodies react to different drugs, but I am not convinced Gabapentin will be strong enough. I was on Pregabalin prior to Carbamazpine, which I think is similar to Gabapentin and that didn’t touch the pain.
I would add that Oxcarbazepine is not licensed for TN, so you may have difficulty getting it. Do you have a TN nurse? They are few and far between, however.
I wish you both well and hope you get respite from the pain.