I know there are a few of different combos of drugs that can help manage TN but my MD and I have yet to find the right one. I was diagnosed with TN about 4 years ago after I had a Right Middle Fossa Craniotomy to remove Cholesteatoma for the ninth time. I was originally diagnosed with Cholesteatoma in 1998 when I was eight years old. I guess being a child, I bounced right back after surgery. When I turned 20, I was told I had another tumor and after that one was removed, I had a surgery every year (almost to the day) until I was 25. After the last Craniotomy, my Neuro Surgeon told me that my optical nerve was possibly damaged during surgery and that I may experience some nerve pain etc. After the "recovery" period I had A LOT of nerve pain. Not just behind my eye but in my face and jaw. After another MRI and a consult with my surgeon it was determined that I also had damage to nerve 5 in my face. (AKA Trigeminal Neuralgia) I was put on Gabapentin at first and slowly worked up to a pretty hefty dose until I was able to feel a difference. After about three months though this treatment stopped working and I opted to taper down and come off Gabapentin all together. During the three months of taking Gabapentin, I gained 15-20lbs and just over all felt awful all of the time. Once I came off the medicine, the weight I had gained came off pretty quickly and I started to feel better for the most part even though I still had flares and nerve issues in my face. My MD started me on Trileptal and after taking my second dose I had an anaphylactic allergic reaction and earned myself an epi pen even those the med was discontinued. LOL so here I am back at square one even though I'm four years into this terrible disease, I still experience the burning, searing and a lot of throbbing pain but nothing so far has worked. So, I'm asking everyone that has TN... What has worked for you?
I'm sorry for how long this is but I'm one that likes the whole story when someone asks a question, so I'd appreciate any advice or input. Thanks in advance!
Carrie.