Well, I saw the neurologist and he is weaning me off the Neurontin, Elavil, and oxycodone. He said that none of them are any good at controlling the pain, other than "taking the edge off." He has started me on generic Tegretol. He also ordered an MRI since I haven't had one done in a very long time and he said when it was done after my car accident in 2005 he doubts they were concentrating on the trigeminal nerve so I don't need to track it down. We'll see what it shows but he said that even if there is nothing on the MRI that doesn't mean I don't have a problem. He said a very tiny damage that doesn't show up in the MRI can still cause all of this pain. He doesn't doubt that I have trigeminal neuralgia. He said of all the people he has treated only 5 have ever gone on to surgery. He made me feel really comfortable and that he was being thorough. I'm glad my hubby's back pain specialist recommended this neurologist to me. Only problem is that the Tegretol is making me extremely tired and spacy. Can't think straight, can't drive, and having trouble working (I work from home for myself but I need the income and its the busiest time right now). The pain seemed to be going away but now its back with a vengeance. Time to let the doctor know that.
good luck kathy, let us know how the meds work out x
Kathy — glad that you finally have found some help. Your situation sounds very similar to mine as I also work from home, am self employed and I have been on Tegretol for 9 mo. and it makes me sleepy and spacey. I finally just came to the realization that this is going to be my life for awhile so I just need to cope. Be really good about having an early bed time. Mine was 9pm, and if I wasn't in bed by then there was no way I was getting up by 8am the next morning. Also, write everything down! I use to be able to remember things with my business — and then it was like someone had erased my memory completely. I finally kept a word doc open on my laptop and took notes during conference calls, anytime I had a thought, etc.
It took me a few months to get on a high enough Tegretol dose until my pain was consistently controlled. I ended up being on 500mg total per day. I'm weaning off now because I have MVD 7 weeks ago.
Good luck to you. I'm glad you are starting to get somewhere ... Cheers, Jessica
Thanks Jessica. I'm used to having poor memory because of the head injury and fibromyalgia but this is knocking me on my butt. I used to feel this way with all the fibromyalgia meds but I gave up on them and have done well with chiropractic treatments, pacing myself, and using the iphone for reminders. I used to have a Palm Trio which worked much better for reminders but they stopped making those. We'll see what the increase in the meds does. I'll be up to 600 mg/day.