Hi, I'm new here but not new to TN. I have had TN for 4yrs now and have been through the gambit of meds and procedures like eveyone else. An MVD that didn't work an RF that turned into anesthesia delorosa, It's been a long haul but I'm doing better. I now am the TNA support group leader for Southern IL. After dealing with Neuro's for a while and finding little compassion and even less help I decided to make the jump into Pain Management. I stopped trying to treat the disorder, let's be real what else can they do?? Now I just treat the pain.
I'm on 4800mg of neurontin, 400 mg of Lyrica and 15mg of methadone. I also use a 4% oral lydocaine solution for breakthrough pain inside my mouth. It sounds like an overwhelming amount of meds but I am functioning and functioning well (except for a back injury now!!). I've been very lucky to have watched a great number of tapes from the TNA conventions and one Dr's advice has stayed with me, always try every med, even if you didn't do well with one that's similar, because it might work for you. Second, you need to control what you take and when you take it. Try breaking up your doseages so that you're taking them more frequently, same amount for the whole day, just take it more often. Less highs and lows and better pain coverage. If you're doctor doesn't like it, he doesn't have to live with the pain!! This is you're disorder you need to manage it.
As for me, after a few months and a few difficult side effects, I've adapted well and am getting decent pain control for my atypical pain. I know its different for everyone but don't give up. Remember that every med has some kind of side effect it's just giving it enough time to see if the side effects lessen. Good Luck to Everyone.