Im a new member to this group but I see many of us share the same concerns about what to do and how to cope. We all have to take it one day (hour) at a time and do the best we can. Sharing information on succeses (and failures) can be a big comfort to others who are taking the same path. MD's dont have all the answers... so the best informed deceison comes from getting good information. We were at 2400mg of Carbamazepine per day and still getting pain when in bed. Just had MVD and so far so good (3 weeks)... now at 1200mg /day