First, let me just say how glad I am to find a social network w/ some substance! I've been on many sites and they have been AWFUL. I finally found you guys through IHRF and the Brain Pain site..thank goodness!!!
My story: I was diagnosed w/ pseudotumor cerebri in 1999, but have dealt w/ encephalitis and "unexplained" headaches since the 80's. My neuro- opthalmologist said I've had everything he's ever experienced w/ ptc and then some. I was on '101 ways to kill me' medications and went into remission for several months, but when it came back in 2001 it came w/ a vengeance. I had a lumbar shunt implant in 2002 w/ revisions in 2005 and 2007. I've had daily headaches for the past 2 yrs. Apparently, I developed a chiari malformation as a result of the shunt, and the shunt is working too well. They think I'm draining too much fluid when upright, but won't move the shunt because it's maintaining the ptc ( and most importantly, my vision). I have a very low tolerance for medication, so trying alternative medicine (open to any suggestions). I think that brings you all up to date..in a nutshell.