It's My New NormalThe first time I actually heard the term pseudo tumor cerebri was in April 2011. The same as all of you I was having extreme head pain and vision changes. I knew something wasn't right. But my doctor just kept treating me with medication for migraines. But I know my body and knew there was more going on than just a migrain. It was actually my optometrist that figured out what was going on. I could hardly see and it just happened in an instance. My optic nerves were so swollen I was legally blind. Then came the fun parts. MRIs ct scans spinal taps multiply hospital stays to try to relieve the head pain. My balance would be off speech would get slurred and forget staying awake. I was always so tired!!! I was put on the diamox which just made me more sick. The topomax was a joke. And it was like I was speaking Chinese to my dr who had no experience in dealing with this. So I finally got to a neurologist after a year and a half of dealing with this. My pressure would get so high and the pain to much to take that I began to blackout. That's when he decided to put the shunt in my lower back. Known as an LP shunt. I did feel better for about 17 days which was fantastic. Then suddenly it all started to repeat again. I had the shunt put in June 17 2012. I had to have it adjusted over 10 times. Sometimes I would feel better. But the last four times I seemed to get worse. The blacking out was the most alarming thing. So he the realized that the tube was kinked. So July 14 2012 he went in and moved the shunt and fixed tube. But I'm still not better. My vision sucks again the head pressure is back my balance is off and now who knows what will be the next step. This has become my new normal and let me shout out IT SUCKS!!!!! I'm beyond frustrated!!!!
Gugellogirl 31-35, F 0 Sep 19, 2012