Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!