Dear Rooster (you remember me,right?),
Seeing as caffeine makes mine worse, and lying down doesn't help (very tough to sleep with my head pressure), and standing sometimes can provide relief, it sounds like I may have the opposite of yours--whatever that is. It sounds like intracranial hypertension. The precise starting point for mine was when I was abusing amphetamines (those were in my younger days as an addict, yes I regret it) so I'm not quite sure what that did, if that can cause a csf leak or what it does. But it sounds like mine is on the "hyper" end.
Do you have any thoughts on this? Are the procedures for intracranial hypertension just as safe, and possibly more effective, than those for the "hypo" end of things? On hastypastry, you mentioned you had an epidural blood patch for your csf leak, but it didn't work. I'm wondering if procedures for the opposite condition might be more effective.
Any way you look at it, I have the same core symptom the others in this thread have: constant head pressure.