@Sarah - You absolutely need to have a spinal tap ASAP. Has one been ordered? I remember I had to wait for about a month before I finally got mine and by then I was very seriously feeling like I would not be able to live with that kind of pain anymore.

Some people get increased intracranial pressure because something happens to them genetically to cause it - it's called intracranial hypotension - you can find out about it more on this website: http://www.ihrfoundation.org/intracr...nsion/info/C16

I'm pretty sure that there is a support group on facebook too.

I know how very painful it is - it is truly torturous. I think if a Dr. or the Dr.'s loved one had this then they would get the spinal tap right away. I'm so sorry you have to live through this pain.