Hello, I was diagnosed back in 2001. We were insured at the time, but right after I was diagnosed, my husband lost his job and in turn we lost our insurance. So I have not had the lumbar taps. I would say that my case is milder than yours and I feel so bad for you. I have the pressure in my head quite often, but I have never lost my sight yet. I also would like to ask you if you also feel the pressure at the base of the back of your skull? I do not get to go to the doctor but usually once a year, but this year I have not been able to scrape up the money for the office visit. I go once a year so the doctor can give me a perscription of Diamox. It worked so well for me, but I have not been to the doctor in a year in a half and my head is just killing me. So I will have to go back to the doctor some how. I know my post is not much help to you but at least you know that you are not alone in this.
How long have you had this illness and does it get worse as we get older? I have lots of questions, but nobody to talk to about it. Thanks for posting your question because now I don't feel so alone. I hope they find a cure for us soon. You can investigate further by visiting The Intercranial Hypertention Research Foundation. I believe that the foundation can help fellow sufferers and future suffers.

Thanks,
Catfishchic