I am so pleased you found your way to us, and joined our group. Unfortunately it seems that it's the Opticians who know more about this condition than our GP's do, and you would think that they would keep abreast of things like this, for when they may get someone who will show IIH symptoms.
What I suggest you do, and what I actually did myself, was print out information about IIH, the best place to get it being The IH Research Foundation
Insist on this being in your notes, so that should you have to see any other doctor the information is in there. I would also give copies to family and friends or point them in the direction of the IH Research Foundation online. The more information they have, the more they will begin to understand how it affects you, and the processes you have to go through with it.
I have to admit that at first I had refused to have a shunt, I was very put off by the complications and the surgery. I did do quite well on the Diamox for about 12 years, even managed remission for 5 of those years. I had lumbar punctures when the pressure was high.
I now have a VP shunt, and although they can be problematic, when they are working they do very well, and mine has been marvellous. I would say though, that if your eyes come under threat, having a shunt makes all the difference, so if they feel that is the case with you and a shunt is the best thing, unfortunately you may not have much of a choice.
If you would like to know what it's like having a shunt I'll be happy to talk to you about it and answer any questions I know you will have.