Hi Ally, and welcome. I am glad that you have found us. We will do whatever we can to help you, with loads of moral support and encouragement, and the benefit of our experiences. Unfortunately, this disease seems to be a very much "been there done that and didn't even get a T-shirt!!"
It does seem to be difficult to find doctors who know (and/or care) about IIH. You are not alone in that department. I highly suggest that you go through your health plan directory of approved providers, and phone each one, one by one, startung with Neuro-Ophthalmologists, than Neurologists, than Neuro-Radiologists, Ophthalmologists, and GP's. Ask to speak to the doctor's nurse. Tell the "gate keeper" (Person who answers the phone) that you have a complex medical condition and only the Doctor, PA or Nurse would understand. Then ask if they have experience in dealing with IIH, and if they do, what is there usual plan of action? You should be able to weed through the list rather quickly (assuming you can get past those darn gate keepers!) and find some help closer to you.
Have you looked at the side effects of Diamox? Sounds like you may be feeling some. The med is very useful, and it does take what seems like forever to get used to them, but the side effects can be troublesome.
The other symptoms, the pulsatile tinnitus, the daily headaches may indicate that your pressure is still too high. Sometimes another lp with a greater reduction in fluid followed immediately with the Diamox routine is helpful. One of those things to discuss with your doc.
Again, welcome to you Ally. Feel free to ask any questions. We'll do our best to answer them.