Welcome to the group! I'm glad you found us and hope that you will find this site to be a great source of information and support. I know that I have!
Sorry to hear that you're having to wait such a long time to have your diagnosis confirmed by the neurologist. It sure sounds
like IIH with the CT scan being clear and your opening pressure on the lumbar puncture being high ... and the fact that they've gone ahead and started you on Diamox. But I know it will be helpful when you can talk it all out with the specialist and get all of your questions answered.
Diamox is a tough medicine, I have to be honest with you. I've been on it for 2 and a half years now, and I'm grateful for it because it's done well for me in controlling the pressure. But the side effects can be a real pain! Recently I was able to decrease my dosage from 1500mg down to 1000mg and that has helped a lot with cutting down on the real bad side effects, like the balance and coordination problems. The pins and needles, I still have!
You are still in the early stages of starting the Diamox, and for me, it got somewhat easier with the fatigue and all, after I was on it for a while and my body adjusted to it. Hopefully it will be the same for you. I look forward to getting to know you.