Hi Jenn and a very warm welcome to the group.
I've a feeling your story isn't a million miles away from all our experiences so far. You don't say where you are from, but have you thought of finding a new Neurologist. You need to be monitored especially with your medication with you been allergic to it. A lot of IIH'ers find they are allergic to the sulpha in the medication so you aren't alone.
It isn't good that you are being left to fend for yourself, because your IIH is going unchecked and uncontrolled.It is good that the damage to your optic nerves are minimal, but for the longterm you need a good experienced Neurologist who can put you on a definite and more suitable treatment plan.
We have lots of information and helpful booklets and we encourage our members to keep a symptom and medication log, because when you see your Doctors you can give them a full picture of what has been happening to you since you last saw him/her.
We are always here to answer any questions and concerns as well as to give you full support and help where ever we can.