IIH with no Papilledema

I was diagnosed with IIH back in March of 2015. I have never had the papilledema symptoms. I've had some blurry vision and dizziness. I've had chronic headaches and migraines since I turned 18.

I fell in January 2015 and has a head injury and suffered from post concussive syndrome for two months. After I continued to have daily headaches, dizziness, blurred vision, ringing in my ears, nausea and fatigue I finally was referred to a Neuro-Ophthamologist in Atlanta that diagnosis me with IIH. I had previously had an MRI and CT Scan that came back normal. She ordered a LP and my pressure was 33. At the same time I found out I was pregnant. I had to have 4 LPs throughout my pregnancy without X-ray in order to get relief from the headaches. LPs so far have been the only thing that has given me any kind of relief. I couldn't tolerate the side effects of Diamox.

My current struggle is that I have recently moved and I am struggling to find doctors that have experience with IIH. I've had Ophthamologists think that I don't have IIH simply because I don't have the papilledema. It has been quite frustrating and discouraging. Nothing else fits how I feel. Its been 8 months since my last LP and my symptoms are really making everyday life a challenge.

Has anyone else had challenges with doctors?