I hope your appointment with your neuro went well.
I am a 45 year old man and I was diagnosed about 6 months ago also, although my symptoms are rare also. Over 6 and a half years ago I was very ill with very severe headaches, dizziness, tinnitus, double vision and palsy on the left side of my face. After 3 weeks in hospital I was diagnosed with 6th nerve palsy and intracrannial hypotension (lack of cerebral spinal fluid). I was given an epidural blood patch and told to take caffeine and my symptoms gradually improved.
For the last six years I have continued to suffer with pressure headaches, sore eyes, tinnitus and facial swelling (mostly on left side). I have had numerous MRIs, CT scans and lumbar punctures and most were normal although symptoms continued. My opening pressure is in the mid 20s and I have seen no improvement from Amytripiline and Topirimate. I have had a number of lumbar punctures six weeks apart which have lowered the pressure temporarily. I am currently awaiting results of a visual field test.
I have found this site very beneficial in finding information, advice and a sense of understanding. As it is primarily a condition that affects women I feel it would be helpful for men to discuss common issues.