Diagnostic mysteries - a moving target?

I was recently diagnosed with familial hemiplegic migraine. It has been a long road only to arrive at the quarry. In my mid-thirties I started having migraine with aura four or five times a year. In the last 13 years I have begun having migraines of increased frequency and intensity.

I have not been able to work for the last four years due to up to 4 migraines per week with visual changes. My last experience with a neurologist who was a migraine specialist was able to reduce my frequency down to 2 or 3 per week, but continued to prescribe more and more medications until I could barely function. When I would try to talk about drug side effects or interactions he would brush me off, telling me to discuss it with my internist. My newest neurologist has informed me that I have hemiplegic migraine and cannot use triptans or ergotamines to abort migraine.

I am currently in limbo, with Calan, neurontin and celebrex for preventives and nsaids or vicodin to manage the pain of my 3 migraines per week. Each migraine is lasting up to three days, and I have been told to go to the ER for help if a migraine lasts 72 hours. I do not consider this a viable plan, and wonder where to go from here.