So I saw my new neurologist. After reading the packet I had to fill out and a list of symptoms I've given him, he's convinced it's intractable migraines. I told him I've already been down that treament path with no luck and he said he'd offer different options and really intense lifestyle changes and thinks it will help. I mentioned my cerebellar ectopia and he's ordered an updated MRI of my brains and c spine. He said even if it's too small still to be called "chiari" officially (jan 2011 it was 4mm), he said it could still be causing
"congestion" in my head and contribute to some of the symptoms. It was at least nice to have someone open minded and willing to check it out. I'll let you know what the MRI says!