Based on your description the following disorders come to mind. One is porphyria, which is an abnormality of the component in blood which carries oxygen. Other possibilites include complicated migraine, mitochondrial dysfunction (mitochondria produce the energy the body uses), and vasculitis (an inflamation (inflammation) of the blood vessels. To evaluate these possibilities one would need to have blood tests and some more invasive testing. I would recommend a second opinion with a neurologist at a large academic center, such as the Cleveland Clinic. Good luck.
Leinakia.