You sound informed, perhaps from your own research, and from your Neurologist.
WebMD information.
NIH information .
The
Hemiplegic Migraine Foundation .
I have listed this link about
Topamax before. I take it for my Post-traumatic/Post-concussion Migraines.
I have heard of the condition, never had seen it in my practice, however. Hope some of those links are adding to information for you and others.
Best Wishes.