The pain has now spread to both sides of her face and is near constant, making her a very atypical patient.
A former journalist and government communications official, she can no longer work — unable even to drive a car.
But Shanks said she refuses to let the disease define her. And some of the treatments help. Botox, for example, gives her some relief.
“It’s like somebody has put up a thick wall of rubber,” she said. “Instead of a pick-axe through my head, it’s like getting hit with a ball-peen hammer.
“Getting hit with a ball-peen hammer is no fun, but it’s better than the pick-axe,” she said. “You learn to cope.”