Hello Teresa, welcome to the community! Thank you for opening a topic about the tolosa hunt syndrome, as it is not so common. It will be interesting for affected people to exchange their experience here. What helps you in dealing with the pain?
Tolosa–Hunt syndrome (THS) is a rare disorder characterized by severe and unilateral headaches with extraocular palsies, usually involving the third, fourth, fifth, and sixth cranial nerves, and pain around the sides and back of the eye, along with weakness and paralysis (ophthalmoplegia) of certain eye muscles.
In 2004, the International Headache Society provided a definition of the diagnostic criteria which included granuloma.