I know exactly what you mean. People find it very difficult to grasp all the pain HC can cause and all the different places it causes it. It can be very localized for some and very broad areas for others. It is baffling for those not experiencing it.
My headache specialist only allowed me to take indomethacin for 3 months as a diagnostic tool. But I do still use it a couple times a year if I take a trip to visit family.
Sorry to hear you continue to have new complications.