Thanks for the update! Did you ever ask your doctors to look into peripheral nerve stimulation for you (aka the stimulator that I have in my face, but perhaps on different nerves for you)? I know they do stimulation of the occipital nerve, as well as the trigeminal, here in the USA & perhaps some combination like that might help.
I'd also suggest doing some reading & talking with a neurosurgeon about
deep brain stimulation. DBS has been used for a long time to treat treatment-resistant depression, but it is now also being used to treat treatment-resistant chronic pain, among other things. It looks promising, in that it reduces the pain, and yields long term results. In your case, I think that this might be something worth seriously pursuing. See some of the below links:www.spineuniverse.com/professional/treatment/surgical/study-examines-effectiveness-deep-brainwww.medscape.com/viewarticle/554868health.howstuffworks.com/medicine/surgeries-procedures/deep-brain-stimulation.htmwww.thelancet.com/journals/laneur/article/PIIS1474-4422(06)70575-0/abstractwww.mhni.com/clusterheadaches.aspx
<--- this particular link is very interesting, as it also talks about
various other treatments which you may or many not have looked into before
I hope you find some of thing helpful. I'm always keeping an eye out for anything that might help you, Suzane! As always, you are in my thoughts & prayers. Hang in there