@frenchfrank51

First, I'm very sorry to hear hear you are going through all of this. I know this is very frustrating on top of the pain.

I have had a similar -- although not as severe -- experience.

Before my first bout of PMR in 2017, I had some rather minor but unexplained facial numbness/neuropathy. Nobody could tell me why.

Once PMR set in, it became a full-blown cranial neuropathy with intense headaches, sometimes the sudden shooting kind (perhaps similar to what you're describing as strokes?).

Lots of tests, including GCA and MRIs and neurological studies, resulting in only shoulder shrugs from docs in return. Even after my PMR was under control and off prednisone, the head condition continued. The shooting headaches went away for the most part, but the neuropathy and underlying headache never went away and has never been explained. The only thing that helped some was having vertebrae fused in my neck for deteriorating disc disease -- obviously an unrelated condition.

I did have lots of skin conditions on my head as well, but not as severe as you seem to have it, which I attributed to the prednisone.

PMR hit me hard again this past November and with it the headaches intensified, but not the sudden shooting kind. Got the body pain under control with prednisone once again but the head condition continues.

So unfortunately, I have no good answer and have been given no answers over the past nine years. But the intensity in my case did at least ebb some.

All I can say is that perhaps your PMR is interacting with some other underlying condition.

Hopefully you will get some more answers in this forum. And please keep us posted on how it's going.

r/Barry