I'd agree with sconnors and Radgirl above as to what you should do - take the CAA criteria to your specialist and go from there. Your condition sounds and reads as rare enough that advice here will be speculative at best. I have a few concerns reading through the literature you provided, but I don't have the medical knowledge or training to assess whether the sudden incapacitation concern raised by Radgirl is of sufficient concern to deny a medical, although I would agree with her that the risk level, especially as you age, appears quite real with what I understood from the NIH et al. With that said, I do know a few pilots who have what would otherwise be considered nullifying medical conditions (albeit, here in Canada) who continue to hold a CAT 1 medical with restrictions, the most common is the "two crew operations only". I don't mean to suggest that as an avenue for you to pursue, but rather to let you know that there may be restrictive categories that you could query the CAA as a potential compromise if it is looking as though things will not go your way with an unrestricted Class 1.