Elle, Did they do the LEMS blood tests?
If you clench your jaw while sleeping, that can make things worse. You could also use a U-shaped pillow around your neck or a neck brace to help those muscles of the head/neck. The head is really heavy!
Try sipping some cool water in between eating. Or even a cool pack (not too cold) on your neck/jaw.
Don't you "love" having a face that droops? I don't even like going out in public that way.
You take it easy, okay? Don't push yourself.
I hope you will get answers AND treatments soon.
Annie