@logi What a constant misery for you to endure. Know that nerve tissue is very slow to heal, but healing is possible. I have had healing in my damaged facial nerve for years after the surgery. Sometimes we forget the basic pain relief and numbing of an ice pack. Have you tried that? After my thoracic surgery and a chest tube that is the only thing that helped me sleep at night. Also Lidocaine patches either OTC or stronger thru your doctor's prescription. They might take the edge off. I like the Salonpas brand but there are many available.
Nerve pain is tough to control. I would be looking into acupuncture and asking your PT about a TENS unit. Also a serious discussion about a PEG tube for nutrition while you are trying to manage all of this. Have strength. This is torture but there is a light at the end of the tunnel. I am 14 years out now. Hugs to you.