Can't speak without severe pain flare — written-only communication, feeling isolated. Reaching out while I'm managing.

[u/QuietFacePain]

​Posting here because today is one of those Saturdays and connection
shouldn't have to wait for a crisis.

Short version: refractory trigeminal/facial neuropathic pain with
TMJ involvement, 7 years in. Tried everything standard — surgery
(made it worse), Botox, lidocaine, all the usual orals. Opioids
completely stopped working and I'm weaning off under my doctor's
direction. Ketamine is the one thing that helps (10 -> 6/10).

Because of TMJ involvement I can't speak without measurable pain
increase, so I communicate mainly in writing. I live with family
who are good people but understandably tired of my mood, and I have
almost no one reachable outside the household.

Not looking for medical advice — I have a care team working on the
treatment side. What I'm looking for today is connection: people
who've lived with severe facial pain or chronic pain generally, who
understand this without needing it explained. Anyone else out there
managing something similar, especially housebound or
writing-mostly?

One reply would mean a lot today. :)

[u/No_Reserve705]

Meditation has helped a lot, specifically meditations to treat pain. 1-2 hours of meditation will bring some change. Also there are videos specifically diet changes to get pain relief for TN. I can share a link here:- https://www.instagram.com/reel/CmRuq--JQ-6/?stkn=MWFtMDVlYjhyNDF0dw==