What It’s Like to Live with One of the World’s Most Painful Disorders

Trigeminal neuralgia involves damage to the trigeminal nerve—the one used for eating, talking, and other facial functions. The nerve loses its protective covering, essentially acting like an exposed wire. Because TN is such a rare disease, with only 12 out of every 100,000 people diagnosed each year, doctors are still unsure why this happens in some people and not others.

What they do know is that simple activities like brushing one’s teeth, putting on makeup, or sometimes doing nothing at all can set off shocks throughout the face, in the forehead, cheeks, jaw, teeth, and gums. Others experience a constant burning sensation, and some feel both.

Patients have likened the pain to repeatedly being stabbing with a carving knife, getting hit by lightning, or having a screwdriver jammed in your eye. Dr. Mark Linskey, a neurosurgeon who specializes in TN, told me the sensation is “worse than childbirth, if you ask any woman who’s done both.”

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