Patient stories

You are not alone.

Stories shared by people in our community. Names and identifying details are removed unless explicitly permitted.

Anonymous, 47

Ten years until someone said 'trigeminal neuralgia.'

I saw six dentists and two ENTs before a neurologist recognized what was happening to me.

M., 52

I'd forgotten what it felt like to brush my teeth without bracing for a shock.

Anonymous

Watching someone you love in that kind of pain changes you. Here's what helped us both.

Your experience could be the thing someone newly diagnosed needs to read tonight. You can share anonymously.

Longer-form accounts of TN diagnosis and lived experience.

Patient Stories
Two Years Without Answers: My Mother's Journey to a Trigeminal Neuralgia Diagnosis
For two years my mother lived with unexplained facial pain before hearing 'trigeminal neuralgia.' Her story, and what we wish we'd known sooner.
Patient Stories
When Doctors Said It Was Anxiety, But It Was Actually Trigeminal Neuralgia
A personal story of trigeminal neuralgia misdiagnosis, being told it was anxiety, and finally getting the right diagnosis after years of facial pain.
Diagnosis
What Can Be Mistaken for Trigeminal Neuralgia? My Mother's Two-Year Journey to the Correct Diagnosis
Dental issues, TMJ, sinus problems, migraines and more can mimic trigeminal neuralgia. A look at the conditions that delayed my mother's diagnosis for two years.