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Why Trigeminal Neuralgia Is the Thief That Stole My Smile

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Trigeminal neuralgia (TN) is a thief. Out of all of the diseases I battle, trigeminal neuralgia is the biggest jerk I’ve ever met because it makes it hard to smile and has forever changed my dimple-y, sweet smile.

Beneath the surface, my face is stiff from Botox treatments, swollen from steroids, and it’s just not what it used to be because TN honestly sucks. Taking care of myself and trying to treat TN has become my job — I’m 30 and on permanent disability. Three years ago, I had a radiation surgery that “fried” my trigeminal nerve and I’m pretty sure has also altered my appearance.

It feels different to smile. With TN, it feels forced, uncomfortable, and unnatural. Sometimes people don’t recognize me and it’s embarrassing. They make comments like, “You’re so much prettier when you smile,” and it hurts. Although the treatments for this disease have changed my appearance, I’m thankful because on most days I’m in a lot less pain.

But tonight, things are not going well and I don’t feel like myself. In fact, I feel pretty dark and twisted. You see, I’ve been trying to kick this pain in the left side of my face for the past six hours. I’m exhausted, but it feels like my face and jaw are being electrocuted — so I’m wide awake.

I’ve tried multiple medications including muscle relaxers, anti-inflammatories, and opiates. I’ve tried essential oils, pain salves, CBD, ice, heat and the list goes on. I’ve tried to distract myself with art projects, making care packages for others, watching movies, etc. and nothing has helped. It’s 3 am and I’m starting to panic.

What if I can’t sleep at all?

What if the pain gets worse and I need to go to the ER? Who will take me? Will the doctor be compassionate or unable to understand what I’m going through?

Currently I can barely open my jaw. I’m unable to brush my teeth. I’m unable to eat or drink, and I’m incredibly nauseous from the pain.

I’m tired. I want to sleep.

My face hurts.

I cannot cry because that will make the pain worse.

This is a lot for anyone to stress about at 3 a.m.

I just really miss my cute face.

I might not smile like I used to at 16, but this disease has made me resilient and for that I’m thankful.

Follow this blog on Chronicles of the Chronically Ill

This story originally appeared on Chronicles of the Chronically Ill

Originally published: May 1, 2018
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