My battle with trigeminal neuralgia

What Is Trigeminal Neuralgia?

For my perspective on the suicide disease, please click here to view a list of articles.

When I was in second grade, I remember thinking, I feel as if I’m going to be sick for the rest of my life.

Every year, I was afflicted with a pain that lasted a month, and every year it got worse. Well into high school, there were numerous occasions when my mother would have to pick me up and take me home because I was in too much pain to do anything.

In the summer of 2013, I had a severe flare-up that resulted in an ER visit, and I finally ended up with a neurologist who diagnosed me with trigeminal neuralgia. This is a nerve disorder wherein the trigeminal nerve that supplies sensations of touch to my face is not operating properly. Almost anything can trigger the pain– wind, breezes, light touch, and kissing. I usually avoid touching the entire left side of my face, as it can also hurt to brush and wash my hair and face. My case is not as severe as some others, but I am often experiencing some kind of pain or discomfort almost 24-7. Even if I am smiling, I might be in pain. I just try to distract myself from it.

I am a very private person and I don’t usually share about health-related matters, but I feel it’s important to discuss it here because trigeminal neuralgia is presumed to be rare– though experts are beginning to think otherwise –and so little research and funding has gone into this disorder that TN patients often go years without being properly diagnosed, and we tend to feel like lab rats as doctors continuously try different medications that may or may not work.

We need to raise awareness of this disorder. More funding and more research means the possibility of a cure being found one day, hopefully in my lifetime.

Learn More

About Trigeminal Neuralgia—  Also known as prosopalgia, suicide disease, or Fothergill’s disease . . . a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve.

Trigeminal Neuralgia Fact Sheet, Institute of Neurological Disorders and Stroke— What is Trigeminal Neuralgia?

Help for TN Patients

The Facial Pain Association— Offering support and information.

The Young Patients Committee of the Facial Pain Association

End Trigeminal Neuralgia— The closed Facebook group for TN patients and their loved ones.

End Trigeminal Neuralgia Facebook Page— Open to the public. “Like” this page and share posts to help spread awareness of this disorder.

My Battle With Trigeminal Neuralgia— A very interesting and informative personal blog on TN.

The face of TN can look like anything . . . or anyone.

There are many TN patients out there, and many are still struggling to get a correct diagnosis. Here is one face of TN. Mine:

Me on April 17, 2013, out for a run on Juno Beach-- before I was diagnosed with Trigeminal Neuralgia.

Me on April 17, 2013, out for a run on Juno Beach– before I was diagnosed with Trigeminal Neuralgia.

Help support us by wearing teal on October 7th, International Trigeminal Awareness Day.

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