Why We're Using #MeetTina and #MeetTony on Trigeminal Neuralgia Awareness Day

Trigeminal neuralgia (TN) is regarded as one of the most painful conditions known to mankind. While it is regarded this way, there is unfortunately little awareness about it.

Most people who have this severe form of facial pain had never heard of it prior to being diagnosed. Their families, friends and colleagues had also never heard of it. However, there is also little awareness amongst some of the medical community, meaning a late or a wrong diagnosis is often given. That also means a lack of correct medication, treatment and information for the patient.

I have trigeminal neuralgia, but I lived with it for many years without a diagnosis. I know of many other trigeminal neuralgia patients who have been in the same position – trudging back and forth to doctors and dentists, but being told there is no problem, and not getting a diagnosis until years later.

Some people with TN trawl the net, googling their symptoms, in the hope of finding a name for their pain. People should not need to self-diagnose any condition.

After being told there is nothing wrong with them, some have resorted to having teeth extracted because they are convinced it will help. (It doesn’t.)

And some become so depressed, not just because of the pain, but because they feel they are not believed. They feel that people, including family, friends and even doctors, think they are imagining or simply fabricating their pain.

This pain is real. And it’s a horrendous type of pain.

It might be easy to imagine the burning on your face, after lying under a scalding sun all day. Or the aching of severe sinusitis, a hideous headache or just a run of the mill toothache.

Trigeminal neuralgia can be like that.

However, it can also be worse than that. Much worse.

Imagine lightning striking your cheek.

Or knives stabbing your face. Stab. Stab. Stab.

Or an electric shock shooting from your ear to your nose.

Or a sharp knife slicing between your teeth and being wedged there.

Or the feeling of an invisible baseball bat hitting your cheekbone. Repeatedly.

Or the feeling of a dentist twisting and turning a pair of pliers to extract a tooth. All day.

That’s trigeminal neuralgia.

I have been part of the Facebook page, End Trigeminal Neuralgia since it started six years ago and we continually strive to generate awareness about the condition. This year, for the International Trigeminal Neuralgia Awareness Day on October 7th, we have introduced Tina and Tony who will convey what it’s like to live with this debilitating face pain. There is an album full of pictures explaining how this horrific condition affects various aspects of our lives.

We are hoping that #MeetTina and #MeetTony will teach people more about trigeminal neuralgia. Hopefully others with TN will learn that they are not alone, and they will be believed, even if it means being persistent with their doctors or changing them. And maybe some people will actually recognize their own undiagnosed symptoms and ask their doctor about it.

I hate to think of other people spending years living with undiagnosed pain. This pain is real. It also has a name, so people shouldn’t have to accept a doctor shrugging his shoulders or raising an eyebrow at them.

If you live with trigeminal neuralgia or any other form of facial pain, or simply want to support people who do, please share this post and the #MeetTina and #MeetTony album and hashtags. If silly cats, dopey dogs and even an oddly colored dress can trend, then surely #MeetTina and #MeetTony can trend and bring this horrificly painful condition some awareness. Together we can make a difference.