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Rock Hill woman shares heartbreaking experience with Trigeminal neuralgia, known as the 'suicide disease'

"It’s not just a pain you can kind of muscle through, it’s a pain that is coupled with the hopeless darkness of no way out.”

ROCK HILL, S.C. — Trigeminal neuralgia is a mysterious disease that causes intense, random bursts of pain. It usually affects people over 50 but can happen to anyone at any age, and there’s no known cure.

Abby Brooke remembers the first time she felt it.

"I felt a really sharp and sudden pain," she recalled.

It was 2018, she was sitting in her bedroom, and the blast of pain threw her to the ground.

“It feels like there’s a knife in your jaw or electrocution going through," she said. "You can feel like a grenade went off 2 feet from you and you just caught all the shrapnel from it and you got a look in the mirror, and you look completely normal.”

Abby met with dentists, doctors, and specialists. For almost a year, no one had answers.

“As time goes on and the disease progresses you feel more and more like you’re alone, because no one‘s understanding you," she explained. "Most people don’t know how to explain it to anybody, they just know I’m in a lot of pain and I need help but I don’t know how to explain it. The ambiguity of it is part of how haunting it is.”

After almost a year, Abby was finally diagnosed with trigeminal neuralgia, a chronic condition caused by some disruption of the nerve that connects the face and brain.

The pain comes and goes, sometimes randomly and without warning.

It’s widely considered the most excruciating pain known to man, and there is currently no cure.

“It’s still so new it’s in infancy as far as what surgical interventions could help you, what kind of medications can help you," Abby said. "I feel a little guinea pig-ish in some ways.”

In fact, the condition is known as the “suicide disease." Some medical reports say nearly half of all patients will take their own life.

“It’s hard to explain because unless you've felt it yourself you really can’t understand the magnitude of it," Abby said. "It’s not just a pain you can kind of muscle through, it’s a pain that is coupled with the hopeless darkness of no way out.”

While Abby works with her doctors to try and find relief, she hopes to raise awareness about the disease.

“All you want to do when you’re in that much pain as to be out of that pain no matter what the consequences," Abby said. "All that matters is not feeling it. But there’s absolutely hope and there are answers out there. It’s just getting to the right people. My whole journey is worth it just to raise awareness about its existence and help people out there.”

There is no one known cause of T-N, but doctors believe several things could trigger that nerve disruption, like tumors, or a facial or dental injury. But it could also just start for no known reason. 

Statistically, 50% of individuals who have trigeminal neuralgia end up committing suicide after two years. Have you ever heard of it? If so, what do you know about it?

Posted by WCNC Charlotte on Monday, April 27, 2020

You can follow Abby's story and donate to her medical costs by visiting her GoFundMe here.

Click here to learn more about Trigeminal Neuralgia, symptoms, and diagnosis. Click here to learn more about research being done in the search for a cure for and better understanding of Trigeminal Neuralgia.

UPDATE: Several weeks after WCNC Charlotte sat down with Abby Brooke for this interview, Abby underwent Stereotactic Radio Surgery (SRS). The surgery was recommended by Abby's doctor in the hope of providing her some relief. 

Following the surgery,  Abby told WCNC Charlotte reporter Savannah Levins:

"The surgery went very well.

I am still recovering/resting.

This procedure takes about one to two months to see the full results but my surgeon predicts an 80% chance of a long term, pain free life!

This is such wonderful news! I could not have asked for more encouraging results and am truly overwhelmed at the idea that the pain I have been experiencing for the past two years will one day just be a memory.

This can be true for other sufferers of Trigeminal Neuralgia as well. Their lives do may have to be ones of debilitating pain and hopeless thoughts. There is hope."


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