Medford, Ore. — A rare nerve condition called trigeminal neuralgia or TN, affects the face and causes excruciating pain. It’s also known as the suicide disease because it drives some people to take their own lives due to the extreme pain. Many times, the pain cannot be controlled by prescription pain pills.
18-year-old Medford resident Brianna Zornes is living with TN and says too few people know about the debilitating condition that’s responsible for sending her to California seeking relief from her pain. On Monday, she left for UC Irvine to get brain surgery she hopes will help her.
Zornes spends much of her time online. These days she’s limited on what she can do.
“I don’t see my friends that much, I do online school so I don’t have to go outside,” said Zornes.
She began getting symptoms in late 2013, then was diagnosed earlier this year with TN.
“Pretty much your trigeminal nerve sheath that protects it is worn through and then blood vessels and things press up against the nerve itself,” explained Zornes.
“The majority of the pain is in my cheek and jaw,” she said.
She said her face gets painfully swollen when someone touches it or even if a wind gust is too strong.
People who suffer from TN can have pain in their face that lasts minutes to hours. The pain can come and go throughout someone’s lifetime. However, Zornes has atypical TN, which means she’s in pain nearly all the time.
“I also have a constant pain that’s kind of like a burning, pins and needles fire sensation.”
When going outside, Zornes is often forced to carry an umbrella with her to shield her face from the wind. The umbrella extends to cover her upper body and has an added plastic piece on the bottom that shields any wind.
Zornes has had one brain surgery already, but it failed to fix her trigeminal nerve.
Now she’s on her way back to the University of California Irvine where she’ll undergo another brain surgery this week, hoping it’ll take away her pain.
According to the National Institutes of Health (NIH), only about 12 in 100,000 people are diagnosed with TN per year.
“It’s pretty lonely. One of the hardest parts is I look fine so some people around me don’t believe I’m in pain,” said Zornes.
For the pain and treatment, Zornes takes extensive medication, swallowing between 28-32 pill a day.
Her everyday life has changed.
“She can’t eat anything that she has to chew very hard because chewing is a trigger and it’s painful. She actually can’t brush her teeth. I had to call her dentist and get a special rinse formulated,” said Ethie Zornes, Brianna’s mother.
The 18-year-old who once volunteered extensively, played sports and went out with friends, now at times is completely incapacitated. Her hands constantly shake.
According to Zornes, it’s a response to extreme pain.
Zornes said she’s focusing on the now to get through her situation, but she’s praying the surgery this week will give her back her life.
It took Zornes months to get a diagnosis, so her message to people who are experiencing facial pain and don’t know what it is: keep looking for answers.
TN is not fatal, but it can mean excruciating facial pain throughout someone’s lifetime.
Trigeminal neuralgia is one of the most painful conditions known to medical practice, according to the U.S. Pain Foundation.
To find out more about the symptoms of TN visit the NIH website.
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