SAN ANTONIO -- It is known as the "suicide disease" and is considered to be one of the most excruciating afflictions known to medical science.
Holley Pesina lives with the pain every day.
Trigeminal Neuralgia is a rare chronic pain condition affecting the trigeminal nerve in the face. Simply said, it is facial pain and there currently is no cure. October 7, 2016, is International Trigeminal Neuralgia Awareness Day.
"Trigeminal Neuralgia, at its worst, puts you bed-bound," Holley said. "You cannot work. You're on... I was on multiple medications just to keep the pain at bay, and even then I still had pain."
Holley has struggled with facial pain since she was 16 years old, but she was not diagnosed with TN until she was 23.
It took more than six years for Holley to find a doctor who could diagnose her correctly. Once she found out what was causing her pain, Holley set out on the journey to be able to manage the pain so she could live a semi-normal life.
Trigeminal Neuralgia is a condition that affects every area of your life. Holley said that prior to finding effective pain management methods, she struggled to eat and was losing weight. Holley said her condition even affects her relationships with her husband and her children.
"My kids, my kids... that's all they know of me," Holley said.
KENS 5 producer Emily Porter first connected with Holley in 2015. Holley already had met with doctors in Dallas. Her pain was still too much to handle on a regular basis.
After failed attempts to contact Holley's doctor in Dallas, Emily was able to connect Holley with a leading specialist on her condition, Dr. Raymond Sekula in Pittsburgh.
"With Emily, when I met up with her, she tried to get a hold of my doctor in Dallas to interview him. He wouldn't call her," Holley said. "She got a hold of Dr. Sekula. He personally returned her call and he wanted to Skype with me."
After a consultation with Dr. Sekula via Skype, he determined that he could help Holley better manage her pain with a non-traditional surgery.
"He helped me... ended up helping me," Holley said. "For a while, I didn't think it worked. I was still having a lot of pain but it just took a while for it to heal, and now I'm doing... I'm doing a lot better."
Holley said the biggest change to her life is her ability to be with her family. Prior to the surgery, Holley would not even go out with her family for fear of having a major episode in public. Now, Holley said she is able to spend time out in public with her family.
Holley was once considering applying for long-term disability but has returned full-time to her position as a nurse in Kerrville. She said her condition has helped her to understand her patients and connect better with their struggles.
"I still get my bad days, but it's not near like it was," Holley said.
To support Holley and the Pesina family in their daily battle with Trigeminal Neuralgia, visit their GoFundMe page.
View more information on Trigeminal Neuralgia: TNA The Facial Pain Association website.
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