PENDLETON – Maybe it’s a light breeze that brushes across the face, or a smile that can’t be suppressed. Maybe it’s eating, or drinking or brushing teeth. These are all things most of us take for granted, but for some people, these seemingly normal, everyday events can trigger devastating facial pain.
Trigeminal Neuralgia is a neuropathic disorder that causes severe and often unpredictable pain in the face. Its source is the trigeminal nerve which has three branches reaching toward the eye, the upper teeth and along the jaw toward the lower mouth and chin.
“It’s as if someone implanted a naked wire in your face. You get up and you hit the light switch and you make it go off,” Kathleen Hays of Lapel describes the sensation. “I felt like somebody took a big, long pin and just jabbed…. It was just like being electrocuted and it pulsated.”
Hays, founder of the Trigeminal Neuralgia Association (TNA) support group for Central Indiana, is on a mission to raise awareness of the disorder, support others suffering from it and push for research. Oct. 7 has been designated the first International Trigeminal Neuralgia Awareness Day.
According to the TNA, cause of the disorder is not entirely clear, but it may have to do with a deteriorated covering of the nerve related to pressure, injury or aging. Most people afflicted with TN are over 50 years of age, but even children can be affected. TN, also known as tic douloureux, is not fatal, but there is no known cure for it.
“A lot of people let their teeth go because they can’t brush,” said Hays. “It’s terrible. It’s just a terrible situation.”
“You’re constantly in fear of the pain, you get depressed, start withdrawing, “ said Hays. Others who can’t comprehend the disorder minimize it, or pigeonhole it as TMJ.
Lack of understanding and awareness of the condition also often results in years of misdiagnosis. According to the TNA, the rare condition probably affects about 1 in 25,000 people.
“The problem is it’s misdiagnosed for so long,” said Hays. During that time, the TN can progress.Hays noted that a lot of people go to their dentist first, and may even wind up getting teeth pulled.
Once it is finally correctly diagnosed, Hays said it may still be difficult to treat. Medications to control the condition, often the same ones used to treat seizures, are generally the first route of attack. If those prove ineffective, surgical treatment may be considered.
“Of course, brain surgery really makes you excited,” said Hays.When medications failed to manage her own condition, Hays underwent surgery in September 2003, and it did the trick. “I have never forgotten the pain – even now.” She takes nothing for granted.
“I may never get it back. I may get it back tomorrow,” said Hays. “Just one day at a time.”
Hays established the support group in 2007, with 28 people showing up for that first meeting. The group has grown to include people from all over Central Indiana, including 25 from Madison County alone.
“Nobody ever knows anyone else that has it,” said Hays. “We look normal. We can be in pain, but we look normal. People just don’t really get it.” She noted that persons who suffer from the condition are often reluctant to talk about it because “people just brush them off.”
Helen Nicholson of Anderson has been a member of the group since 2009.
“It helps. She’s had good programs,” said Nicholson. “Just hearing other people’s problems and situations has helped. Each time, I get some little hint of something I might do.”
First diagnosed with TN in 1990, Nicholson describes herself as being more or less in remission through the use of medications. Even so, Nicholson said, “I have a little bit of pain all the time.” Nor has it been an easy road.
“I’ve gone through times where it’s lasted for five hours at a time. When that occurs, I can’t move. The pain is so excruciating. I just have to sit and let it work itself through. I can’t talk. I can’t move.”
“I’ve always had the fear it would happen in a public place and they would think I was having a heart attack,” said Nicholson. When she flies, she puts a note in her pocket to explain what’s going on in case she has TN pain and cannot speak. “Strong winds will set it off or touching my face, but other times, I don’t know what causes it. I never know for sure.”
“Sometimes it’s called the suicide disorder because it can be so severe,” said Nicholson. “Some of the people at support group have had it far worse than I.”
The Trigeminal Neuralgia Association support group of Central Indiana meets at 10 a.m. on the third Saturday every other month at the Trinity Life Center, 5900 State Rd. 13 S. in Pendleton. The next meeting takes place Nov. 16. For more information, contact Hays at 765-534-5053 or email email@example.com.
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A neuropathic disorder involving the trigeminal nerve that causes severe facial pain. Who has it? According to the Trigeminal Neuralgia Association, TN affects about 1 in 25,000 people, affecting women slightly more frequently. Most sufferers are affected in their 50's or 60's, but it can occur at any age. What causes it? That's not entirely clear. According to the TNA, it may be due to a deteriorated covering of the trigeminal nerve as the result of pressure from blood vessels or tumors, multiple sclerosis, injury or aging. How is it treated? Medication is generally the first treatment option. If that proves ineffective, surgical treatment is a possibility. Where to learn more? Check out the Trigeminal Neuralgia Association Support Group. Online visit TNA's website at www.endthepain.org.