News From Terre Haute, Indiana

September 20, 2013

Rare neurological disorder causes extreme pain from simple tasks

Lisa Trigg
The Tribune-Star

TERRE HAUTE — The painful attacks began in 1996 for Eloise Lovell, then 54. Stabbing zaps of searing pain struck her right cheek, then disappeared as quickly as they came. Over time, the condition worsened to more intense episodes.

The Parke County woman would later learn that the affliction was trigeminal neuralgia — or TN. It is a chronic pain condition that affects the trigeminal nerve, which carries sensation from the face to the brain. Pain medication has helped her condition tremendously, she said Thursday.

“Every day, I wonder if my medication will give out, or if it will in an hour, or whenever I lean over,” Lovell said.

Activities that can trigger an attack can be as simple as brushing your teeth, eating, drinking, talking, putting on makeup, smiling, washing your face, stress — or even a encountering a light breeze.

She said she may go several days without experiencing the sharp pain, but if her medication wears off even a little, she is susceptible to a sudden onset of pain in her face.

Now, Lovell hopes to raise awareness about TN, from which few people suffer, but which causes excruciating pain to those who feel it.

Oct. 7 has been designated as the first International Trigeminal Neuralgia Awareness Day, and Lovell hopes that enough people will contact the World Health Organization about the disease so that it is officially added to WHO’s “Health Topic” list and becomes eligible for research funding.

Fortunately for Lovell, soon after she had her first attack, her dentist recognized her pain issue not as a tooth problem as she had suspected, but as trigeminal neuraliga. She was directed to her doctor, who sent her to a neurologist. The third medication that she tried helped relieve the pain. But she still was stricken one day about a year ago with a pain attack that resulted in about 20 minutes of seizures followed by a hospital visit.

According to the support organization TNNME — Trigeminal Neuralgia and Me — the condition often strikes people age 50 or older, but can occur in younger people and children.

The ailment has been around for centuries — the ancient Romans recognized it —- but treatments have been varied and often unsuccessful, leading TN to be called “the suicide disease” by some.

Lovell said that her grandfather had the condition, and she can remember that when she was 15, a surgical procedure was used to sever his trigeminal nerve. That caused his face to sag, and he lost the sense of taste.

It is unclear if the condition runs in families, or how it begins, though there is evidence that some people who suffer concussions or head trauma can develop it. Estimates from the Facial Pain Research Foundation — www.facingfacialpain.org  — show that as many as 1 in 20,000 people globally have the condition.

An online effort at www.tnnme.com and at www.Facebook.com/tnnme.tn has been collecting signatures on a petition to send to the World Health Organization.

Lovell said she is willing to talk to local people who are experiencing TN. She said wehn she mentioned the condition to a friend recently, she was surprised to learn that the friend’s mother was also experiencing TN attacks.

“A lot of people have these symptoms, or it gets misdiagnosed,” Lovell said. “Some people have had extensive dental work because they think it’s a bad toothache. Or, doctors who are unaware of it can misdiagnose.”



Reporter Lisa Trigg can be reached at 812-231-4254 or lisa.trigg@tribstar.com. Follow her on Twitter @TribStarLisa.