Carole Harris connects with the right physician to resolve debilitating facial pain
Carole Harris, 73, enjoys her family and growing trees. She has 6 children and 21 grandchildren. Feeding her passion for nature, she has planted hundreds of seeds, saplings and mature trees in or near her small hometown in northwest Missouri.
But in late May 2017, Carole's ability to do the things she loved quickly disappeared. "I started having funny little twinges near my right eye," remembers Carole. Over the next few days, the fluttering feelings grew into pains that stabbed like electrical shocks and affected the entire right side of her face.
She says, "I had shooting pain in exactly half of my tongue. Half of my nose. My right eye. It was scary."
The episodes came and went without warning. A light breeze blowing across her cheek might trigger an attack. Changing her head position while sleeping could set it off. "Every time it happened, I would jump like I had received an electric shock," she shares.
Searching for answers
Carole visited her primary care physician, who wondered at first if she might have shingles. She also consulted with her local eye doctor, dentist and chiropractor. They were all supportive, but could not find the cause of her severe symptoms.
The primary care physician then prescribed a low dose of antiseizure medication.
"When this didn't help, I went to the hospital, where I stayed for nearly 3 weeks," Carole says. "They changed the dosage every other day until I finally went home taking 60 milligrams every 3 hours around the clock."
Carole says the drugs controlled her pain but made her life miserable. She had to take the pills every 3 hours, even throughout the night. Missing a dose was risky. Not only was the medication a hassle, it made her feel numb. "All I wanted to do was sleep," Carole explains. "I couldn't drive. I couldn't even walk a straight line. I needed two hands to pick up a glass of water."
Carole's husband, Mike, threw himself into researching her disorder online. He discovered a chronic pain disorder called trigeminal neuralgia. Carole says, "No one I knew had ever heard of it. And when I described it to people, they kind of found it hard to believe."
The trigeminal nerve starts at the brain stem and separates into 3 branches that supply feeling to different areas of the face. Neuralgia, or severe pain, of this nature often arises when a blood vessel presses on the nerve.
Mike continued his research. One day he told Carole, "I found a doctor in Kansas City and that's where we're going."
That doctor was neurosurgeon Michael Kinsman, MD, at The University of Kansas Health System in Kansas City.