Last June, Mike Coston was on vacation in the Smoky Mountains when a pulsating pain deep behind his eye hit with such intensity that he fell to the floor screaming.
"It felt as if I had grabbed a hold of an electric fence and couldn't let go," he said. "If I could have ripped my eye out, I would have."
Even worse, Coston said, he didn't know when the next attack would come. A second pain struck during breakfast the next morning and another on the drive home. And they kept coming, sometimes as often as 25 times a day.
Fortunately for Coston, a doctor quickly diagnosed the problem, and after medication failed to totally relieve the symptoms, he underwent surgery at UT Southwestern Medical Center at Dallas. Today, he is pain-free and hopes to educate others about a condition that he had never heard of until he got it.
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Dubbed suicide disease, because the pain drives some sufferers to kill themselves, trigeminal neuralgia affects an estimated 1 in 15,000 to 20,000 adults. The longer people go without relief, the more likely they are to become depressed. Many never get a correct diagnosis and suffer for years.
It can start out as an occasional twinge but often progress to more frequent and painful attacks that some say feels like being stabbed with an ice pick. The pain can be focused on one side of the face or spread across it.
Coston's wife, Dianna, said she had never met anyone with the disease before her husband began experiencing the excruciating pain. She searched online for answers as to why her husband would suddenly lose control and drop to the floor in agony.
Some people undergo unnecessary root canals and try different medications in an attempt to relieve the pain, said Dr. Tony Whitworth, assistant professor of neurological surgery at UT Southwestern. The suicide rate for people with the disease is considerably higher than for the general population.
The pain is caused by an artery that gets kinked up, rubbing against a nerve in the brain. People can live for decades with the condition and never know it. But with time, the nerve's insulation wears down, leaving it exposed and raw. When that happens, it can cause intense pain that radiates from behind the ear to the eyes, lips, nose, scalp or forehead.
In Coston's case, the burning pain did not show up until he was 59. But when it did, it drove him to his knees for a minute or two each time.
It would stop just as abruptly, he said, and he would be pain-free until the next episode.
Anti-seizure medication took the edge off the pain, but it made him sleepy, said Coston, who grew up in Mesquite and now lives in Kilgore. Only surgery promised a permanent solution.
In March, Coston underwent a procedure called microvascular decompression to relieve pressure on the trigeminal nerve. During the surgery, a small hole was made behind Coston's ear to expose the nerve. The kinked blood vessel around the nerve was then decompressed, relieving the pain.
He left the hospital using a walker but was soon able to do most of the things he did before the surgery. Occasionally he experiences dizziness and balance problems, but Whitworth said those symptoms are temporary and part of the recovery process.
After a month off, Coston returned to work as president of the Kilgore Chamber of Commerce.
"I have to do a lot of public speaking, and I was always afraid this would hit me then," he said. "I wanted to do whatever had the greatest success rate, and this was it."
JAN JARVIS, 817-390-7664