'Cut people some slack': Man describes life with 'suicide disease' known for excruciating facial pain
PEWAUKEE, Wis. (CBS 58) -- It doesn't take much for Jason Berg to start feeling a debilitating pain in the right side of his face. Brushing his teeth, talking and feeling a stiff breeze on a chilly day are all things that can cause extreme discomfort. Sometimes, it doesn't even take that much.
"I could be in my chair, and somebody could just walk by me," Berg says. "That much wind would trigger it."
Berg is living with trigeminal neuralgia, TN for short; it's a nerve condition that has earned the nickname, "The Suicide Disease" because of the excruciating pain it causes.
According to Johns Hopkins Medicine, about 15,000 people in the U.S. are diagnosed each year with the disease.
The trigeminal nerve runs along each side of a person's face. The nerve splits into three sets of branches near the eye, cheeks and mouth. TN is caused by an artery that presses against the nerve, triggering the immense pain.
The disease can be caused by a facial injury or a dental procedure, but many times, it just happens later in life. TN affects women more frequently than men, and onset is most likely to happen to people older than 50.
Berg was diagnosed with the disease seven years ago. When asked how he'd describe life with trigeminal neuralgia, Berg only needs two words.
"Constant pain," he said. "Constant pain."
Berg was an engineer with Amtrak, and for five years, he tried to work through the pain. However, medication only did so much to manage the agony, and six surgeries did not cause the pain to subside. Two years ago, Berg retired after 28 years of operating passenger trains.
Jason Berg has undergone six surgeries in hopes of ending the facial pain caused by trigeminal neuralgia. So far, they haven't worked.
"The medication fog, everything got to be too much to still be behind the throttle of an engine," Berg said. "I didn't feel like making the front page of the newspaper."
While TN is sometimes referred to as "The Suicide Disease," Berg maintains it's something he'll never do, largely because of what he experienced during his time along the railroad.
"I have seen up close what happens when people decide they've had enough," Berg said. "And I've [witnessed] six [rail suicides] in my career."
Berg said that knowledge, along with the love of his wife and four children, is what keeps him going.
Jason Berg operated Amtrak trains for 28 years, but he retired two years ago as chronic pain from TN made it impossible to safely do his job.
Berg added that since retiring, he's tried to stay busy by volunteering. After all, the more active he is, the less time there is to think about the pain.
"I wouldn't say that [suicide] never crossed my mind, but it's something I would never take action on because of what I've been through," Berg said.
Suicide, however, is a very real concern in the world of chronic pain. Research published in the National Library of Medicine explored reported suicides in the U.S. between 2003 and 2014.
During that time, 8.8% of 123,181 suicides included in the study had evidence of the decedent suffering from chronic pain. From 2003 to 2014, the percentage of suicides that involved someone who dealt with chronic pain increased from 7.4% to 10.2%.
Berg believes by speaking publicly about his experience with TN, he can raise awareness while also letting others know they're not alone in their struggles.
He said he also wanted to remind people they never really know what someone else might be going through, especially since people afflicted with TN often times don't show any outward signs of injury.
"Cut people some slack is the biggest lesson I've taken away from it," Berg said.