Sufferers seek relief from debilitating pain of 'suicide disease'
SEATTLE -- There is a pain so intense, so excruciating, that people who suffer from it are known to take their own lives.
It's called Trigeminal Neuralgia, but it's nicknamed the suicide disease.
Vicki Dvorak of Kirkland sees beauty in the most basic of things. She might not have discovered her passion for photography if it wasn't for a debilitating condition that forced her to work from home.
"It's been a real mix of difficult and beauty. Hardship and joy," she said.
Two years ago, she developed severe facial pain.
"It reminds me of what a branding iron would feel like if it was going into the side of your face," she described. "A hot, searing kind of pain."
Dr. Lily Jung Henson at Swedish Medical Center made the diagnosis: Trigeminal Neuralgia, also known as the suicide disease, because it pushes some people to end their lives.
The trigeminal nerve carries sensation to your forehead, across the cheek and to the chin. If the nerve is irritated, that sensation is painful.
"It can be caused by a whole slew of different things," Jung Henson said. "A lot of times we don't know what causes it, what causes the nerve to be inflamed. Sometimes it could be because there's a blood vessel that pushes up against it and causes pulsation against the nerve which could irritate the nerve. Sometimes it could be irritated because of a condition like Multiple Sclerosis."
Charles Fields suffered from TN -- and lost hope.
"Suicide was my only option because I could not take it any longer," Fields said. "You can't continue to live when you feel like there is an ice pick being stabbed in your ear."
He said the day he planned to kill himself, he leaned about craniopathy, a specialized form of chiropractic medicine that brings him relief.
It was literally a life saver.
In Bellingham, Keith Carlson tried a chiropractor as well as acupuncture, medicine and more. But still, he suffered through sharp facial pain as many as 15 times a day.
Sometimes it was triggered by exercise and sometimes by seemingly nothing at all.
"Why can't they figure this out? I'm not the only one that's had this condition. But there's never any type of cure," he said.
And he's been looking for nearly 20 years.
Carlon's desperation pushed him - not to thoughts of suicide - but to brain surgery.
After another sufferer recommended he visit the Skull Base Institute in Los Angeles, he signed up for surgery without even meeting the doctor in person.
"There is desperation," he acknowledged. "I could try to live with it for the next 20, 30 years, however long I live. But will it get worse? I don't know."
Last week, the surgeon cut a dime sized hole behind Keith's ear, then buffered the red, irritated nerve with a piece of teflon. Within days, Keith was out of the hospital and says there is already an obvious difference.
After two decades of pain, he is optimistic he found his cure.
Vicki Dvorak's doctor offers a similar surgery at Swedish Medical Center, but Dvorak manages her pain with medication.
And she finds some solace in her success as a photographer that includes recently being asked to take photos for Vogue Eyewear in Italy.
"Really thankful and blessed that something good's come out of this," she said.
The incredible pain of TN stops Vicki short of saying it's been worth it.
But Vicki, Keith and Charles want others with the condition to know that they found options and hope.
Something that is life altering doesn't need to be life ending.
For more information on the symptoms and treatments for TN, visit Swedish Medical Center or the Skull Base Institute.
Vicki is part of an online support group.