CREATED Feb. 24, 2014
TUCSON (KGUN9-TV) - "There's not a moment that I do not have fear that this is going to go off," Diane Nolette told 9OYS. It's a fear that she has lived with for seven years.
"My sister saw me have an attack," Diane said, "and she couldn't talk about it for three days."
It's a sharp, excruciating pain in her face, maybe best described like this: "It feels kinda like being tasered in the face and then caught on fire."
Doctors believe, it's caused by a condition called trigeminal neuralgia; so painful, it's earned itself a more sinister name: suicide disease.
Years ago, before there was treatment, people had been known to kill themselves to get out of the misery of living with such a debilitating condition.
"There's still too many patients, and beyond that, too many doctors and dentists who don't understand this condition," Doctor Abhay Sanan told 9OYS.
Doctor Sanan is a neurosurgeon with the Center for Neurosciences in Tucson
, and although he says the condition reportedly only affects five out of every 100,000 people, many like Diane, are initially misdiagnosed.
"The pain is sharp, and it gets very, very often confused with dental conditions," Dr. Sanan said.
He sees many people come into his office with root canals and pulled teeth, who eventually figure out they have TN.
But, doctors think it comes from a blood vessel irritating a nerve in the brain.
Surgery works in more than half of all cases, but unfortunately, it didn't for Diane.
She has about ten attacks a year, and takes anti-seizure medication to control her pain, but someday, doctors say, that medication will stop working.
That's something she can't even think about.
But with support on Facebook
and awareness slowly spreading, Diane believes there's hope for her, and for others.
Doctor Sanan said these are the common symptoms of trigiminal neuralgia:
1) The pain is only on your face and it's sharp, like a needle or an ice pick.
2) It's often triggered by something specific, like chewing, or cold air on the face.
3) The attack only last for about a minute. after the attack, there's no pain at all.