The shocking, stabbing pain disorder you've never heard of

iReporter Leslie Martella and her son Garrett Buckelew, then 12, before his first trigeminal neuralgia surgery.

Story highlights

  • Trigeminal neuralgia is a facial pain disorder
  • The disorder affects 12 out of 100,000 people per year
  • Group of patients is hosting the first Trigeminal Neuralgia Awareness Day on October 7
  • Read some of their stories on CNN iReport
Imagine shocks radiating across your cheek, a knife cutting into your skin or the feeling of hot coal burning your face, but not being able to find relief from the pain for months, or even years.
That's what some trigeminal neuralgia patients say they endure on a regular basis.
Trigeminal neuralgia is a facial pain disorder associated with the trigeminal nerve, which carries sensation from your brain to your face. Slight touches to the face, whether it's a breeze, hair falling onto your temple or simply brushing your teeth, may trigger flashes of pain. The pain is most commonly caused by a blood vessel pushing on the trigeminal nerve. There is no cure.
It affects approximately 12 out of every 100,000 people per year, according to the National Institute of Health, and is more common in women and people over 50.
"Trigeminal neuralgia is an uncommon disease and as a result, most physicians have very little experience with it. That is one of the reasons it's difficult to diagnose," said Ronald Brisman, a New York neurosurgeon who specializes in the disorder.
The unbearable pain and search for a cure, as well as the medical field's unfamiliarity with the disorder, has led a group of about 30 trigeminal neuralgia patients to fight for awareness. Several of them, in addition to others with the disorder, started by sharing their personal stories with CNN iReport.
'I want to imagine a world where nobody has ... this pain'
Nikki Samuel is one of those people. Her goal is to educate others about the disease, as well as let people know about the first International Trigeminal Neuralgia Awareness Day on October 7. Dozens of buildings and structures across the world are lighting up teal for the day.
"If we know that somebody, somewhere is looking for a cure and not just another medication or an even more invasive, risky procedure, it gives us hope," she wrote in her iReport. "I want to imagine a world where nobody has to survive with this pain."
Samuel started experiencing the facial pain in 2005 and was diagnosed with Atypical Facial Pain. A variety of medications were ineffective and in 2008, the registered nurse from Leicester, England, admitted defeat and resigned from her job.