'I remember having a hole drilled in my head and feeling better'

By Jessica Porter KVAL News with KVAL.com staff Published: Feb 4, 2013 at 2:30 PM PDT Last Updated: Feb 7, 2013 at 3:23 PM PDT

SPRINGFIELD, Ore. - Jenny LeCompte has suffered from trigeminal neuralgia for over 15 years.

"As a 15- or 16-year-old, I could only describe it as being struck by lightning or having someone stab me with an ice pick over and over and over again," she said.
 
Even the lightest touch can trigger tremendous pain.

"I walked out in the wind and wind hit my face," LeCompte said, "and I just fell to my knees."

Some say the disease is the worst pain known to man. It has been dubbed "the suicide disease" because so many sufferers take their own lives.

"One of the most recent patients I've had that did well with surgical treatment mentioned suicide as how painful it was," said Dr. David Lippincott.

Dr. Lippincott said the disease is triggered when a nerve at the base of the skull becomes compressed by an artery. Imagine having spasms of pain up to 20 times a day, never knowing when the next one will occur or being worried your daily routine will cause an episode.

LeCompte has had three brain surgeries in attempts to alleviate the pain, the most recent in August.

"I remember having that surgery here in Eugene," she said, "and waking up after surgery having a hole drilled in my head and feeling better." 

The relief didn't last, and there were side affects. She has vertigo problems, difficulty speaking - and the pain is still there.

"I cannot stand for more than four hours. Otherwise I have to lay down at a 90 degree angle or the pressure in my head builds really intensely."

"There really aren't options beyond that to cure the condition," Lippincott said. "Usually what we would do is cycle back and try medicines they may not have been tried on."

LeCompte lost her health insurance and the side effects have made it impossible for her to work.

"I was working until the date of my last surgery and then ran out of short term disability so i did get terminated from my job." 

LeCompte said her son keeps her going but that raising him without being able to work is a challenge.

"It's important for people to know about it and hopefully raise awareness to where they are looking for a cure," LeCompte said. "I mean they are looking but to really realize that it impacts people to the point of wanting to end their life."