Shocking, stabbing pain in the face -- when trigeminal neuralgia strikes, patients are left in agony. For some, the pain is a constant. With few effective treatments, sufferers are speaking out – putting on a brave face to share their stories and spread awareness.
“I woke up one day about 13 and a half years ago, just woke up with the pain," said trigeminal neuralgia patient Amy Tomasulo
Sharp, electric-like shocks radiated across the left side of Amy’s face.
“I had never felt any pain like that in my life," Amy said.
She went to a local walk-in clinic, where within an hour she had a name for the excruciating symptoms.
“He said, ‘I think you have trigeminal neuralgia,’ and of course I had no idea what that was," Amy said.
Not many do. Trigeminal neuralgia is rare. Only about 120,000 people in the U.S. have the condition. The cause -- a blood vessel presses against the trigeminal nerve as it exits the brainstem and branches out to the jaw, cheeks, eyes and scalp. Medications, particularly anti-seizure drugs, are commonly used to control pain. For some, surgical treatment helps relieve symptoms. But for others like Amy, there is nothing.
“Since that day it has never stopped. It’s just about coping and just hoping something will come along," she said.
At about the same time she was diagnosed, this guy came along.
“I was at my first job in tiny Rhinelander, Wisconsin. This young lady said, ‘Would you like to meet my friend over there?’ And I said absolutely! We just hit it off immediately. I don’t think we’ve gone a day since then without being in some kind of contact,” said Amy's husband, WGN Morning News anchor Pat Tomasulo.
From the beginning, Amy was open about her struggle.
“I told him the first day. There’s no hiding it,” Amy said.
“When the pain came it was pretty evident. You went from being with somebody who was upbeat and vivacious to being crippled in a matter of seconds," Pat said.
There was a failed surgery -- a microvascular decompression Amy had hoped would alleviate the pressure on her facial nerve -- visits to the Mayo Clinic and a month-long stay at a chronic pain program.
“Within a year I had exhausted every single medication that should work to control it if you have typical trigeminal neuralgia,” Amy said.
Daily life is unpredictable for the Tomasulos.
“My worst trigger is wind. So living in Chicago is great. Light touch is awful, blow dryer, brushing your teeth, eating, smiling, laughing. I live hour to hour sometimes. That’s just the way life is," Amy said.
Even during her interview with WGN, she felt pain. On a scale of one to 10, Amy said her pain was about a five.
"I can carry on a conversation with someone up to a seven," she said.
Nicholas Acevedo’s pain was at a six when we sat down with him. His symptoms began at age 8, when from time to time, he’d complain of ear aches.
“Pain right here. I thought it was deep in my ear," he said.
But last October, it became constant.
“An MRI, visits to the neurologist and it was confirmed that he did in fact have Trigeminal neuralgia," said Nick's mother Linda Foley.
"I’m the only kid in the Midwest with trigeminal neuralgia. Less than one percent of the world’s population of children have this condition. How was I so lucky to get it?” Nick said.
The good-natured seventh grader missed nearly 70 days of school last year – often too debilitated by an acute attack.
“It’s like throbbing pain," he said.
Medications help ward off severe episodes, but there are triggers Nick can’t always avoid.
“We had two polar vortexes. This winter was awful. I had attack after attack after attack," he said.
“When Nick is having his attacks it’s horrifying. I didn’t know how to help him, and that was awful. There would be nights he would be up, and he would be in agony. And I was so helpless," Linda said.
“I feel like now me talking about this somebody at home will say, ‘Let me Google what this is,’ and word will spread,” Nick said.
And that’s why Amy and Pat are speaking out, too – to spread the word. For the first time, there’s hope for a better treatment, maybe even a cure.
“I haven’t had hope for a long time in treating this or curing this so, it’s there. We just need some help,” Amy said.
And there is hope -- critical studies are underway supported by the Facial Pain Research Foundation. You can learn more at:
For more information about trigeminal neuralgia, check out the Facial Pain Association:
Pat Tomasulo is also doing a comedy show fundraiser for The Facial Pain Research Foundation on January 15.
"Laugh Your Face Off" will be held at the Laugh Factory, 3175 N. Broadway.
More details: http://laughyourfaceoff.org/
And we have an update -- Nick had surgery on his facial nerve last week in California. He’s recovering and his mother tells us he’s been pain free.