The incurable ‘suicide disease’ that causes debilitating pain — and can be triggered by smiling

They say laughter is the best medicine — unless it feels like a lightning bolt to the face.

That’s the brutal reality for sufferers of trigeminal neuralgia, a nerve disorder so painful it’s earned a chilling nickname: the “suicide disease.”

Roughly 15,000 Americans are diagnosed each year, making it one of the top causes of facial pain in the US. Here’s what you need to know about the condition that turns everyday moments into sheer agony.

What is trigeminal neuralgia?

The condition affects the trigeminal nerve, which provides sensation to most of the face and the surface of the eye, according to the Mayo Clinic.

When it flares up, trigeminal neuralgia delivers an intense, stabbing pain often described as an electrical shock to one side of the face. 

It can be triggered by common actions such as brushing your teeth, shaving, applying makeup, chewing, eating, talking, smiling or yawning. Even a light breeze can send a patient into a world of hurt.​

“It was the worst pain I’ve ever imagined. It was like someone taking a hot knife and putting a hot electrical wire to it,” said Ben Weiskopff, a patient with the condition, in an interview with UPMC Medicine.

“Even to make eye contact with someone was hard because my eye would water and I would have spasms of pain,” he added. 

Why is trigeminal neuralgia nicknamed the “suicide disease”?

The unyielding pain of trigeminal neuralgia can push sufferers to their breaking point, significantly affecting their quality of life and often leading to severe severe anxiety, depression and even suicidal ideation. 

“I stopped going out or even being with friends. I never knew when the pain would hit or how long it would last,” Kristin L. Fletcher, a retired attorney with the condition, told Weill Cornell Medicine. 

“I have a very high threshold for pain, but even I began telling myself (and several close friends) that if the meds failed and surgeries didn’t help, I would go into the woods and end it all,” she added. 

It’s a tragic thought that many sufferers share. 

A recent study of 229 adults with trigeminal neuralgia found that suicidal thoughts are shockingly common. More than a third reported contemplating suicide in the past week, over half had thought about their own death and 14% admitted to considering self-harm.

What causes trigeminal neuralgia?

The pain often comes from a rogue blood vessel pressing against the trigeminal nerve at the base of the brain. This constant pressure prevents the nerve from functioning properly, sparking sudden, debilitating pain, according to Johns Hopkins Medicine.

But blood vessels aren’t the only culprit. Stroke, facial trauma — even a routine dental procedure — can trigger the storm of pain.

Tumors near the trigeminal nerve or aneurysms pressing on it can also damage the nerve and increase the risk of developing the condition.

Who’s most at risk for trigeminal neuralgia?

Anyone can be affected by trigeminal neuralgia, but risk for developing the condition increases with age and is most common in people 50 and older. Women are also more frequently affected than men. 

People with multiple sclerosis, a chronic disease that affects the brain and spinal cord, are also at an increased risk for developing trigeminal neuralgia.

Other factors that may increase your risk of developing trigeminal neuralgia include high blood pressure, smoking and having a biological family history of the condition.

Can you cure trigeminal neuralgia?

Not exactly — but there is hope. 

Doctors often start with medications that can lessen or block pain signals to the brain, such as anti-seizure drugs, antidepressants and muscle relaxers. 

For some, this is enough to live a relatively pain free life. But when pills don’t cut it, there are several surgical options available.

Weiskopff underwent a microvascular decompression procedure — a delicate operation that separates the nerve from the offending blood vessel and places a cushion between the two to relieve pressure. 

The result? “Not even a glimmer” of pain, he said. “Think of the worst pain ever, and the next day it’s completely gone.”

Fletcher also had the surgery — and she’s now pain-free and off of all her meds.

Other options include stereotactic radiosurgery and percutaneous radiofrequency rhizotomy.