Exclusive | I spent 7 years battling the excruciating ‘suicide disease’ — I couldn’t even smile without pain

Natisha “Tish” Long is familiar with what’s considered to be the most agonizing sensations known to humans.

Since 2018, an unbearable “shocking, throbbing pain” would course through her face at random, lasting from seconds to minutes each time. 

“When I got my shocks, it was all-in-one, everything hit me,” she told The Post. Every second that passed felt like an eternity. “It’s just there and you’re waiting for it to ease up. Sometimes I’d have to stop and just wait until that whole shock was over with before I could function.”

The mom of four has trigeminal neuralgia, a neurological condition nicknamed the “suicide disease” because of how brutal its episodes are.

“You can’t smile, you can’t brush your teeth, you can’t wash your face. Any little thing, the wind hitting it, it’s pain,” Long said.

It’s no surprise that these episodes cause extreme emotional distress, anxiety and depression. It’s not just a nickname — research shows people with this disease are at increased risk of suicide and self harm.

But experts are trying to move away from the nickname because treatment options are available that provide long-term relief. After seven long years, Long found it for herself with a first-in-the-world procedure at University Hospitals in Ohio.

Tish’s story

“It was very, very hard to function because I still had to work and be a mom,” she said. “I was working through pain … I don’t know how I did it. When I look back, I’m like, how did I go to work for 12 hours and put like this little game face on?”

Her condition stole both her signature smile and bubbly personality.

“At work, people could see [the pain] in my face,” she said. They’d ask her what’s wrong, and in response, “I had to mumble. I couldn’t really open my mouth too much so I wouldn’t get triggered; I tried to be as quiet as possible.”

It all started with tingling on her upper jaw. She saw a dentist multiple times, who couldn’t find anything wrong. She was prescribed a new toothpaste and mouthwash, but neither helped. 

The pain spread down to her lower jaw and got worse. She saw a physician, who suggested it might be facial neuropathy, a broader category of nerve dysfunction in the face that can include numbness and constant, dull pain.

Doctors prescribed gabapentin and carbamazepine, which initially helped.

“As soon as you wake up, you take your pills because you’re gonna wake up in pain,” she said. “You’re going to sleep in pain, you’re waking up in the pain. [My friends] always knew, Tish has to have her bag of pills … if I forgot, I’m like, I got to go home. You know, I can’t function.”

But soon, her episodes became even more frequent and intense, breaking through the little relief the medicine provided.

Treating trigeminal neuralgia

The most common form of the condition occurs when a blood vessel presses against the trigeminal nerve near the brainstem. The pressure can damage the nerve’s protective covering, causing it to send pain signals erratically.

This causes that “shocking, shooting, stabbing, lancing pain in your face,” explains neurosurgeon Dr. Michael Staudt, who treated Long at University Hospitals.

Those medications Long was taking were originally developed to treat seizures, but they can also help calm overactive nerves and relieve nerve pain. Patients often have to increase their dose rapidly to keep up with worsening episodes, making tradeoffs with side effects like brain fog, confusion, and weight gain, Staudt said.

Still, medication “doesn’t work for everybody,” he said, with “at least 30%” not seeing lasting relief from drugs. Long was one of the patients for whom medication no longer worked.

So she underwent what’s considered the standard for surgical treatment of the condition: microvascular decompression, which lifts that problematic blood vessel off the nerve using a little piece of sterile Teflon.

“It’s something we do all the time, but it is brain surgery, it can take three-ish hours,” Staudt said. “The patient has to be admitted for a couple days.” Plus, there are risks that come with brain surgery, including infection and brain fluid leaks.

That said, it’s “actually curative. The pain doesn’t come back [in] about 70 to 80% of cases,” he says. For a while, this surgery helped Long. She even went off medication.

“Then just all of a sudden one day I was hit again with this intense [pain]. I mean it was worse than the first time,” she said. “It was debilitating. I knew exactly what it was.”

She tried to get it back under control with medication for months, but “it was just unbearable, even with the medicines.”

Tish’s first-in-the-world procedure

With that first surgery a bust, Long got in touch with Staudt to do a radiofrequency ablation on the nerve. The procedure uses heat to damage specific nerve fibers that carry pain signals from the face to the brain.

During the surgery, a needle is inserted about 2 cm off the side of the mouth. Using X-ray, surgeons find the trigeminal ganglion at the base of the skull, and doctors burn the nerve using radiofrequency.

“When we damage it, it stops the pain signals. You get numbness, typically,” Staudt said. “It’s like when you have novocaine for dental work.”

Unlike microvascular decompression, ablation is minimally invasive and takes just 20 to 30 minutes, with results evident as patients are “rolling out of the operating room,” Staudt said. However, the relief can be temporary. Over time, nerve fibers may recover, allowing the pain to return.

“On average, it [takes] between two to five years,” Staudt said. “I’ve seen patients 10, 20 years out. I’ve seen patients come back in a month with pain. But on average, it’s two to five years, and then they can come back and have another procedure.”

In December, Long became the first patient in the world to undergo trigeminal nerve ablation using a new system called OneRF. University Hospitals was the first health system to offer the technology.

While the technique is “nothing new,” Staudt explains, the machine allows for a novel “streamlined” procedure.

OneRF’s probe can map multiple nerve locations from a single insertion, rather than requiring surgeons to repeatedly reposition the needle.

After her treatment, Long felt immediate relief from the excruciating shocks.

“The same day I just came home and it was just like a whole bunch of numbness… Like you had got your teeth pulled,” she said. More importantly, “no shocks, no triggers, no nothing over there, nothing.”

Above all, she feels like herself again. “When I came back to work, everybody was like, Oh, you’re smiling!”