For Natisha “Tish” Long, pain became more than a symptom—it became the organizing principle of her existence. Since 2018, she has lived with what many doctors describe as one of the most agonizing sensations a human being can endure: an unbearable, shocking, throbbing pain that would surge through her face without warning, lasting anywhere from a few seconds to several minutes. It was not the kind of pain you can brace yourself for, because it arrived randomly, at any moment, and with such force that it consumed everything else. “When I got my shocks, it was all-in-one, everything hit me,” she recalls. Every second stretched into an eternity. She would freeze mid-conversation, stop whatever she was doing, and simply wait for the wave to pass before she could function again. The condition has a clinical name—trigeminal neuralgia—but it is better known by a darker nickname: the “suicide disease.” That name is not hyperbole. The condition is so brutal, so relentless, and so intimately tied to everyday actions like smiling, chewing, brushing teeth, or even feeling a breeze on the cheek, that it causes profound emotional distress, anxiety, and depression. Research has shown that people with trigeminal neuralgia are at significantly increased risk of suicide and self-harm. For Tish, a mother of four, the nickname made terrible sense. “You can’t smile, you can’t brush your teeth, you can’t wash your face,” she says. “Any little thing, the wind hitting it, it’s pain.” The agony was not just physical; it stole her joy, her personality, and her sense of self.
Before the shocks consumed her life, there were quieter warning signs. It started with a strange tingling on her upper jaw, a sensation she couldn’t quite explain. She went to the dentist multiple times, but he couldn’t find anything wrong. She tried new toothpaste and mouthwash, hoping it might be a dental issue, but nothing helped. The tingling gradually spread to her lower jaw and intensified. A physician suggested she might have facial neuropathy, a broader category of nerve dysfunction in the face that can include numbness, tingling, and constant pain. She was prescribed gabapentin and carbamazepine, medications originally developed to treat seizures but commonly used to calm overactive nerves and relieve nerve pain. At first, they seemed to work, giving her a fragile sense of normalcy. But the condition has a way of outrunning the medicine. She had to take her pills the moment she woke up, because waking up meant waking up in pain. “As soon as you wake up, you take your pills because you’re gonna wake up in pain,” she says. “You’re going to sleep in pain, you’re waking up in 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.” The medications brought side effects too—brain fog, confusion, weight gain—and soon they stopped holding the pain at bay. Her episodes grew more frequent and more intense, breaking through whatever relief the drugs provided. She had to keep increasing her dose, but the trade-offs were becoming unbearable. Still, she had no choice. She had to work. She had to be a mom. She would put on a “little game face” and push through twelve-hour shifts, all while trying not to trigger another shock by opening her mouth too wide or moving too suddenly. People at work could see the pain in her face. They would ask what was wrong, and she would mumble, trying to stay as quiet and still as possible. It felt impossible, and yet she did it, day after day, because she didn’t know what else to do.
The underlying problem, doctors explain, is a mechanical one. The most common form of trigeminal neuralgia occurs when a blood vessel presses against the trigeminal nerve near the brainstem. That pressure can damage the protective covering of the nerve, causing it to send erratic pain signals to the brain. The result is the “shocking, shooting, stabbing, lancing pain” that Tish and so many others experience, explains Dr. Michael Staudt, a neurosurgeon at University Hospitals in Ohio who treated her. Medications can help calm those overactive nerves, but they don’t work for everyone. As Staudt notes, at least 30 percent of patients do not get lasting relief from drugs. Tish was one of them. She eventually underwent what is considered the standard surgical treatment: microvascular decompression. The procedure involves lifting the problematic blood vessel off the nerve and placing a small piece of sterile Teflon between them to keep them separated. It is brain surgery, requiring a hospital stay and carrying risks like infection and cerebrospinal fluid leaks, but it is also “actually curative” in many cases, with pain not returning in about 70 to 80 percent of patients. For a while, Tish was among the success stories. She had the surgery, her pain disappeared, and she even went off her medication. She allowed herself to believe it was over. Then one day, out of nowhere, the intense pain came roaring back. “I mean it was worse than the first time,” she says. It was debilitating, and she knew immediately what it was. She tried managing it with medication again for months, but it was unbearable even with the pills. The disease had returned, and it was angrier than before.
Determined not to give up, Tish got back in touch with Dr. Staudt to explore another option: radiofrequency ablation. This procedure uses heat to damage the specific nerve fibers that carry pain signals from the face to the brain. During the surgery, a needle is inserted about two centimeters off the side of the mouth, and using X-ray guidance, surgeons locate the trigeminal ganglion at the base of the skull. They then burn the nerve with radiofrequency energy. When the nerve is damaged, it stops sending pain signals, and patients typically experience numbness—similar to the feeling after receiving novocaine at the dentist. Unlike microvascular decompression, ablation is minimally invasive, takes only twenty to thirty minutes, and shows results almost immediately. Patients are essentially “rolling out of the operating room” pain-free, Staudt says. But the relief is not necessarily permanent. Over time, nerve fibers can recover, and the pain may return. On average, the effects last between two to five years, though some patients enjoy a decade or more of relief, while others need another procedure within a month. In December, Tish 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. The technique itself is “nothing new,” Staudt explains, but the machine makes the procedure more streamlined. OneRF’s probe can map multiple nerve locations from a single insertion, eliminating the need for surgeons to repeatedly reposition the needle. That means a faster, more precise procedure with less trauma to the patient. For Tish, it was the chance she had been waiting for.
After the procedure, Tish felt immediate relief. The unbearable shocks were gone. The triggers—the wind, the movement, the simple act of opening her mouth—no longer sent her into a spiral of agony. The same day she came home, she says, she felt a whole bunch of numbness, like she had just had her teeth pulled. But more importantly, there were no shocks, no triggers, no pain on that side of her face. It was as if the disease had simply been switched off. For someone who had spent seven years in constant fear of the next attack, the silence was overwhelming in the best way. She could sleep without dreading the morning. She could go to work without carrying a bag of pills and the anxiety of forgetting them. She could talk to her friends without mumbling, without guarding her face, without trying to be invisible. But the greatest change was emotional. The pain had not just hurt her body; it had buried her personality. It had taken away her signature smile and her bubbly nature. At work, people had grown accustomed to seeing the strain on her face, the quietness, the careful way she moved. When she came back after the procedure, everyone noticed the difference. “When I came back to work, everybody was like, Oh, you’re smiling!” she laughs. That simple observation meant the world. It meant she was herself again. It meant the disease no longer owned her. It meant that after years of feeling like a shell of the person she used to be, she had finally been given her life back.
Tish’s story is a powerful reminder of why experts are working to move away from the nickname “suicide disease.” The name reflects the devastating reality of living with trigeminal neuralgia, but it also carries an unspoken weight—a sense of hopelessness, a belief that there is no way out. That is not true. Treatments exist, and they are continually improving. From medications to microvascular decompression to newer, less invasive procedures like the OneRF ablation, patients have more options than ever before. Not every treatment works for every person, and the journey can be long and frustrating, as Tish knows firsthand. But her experience proves that relief is possible, even after a major surgery fails and even after years of suffering. Her resilience is astonishing: she kept working, kept mothering, kept fighting, even when every day was a battle. But she also had help—doctors who listened, procedures that worked, and a support system that never left her side. Her story is not just about a medical breakthrough; it is about the strength of the human spirit and the importance of hope. For anyone currently enduring the kind of pain Tish lived with, her message is simple: do not lose heart, do not suffer in silence, and keep looking for answers. The disease may be called the “suicide disease,” but Tish Long’s story is about survival. It is about waking up without pain. It is about smiling again. And it is about proving that even the most agonizing sensations known to humans can be overcome—one breakthrough, one procedure, one day at a time.
