Gerwyn Tumelty is a 52-year-old businessman and father of three from Pontarddulais in Swansea, Wales. In 2017, he began suffering from trigeminal neuralgia, a rare disorder that the Trigeminal Neuralgia Association UK calls “the world’s most painful known medical condition.” The pain came on suddenly with sharp electric shocks in his jaw. Even simple actions like a breeze or brushing his teeth could trigger unbearable attacks.
These episodes lasted from seconds to minutes and sometimes struck hundreds of times a day. Gerwyn described the sensation as someone putting a screwdriver into the side of his face, and it was really horrible. The pain affected only one side of his face, usually the lower part. It often gets mistaken for dental problems, delaying proper diagnosis.
Life became extremely difficult for Gerwyn and his family. His children grew used to seeing him abruptly leave the dinner table when food sparked an attack. He felt isolated and desperate during those two years. At the worst moments, he had thoughts of not being around anymore.
Gerwyn admitted he would think about not being here. What kept him going was concern for his family, though he could not see an end to the suffering. It was a truly desperate time. He later felt really low and lonely, even after physical relief came.
In 2019, Gerwyn chose a high-risk neurosurgery to address the root cause. Surgeons opened his skull and removed a small piece of bone to ease pressure from a blood vessel on the trigeminal nerve. The procedure carries dangers like facial numbness, hearing loss, stroke, or even death in roughly one in 1,000 cases. Studies show pain can return in about three out of 10 patients within 10 to 20 years, but Gerwyn’s operation succeeded.
After recovery, he embraced a healthier lifestyle full of exercise and outdoor challenges. He completed the London Marathon and hiked in places like Morocco’s Atlas Mountains. Gerwyn now takes ice baths in his garden twice a week to build discipline. These routines help him face each day with strength.
Mental health struggles lingered into 2022 despite the physical improvement. Opening up to former Navy colleagues over drinks marked a turning point for him. Support from loved ones made a huge difference. The Trigeminal Neuralgia Association UK notes that 33% of patients have considered taking their own life, yet over 80% never seek help due to shame and isolation.
Trigeminal neuralgia, also known as tic douloureux, involves the fifth cranial nerve that carries sensations from the face to the brain. Most cases stem from a blood vessel compressing the nerve near the brainstem. It affects around eight people per 100,000 each year. Women over 50 face higher risk, though it can strike anyone.
Common treatments start with medications to calm nerve activity. When drugs fail, options include nerve blocks, radiofrequency ablation, or gamma knife radiation. Microvascular decompression surgery, like Gerwyn’s, offers the best long-term relief for eligible patients. Early diagnosis remains crucial to avoid years of unnecessary suffering.
Have you or someone close to you faced a chronic pain condition like trigeminal neuralgia? Share your thoughts or experiences in the comments.
