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Gerwyn Tumelty’s experience with an agonizing medical condition felt like “a screwdriver in the side of his face,” a pain so intense that at times he questioned whether he wanted to keep living. The 52-year-old from Pontarddulais, Swansea, recalled how even ordinary actions like eating could cause sudden, severe agony, leading him to frequently leave the dining table mid-meal. His three children became accustomed to witnessing these abrupt and debilitating episodes without warning.
Trigeminal neuralgia, the cause of Gerwyn’s suffering, occurs when a blood vessel compresses the trigeminal nerve, which carries sensations of touch and pain from the face to the brain. This condition is often mistaken for dental problems because the attacks can be triggered by simple activities such as eating, brushing teeth, or even a breeze. Another patient, Aneeta Prem, described feeling “lightning” pain coursing through her face but endured seven years of misdiagnosis, during which doctors repeatedly told her that nothing was wrong.
For Gerwyn, the relentless physical pain eventually led to neurosurgery in 2019, a procedure done under general anaesthetic involving the removal of a small bone segment to relieve pressure on the nerve. Despite risks including facial numbness, hearing loss, stroke, and death in rare cases, this surgery is considered one of the most effective long-term treatments. Gerwyn’s operation was successful, dramatically improving his physical symptoms; however, the mental toll of his condition persisted. Years later, dark thoughts returned, but opening up to friends helped him regain emotional stability. He now focuses on healthy routines, including exercise and daily ice baths, which he says prepare him to “face the day and to face life.”
In contrast, Aneeta’s surgery was not successful, and she lives with a rare form called Bilateral Trigeminal Neuralgia, experiencing pain on both sides of her face. Her diagnosis only came after a locum doctor ordered extensive tests. Aneeta now serves as chief executive of the Trigeminal Neuralgia Association and stresses the importance of early diagnosis and multidisciplinary care, especially within GP and dental practices. The charity highlights that many sufferers face isolation and consider taking their own lives, with 33% having contemplated suicide and over 80% never seeking help. Aneeta emphasizes the crippling loneliness and breath-stealing pain that defines the lives of those with this condition
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