Living with the World's Most Painful Condition: A Man's Journey with Trigeminal Neuralgia
By Garry Owen
BBC Wales
Gerwyn Tumelty, a man from Pontarddulais, Swansea, endures a condition so excruciatingly painful that it's been dubbed 'the world's most painful known medical condition'. It feels like a screwdriver in the side of his face, with pain so severe that he contemplated not being around anymore. His three children grew accustomed to him abruptly leaving the dinner table mid-meal, as a piece of food could trigger an agonizing attack.
This condition, known as Trigeminal Neuralgia (TN), is caused by a nerve being strangled by a blood vessel in the face. It's often misdiagnosed as toothache, and attacks can be triggered by something as simple as a gust of wind. According to the Trigeminal Neuralgia Association UK, TN is the most painful condition known in the medical world.
The condition affects about eight in every 100,000 people annually, according to NICE. Aneeta Prem, another sufferer, endured a seven-year diagnosis journey, during which doctors told her there was nothing wrong with her despite her describing 'lightning' going through her face. She experienced sharp pains in the jaw, like electric shocks.
Gerwyn described the pain as feeling like someone putting a screwdriver in the side of his face, which was truly horrible. As a successful businessman, he faced a new challenge that dominated his life for two years from 2017. He contemplated not being around, unable to imagine the impact on his family.
Trigeminal Neuralgia is caused by the compression of the trigeminal nerve, which transmits sensations of pain and touch from the face, teeth, and mouth to the brain. This compression occurs when a nearby blood vessel presses on part of the nerve inside the skull. Attacks can be triggered by lightly touching the face, washing, eating, or even a slight breeze.
The attacks can last from a few seconds to about two minutes, and in severe cases, happen hundreds of times a day. Gerwyn, after enduring severe pain just by eating, underwent neurosurgery in 2019 to relieve pressure on the nerve causing the pain. The procedure involves opening the skull and removing a small section of bone, carrying a risk of serious complications, including facial numbness, hearing loss, stroke, and even death in around one in every 1,000 cases.
Despite the risks, the surgery provided Gerwyn with the longest-lasting relief, with some studies suggesting that pain returns in about three out of 10 cases within 10 to 20 years of surgery. However, the treatment didn't completely alleviate the impact on his mental health.
In 2022, Gerwyn faced a relapse of dark thoughts, initially keeping his feelings hidden. He felt really low and lonely, but was fortunate to have friends he could talk to, which helped him open up. It was during a few drinks with former Navy colleagues that he decided to share his feelings, a decision that transformed his life.
Since then, Gerwyn has focused on healthy living, exercise, and outdoor activities. He has completed the London Marathon and hiked in countries like Morocco. The biggest change, however, is his daily routine of doing something difficult, particularly ice baths on his patio, which requires routine and self-discipline, leaving him ready to face the day and life.
Aneeta Prem, another sufferer, has not been as fortunate. Despite undergoing the same procedure as Gerwyn, it was not successful. She lives with Bilateral TN, a rare form of the disease where pain can occur on both sides of the face, sometimes simultaneously. It took her seven years to be diagnosed, and she still struggles with outdoor activities in winter due to the cold wind triggering attacks.
Aneeta is now the chief executive of the Trigeminal Neuralgia Association, emphasizing the importance of early diagnosis and support, especially at GP practices and dental surgeries. She believes Wales has a successful system involving a multidisciplinary team that is skilled at diagnosing TN. Once diagnosed, people can be fast-tracked through the system to receive the best possible care.
However, the charity sees the devastating impact of living with pain that can take over one's life. Aneeta shares that 33% of people have contemplated taking their own life, and over 80% have never sought help. She highlights the isolation and loneliness experienced by those with extreme pain, who feel ashamed to talk about their pain and its impact on their lives.
The Trigeminal Neuralgia Association holds meetings in Wales, either in person or virtually. For more details, contact Admin@tna.org.uk. If you've been affected by any issues in this story, you can reach out to the BBC Action line for support.
