It felt like a screwdriver in the side of his face, with the pain so bad Gerwyn Tumelty contemplated not being around any more.<\/p>\n
The 52-year-old said his three children became used to him leaving the table mid-meal after a piece of food would leave him in agony.<\/p>\n
He was suffering from “the most painful condition that is known in the medical world”, according to charity the Trigeminal Neuralgia Association UK<\/a>.<\/p>\n It happens when a nerve is strangled by a blood vessel in the face, with it often misdiagnosed as toothache, and attacks caused by something as simple as a gust of wind.<\/p>\n About eight in every 100,000 people are affected by Trigeminal Neuralgia<\/a> (TN) annually, according to NICE<\/a>.<\/p>\n Another sufferer said it took seven years to diagnose her, and despite describing “lightning” going through her face, was told by doctors there was nothing wrong with her.<\/p>\n “I had sharp pains in the jaw, like electric shocks,” is how Gerwyn, from Pontarddulais, Swansea, described it.<\/p>\n “It felt like someone putting a screwdriver in to the side of my face and it was really horrible.”<\/p>\n A successful businessman, for two years from 2017, he faced a new challenge, that came to dominate his life.<\/p>\n “I’d have thoughts of not being around. Not being here,” Gerwyn said.<\/p>\n “What kept me going was that I couldn’t imagine what effect that would have on my family.<\/p>\n “But, I couldn’t see an end to it. It was a desperate time.”<\/p>\n What is Trigeminal Neuralgia?<\/p>\n Trigeminal neuralgia is usually caused by compression of the trigeminal nerve – which transmits sensations of pain and touch from your face, teeth and mouth to the brain.<\/p>\n This happens when a nearby blood vessel presses on part of the nerve inside the skull.<\/p>\n Attacks can be brought on by lightly touching your face, through washing, eating and brushing your teeth.<\/p>\n But they can also be triggered by even a slight breeze.<\/p>\n Attacks can last from a few seconds to about two minutes, and in severe cases happen hundreds of times a day.<\/p>\n After being left in severe pain just by eating, Gerwyn had neurosurgery in 2019.<\/p>\n Carried out under general anaesthetic, the procedure involves opening the skull and removing a small section of bone to relieve pressure on the nerve which is causing the pain.<\/p>\n It carries a risk of potentially serious complications, such as facial numbness, hearing loss, stroke and even death in around one in every 1,000 cases.<\/p>\n But it provides 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.<\/p>\n But surgery worked for Gerwyn and he made a remarkable recovery.<\/p>\n Although the treatment dealt with the physical pain, the effect on his mental health was still there.<\/p>\n In 2022, dark thoughts came back to haunt him and he initially kept his feelings hidden.<\/p>\n “I felt really low and lonely,” he added.<\/p>\n “I was lucky to have friends about that I could talk to and that helped. I hadn’t talked to anyone about it before then. I opened up.”<\/p>\n It was while having a few drinks with former Navy colleagues that he decided to talk about his feelings, which he said transformed his life.<\/p>\n Since then, he has been able to focus on healthy living, exercise and outdoor life.<\/p>\n He has completed the London Marathon as well as hikes in countries such as Morocco.<\/p>\n But the biggest change is closer to home, by doing “something difficult” every morning, in particular ice baths on his patio.<\/p>\n He says it requires routine and self-discipline and leaves him ready to “face the day and to face life”.<\/p>\n Aneeta Prem hasn’t been so lucky.<\/p>\n Despite undergoing the same procedure as Gerwyn, it was not successful.<\/p>\n She lives with Bilateral TN, a very rare form of the disease where the flashes of pain can occur on both sides of the face, sometimes simultaneously.<\/p>\n But it took seven years to be diagnosed.<\/p>\n “I was having severe facial pain. It felt like lightning going through my face,” she said.<\/p>\n “I initially thought it was toothache and had a wisdom tooth removed and that could have continued.<\/p>\n “I could have lost every tooth in my head.”<\/p>\n But she stopped talking about it after being told there “was nothing wrong with me”.<\/p>\n In the end her diagnosis only came after seeing a locum at her GP surgery who sent her for additional tests.<\/p>\n Even now, she struggles to go outdoors in winter, as cold wind can trigger an attack.<\/p>\n She is now chief executive of the Trigeminal Neuralgia Association.<\/p>\n Helping with early diagnosis and providing support is vital, especially at GP practices and dental surgeries, Aneeta believes.<\/p>\n She said Wales has a successful system which involves a multi-disciplinary team that “are really good at diagnosing it”.<\/p>\n “Once people are diagnosed they can then be fast-tracked through the system to get the best possible care,” she added.<\/p>\n However, the charity says it sees the effects on people living with pain that can “take over their lives”.<\/p>\n “Very sadly we see many people that are talking about taking their own life – 33% of people have thought about it, but over 80% have never sought any help,” Aneeta said.<\/p>\n “People have extreme pains but almost feel ashamed to talk about the pain and how it makes them feel.<\/p>\n “The isolation, the loneliness, not being able to go out because the pain just takes your breath away”<\/p>\n The Trigeminal Neuralgia Association holds meetings in Wales, either in person or virtually. You can contact Admin@tna.org.uk for more details<\/p>\n