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 \u00ab\u00a0the most painful condition that is known in the medical world\u00a0\u00bb, according to charity the Trigeminal Neuralgia Association UK.<\/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 (TN) annually, according to NICE.<\/p>\n
Another sufferer said it took seven years to diagnose her, and despite describing \u00ab\u00a0lightning\u00a0\u00bb going through her face, was told by doctors there was nothing wrong with her.<\/p>\n
\u00ab\u00a0I had sharp pains in the jaw, like electric shocks,\u00a0\u00bb is how Gerwyn, from Pontarddulais, Swansea, described it.<\/p>\n
\u00ab\u00a0It felt like someone putting a screwdriver in to the side of my face and it was really horrible.\u00a0\u00bb<\/p>\n
A successful businessman, for two years from 2017 he faced a new challenge that came to dominate his life.<\/p>\n
\u00ab\u00a0I’d have thoughts of not being around. Not being here,\u00a0\u00bb Gerwyn said.<\/p>\n
\u00ab\u00a0What kept me going was that I couldn’t imagine what effect that would have on my family.<\/p>\n
\u00ab\u00a0But, I couldn’t see an end to it. It was a desperate time.\u00a0\u00bb<\/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
\u00ab\u00a0I felt really low and lonely,\u00a0\u00bb he added.<\/p>\n
\u00ab\u00a0I 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.\u00a0\u00bb<\/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 \u00ab\u00a0something difficult\u00a0\u00bb every morning, in particular ice baths on his patio.<\/p>\n
He says it requires routine and self-discipline and leaves him ready to \u00ab\u00a0face the day and to face life\u00a0\u00bb.<\/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
\u00ab\u00a0I was having severe facial pain. It felt like lightning going through my face,\u00a0\u00bb she said.<\/p>\n
\u00ab\u00a0I initially thought it was toothache and had a wisdom tooth removed and that could have continued.<\/p>\n
\u00ab\u00a0I could have lost every tooth in my head.\u00a0\u00bb<\/p>\n
But she stopped talking about it after being told there \u00ab\u00a0was nothing wrong with me\u00a0\u00bb.<\/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 \u00ab\u00a0are really good at diagnosing it\u00a0\u00bb.<\/p>\n
\u00ab\u00a0Once people are diagnosed they can then be fast-tracked through the system to get the best possible care,\u00a0\u00bb she added.<\/p>\n
However, the charity says it sees the effects on people living with pain that can \u00ab\u00a0take over their lives\u00a0\u00bb.<\/p>\n
\u00ab\u00a0Very 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,\u00a0\u00bb Aneeta said.<\/p>\n
\u00ab\u00a0People have extreme pains but almost feel ashamed to talk about the pain and how it makes them feel.<\/p>\n
\u00ab\u00a0The isolation, the loneliness, not being able to go out because the pain just takes your breath away.\u00a0\u00bb<\/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
If you have been affected by any issues in this story, you can contact the BBC Action line<\/p>\n","protected":false},"excerpt":{"rendered":"
It felt like a screwdriver in the side of his face, with the pain so bad Gerwyn Tumelty contemplated not being around any more. 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. He was suffering from \u00ab\u00a0the most painful […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-9741","1":"post","2":"type-post","3":"status-publish","4":"format-standard","6":"category-uncategorized"},"_links":{"self":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/9741","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/comments?post=9741"}],"version-history":[{"count":0,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/9741\/revisions"}],"wp:attachment":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/media?parent=9741"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/categories?post=9741"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/tags?post=9741"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}