Many patients think about giving up on life. Surgery doesn’t work for everyone. Attacks can be triggered by a light touch to the face, during activities such as washing your face, eating or brushing your teeth. Or even a breeze.
Gerwyn Tumelty felt as if a screwdriver had pierced her face. The pain was so intense that I even thought about giving up on life. At 52 years old, he said that his three children got used to seeing him leave the table in the middle of meals, after a simple food item triggered the agony.
Sofria gerwyn south trigémeodescribed by British charity Trigeminal Neuralgia Association UK as the “most painful condition known to medicine”.
The disease occurs when a blood vessel compresses or trigemeal nerve on the face, responsible for sensitivity in that area.
Often, it is confused with toothacheand crises can be triggered by something as simple as a gust of wind.
According to the United Kingdom’s National Institute for Health and Care Excellence, around 8 out of every 100,000 people develop trigeminal neuralgia each year. It is estimated to occur in approximately 1 million people worldwide, it is more common from the age of 50 and affects women more than menaccording to .
Another patient told the BBC that it took seven years to be diagnosed. Despite describing the sensation of “lightning” going through his face, the doctors assured that there was nothing wrong.
“I felt sharp pains in my jaw, like electric shocks“, describes Tumelty, from Pontarddulais, Wales. “It felt like someone was sticking a screwdriver into the side of my face. It was really horrible.”
A successful businessman, starting in 2017, he faced a new challenge that, for two years, came to dominate his life.
“I had thoughts of not being here anymore, of not existing,” Tumelty said. “What kept me going was imagining the impact it would have on my family. But I didn’t see an end to it. It was a desperate time.”
“It’s the worst,” said Blink-182 drummer Travis Barker, who also suffers from the disease, in Joe Rogan’s case: “they call it the suicide disease“.
What is it and how does it arise
Trigeminal neuralgia is generally caused by compression of the trigeminal nerve, responsible for transmitting pain and touch sensations from the face, teeth and mouth to the brain.
This happens when a nearby blood vessel presses on part of the nerve inside the skull.
Attacks can be triggered by a light touch to the face, during activities such as washing your face, eating or brushing your teeth. Even a light breeze can trigger pain.
Attacks last from a few seconds to about two minutes and, in severe cases, may occur hundreds of times a day.
According to experts interviewed by the BBC News report, trigeminal neuralgia is more common in elderly people due to the degenerative process of blood vessels caused by advancing age. In younger people, it is generally associated with other health problems, such as tumors at the base of the skull, vascular compression or diseases such as multiple sclerosis.
However, in rare situations, there is a possibility that the disease may appear without an apparent cause.
There is no cure, only treatment
The main symptoms of trigeminal neuralgia are intense pain in the face, similar to electric shocks, tingling in the face and red, watery eyes. According to neurologiststhere is no talk of a cure for the disease, but rather of controlling the crises of intense pain caused by it.
Treatment varies according to each patient’s situation and, in most cases, they are indicated medicines to control crises, according to experts. It is also recommended acupuncture. There are situations in which the surgery is indicated in an attempt to correct the malformation of the trigeminal nerve and thus reduce crises, improving the patient’s quality of life.
After years of experiencing intense pain when eating, Tumelty underwent neurological surgery in 2019. The procedure, carried out under general anesthesia, involves opening the skull and removing a small fragment of bone to relieve pressure on the nerve responsible for the pain.
The risks can be serious: facial numbness, hearing loss, stroke and death in 1 in every thousand cases. In contrast, surgery offers the longest-lasting relief. Studies show that the pain returns in about 3 out of 10 patients between 10 and 20 years later.
But the surgery worked for Gerwyn, who made a remarkable recovery. Although the treatment resolved the physical pain, the effects on his mental health remained. In 2022, dark thoughts came back to haunt him and, initially, he kept his feelings a secret. “I felt very low and alone”, he adds. “I was lucky enough to have friends I could talk to, and that helped. Before that, I hadn’t talked to anyone. I opened up.”
It was during a drink with former Navy colleagues that he decided to talk about what he felt. The decision, he says, transformed his life.
Since then, he has adopted a healthier lifestyle, with exercise and outdoor activities. He completed the London Marathon and went hiking in countries like Morocco. But the biggest change happened at home, with a new habit: doing “something difficult” every morning. In particular, ice baths not quintal.
According to him, the practice requires routine and discipline, and leaves him prepared to “face the day and life”.
Aneeta Prem was not so lucky. Despite having undergone the same procedure as Gerwyn, the surgery was not successful. Lives with bilateral trigeminal neuralgiaa very rare form of the disease in which pain attacks can occur on both sides of the face, sometimes at the same time. Still, it took seven years to be diagnosed.
“I felt intense facial pain. It felt like lightning went through my face,” he said. “At first, I thought it was a toothache and I even had a wisdom tooth removed. If it continued like this, I could have lost all my teeth.” She says she stopped talking about the problem after repeatedly being told that “there was nothing wrong” with her.
In the end, the diagnosis only came after a consultation with a substitute doctor at her health center, who referred her for additional tests. To this day, Prem avoids going out in winter, as the cold wind can trigger a crisis.
Today, she is executive director of the Trigeminal Neuralgia Association. For Prem, early diagnosis and support are essential, especially in doctors and dentists’ offices. He states that Wales has an efficient system, which involves a multidisciplinary team “very effective in diagnosis”.
“Once diagnosed, people can be referred with priority through the system to obtain the best possible care,” he said. Still, the institution claims to witness the effects of it on people’s lives, capable of “taking control of their routines”.
“Unfortunately, We see many patients talking about taking their own lives. Around 33% say they have already thought about it, but more than 80% have never sought any type of help”, says Prem.
“People are in extreme pain, but they are almost ashamed to talk about the pain and how it affects them. The isolation, the loneliness, the inability to leave the house because the pain literally takes your breath away.”
