Derbyshire woman living with ‘world’s most painful medical condition’ says it feels like her 'head is trapped in a bladed vice'
A woman has opened up about a rare medical condition known as 'the most painful in the medical world,' that leaves her feeling as if her head is trapped in a bladed vice.
Emma Marrison-Taylor, 34, of Clay Cross, been living with trigeminal neuralgia for seven years.
The condition causes intense facial pain and can impact things like eating, talking and smiling.
The pain began after Emma underwent facial surgery to remove excess cartilage that was affecting her ability to breathe through her nose and causing headaches.
During the surgery the trigeminal nerve, the largest facial nerve that spans from scalp to jaw, was damaged.
Emma said: “I feel like my head is trapped in a bladed vice, there’s constant pressure and pain, but many feel it more as lightning or needles in the face. The hardest part is the range of triggers that can cause an increase the pain so many are everyday things and so it’s not unusual to feel anxious about intense pain around the corner that will stop you talking and prevent you from going about your life as normal.”
Emma is taking part in the Great North Run in September to raise money for the Trigeminal Neuralgia Association, which raises awareness of the excruciatingly painful condition.
A recent survey by the charity found that 33% of people with trigeminal neuralgia have considered taking their own lives because of the pain, highlighting the urgent need for greater awareness and research.
Last year Emma, who worked in the NHS and has recently started her own business, completed the Monsal Trail Half Marathon and raised £2,697 for the cause.
Emma said: “Running can help the mental side of the condition, it provides and outlet and a sense of calm. However, physically it’s not good for the pain. When a light breeze is enough to set things off, running in all weathers can really increase what you’re feeling. I try and view it as short term pain for long term improvements in research and support.
"I’ve chosen to fundraise to support research into better treatments and to help provide support for people living with this condition now, as well as those who will be diagnosed in the future.”
To support Emma go to https://ajbellgreatnorthrun2026.enthuse.com/pf/emma-marrison-taylor