Excruciatingly painful ‘suicide disease’ means woman can’t kiss husband

By Adam Dutton and Julia Rodgerson

A woman says she is no longer able to kiss her husband on the lips after being diagnosed with a rare condition known as "suicide disease" — which is more painful than childbirth and feels like being electrocuted.

Emma Marrison-Taylor was diagnosed with Trigeminal Neuralgia in January 2021 after the trigeminal nerve, the largest facial nerve that spans from scalp to jaw, was damaged.

The 34-year-old says she now experiences daily agonizing pain that feels like her head is being trapped between a "bladed vice" and gives the sensation her "eyeball is going to pop out her head."

The condition, dubbed "suicide disease" by those affected because it makes patients wish they were dead, is a chronic, neuropathic condition causing intense and often unbearable electric shock-like facial pain.

It is often described as "the worst pain known to man" and affects around one in 10,000 people.

Emma, from Clay Cross, Derbys., says the pain is so severe she's unable to comfortably head out in cold weather, go to the cinema — or even kiss her husband Neil Taylor on the lips.

Emma, who works as an accessibility consultant, said: "Seven years ago I had facial surgery. I had excess cartilage in my nose and it was affecting my ability to breathe and giving me tension headaches.

"I had an operation to scrape all that away.

"But while they were working on my face, they nicked the nerve and damaged it.

"They said from the surgery I had it could take up to a year to heal fully. I was in pain but for the first six months I assumed it was part of the healing process.

"I got told that it wasn't normal when I went for a check-up and was prescribed carbamazepine. I didn't have a name for what I was going through.

"A year and nine months later I found out. It gets mistaken, quite often, for dental pain, a lot of people get teeth removed without the need.

"It can be quite personal, my interpretation is my head is trapped in a bladed vice, the pressure of that increases and decreases and never goes away.

"It's the sharpness. It varies, some say it's like lightning.

"I do talks on it and they always talk about an electric shock in the face. It's the most painful thing I've ever experienced.

"It's constant for me, but with the medication I can get a good five hours before it affects my speech.

"When I have a flare up I feel like my eyeball is going to pop out my head.

"I struggle to eat or talk. We are 44 on the McGill pain scale. Unprepared childbirth is 36, so we're more painful than lots of things.

"Air movement and noise are the biggest triggers for me. A loud, bass noise or the cinema is an instant pain for me.

"I used to go to the cinema, but I never expected to be able to physically feel noise.

"The official triggers are eating and drinking, brushing your teeth, light touching of the face, cold wind and air, shaving and hair removal, talking and facial move, vibration and noise, pressure and posture, stress and fatigue — and then my favourite, no obvious triggers."

The condition is often caused by a blood vessel wrapping itself around the nerve, but for some people, like Emma, it's as a result of damage.

Due to the pain on the left side of her face, Emma can't kiss husband Neil on the lips anymore, with the couple settling for an affectionate forehead kiss instead.

Emma added: "Thankfully he said no when I asked him to divorce me after reading all the suicide disease information online. I was very scared about what our future would look like.

"He's actually my rock, and advocates for me when I can't talk or can't attend plans because they'll trigger my high pain. Our love for one another has grown rather than diminished, but there are times when it feels more like he's my carer than my partner.

"It's a kiss in the top of the head these days. We have (kissed) sparingly, it can be a big risk to take when my face is so sensitive.

"A lot of people make an assumption that life is not worth living, it's very much worth living and it doesn't stop."