Comedian Kyle Ayers on condition that forces him into evasive action – even when it comes to walking in wind

If you see Kyle Ayers walking backward around Edinburgh on a windy day during the Fringe, he’s doing it for a good reason. Not for laughs, although that might depend on what or who he bumps into, but to avoid triggering his excruciating nerve pain.

“I have walked backward in the wind to avoid it,” said the comedian over Zoom from his home in LA, two weeks before his Edinburgh Fringe debut. “It sounds impossible that the wind could be so bad but often the slightest pressure will trigger it, like if someone hit me in the face. Even wearing my glasses can affect it.”

Kyle is talking about trigeminal neuralgia, a long-term pain condition that causes sudden attacks of sharp, shooting pain in the face, mouth and jaw, that can feel like an electrical shock.

It occurs when the trigeminal nerve, which sits inside the skull and transmits sensations of pain and touch from your face, teeth and mouth to your brain, is compressed, often by a nearby blood vessel pressing on it.

“Your brain doesn’t realise it’s just a little artery bumping into a nerve. Instead, it goes on red alert and thinks you’re being stabbed,” explained Kyle, 36.

In his latest comedy show, Hard to Say, Kyle is finally talking about his experiences with the condition he has endured for seven years. He says the show is about living in excruciating, mind-altering pain every day, and making fun of it… because what else can he do?

Kyle describes his severe bouts of pain like “a downed power line flailing around the inside of the right side of my head.” He added: “Anytime it frequently bumps into something, it electrocutes me. When the pain really gets bad, that power line is really flailing, and causes this electrical, stabbing pain.”

Kyle, who is performing at Just the Tonic Up The Road until August 25, says the pain is often debilitating. “Sometimes I can’t function, I can’t even open my eyes. I’ll just lay on the floor, pushing my face against the cold kitchen tiles to try to feel something that’s not this indescribable well of pain and nothingness inside my head.”

Known in the States for his informal, observational style of comedy, working something so personal into his stand-up is new territory for Kyle, who has performed stand-up for 14 years across New York City and LA, including a slot on popular American chat show Late Night with Conan O’Brien.

“The show derived from me hanging out with comedian friends and telling dark jokes, with me making fun of this thing in the worst way and them saying, ‘it’s actually funny the way you tell it’,” said Kyle, “I did worry it would sound too much like a TED Talk but it’s actually funnier than anything I’ve done.”

Poking fun at his condition has helped Kyle explain his invisible condition to others. “I don’t feel I have to hide it as much now,” he added. “I used to wince all the time and just tell people, including my audiences, that my head was sore. Now, I still wince through a set, but I explain what’s going on, which makes it a bit easier. Being more vocal about my condition has made people around me more aware of it. It feels less taboo. There’s something in me making fun of it that makes it easier for people to deal with. It’s been cathartic for me too.”

Trigeminal neuralgia is a rare condition that is difficult to diagnose and usually seen in patients aged over 60. It took four years of tests, consultations, plenty of self-advocating and the unnecessary removal of two teeth for Kyle to eventually secure his diagnosis.

Surgery to relieve the compressed nerve is an option but not always successful long-term. Kyle underwent surgery to insert a placer between his nerves and the offending blood vessel. It gave him relief for five months until his pain gradually returned.

As he tries to manage his condition with more effective pain medication, Kyle is glad to have been able to mine some positives from his painful condition; not just a successful stand-up show, but also an opportunity to raise awareness of invisible pain conditions.

“Since doing this show, my audience has had an interesting shift, from mostly comedy nerds and movie nerds (I host a podcast about movies) to movie nerds but also 65-year-olds in pain,” he added. “I’ll sometimes look at people wondering if they are having a good time then I realise I recognise that face – that ‘please don’t acknowledge this face’ face – and know exactly how they feel.”

Coping with any chronic pain is gruelling but Kyle has found that distracting himself from the pain helps him cope, whether that’s through painting Dungeons and Dragons figurines and playing the game with his partner and friends or performing stand-up.

“I try to push on through by keeping busy,” he said. “When I’m performing, I try to be present on stage, and not like a robot going through the motions. I never got on with meditation – my thoughts are too dark to be alone with! – but performing is one of the rare times I can be completely present and get outside of the pain in my head for a little bit.”

It takes a lot of work for me just to ‘look okay’

Since he started making jokes about living with trigeminal neuralgia, Kyle Ayers has realised the condition is more common than he thought.

“I’ve met so many more people with this condition than I would’ve thought,” he said. “It’s been wonderful to meet people who have dealt with what I have but are also some steps ahead. You meet people who have lived with this pain for 20 years and realise they have found a way to live with some normalcy so there is hope.”

Kyle added: “I think they get a lot out of hearing someone make fun of something they have struggled with, and struggled to explain to people. But it’s a show I think anyone will find funny and relatable because everyone has gone through something so odd and unique that they’ve had a hard time explaining it to others.”

Having lived with an invisible illness for seven years, Kyle is also keen to highlight that you can never judge someone’s experiences based on how they appear in public. “People can look at you and think, well you look ok, but they don’t realise it’s taking a lot of work for me to look okay. It’s a testament to how long I’ve had this pain that I look okay while it’s happening now. It’s impossible to tell the varying levels of what people are carrying at first look.”

Kyle Ayers’ debut stand up show, Hard To Say, is at Just The Tonic Just Up The Road until August 25 at 7.45pm. For tickets go to www.edfringe.com