My pain is like being electrocuted and stabbed at the same time. Making jokes is my way of coping

I have what’s known as ‘suicide disease’ because of the high number of sufferers who end their lives due to the pain. This is what it’s like

The pain is indescribable, like having root canal surgery without a general anaesthetic. Or like being electrocuted and stabbed at the same time.
I’m describing life with trigeminal neuralgia (TN): a condition where a nerve inside your skull is compressed, resulting in excruciating facial pain that comes on suddenly and can last up to two minutes. It’s also known as ‘suicide disease’  because of the high incidence of sufferers who end up taking their own life. 
You’ve probably never heard of it because so few people have it. Around 12 people in every 100,000. I certainly hadn’t, until the age of 29 when I was diagnosed with it.  
Hard to Say is my comedy show detailing my year-long, ongoing battle with TN. With pain flare-ups electrocuting my head and the right side of my face on a daily basis, I figured my best chance of not giving up was to take a step back, and laugh, no matter how much that hurt. After dozens of injections, pills, radiation, and even brain surgery all failed to work, why not try jokes? 
It was 2017 when the pain started. It felt like a toothache or a headache. As a comedian, I have strange schedules, moving around performing stand-ups, television shows and podcasts and working irregular hours so I hadn’t kept up to date with my dental appointments. I’d also just relocated from New York to Los Angeles, where I’m based now so I put it down to my lifestyle and the stress of the move.
I’d always been in good health until then, except for a bout of migraines a few years earlier. 
When the pain got worse, I went for a check-up with my doctor.  When they couldn’t see anything, I was referred to a specialist. He couldn’t see a problem either, but said he could try removing two of my right teeth at the back, where the pain seemed to be localised. I agreed to the extractions. I was so desperate for the pain to stop. But they didn’t help. In fact, the agony intensified. 
It’s then that the pain started taking over my life. Draft from air con hurt, shaving was really bad, I winced having my hair cut. I warned people at work that I had this “crazy headache”. There were times when we had to stop filming my shows so I could put my head down. I stopped socialising and dating as I just needed to lie down, often on a cold, hard floor with my cheeks on the tiles. I downplayed how bad it felt because I didn’t want to look like a loser. I hid away as much as possible.  
Along with painkillers I’d brush the inside of my mouth with oral gel to try and numb everything but nothing helped. I tried one prescription drug that I was so allergic to I ended up on the kitchen floor having a seizure. When I came around, I’d been foaming at the mouth. 
There was little I didn’t try to get rid of the pain. Injections in my jaw, acupuncture, and I saw a chiropractitioner as well as several other alternative doctors and specialists. Every new thing I tried was expensive and time consuming. I wondered if I was going mad. 
I googled everything and came across TN which sounded like I had all the symptoms of unpredictable bouts of searing pain in my face, implying the trigeminal nerves were damaged. But mainly it seemed to affect older people, and I was just 29. It’s also more common in women.
In 2021 when the pain was just so bad I took myself back into an urgent care clinic and just announced that I was in agony and had TN. Sure enough, when I was eventually sent for a brain scan it confirmed TN and I finally had a diagnosis.
The main cause of TN is damage along the trigeminal nerve, caused by an injury to the face or deep in the brain at the trigeminal nucleus. But I’d suffered no such injury. Other conditions that can damage the trigeminal nerve include MS (multiple sclerosis), scleroderma (an autoimmune disease), Lupus or shingles. But none of these reasons seemed to have been my problem. It remains a mystery to be honest.
Once I knew what it was I started opening up about it and while it’s very rare, other people contacted me saying that they had it, too. There’s an informal sort of support group where random people living in far flung places in the world can commiserate about our symptoms. It’s a lonely place otherwise.
It helps having others who understand the pain which is worse (apparently) than childbirth, or losing a limb. It’s hard to describe how acute it feels but I’ve had dark times when I’ve felt like anything – even death – is preferable to the sheer agony. At its worst, it can make me vomit blood and burst the blood vessels in my eyes.
I have depressed days when I think about ending it all. Having this has affected my own long-term vision of my life. I’ve lost two people I know from this who took their own life after surgeries didn’t work out or it became too overwhelming. 
Because I’d exhausted so many treatments it was decided that I went straight for the “end game” – the brain surgery option in May 2021. 
I was in theatre for over eight hours while microvascular decompression surgery was carried out. In layman’s terms, this meant carving a hole into my brain and putting “spacers” between my nerves to stop them flailing around and causing the pain. During surgery I was legally dead for several minutes and the recovery took weeks, and left me dizzy and sick and walking with a Zimmer frame initially, but after that the pain had gone and I felt cured. 
Being “normal” again felt life-changing. But it didn’t last. After five months the pain returned and two different neurologists have now told me that the scans show nothing inside my brain that looks different. 
There isn’t much more that can be done. 
Washing my face is bad. Eating anything too chewy or crunchy. Brushing my teeth is really, really bad. Flossing the back area of my teeth is like I’m stabbing myself in the face. Sometimes it lasts for seconds, otherwise it can be so intense I can lose my hearing or the vision in my right eye temporarily. At night I have to sleep without the pillow in my face. The pain strikes at least once a week, more if I’m stressed. 
None of this is a laughing matter, and yet in my new show I’m using my own experience of having a degenerative nerve disorder, with TN as material. 
I suppose it’s like my way of owning it, if I can’t beat this thing then at least I’m going to tell jokes about it. 
As told to Susanna Galton
Kyle Ayers: Hard To Say is at Just The Tonic: Just Up The Road at the Edinburgh Festival from August 1-25