‘The Suicide Disease’ – The Personal Horrors Of Trigeminal Neuralgia

The world’s most painful disease and how it affects the regularity of Reprobate updates.

Regular observers will have noticed a certain stutter in Reprobate updates of late. As there are those who seem to take a certain glee in suggesting that we must have run out of steam or simply got bored with the whole thing, I guess an explanation is in order.

Every so often, your humble editor is struck down with an affliction so ghastly that it is hard to explain to those who haven’t experienced it – Trigeminal Neuralgia is not a fashionable ailment or disability and afflicts only around one person in every 100,000. You won’t see it being earnestly discussed on talk shows or as the subject of plaintive charity ads. And even describing it never quite gets the sheer awfulness of it across accurately. How could it? If I say that it feels like an extreme electric shock running through your face for anything up to five minutes (personally speaking – some have it much worse) then who can really relate to that? For most people, an electric shock is a split-second experience and if it is any worse than that, there’s a good chance that it has killed you.

Trigeminal Neuralgia is not going to kill you, at least not directly. It was, however, once referred to as ‘the suicide disease’ – which is always cheering – because people would off themselves rather than suffer through the pain any longer. That was, however, some time ago before medication existed to at least help control it somewhat. One USTV news report that I saw claimed that half of all sufferers still kill themselves, which seems to be a wild exaggeration, though given US healthcare and medication costs, who knows? It is generally said that Trigeminal Neuralgia is the most painful affliction in the world. So naturally, I have been putting up with it for the last eight years.

My first brush with TN (as we’ll call it for the sake of brevity) was in 2014. That might not actually be true, thinking about it, as I’d felt the odd twinge here and there for a while. But 2014 was the first time that I was woken up with a stabbing pain that then exploded into a screaming pulse of electric shocks that shot up and down the length of the right side of my face. Like an actual electric shock, it froze my entire body – I could hardly do anything except lie stiffly as the worst pain I had ever experienced gripped me for what seemed like forever but was in fact a few minutes. Then it was gone. Then, a short time later, it was back. I had no idea what the hell had just happened but then it began to happen again. Sometimes out and about, when you would be unable to tell anyone what was happening as you were suddenly gripped by incapacitating pain, sometimes at home.

Understandably, a lot of people think that TN is toothache gone wild but mine never felt quite like that – it didn’t seem to originate in my teeth. For many people, diagnosis is delayed by unnecessary dental treatment and root canal surgery as even dentists can’t (or perhaps won’t recognise it. There are horror stories of people suffering for years before finding out just what is wrong with them. For me, it was surprisingly easy. My doctor diagnosed it immediately and subsequent tests confirmed that. “I bet you thought you were having a stroke” she chuckled. Well, no actually – but thanks for that reassuring thought (not to mention the suspicion that now I’ll never be quite sure if it is a TN attack or a stroke). The good news – there is medication. The bad news – well, there’s quite a bit of that. It’s incurable, it’ll never go away and the medication will, at best, make it more tolerable. It won’t prevent attacks but might make them less severe. Or might not, depending on circumstances. It’s the same medication that epileptics take and is designed to relax the errant nerve responsible for attacks and so is pretty hardcore stuff.

TN is caused by the trigeminal nerve that runs from the brain and controls sensation and touch in the face. In TN cases, it is caused by a blood vessel pressing on the nerve and this pressure can be triggered by pretty much anything you might want or need to use your face for – talking, eating and drinking, touch, smiling, kissing, brushing your teeth and washing. Even a mild breeze can be enough to spark it up. The electrical impulses of a mobile phone can set it off and for me at least, it often seems to cause an irritating itch in the eye or nose that I will instinctively want to scratch, with predictably unpleasant results. You can trigger it by rolling over in your sleep – not simply by lying on the sensitive area but just by moving.

There are two types – one causes the aforementioned sudden shocks that often come out of nowhere (though I’ve always had a certain sense that they are coming – a weird feeling that can last for hours before the actual attack). The other, which is the one currently affecting me, is more continual. It is a constant shifting of the sensitive area, from the nostril to the lip to the eye socket to the cheek. It’s a constant sharp pain across the face but if you actually touch the affected area then it feels like someone has just stabbed you – and you’re never quite sure if that will then explode into a full attack. This constant pain, depending on just where it has settled, can make it difficult to eat and drink – I might feel fine until I actually try to put something in my mouth, at which point it becomes agonising. Washing (and drying) my face and hair become a gamble and if – like today – I also have a touch of hayfever or an otherwise running nose, you can almost guarantee that it will be settled around my nostril. How bad it is from day to day – or even hour to hour – is always a delightful surprise. Sometimes I can drink but not eat, eat but not talk, sometimes it is just a throbbing warning sign that hurts but doesn’t hinder, and sometimes I can barely function. You’ll never know which you’ll get or when it will change.

There are surgical treatments available – the least severe only offers temporary relief and the more invasive comes with all the risks associated with opening up the skull and might leave a person paralysed on the face or vocal cords, permanently numb, deaf or even cause a stroke. All in all, I suspect that things would have to be a lot worse before I would even consider that. There are ‘holistic’ treatments on offer too, but they are, of course, hogwash.

TN attacks come and go in terms of severity. Sometimes it is barely noticeable. Sometimes, like right now, it’s fairly all-consuming and on those occasions, it’s hard to really do anything – writing Reprobate content is difficult because I’m in continual pain and have all the accompanying issues – headaches, lack of focus, general depression and the like. I don’t want to over-egg the pudding but for the last couple of weeks, it has very much been a case of writing and filming as and when I can, bearing in mind that the rest of life’s requirements – buying food, housekeeping, actual paying work and so on – also have to be squeezed into those windows of opportunity.

I don’t want to be overly dramatic here. Most of the time, I can function perfectly well with this. It’s only during periods when it is especially lively that it affects me dramatically. But I’m aware that those periods last a lot longer than they used to and will become even more severe as time goes on. In any case, this is both an excuse for editorial tardiness and an explanation of the suitably obscure and exotically horrible ailment that blights my life. Isn’t the human body great?

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  1. Getting old SUCKS, but getting older with chronic pain REALLY SUCKS, doesn’t it? Sorry to hear you’re going through this, but more glad to hear you are in the 50% that can live with it — and hope you continue to do so, David!

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