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I'm not JUST grumpy - I'm living with one of the most painful conditions in the world

Steve O’Rourke breaks down life with trigeminal neuralgia a condition that causes sudden and severe face pain that has been compared to being stabbed or struck by lightning.

Steve O'Rourke

I’VE ALWAYS THOUGHT of my condition as making me the world’s worst super hero.

Not that it gives me any special powers or anything but because it often forces me to assume a secret identity.

For the most part, I’m a mild mannered reporter with The42.ie  but there are occasions where I use that persona to hide what is really going on, quite literally, beneath the skin.

Up until relatively recently  —  one or two blips aside  — I feel like I’ve been very good at hiding it but the problem with masks is they invariably slip. Over the past week, mine did spectacularly.

The truth of the matter is that I suffer from chronic pain. I have done for over a year. Specifically I suffer from trigeminal neuralgia. If you’re wondering what the hell trigeminal neuralgia (TN) is I don’t blame you. I’ve had it this long and I still have to google the spelling of it to make sure I get it right.

I’ve previously written about how I developed TN (and got to grow a beard so it’s not all bad I guess) but this is more about me explaining why I might not always be the nicest person to be around.

What the hell is TN?

Here comes the science bit.

The trigeminal nerve is the fifth cranial nerve and its primary function is to send pain messages to your brain. It usually works perfectly normally and you’re never even aware of its existence.

Neurosurgeons aren’t exactly in agreement as to why it sometimes stops working the way it should but more and more research is pointing towards it being damage to the protective coating around the nerve. For me, it was a bout of shingles on the face that did the business.

The trigeminal nerve has three branches on either side of your face — one that runs through your temple, above your eye and around your forehead, one that runs through your cheek, upper jaw, gums and teeth and one that runs through your lower jaw, teeth and gums. Actually, here’s a handy map:

Source: Ann Eastman/Trigeminal Neuralgia Association UK

Now most sufferers have pain in one branch, usually the middle or lower. My attacks come in the top two but, often, the signals are so muddled the pain feels like it’s impacting my whole face.

And I don’t mean to boast here but, according to the Trigeminal Neuralgia Association UK, TN is regarded as “the most painful condition that is known in the medical world” and while I don’t know if that’s actually true or not, I can tell you it’s very, very sore.

Imagine the most painful thing that’s ever happened to you, now multiply it by about 10, and then live with the risk of it happening Every. Single. Day.

When it hits, it’s like somebody has stabbed me in the face. Sometimes that lasts for seconds, sometimes it’s minutes but the after effects can last for hours and often days.

Following an attack I don’t want to eat, drink, talk and, to be perfectly frank, just having to endure it becomes an absolute chore.

Perhaps for that reason, TN is sometimes known as the ‘suicide disease’ with the Daily Mail — I know — saying that 27% of suffers take their own life while the BBC have also used the term when reporting on the condition.

The fact is, from even just the most basic research, it’s impossible to find reliable statistics to suggest it’s a disease that causes more people to take their lives than any other so, from my point of view at least, it would be great if people stopped using the term.

HOWEVER…

That’s not to say it can’t make you feel pretty dismayed with your lot in life.

I can also tell you that while chronic pain is not easy to live with, living with someone who suffers from it must be even worse.

When the pain hits, and after, I am absolutely at my worst mentally as much as physically and though I think I’m usually good at hiding it, over the past while it has gotten on top of me.

A lot of that is my own fault, I let my medication run out and tried to deal with the pain au natural. Like a thick.

I suppose I hoped that, if I did my best to ignore it, then it would just go away.

Source: The IT Crowd

However, I recently had two really bad attacks in a very short period of time and became impossible to live with to the extent that I thought, for the first time, that maybe it’d be easier for everyone I care about not to have to put up with the moaning, the mood swings, the snapping at my son for absolutely nothing, the finding fault in everything my wife says, the all-en-composing sense of ‘meh’ about anything because all you can think about is the pain you’re in.

Again, I don’t mean this in a suicidal way. Not even close. I mean it in a “it’d be great to run away and not be such a pain   in the hole to everyone” way.

But, really, that’s not very likely to help.

After meeting with my doctor, I’m not only back on medication to help manage the pain but he has also changed it to something that maybe won’t feel as much like someone has turned an electric blanket on to warm my brain.

There are other things that can be done, other avenues that will be explored but, despite living with TN for some time, it’s really only now that I’m getting my head around the fact that this could be with me for the rest of my life.

That’s not a particularly pleasant thought. Nor is the idea of waking up every single day wondering not if, but when the next attack is going to be.

But, without wanting to sound PEAK DAD here, you do just have to get on with it all the same.

I mean, eating can hurt but it hasn’t stopped me. Talking can hurt and sometimes — quite a lot of the time actually — people have to tell me to shut up. Laughing can be a repeat trigger but I wouldn’t swap the pain for not knowing any of my brilliant family, friends and colleagues who make me chuckle on a regular basis.

Getting an accidental headbutt from my toddler is definitely the worst though. I wish he’d stop doing that.

1,000 or so words in and I still don’t really know why I’m writing this, other than the fact that talking about TN openly for the first time with people over the past few days has really cast my situation in a new light.

I’ve gone from possibly the lowest I’ve ever felt mentally to having some hope that, if I actually explain to people what’s going on, then they can have more of an understanding of how my behaviour or even just to help people spot the signs I’ve had an attack.

Of course, this is not a Get of Jail Free card to excuse any and all terrible behaviour. But if I’m being grumpy, or difficult, or quiet, or distant, then tell me. But just realise that, most of the time it’s probably not you.

It’s almost certainly me and the world’s worst super power.

Steve O’Rourke is a sports journalist with The42.ie.

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