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On a day the TN wasn't that bad. TheJournal.ie

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.

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:

Ann Eastman / Trigeminal Neuralgia Association UK Ann Eastman / Trigeminal Neuralgia Association UK / 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.

The IT Crowd 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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61 Comments
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    Mute Save Rainforest
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    Nov 14th 2023, 8:44 PM

    Extremely inefficient process, in many many countries buying a property takes 4-6 weeks not 4 to 6 months if you are lucky or a year if you’re not so lucky. Properties should not be put on sale without all documents, planning permits, ber certs and so on being ready. Also cutting off the solicitors would be great too, estate agents should be qualified to do the probate and conveyancing , at the moment they do sweet f. all

    315
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    Mute Mick Duvanny
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    Nov 14th 2023, 9:28 PM

    @Save Rainforest: Think of all the empty properties while the sale is waiting to close

    29
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    Mute
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    Nov 14th 2023, 10:31 PM

    @Save Rainforest: You can barely trust an Estate Agent to be genuine and not falsify bids etc. I’d much rather pay a solicitor I would trust and have them in my corner rather than an EA who just wants to close to get their commission.

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    Mute Paul Gorry
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    Nov 15th 2023, 1:24 AM

    @Save Rainforest: estate agents? The biggest gangsters ever are you hearing yourself as you type?

    53
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    Mute lastfewchocices
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    Nov 14th 2023, 10:15 PM

    I’ve recently sold a house. I applied for an nppr cert in early August. Got a reply yesterday. Property tax bands increase due to the sale price increased and were back dated. Solicitors fees include couriers for items I collected. An engineer charged 2000 euros to look into a shore and a tank and sign a document. Estate agent is uncontactable. And that’s just the sale.
    I’m also trying to buy. And that’s where I’ve lost the will to live.
    The real estate business is rotten to its very core. My heart breaks for those trying to get on the ladder They haven’t a hope.
    Nothing is transparent. Nobody is accountable. And the seller and buyer are being rode hard.
    It’s a disgraceful system. I’m furious.

    311
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    Mute P.J. Nolan
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    Nov 15th 2023, 9:12 AM

    @Peter Murray:
    The trolling is getting pretty sad around here.

    11
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    Mute Michael o connor
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    Nov 14th 2023, 8:43 PM

    When will The Journal be telling us the details of one of the anchors of RTEs Six One news High Court case against a national newspaper?

    Is this not having a chilling effect?

    Oh sorry, is that just when sinn fein are involved?

    170
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    Mute Damien Leahy
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    Nov 15th 2023, 5:51 AM

    @Michael o connor: maria bailey as well

    42
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    Mute Denis Rathsallagh Brady
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    Nov 14th 2023, 8:36 PM

    Hire staff for councils and get back to building estates.
    Half a billion not spent by that eejit last year.
    Ive a pain in me aras with the lot of them

    168
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    Mute uUleRhCu
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    Nov 15th 2023, 6:48 AM

    @Denis Rathsallagh Brady: Look at the state of ‘council estates’ in this country?…Not a great poster boy for repeating it.If they are to build more,well then the old model needs to be ripped up.Start by deducting rent at source and maybe inspecting houses and deducting the cost of damage at source as well.

    49
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    Mute Denis Rathsallagh Brady
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    Nov 15th 2023, 7:48 AM

    @uUleRhCu: You’re talking about the bad areas. There are more decent good estates than bad. The one in the middle of my name being a fine example of how a good council estate is run.
    And besides, we need housing now

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    Mute uUleRhCu
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    Nov 15th 2023, 11:16 AM

    @Denis Rathsallagh Brady: more good estate than bad….nonsense.

    6
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    Mute Denis Rathsallagh Brady
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    Nov 15th 2023, 4:52 PM

    @uUleRhCu: Theres a whole generation out there with no chance of getting their own house.
    So what do we do, build tower blocks? Not a chance.
    Build single houses? Not a chance.
    In Wicklow alone there are 125 boarded up council houses. If they had more workers these could be given out.
    No workers = No houses

    5
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    Mute Johnny 5
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    Nov 14th 2023, 9:21 PM

    Another expert group. Where would we be without them

    113
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    Mute SaraB
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    Nov 14th 2023, 8:41 PM

    Remove the bid process altogether. In England you make an offer and if it’s accepted it’s off the market same day. Easy to buy a property. The Scottish system is also just as bad as IE with sealed bids and I know people who have also struggled to buy. Only difference is you don’t know if you are close but it does prevent agents constantly pushing up prices. But please just remove the weeks of open house and bidding systems!

    101
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    Mute Jules Verne
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    Nov 14th 2023, 9:31 PM

    Roughly 40% of the price of a house is direct and indirect taxation. Vat, various arbitrary contributions to the County Council, etc. not including the costs of applying for planning permission. However, there is limited transparency,, so the circus will continue.

    93
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    Mute Louis Jacob
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    Nov 14th 2023, 8:28 PM

    Make legislation and simplify regulations specifically for prefabs and log cabins. Surely with all the vendors now selling these products in ireland, a code of standards can be established. It would take so much pressure off

    85
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    Mute P.J. Nolan
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    Nov 15th 2023, 9:20 AM

    @Louis Jacob:
    Well said.
    For anyone with access to a site, probably mammy’s back garden it should an option for good quality log cabins.
    In reality it’s already happening, try buying a second hand mobile home at the moment.
    We had one in wexford as a holiday home when the kids were smaller. Sold it last year after 10 years for more than I paid for it.
    Young couple who didn’t want to pay rent while saving for a deposit.

    15
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    Mute Gar Fitz
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    Nov 14th 2023, 8:30 PM

    I love the way they’ve spun the word home in to thinking there doing well and meeting targets , 30000 homes is what , how many apartments how many houses , not enough thats wha

    81
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    Mute P.J. Nolan
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    Nov 15th 2023, 9:23 AM

    @Gar Fitz:
    And the next government, regardless of who they are, will do the same.
    Neither FG, FF or SF or anyone else will magic up more builders.

    12
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    Mute Pete Lee
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    Nov 14th 2023, 8:39 PM

    There is a major need for legal reform of
    Cost and time frame….
    Just look at any tribunal

    64
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    Mute
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    Nov 14th 2023, 10:50 PM

    After weeks of bidding and eventually out bidding the other potential buyers, the property owner decided he would like some more money. The plonker just wasted everyone’s time with his greed. The guide price was exceeded by more than 20k but maybe the agent deliberately put it lower to increase the interest in the property. The whole process is ridiculous. There’s very little transparency when it comes to the bidding and it just feels like the agents are out to squeeze what they can out of you.

    88
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    Mute Damian Moylan
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    Nov 14th 2023, 9:41 PM

    what’s the point in journal.ie w/o a comments section? i have seen numbers drop.

    52
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    Mute Alan Kennedy
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    Nov 14th 2023, 10:57 PM

    @Damian Moylan: Is this not a comment?

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    Mute Eoin murtagh
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    Nov 14th 2023, 9:44 PM

    Why has this taken so long to start to tackle

    52
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    Mute BRENDAN O'CONNELL
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    Nov 14th 2023, 10:34 PM

    May someone can over see the corrupt Irish real estate business,put in some proper regulations the Irish as it’s a good old boys club.

    72
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    Mute
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    Nov 15th 2023, 12:55 AM

    When waiting for the sale of my dublin flat to conclude to allow me purchase a edinburgh house i recall my scottish solicitor not comprehending how awful the irish process was. The delay in funds almost cost lost me the edinburgh house. Far too many hangers on in the irish process taking a cut along the way and not taking any responsiblity.

    54
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    Mute Alan Kennedy
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    Nov 14th 2023, 10:53 PM

    If Jimmy from Clonmel can object to a house build in Raharny, then there’s something wrong! However, if you want to change that, then you need approval from Jimmy!

    32
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    Mute P.J. Nolan
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    Nov 15th 2023, 9:27 AM

    @Alan Kennedy:
    The problem isn’t Jimmy from clonmel, every country has those, it’s the fact he hold it up for so long, possibly years.
    And that is down to the legal system.

    6
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    Mute Cars
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    Nov 15th 2023, 8:17 AM

    Start with Estate Agents. They are no doubt part of the issue.

    22
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    Mute Philip Thompson
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    Nov 15th 2023, 4:51 AM

    Estate agents want the system changed too. This legislation was proposed and promoted by IPAV. As an estate agent I spend far more time trying to resolve problems in conveyancing than in selling houses. The stress for all who care is very high.

    9
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    Mute Mark Breathnach
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    Nov 15th 2023, 6:03 AM

    @Philip Thompson: no one he cares
    Up bidding is rife in the properties & estate agents are part of the issue

    20
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    Mute Nickb
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    Nov 15th 2023, 1:34 PM

    We currently have a situation in Wexford where one couple from the north of the county are the sole objectors to ABP over major development plans ( permission granted by Wexford Co Co ) at a hotel in Wexford town, 50km away. At minimum this will put the plans on hold for at least 6 months!

    7
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    Mute P.J. Nolan
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    Nov 15th 2023, 3:18 PM

    @Nickb:
    Your ire should be directed towards the legal system and the government that allows that to happen.
    Every developed nation has some form of planning objection system, there will always be a contrarian, especially now with environmental issues, but they seem to be able to deal with it in a few months rather than years in this country.

    5
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