Mingo.Life

It starts with a flicker. A twitch. A whisper of pain that you think might be something simple. Sinus problems, maybe? A rogue tooth? Nothing worth worrying about. You go about your normal day…

Then it hits.

The pain ramps up rapidly. My nerve endings start misfiring. An intense crushing pain, like somebody with the hands of a giant has grabbed my jaw and is attempting with all their might to crush my face. A bolt of electricity tears through my cheek like the universe is punishing me for something I’m not even sure I did. A burning sensation spreads across half my face like a wildfire. My right eye waters. My jaw locks. Eating feels dangerous. Talking feels suicidal. And still, I sit there, nodding through it to the person opposite me like a polite hostage at a dinner party.

This is Trigeminal Neuralgia.

Or, as some charming bastard once called it, the “suicide disease”. Lovely.

As I write this, I’m in a lot of pain.

The sad truth is, I’ve gotten quite good at hiding it, even though there are days I just crave a full face anaesthetic and a horizontal surface in a dark room. I’ve just started titrating over from a drug called Gabapentin, to a drug called Carbamazepine now, and that comes with it’s own world of hurt. The working theory coming from the various doctors I’ve spoken to is I have a condition, or disease perhaps, called Trigeminal Neuralgia (or Trigeminal Neuropathy). I have had x-ray’s, CT scans, blood tests, been made to do that thing where you touch your nose with your fingertip, and, unfortunately I have also had a lumbar puncture test – a giant needle directly into my spine. After multiple doctors poking and prodding me, they finally admitted defeat and passed me on to a Neurologist. I await an MRI at time of writing.

There is a small part of me that secretly hopes they’re all wrong, and that the specialist finds something slightly less soul destroying to diagnose me with. I was hit a little hard when the GP suggested that this condition is a disability, and that even though there are things that can be done, they might not work. I may have to live with this. But, I can’t.

I want my life back.

Currently, as I write this blog entry, it feels like somebody has punched me at full force to the lower right side of my face. This might explain why I’ve been a little absent from my blog lately perhaps. Heck, I would expect to see an almighty bruise in the mirror, and yet, there isn’t one. Half of my face has started locking up, just in time for dinner of course. I let my jaw hang open for a moment and feel an ungodly crunching followed by a sharp jolt right through half my face. My right cheek feels like it’s burning again. The sensation has spread right up to the area just beneath my eye. I sit as calmly as I can, in fear of an impending and debilitating migraine (and there have been plenty of those).

There have been days where I have been doubled over in tears, teeth gritted and unable to speak. This happened on holiday. Delightful. There have been days where I have gone to A&E – too many of them. There have been days where all I can do is exist and wait for the flare up to pass.

I don’t know what I did to trigger it this time, I was simply feeding the kids their dinner and on came the pain. This is now, sadly, normal for me. A life lived waiting for the next flare up.

I rely on the 10 Gabapentin tablets a day I’ve been prescribed, the maximum dose allowed here in the U.K. The side effects for me include a sedative-like effect (mornings are extremely difficult), clumsiness (Emma is getting fed up of rebuilding her Lego flower display), and the odd mood swing too (personally, I blame the Lego I stepped on).

The maximum dose of Gabapentin. 3,600mg of the drug in my system, every day.

And it’s not working.

Where did this come from? Avid Mingo.Life followers and family alike may remember about a year ago I had 4 wisdom teeth out at once. This, I believe, is where it all started. Of course, I had to have them out. I was getting back to back infections in my jaw owing to an inescapable void from an impacted (growing sideways) wisdom tooth. A bacterial oasis of painful delight. I felt, and certainly several dentists agreed, that removing these unnecessary teeth would solve the reoccurring problem. And it did! For a while. Until new problems came along… I was that unlucky 1 in 1000 they warn you about when you sign the disclaimer.

“Ah, that won’t happen to me. Crack on.”

I should have bought a lottery ticket.

Reflecting on those first few months, I guess the signs were already there that something more sinister was going on in the depths of the complicated nerve network that was my face. The loss of sensation to my tongue. The sudden onslaught of pain and complications.

Looking back at my original blog posts after my wisdom tooth surgery sent a shiver down my spine. I seemed so jovial at the time. A year later, my patience had long since expired and the pain now rules my daily life. On day 8 after my original surgery was where I first heard the words “nerve damage”. I did not truly realise the impact these words would have. On Day 13, I remember revisiting the hospital and a doctor had a good look at my face, her own complexion concerned that something deeper may be going on here.

So what is the future for me? I wish I could tell you. I am taking it day by day at the moment, whilst I wait for scans and specialist appointments. I’ve been to A&E for it, where they gave me a 24 hour nerve block consisting of 6 needles to the face. 3 in the mouth to prepare me, then again 3 deeper needles to inject longer term anaesthetic to disable my nerves completely. The blessed relief was sweet, but short lived. I burst into tears at my visiting Mother-In-Law when I awoke and the pain came back with a vengeance.

I’m now titrating between the drugs, and holding for a few weeks on 7 x 300mg pills of Gabapentin a day, with the introduction of 300mg of Carbamazepine to my system. The Gabapentin makes me clumsy, I keep dropping things, and I truly fear the brutal side effects the Carbamazepine may bring. I have short term memory loss, and apparently I keep repeating myself. I get break-through pains without warning.

I decided that writing this blog, and perhaps others to follow, would be a good way to journal my progress – even if only a handful of people read it.

I hope that in writing about my journey, somebody out there suffering with this or a very similar condition can draw strength from the fact they are not alone. I see you, and I hope you have a better day tomorrow.

Pain may be part of my life now, but so is resilience. So is love. So is the sheer bloody-mindedness to keep going, keep writing, and keep finding moments of calm between the storms. I’ll keep chasing answers, and in the meantime, I’ll keep loading the dishwasher wrong, rebuilding the Lego flowers, and showing up as best I can for my wife, my kids, my colleagues, my family and my friends… Face on fire or not.

Because screw this, it picked the wrong face.