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The Hidden Pain of Trigeminal Neuralgia

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Oh trigeminal neuralgia, how I despise you…. let me count the ways.

*I have an architect inside my head that, upon request, can plumb a line to split my head in half. One side is unaffected by the invisible plumb line, while the other can react in a multitude of ways.

*The prickling of pins and needles like radio static of a channel untuned.

*The warm radiating heat from a spiderweb of nerves on high alert when no danger is present.

*The pulsing, like the beat of a drum, in my head in time with its tune.

*Shooting, stabbing pains from the base of the skull near my spine, right up and over to my eyebrows.

*The droopy eye and mouth, and general weakness, of that side of my head.

*The high pitch sound of a steam whistle in my ear, as the steam train of pain rages on.

Neuralgia first came into my world in my early 20s. After a stressful but successful day at work, my team and I wanted to celebrate. We decided on a night out, a meal and a day at the horse racing. I arrived at the venue of the evening’s activities two hours later than planned because of Friday night traffic, but I checked into my room, took a quick shower and changed so I could join my colleagues for a few drinks before dinner.

I sat down and relaxed for the first time that day. As the first glass of wine relaxed my body’s tension, it felt as though my head got hit with an axe down the centre. The pain was sudden and was gone as soon as it was there. Then came the radio static. I felt as though the whole of one side of my face had pins and needles and that my hair was moving even though it was still. I refused to stop celebrating because of this and soldiered onwards. I was so grateful when the end of the meal came, and I made my excuses to go to my room.

As I lay there in the dark, the static changed to burning. The whole side of my head was so hot. It felt like it was on fire. The whistle of the steam train in my ear would not stop. I placed a cold flannel on my face to try and cool it. I was also feeling nauseous but dislike being sick, so I took some pain relief and finally drifted off to sleep.

By morning, the whole episode was over. The fire beneath my skin was out. My hair was no longer moving, and the train whistle in my ear had stopped. I was so relieved, albeit a little worried, but determined to enjoy the day at the horse races. Enjoy the day I did, as beginner’s luck ensured that I came away having more money than when I went.

Once back at work the following week, I mentioned to a few people about the episode, describing my symptoms. A few looked at me blankly and told me to visit my doctor. One person replied that I had neuralgia. They told me they had it from time to time and not to worry. I still went to see my doctor, but they also confirmed my attack to be trigeminal neuralgia and prescribed me a medication to take at the onset of an episode to take it away.

Nothing prevents or completely takes away an attack. I must ride out the storm. I know that, once the wave of neuralgia has reached its crescendo, I can close my eyes, and the sea will be calm again when I wake up. From time to time, I still get neuralgia, although I don’t recall the events as I did on that first attack.

Everyone with neuralgia will have a slight variation of symptoms, different parts may be affected, but we all suffer the pain. To the outsider, we appear normal. Inside, a silent storm is raging, with very few external symptoms visible to others. It’s not just a headache, but neurological pain. When it attacks, there is little anyone can do to help apart from providing a cold compress and compassion.

Kindness costs nothing, but it can mean the world to someone and help them see that they are not alone in their fight.

Image of “the face of neuralgia” via contributor

Originally published: February 4, 2022
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