I have trigeminal neuralgia and my brain thinks I’m in pain all the time. It’s really difficult to explain to anyone who doesn’t live with neuropathic (nerve) pain.

Pain is an unpleasant feeling or sensation that is linked to some form of physical damage to your body, such as a sharp shock when you burn your skin, or a dull ache when you’ve really used a muscle. Usually, pain has a purpose. When you know you’ve touched something hot, you pull your hand away, to prevent further damage. If you’re ever in hospital and a doctor asks if you can feel them prodding at something, it’s generally a good sign if you say yes!

Without getting into any science, nerves under your skin detect tissue damage and send a signal through your spine to your brain to let you know when something should hurt. Your brain then reacts to these messages to let you know you’re in pain. It happens very fast, you have reflexes to help move your body before these signals even reach your brain. You’ll also notice these nerves can sometimes be temporarily blocked, like when the dentist numbs your mouth before a filling.

Trigeminal neuralgia occurs when the trigeminal nerve (in your brain, behind your ear) is disrupted, usually by a blood vessel coming into contact with your nerve and putting pressure on it. This can happen for many different reasons – from trauma, to another health condition (multiple sclerosis damages the outer protective layer of your nerves) and this is what causes the neuropathic pain.

When this nerve isn’t working properly, the pain signals sent back and forth don’t match up with what is happening to your body. My face hurts all the time, but nothing physical is causing the pain on my face. I sometimes feel like a screwdriver is being embedded into my temple, but really, I might have just grazed my hand down my cheek, or brushed my teeth.

When I was first diagnosed, I’d somehow convinced myself that my pain wasn’t real pain, because there was nothing externally physically causing the pain. I was confused about my pain, when I was thinking about it that way, and I felt like an imposter. The signals are real signals – the problem just comes from internally. I struggled with coming to terms with this for a long time, so I understand if someone on the outside hears ‘nerve pain’ and thinks that it’s all in my head, because that’s what I thought in the summer of 2015.

Something hot might not be touching my cheek, or my teeth, but there is a blood vessel pressing directly on my nerve. Isn’t that the same thing?

There isn’t actually a difference between nerve pain and regular pain in terms of what I feel. Trigeminal neuralgia pain is very much real pain, not despite it being nerve pain, but as well as it being nerve pain.

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Trigeminal Neuralgia