I have atypical, or idiopathic, trigeminal neuralgia. This means that I experience the ‘typical’ shocks, but also a lower level of constant pain. Using the phrase lower level always bothers me, because I am still in pain, but it’s a lot less severe than the type 1 shocks that you experience with typical trigeminal neuralgia.

One of the usual pains I get every day is a ‘crawling’ sensation across my left cheek, under my eye and through my nose. I would describe this as what I imagine ants crawling under my skin would feel like. It feels itchy, uncomfortable, strange and painful. I’m not used to this pain, despite having it for years. You will often see me twitch, scrunch my nose, or even sneeze due to this sensation.

A doctor at my local pain clinic told me that this sensation has a name – formication.

Formication is the sensation of feeling insects crawling underneath your skin and is known as a ‘tactile hallucination’, which means your brain is sending signals for a sensation that shouldn’t be happening, just like ‘typical’ TN pain. You can get formication for lots of different reasons, including medical conditions, neurological conditions, medication side effects, drug withdrawal and mental health conditions.

If you have type 2, or idopathic/atypical TN, experiencing formication can be normal, but this doesn’t stop it being painful, or irritating and, sometimes, all consuming.

My face always feels like I have something crawling on it and I don’t often get a break from it. At first, it was actually a relief from having the sharp shocks that come with trigeminal neuralgia, but it quickly became upsetting for me to learn that this may never go away.

I felt a bit crazy, if I’m honest, talking about how it felt, when I was first diagnosed, but knowing it has an official, medical name makes me feel so much more confident in describing it.

Before I end this blog post, let’s address the elephant in the room. If someone says ‘formication’, you probably hear ‘fornication‘ in the first instance. I guess it’s just one of those unfortunate things, but at least you’ll remember it!

For more information on formication, you can read about it over on Healthline.

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