I once wrote a letter to my pain. It was a break-up letter. My pain didn’t take a bit of notice but it felt good writing it. I’m going to write another one, this time to my not-very-dear friend, trigeminal neuralgia. Trigeminal neuralgia is cruel, evil and vicious and I just wish it would get out of my face.
If you have trigeminal neuralgia or any other type of facial pain (or any other type of pain for that matter), you might find it therapeutic to write a letter to your not-very-dear friend too.
Dear Trigeminal Neuralgia – You Are So Cruel
Where do I start? I don’t really like to be rude so I will phrase this politely – please get out of my face. You really get on my nerves and I would like you to give me some peace.
Trigeminal Neuralgia, you are cruel. Every minute of every day, you are in my face. No matter how hard I try, I can’t escape from you. You’re there burning, gnawing, stabbing and aching all the time.
You’ve been around for so long that I can’t even remember exactly when you first came into my life. I do remember telling a dentist when I was about 24 that I had constant pain in some of my teeth. He checked my teeth and said there was nothing wrong. The next time I saw him, I told him that the pain was still there. So he checked again and told me there was still nothing wrong. I said but there must be. He said, “No, there’s nothing wrong with your teeth. Some people just get pain like that so you’ll need to learn to put up with it.”
I imagine you laughed at his response. You probably thought he was stupid. You probably thought I was stupid for listening to him. But the thing is, I had been ‘putting up’ with other pain for years, so this seemed no different.
How Do You Think I Felt?
I was young and had been living with chronic back pain and migraines since I was a teenager. And now I was dealing with constant severe toothache. People think that toothache is one of the worst things you can have. I had it 24/7. But as if the pain that you forced on me wasn’t enough, you decided to go up a few gears and you took a wander into other areas of my face.
It was often difficult to explain what you felt like, Trigeminal Neuralgia. Nobody could see the pain I was in. You were completely invisible.
My cheekbone felt bruised. You probably sniggered every time I looked in the mirror as I was sure that I would see a bruise. But there wasn’t one. I felt as though you were repeatedly stabbing my eye with a knitting needle. The whole right-hand side of my face, temple and forehead hurt all the time. I could have sworn that I’d been kicked by a horse. My face burned so much at times that I felt as though I was sitting next to an active volcano. That severe toothache turned into an unending nightmare. The toothache felt as though an evil dentist was pulling and twisting at my teeth. At the same time, he wedged a knife between them to slice through my gum into my cheek.

I Discovered That Some Things Made You Worse
The pain you inflicted on me was there all the time but sometimes certain things made you even more vicious. A cold wind sent you into a violent rage. If I drank a hot cup of tea, you sent sizzling electricity along my teeth. Cleaning my teeth became a frightening nightmare. Washing my face was the same. And if I was stressed, you especially like to attack me.
I was in agony. You, Trigeminal Neuralgia, my cruel, not-so-dear friend, were torturing me. I walked around holding my face as if my hand could protect me. But it couldn’t.
Nobody Helped
Over the years, I complained to so many doctors and dentists about you. They did nothing. Some doctors said the pain might be related to my migraines. Other doctors told me to see the dentist. Dentists told me to see my doctor. Nobody helped. More often than not, they shrugged their shoulders and told me to take painkillers. I took painkillers but they didn’t remove you from my life. They didn’t even remove you for ten minutes. There was no respite from you.
Eventually, a Dentist Recognised My Pain
Until I was in my forties, I didn’t know you had a name. You were just known as ‘that pain in my face’. But a trip to a new dentist changed that. I walked in clutching my face and told her about my pain. I wanted her to remove those painful teeth. She examined them thoroughly and said there was nothing wrong with them. But she didn’t tell me to put up with you. Nor did she suggest taking painkillers. She told me that my pain was most likely coming from a nerve in my face and suggested that I tell my doctor that.
A few days after that, a doctor gave me a name for you – Trigeminal Neuralgia.
Not only did you get a name, but doctors were also able to prescribe me the correct medication. Okay, the medication wasn’t a magic cure as it didn’t make you disappear. However, it did seem to curtail your activity ever so slightly. The meds managed to dull you down a little bit but, unfortunately, while they did that, they also dulled my brain. It was like a bargaining game – less pain, less brain. But, I couldn’t cope with you in full power, so I had to accept the brain fog.
Trigeminal Neuralgia – You Are Not a Nice Companion – You Are Cruel
Since I learned your name, I joined support groups and met other people who were also tormented with you. Along with a couple of new friends I started a support group called End TN and an awareness page called, End Trigeminal Neuralgia.
I hate to think that so many other people have you in their lives. Nobody deserves that. Nobody wants you in their lives.
My pain is bad enough, but you inflict even worse pain on some people. You shock them out of the blue like a bolt of lightning. Are you on a power trip? Do you like to see people drop to their knees in pain?

Trigeminal Neuralgia – you most definitely are not a dear friend – you’re cruel. Evil. Vicious. You are an odious, despicable, demonic monster.
Please, Trigeminal Neuralgia, stop being so cruel and get out of our faces.
Regards,
Liz
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Information page here on my blog – Despite Pain
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This is one hell of a letter. I wish your pain took note and buggered off. If only!
“I walked around holding my face as if my hand could protect me.” – It’s funny we do that, isn’t it? I do it too when I’ve got pain, like protecting my eye from the ice pick being driven into it or holding my back to quell the nerves causing agony, or holding my tummy as though it’ll stop my insides twisting. I guess it’s protective, and sometimes that’s just about all we can do. I don’t like that helplessness. We can rest, take meds, use an ice/heat pad etc, but nothing makes it stop, nothing makes much difference at all.
I can only imagine what you’ve been through, Liz. You’ll put up with pain for so long and from such a young age. I’m so sorry for all of it. Every second of it. Your story of diagnosis is sadly not surprising, taking years to find someone after others just don’t care or fob you off. I’m glad for that dentist though.
I don’t have TN but I hate it on your behalf. Our bodies can be so cruel when something goes haywire. Sending gentle hugs your way xxxx
Thank you, Caz. I though I had already replied to you here, but I hadn’t. My body is here, but I think my brain is somewhere else these days.
I think it’s an instinctive thing that we hold our hand over whatever hurts. Yeah, if only our hands had magic powers, eh?
It’s ridiculous that so many people wait for so long before getting a diagnosis. It happens much too often. I can only hope that more awareness means that people might become more confident at advocating for themselves. When I was young, there was no internet so it was more or less a case of listening to and believing doctors. At least we all have more knowledge at our fingertips now.
You’ve had more than enough to deal with too from a young age Caz. Life is very unfair at times. Take care x
It’s hard to “like” this but actually I love it. I need to write my own letter to my own trigeminal neuralgia. It might not bugger off. Actually, we know it won’t but maybe it would give me a bit of peace. I hate trigeminal neuralgia. With a passion. I must look ridiculous clutching my face, but your letter reminds me I am not the only one. Thank you.
PS. For some reason, when I was diagnosed with TN (remarkably quickly!) it took me forever to be able to pronounce trigeminal. Perhaps it was the dulling medication that I was already on for something else, but it was like I didn’t want to dignify “it” with a name. Now I must write my own letter. At least I can spell it.
Oh, yes, please do write one. It honestly feels quite therapeutic writing it. Obviously, my published version is relatively polite. You ought to see the private one. If you write one and publish it on your blog, please let me know.
I have problems pronouncing it too!! I don’t know if you saw, but I published a video last week on my social media sites. (I’ll post a link in my next blog) Every time I said ‘trigeminal neuralgia’ it sounded like I had had a few too many drinks. It’s maybe the medication. I’ll blame that. Medication gets the blame for everything else. 😂
Thanks for commenting. Take care x