I have atypical (type 2) trigeminal neuralgia, on the left side of my face and I’m currently experiencing a flare up of pain.
I used to find it really difficult to put into words how I’m feeling when I’m in a flare up. I used to be absolutely terrible at it, when I was first in pain. Everything felt like a ‘level 10′, the pain was ‘everywhere‘ and I couldn’t point out even where it stopped and started on my face, because I was so overwhelmed with just being in pain. I remember curling up after work with my partner and not being able to even explain how I was feeling, just saying that I was in pain and needed to sleep. I couldn’t explain how I felt at all and I didn’t try.
I had a rubbish neurology consultation last year, where the neurologist pointed out there were inconsistencies between how I used to describe my pain and how I describe it now.
I’ve definitely got better at describing my pain and I can differentiate when I’m having a ‘level 5’ pain day or a ‘level 8’ attack. Having lived with TN for over six and a half years, having seen different doctors who have told me the medical terms for the things I’m feeling and having had counselling, I know how to better identify my pain and put it into words.
The fact my neurologist couldn’t quite get his head around the fact I have lived with this illness for years and was comparing how I can describe my pain now to notes from my first ever flare up of pain, when this was new and terrifying and I thought my world had ended was, well, disappointing, to put it nicely.
Explaining TN to someone who doesn’t live with it is near impossible, even a doctor, a pain specialist, or a neurologist. You can tell someone, ‘this is the worst pain you could ever imagine’ and the worst pain that person has been through is really bad toothache. You could say it to someone else and the most pain they’ve ever been in is a sprained arm. Both these people can’t understand the type of pain you’re trying to convey.
There are very few people who will be able to understand how much my face hurts.
Right after the TNA UK Conference 2021, I got into bed with my partner and I cried.
For the first time in my life, I had been in a room full of people who actually knew how I was feeling and I didn’t have to explain anything. Everyone in that room had been with me at my very lowest point in their own experiences and we didn’t even know each other.
We had a patient panel made up of one of our members and two of our volunteers. Their stories would have brought anyone to tears, if you have TN, or not, but to anyone living with TN, their experiences resonate with you in a way I can’t put into words. I felt their every struggle. I sat at the table in the conference and cried listening, because I could really feel their pain too and everyone at the conference were the only people I’ve ever met face to face, who actually understand how I feel.
After the conference, I lay next to my partner in bed and said, through lots of tears, that this was the first time I felt like someone just got it.
I have a wonderful support network of family, friends and colleagues and I am so lucky to have their support, but just because I can use the right words now to describe my pain doesn’t actually mean they can understand.
If you have TN, I know you will understand when I say that living with this pain feels like your body is trying to die sometimes. You fantasise about taking some pliers to your teeth, in the hope of getting some relief, even though you know you don’t have a dental problem and it won’t take the pain away. You can feel the pain moving around your face and mouth, coming in waves, stopping and starting, every time with you praying for this to be the last wave of pain. You take painkillers that don’t work. The roof of your mouth hurts if you sip a drink, so you try to go without eating, or drinking, until you feel weak. Because you haven’t eaten, your painkillers make you feel even worse.. Painkillers that don’t really do much for the pain anyway. You can’t speak, or smile. You feel dirty, because you haven’t brushed your teeth today. You’re irritable and just one little thing could make you want to cry, but, actually, you can’t cry, because that would hurt your face even more.
How can I expect someone who doesn’t have trigeminal neuralgia themselves to understand that?
I’m going through a flare this weekend and I’m in so much pain. If you live with TN, I know you’ll understand how I feel without me having to say any more than that.
The Pain Corner 
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