I often talk about how much I can do, living with Trigeminal Neuralgia, but I don’t often blog about the things I can’t do. I realised that I probably should, because this is the kind of post I’d like to read myself – to know it’s not only me and to know I’m not alone. I also wish I’d have known some of these things when I first got diagnosed with trigeminal neuralgia, to know what was ‘normal’ for other people and to know what was special just for me. Here are just seven of the things I can’t do, with my TN!
I can’t eat icecream, but I can manage ice in a cocktail, if I really try! If I take a painkiller before I have a cocktail, I can manage having the very cold drink (just!), but there is absolutely no way I can manage ice directly in my mouth and I definitely can’t eat icecream. Having something cold in my mouth is a complete no!
I can’t brush my hair.. sometimes! I remember the first time I sat in the doctors’ (the local emergency walk in centre) and the doctor told me that I couldn’t possibly have trigeminal neuralgia, as I could brush my hair without pain. I was confused about this, I had plenty of the symptoms of trigeminal neuralgia despite this and I did eventually go on to be diagnosed. Then the hair sore hit me like a thousand bricks! I only developed a terrible pain when brushing my hair about a year and a half ago. It started very suddenly and now there are some days when I can barely wash, dry and brush my hair (thank God for the Tangle Teezer and a very patient partner on the days when I struggle with this!) However, some days I’m just fine!
I can’t always focus my eyes, due to the very strong medication I’m on! I’ve recently come off amitriptyline and my vision is finally getting better, but I wish I’d known before about the vision problems that could be caused by pain medication. There was a period when I was so worried about my eyes and now it turns out that it was down to the medication I needed to try to keep the pain at bay!
I can’t have any cold air blowing on my face – ever! I’m in pain when there’s a breeze, a small draft, the car is being defrosted on a cold morning, when a fan is near me.. everything cold blowing near my face causes a really tight, sharp pain.
I can’t stop sneezing! For some reason, my neuralgia gives me a really intense tickle – a really painful one! – in my nose, which ends up coming out as a sneeze – this one is so hard to explain! I think my body is just trying to make sense of the pain and the closest thing it can relate the feeling to is the need to sneeze. Pretty annoying!
I can’t brush my teeth. This one makes me really sad. I force myself to give my teeth the best brush possible, but sometimes they don’t feel as clean as I’d like and I can’t describe how much it hurts. I’ve recently had to have two fillings, due to ‘not looking after my teeth properly’. I don’t like how dirty it makes me feel to not be able to give my teeth a thorough brush twice a day, without fail.
I can’t take normal painkillers anymore, as I’ve built up the biggest tolerance to pain medication. I can’t take a paracetamol or an ibuprofen, because it won’t do a bloody thing, but I can take about four codeine tablets without a worry or a care!
I must point out that trigeminal neuralgia is different for everyone and no two cases are alike! I have been in remission from pain before and I’m not at my worst at the moment. Everyone’s symptoms are different and neuralgia can change over time. Please also note that these are not my only symptoms of trigeminal neuralgia and you should not self diagnose from this post. Please see your GP if you are worried about your health! ♡