7 Things I Can’t Do With Trigeminal Neuralgia

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 (on occasion) manage a few cubes of ice in a cocktail, if I really prepare and ONLY if I’m having ‘no’ pain day (remission)! If I take a painkiller before I have a cocktail, I can manage having a 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! ♡

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Trigeminal Neuralgia

19 Comments Leave a comment

  1. Your post hit me hard, I also have TN and there are also things I can’t do which really get me down. And all the positive ‘I can still do this with TN’ posts are great but sometimes I just need the raw emotions of someone else going through the same thing as me so as not to feel so alone.
    I hope this makes sense 🙈 I started on Pregabalin on Monday and I’ve felt a little ‘drunk’ since 😂


  2. Air movement against my face is my worst. The slightest, cool breeze sends me to my knees. I don’t go anywhere without a scarf or hood anymore.


  3. I’m very thankful that I can still do ice cream, but yep these things all suck for me too. When I’m having a flare up I tend to go pretty low maintenance with my hair and make-up. I don’t wear much make-up anyway but I like to put a touch of concealer under my eyes to make me look more refreshed and my TN doesn’t like to let me do that. I recommend a natural soft-bristled brush and you just have to be very slow and very careful. But I remember one week where I couldn’t brush or wash my hair the entire time.

    And my mouth feels so gross when I can’t brush it, especially sometimes when it’s so intense even mouth wash is a problem! I can sometimes do mints or sprays which helps. Even when I do brush now it tends to be at weirder times, basically whenever I feel up to it rather than morning and night like a normal person.

    Liked by 1 person

  4. Washing your hair,brushing teeth, just talking, eating,wind on your face,showering, even walking (sometimes),putting gel in ya hair, sneezing, coughing, cold things ,list go’s on ,i hate this TN,best bit is I’ve lost 3stone in weight, only thing that takes the edge of is Tetregol ☹

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  5. Brushing teeth is always hard work, I have to brace myself every time. I don’t have to brush my hair, thankfully, as I keep it short, grade 1, but it is really difficult when my wife clippers it for me. Cold breezes are the worst, I have a neoprene mask that I wear for protection, and strangely enough since the Covid 19 outbreak, I’m getting fewer strange looks, problem right now is it is too warm to wear it, and too cold without.

    Liked by 1 person

  6. I’m relieved to know others have this same weird, horrific thing called Trigemenal Neuralgia. I have it so bad I’m bed ridden. My Neurologists act like it’s no big deal. They aren’t experiencing the devastating pain! I have multi episodes one right after the other. As many as 20 in 4 hours! And 40 in 24 hours! I’ve been on Carbamazepine and they switched me to lamotrigine because of the side effects of nausea, tremors, clumsiness, lethargy and it’s killing me! Im still doing it all! I ask about surgery options but I’m totally dismissed. Has anyone had any of the surgery options? If so… give details!

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  7. It makes me sad that I am particularly scared to wash my hair. It takes a real talking to myself to do it. I wash my face like I am doing brain surgery! I also identify with the wind issue. My husband and I were enjoying a glass of wine on the deck when a big storm blew up and I felt like my scalp was being electrocuted. I am thankful of every day that I am symptom free. I know I don’t have the worse case ever by any means. Generic Trileptal has worked fairly well for me. I hate it when my PCP refers to my condition as “your headaches”. I don’t think even the most empathic person understands the struggle if they haven’t experienced it.

    Liked by 1 person

  8. Thank You! So good to know I am not the only person who has that reaction to comparing the feeling of being electrocuted to having headaches! I have had babies, open heart surgery and back pain. I alway feel like my doc thinks I am being histrionic or melodramatic when I try to explain why an episode is like.

    Liked by 1 person

  9. Thank you for your blog
    I was diagnosed in August this year. I am really struggling at the moment. Ever since i went to a new hairdresser 3 weeks ago. I didn’t give it a thought having had a mobile hairdresser for years. When the new one massaged my scalp, I knew then I’d have a flare up. I cry nearly everyday. Nobody understands how debilitating this thing is. I have been prescribed Pregablin but it isn’t doing much other than making me gain weight. Im so miserable and low. I am really contemplating cutting my lovely long hair short. Thank you for all of your comments that I have read. It makes me feel that I am not alone.

    Liked by 1 person

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