I Can Explain My Trigeminal Neuralgia Pain To You, But You Won’t Understand

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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 does not make any profit. If you enjoyed reading my blog, or found it useful and would like to make a donation of £3 towards the cost of the domain, you can do so by clicking here. Your contribution will help keep this website running. Thank you!

Trigeminal Neuralgia

11 Comments Leave a comment

  1. I have bilateral Atypical TN 1 and 2! I just came back from a 57 day, YES 57 DAY attack where around day 41 I truly wanted to die! This is how I describe my pain…
    “Imagine being continuously stabbed with an ice pick way down deep in your ear. Now add that whole side of your face being crushed in a vice while being repeatedly bashed with a baseball bat. Add to that the feeling of chewing on tinfoil on your fillings, being electrocuted from the inside of your cheek and don’t you dare shed a tear because your tears feel like battery acid running down your face. Now put all of that together with blurred vision from the eye that’s almost completely closed. Ok, got all that in your head”? “Now add to all of that the fact that wind, cold, even the ambient air feels like razor blades slashing you skin while salt and alcohol are being poured in those wounds”. Please don’t tell me, “I have migraines so I know how you feel”. I’ll take your migraine any day!! Tell me how you have to call off work because of your migraine, I’m not a cold-hearted person, I’ll feel sorry for you while I’m working 60 hr wks, in pain you can’t even comprehend… for 57 days!!!

    Liked by 1 person

  2. Chris, I appreciate your comments and want you to know that I appreciate your post and am also suffering from this terrible affliction.
    As of today I am in severe facial pain waiting to see a neurologist and a neurosurgeon in the next few weeks medication. But in the meantime all I can do is take my meds.
    But I believe I’ve had a pain breakthrough in my meds because my pain has gone fulltime now for the last several days and nothing’s working anymore to control my pain and I dont know what to do
    This just sucks horribly
    I dont believe if I presented myself at the emergency department that they’ll be able to help me at all.
    Anyone have an opinion on that ?
    Thanks.

    Liked by 1 person

  3. Hi, Thankyou for your response. I’m in the USA, but the principles of treatment are fundamentally just the same
    I’ve been under the care of a orofacial pain specialist until recently but have now been referred to a neurosurgeon after my brain MRI was allegedly inconclusive in ruling out TN
    Currently taking Gabapentin and Low Dose Naltrexone daily and and as I stated in my previous post these meds seem to have ceased having much therapeutic effect at all.
    So right now Im scared and worried as to which way to turn and what to do going forward.
    I won’t see a neurologist for an initial consult for a week and then I’m scheduled to see a neurosurgeon for the first time a week after that
    In the meantime I’m 10 months into this nightmare and its very difficult to function some days.
    It’s so mentally and spiritually taxing in the body and mind.
    And the Gabapentin doesn’t help either when it comes to being alert and involed in my day.
    Anyway Thanks and Ill have more to say later.

    Liked by 1 person

    • I’m unsure how it works in the US, sorry Jon. I’m really hoping you manage to get sorted though. You can always send me a message via the Contact Me at the top of my blog if you need a friendly face though. I’m always available for a good rant, or a shoulder if you need one.
      You are doing amazing & you will get through this 💙

      Like

  4. Hi Kiz, I am also a TN patient, I got diagnosed at age 20. The worst part for me, is the judgement I receive. Everyone has something to say, even if they know nothing about my conditions. It has taken me a lot of time and effort to learn to believe in my own experience, instead of CONSTANTLY trying to defence myself. People assume that the problem is the illness itself and that’s it, but what about the support system? It’s a big deal! I hope you feel better soon… thank you for everything you share, take care!

    Liked by 1 person

  5. This was great to read for me, I totally get it as I feel the same. I’ve only just discovered fb groups and been able to speak to like minded people. Because no one does understand, not my family, friends, no one. Unless you’ve experienced it yourself. I’ve had TN for 3 years and GPN since March 2021, it’s miserable. It took a trip to A&E a few month ago before anyone listened to me. A very unsympathetic Neurologist said it was just depression. Now on Gabapentin and it’s getting me through. Reading this made me feel like I wasn’t alone x

    Liked by 1 person

  6. Thank you for wording this so eloquently and sharing your experience with the world! This is a very isolating condition and having people around who can relate to it, makes a big difference! I just had an MVD, 11 weeks ago and I am pain and med free now. I still have some fears when the weather feels like it’s changing, but working on my PTSD.
    Support groups online were a life saver for me!

    Liked by 1 person

  7. I don’t think anyone can understand the pain of TN who doesn’t have it. I think I have a wonderful neurologist who does what she can to help with the pain yet also keep me functional. I have been in a flare for two weeks and completely get why they call this the suicide disease. The pain saps your strength and will over time until nothing is left. Knowing that there are others out there that have TN and are willing to share the stories of what they are going through, is the rope that help pull me forward

    Like

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