5 Reasons Why Your Pain Is Worse Than Mine

This week, I experienced my first ever serious ‘hate comments’ on my writing. I write because I enjoy it. I write about my life with trigeminal neuralgia because it might help someone. For the first time, I received some horrible comments from a woman on Facebook, in a TN Support Group – I couldn’t believe it!

I shared my last blog post on a few Facebook groups for people living with TN, a post about things I can’t do with my pain. It wasn’t an extensive, all inclusive list, just a short list about seven things that my pain prevents me from doing. It was light hearted, it was intended to be a conversation starter and, most importantly, it was something that I would have liked to have read when I was first diagnosed with TN. It was generally received very well, but one person really did not like my blog post.

The first comment on the Facebook post was just one word: ‘Wrong’. She then proceeded to post that I couldn’t possibly have TN, as I could sometimes manage a cold drink. She wrote that she’d had brain surgery and could now no longer feel any part of her face. She posted that she was out of work, because of her pain. She said that I didn’t know what I was talking about. She even posted pictures of the stitches in her head after brain surgery! I had to block her, before she continued, because I’m sure it was quite upsetting for other people reading, as well as for myself.

I didn’t think I’d ever have to justify a blog post about my pain. I’m blessed to have experienced remission before and I’m not currently at the worst level of pain that I’ve ever been in. This doesn’t mean that I don’t know what it is like to feel the full force of chronic pain.

But I’m not here to claim my pain is worse than anyone else’s, or that I know better. I hope your pain isn’t worse than mine, I hope you’re not struggling like I am, but I’m okay if you ‘win’ this one. I don’t mind how mine pain compares to anyone else’s. In fact..

Your pain is worse than mine.

..Because you’ve had brain surgery. The first time surgery was mentioned to me by a neurologist, my partner and I both said ‘no’, in unison, without even looking at each other. We’d already done the research and it didn’t seem like the route I wanted to go down, due to the many potential side effects, including paralysis of the face, permanent numbness or even worse pain than before, and the fact that it isn’t guaranteed to work. Right now, I’m able to live without brain surgery. That is a choice I’ve made, my pain hasn’t made that for me yet.

..Because your symptoms are different than mine. Some people are affected by heat, some are affected by the cold, some people’s pain is triggered by any movement at all, some have mainly random attacks, some people can brush their teeth, some can’t, some people have type 1, some people have type 2.. I have what they think is atypical (type 2) TN, so currently I have fewer stabbing type ‘shock’ pains and more long aches. I don’t think either are very nice. No matter what type of trigeminal neuralgia you have, I’m sorry you have any symptoms at all!

…Because you take more medication than I do. I have just weaned myself off amitriptyline for the second time. Last spring, I was on no medication at all and my pain levels told me that I immediately needed to be back on all my previous drugs, so by summer, I was taking around eight tablets a day. Now I’m only taking around 3 a day. The thing about medication for TN, that I have found for me anyway, is that it only helps with the pain, it never actually takes the pain completely away.. or everyone would be on it! I’m sure at some point, I’ll be back on eight tablets a day. Hopefully I’ll be on nothing again one day!

..Because you can’t work. I’ve only had a few sick days in my life, because I have the type of office job where I can drag myself in even if I look like I’m on death’s door and I can get away with barely functioning when needed. I’d be in pain at home and I’ll be in pain at work. That’s all there is to it for me.

..Because you’ve had it longer than I have. I’ve only had TN since 2015, but I can safely say that the absolute worst pain I’ve ever been in (or could ever imagine!) was right at the very start, when I’d had it for about 3 days. That pain might be nothing compared to what someone else experiences daily.

Everyone’s neuralgia pain is different. My trigeminal neuralgia is not the same as yours. Your pain might be ‘worse’ than mine, we just both suffer from the same suicide disease. The way that lady made me feel.. I promise I will never think I know better, if I’ve been here for longer, or because I take more medication than you. I won’t judge. I only feel sorry for her. ♡

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Trigeminal Neuralgia

23 Comments Leave a comment

  1. Stay strong….maybe SHE was having a bad day…all We can do is pray for each other. Nobody wants to play the pain game cause nobody ever wins!!!! We all have our own pain…Stay Strong👣👣❤❤👣👣


  2. Thanks so much for writing this. I have been an ATN suffer for 3.5 years, I’m 27, and I have been told several times on the support groups that my pain doesn’t matter because (insert: age, time suffered, atypical vs typical, etc) I think it is a weakness of thoes people that they need to feel they are somehow worse. I can only hope they can grow and mature and show love and support instead of pursuing pointless competition. Loving your blog, I can relate in many ways even if ATN has slightly different challenges.

    Liked by 1 person

    • Hello 😦 Thank you for your lovely comment! I have ATN as well, but I sometimes still get some big shocks like type 1! I’ve just flicked through your blog & followed, you take the words right out of my mouth! ♡♡♡


      • Thanks! I’m amazed you have been able to wean off medications with ATN, mine has been at a constant unbearable level for all 3.5 years and the only thing that keeps me sane and alive is my medications. Addmiteddly, they have taken a lot of adjustment to find meds that work at all, or that work without making me sicker with side effects. I think finally in the last 2 months I found a combo of Nortriptyline and Oxcarbazapine together that keeps my pain around a 2-4 dayly as long as I avoid too much stress and any triggers. Good luck! And I look forward to your posts. 🙂

        Liked by 1 person

      • I think a lot of us are in that gray area where we get both, especially younger folks. I get the dull pain that lasts for hours as well as occasional shocks, usually from a trigger. Though for me I think of it as less of a shock and more of something pulsing through most of the time. The worst I’ve had was when I had a series of shocks basically every 5-10 seconds for hours. That was complete hell on earth but far from the norm for me, as usually the shocks are just a few at a time or often just one.

        I have one IRL friend with TN and his situation is similar, somewhat TN somewhat ATN.

        Liked by 1 person

      • I am doing pretty good. Some how the Oxcarbazapine seems to be reducing the drowsiness of the Nortiptyline. I feel less like a zombie than I have in years. I wish I could be on Pregabalin. It is the only thing that ever got me pain free. But it made me horribly depressed and suicidal in less than a month, so it was too dangerous to use. I am super glad it is working for you!

        Liked by 1 person

      • Oh I’m sorry it didn’t work for you 😦 It takes the edge off for me! The amitriptyline was making me so sleepy & it was really getting me down. I’m much happier without it. I’d probably be happier off the pregab again, but I’ve been off them all before & ended up worse off!
        They never tell you how sleepy being ill & up to your eyeballs on drugs makes you! ♡


      • Very true, it is something you can’t understand until you’ve done it. I raised my Nortriptyline back in 2016 to a mostly pain free dose and I literally slept 18 hours a day. Not worth it. Pre-ATN I was an insomniac so I really struggled with this new ability to fall asleep anytime, anywhere. I’ll take half pain and stay awake, thanks.

        Liked by 1 person

  3. I have never read your blog before, but I will start now. I love this post. It sounds like you and I have similar types of ATN, just based on this post (but who know, right?). I’ve actually always counted myself lucky – as lucky as anyone can be with the “suicide disease” anyway. I was diagnosed early and within a year, had most of my issues under control. I do take a lot of medicine to keep it that way, but that’s neither here nor there. One major thing this disease has taught me is to realize that people are battling things every day that we can’t see. To the outside world, I look like a normal person, but I may be having a really bad pain day and it may be the day that I can’t smile or joke and that I may seem a little terse or maybe even rude. So I’ve learned to give the person who was just rude to me a pass – because they probably have something going on that I can’t see, too. I keep my chin up when someone makes a nasty comment that makes me feel bad or sad because they might be fighting their own intense pain or be worried about a loved one. Nicely done 🙂

    Liked by 1 person

  4. It’s ridiculous to try and compare pain experiences like that. Of course some people have it worse, I’ve seen horror stories in the groups too, like one woman who has been in constant ATN pain for eight years! It effects everyone differently; the same could be said for most illnesses.

    And I don’t like the attitude of that commenter, or of anyone who says if you’re not triggered by X or if you can still do X you must not have TN. I remember one conversation in a FB group where someone insisted that if you live in a warm climate you couldn’t possibly have TN because cold weather is the only trigger!

    Liked by 1 person

  5. Nicely stated. This disease is so different with each one that suffers with it. I’m empathetic for the loss of the things you can no longer do. I,myself, suffer. My list is a little different than yours, but the result is the same. Knowing you have lost control of a bit of yourself. Knowing you can be so debilitated at a moment’s notice with no warning. Knowing that there is no single cure but a patchwork of techniques that MAY work. I wish and hope that we could all be kind and understanding of our unique struggles with the same disease. There’s no gain otherwise. We all suffer. That is the same.

    Liked by 1 person

  6. Love your blog , hate the “Pain Wars”. We are all in pain. We all have to make choices about meds, work , activities etc . Some days we can handle more, some days we are a horrible mess that can’t get out of bed . And its all ok and we are all still in pain , We are all probably on enough meds to subdue a small elephant. Most importantly all of our feelings on the meds , pain , and lost opportunities are valid. We shouldn’t be comparing ourselves we should be supporting each other. I have had TN for 16 years. I have decided to still do all the things even though it feels like my face is being electrocuted 50 times a day. I don’t want to miss out its a choice . My choice. Currently taking 2700 mg of gabapentin and 20 mg Baclofen a day. I am always exhausted and loopy and in pain but you wouldn’t know it unless you “knew” it . That fact doesn’t invalidate the struggle I go thru daily . Thank you for facilitating these kind of discussions

    Liked by 1 person

  7. I’ve had chronic pain for 25 years now and I think I have the beginning of TN. My BFF has TN and one surgery so far which another one scheduled. Not every person will like what you have to say…..too bad. They don’t have to read it. Good for you for blocking her. No one needs that kind of negativity. We all have different kinds of pain but we all have so much in common. The disruption of life, can’t work, depression, anxiety, people who don’t believe us….the list goes on. Keep sharing your blogs because it does help people to understand they are not alone. ❤️❤️❤️❤️

    Liked by 1 person

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