What I Have Learned And Gained From Living With Trigeminal Neuralgia Since 2015
In 2018, I wrote this very blog post about what I’d gained from living with trigeminal neuralgia for three years, so I figured it was time for a bit of a re-do. It’s 2022 at the time of writing this and, although all my points remain the same, I think after seven years with trigeminal neuralgia, I have more to say.
Life is made up of ups and downs for everyone. My life didn’t become a series of downs just because I got diagnosed with a chronic illness. I’ve gained a lot from being diagnosed with something life changing and some of it is, surprisingly, for the better.
I have definitely learned to stand up for myself.
I look back at myself in 2015, when I first felt my TN pain, and I was a 23 year old girl, who didn’t have any idea what was to come. I was originally taking carbamazapine, which I switched to pregabalin and amitriptyline pretty quickly. The amitriptyline dried my mouth out so much that I couldn’t speak without sipping on water first. I was sat on the reception desk at my old job, with a bottle of water, to be able to physically speak to the clients. The ‘HR manager’ told me that it “didn’t look very professional” and instead of standing up for myself, I went away and cried. I was working 50 hours a week, on restless sleep only triggered by the medications I was taking, using all my annual leave for hospital appointments. Me, now, with years of neuralgia under my belt? She would know exactly what to say.
I’ve learned my triggers.. and then learned that knowing your triggers doesn’t mean you can avoid every flare up.
I know, as much as anyone can with atypical facial pain, what triggers a flare. I know exactly how long for and how hard I can brush my teeth before I’m in too much pain for the night, skills you can only learn after years of TN.
Living with trigeminal neuralgia for years has also taught me that you can do everything right and still end up in pain. I could write a list of all my triggers and avoid them forever (who needs to brush their teeth, or go outside, right?) and I would still be in my constant type 2 pain and I would still end up with an occasional flare up of the type 1 pain. You can’t avoid nerve pain.
I’ve become an expert at managing my TN without medication.. and accepted that, sometimes, I do need the meds.
I’ve been on and off medication.. and on and off again. I’ve blogged about coping without it, coping coming off it, coping going back on it and everything inbetween. There are pros and cons to both choices and I’ve toyed with every single one of them each time I’ve made the decision to stop or start medication again. There is no right way to do chronic pain.
Trigeminal neuralgia is often nicknamed the ‘Suicide Disease’, but, even though it is incredibly shit to live with this pain, I have learned that it’s not a death sentence to be diagnosed with TN.
I’ve written a blog post about the lack of substance behind the name and you can read about it by clicking here.
I have my cats, purely due to my nerve pain condition.
I remember on the warmest August morning, when a vet I worked with presented me with a tiny little black kitten and told me his brain wasn’t quite working either.. We were a match made in heaven. I took one look at him, thought ‘me too’ and two days later, when he was discharged from veterinary care, still blind, brain damaged and a little wobbly on his feet, he came home with me. Two days later, I picked up his sister, to help him learn ‘cat’ things. I was terrified of cats, but he needed me and had been given to me by the vet as she knew I had just been diagnosed with a neurological condition.. and, as it turns out, I really needed him.
I have learned that you can be referred to doctors who know absolutely nothing.
I vividly remember, as a very hopeful 23 year old in pain, thinking that being referred to a neurologist for neurological pain meant that I would be told exactly what was wrong with me, everything would be explained to me, I’d be given medication to fix the pain and everything would be okay. 30 year old me knows that I know more than every neurologist I will ever speak to about trigeminal neuralgia, minus specific specialists in facial pain, such as those I work with at the TNA UK.
Come to think of it, I’ve gained the biggest amount of knowledge about trigeminal neuralgia, facial pain conditions, neurology, brain surgeries and medication.
I don’t claim to be an expert, but I’ve lived with this condition for a long time and, in my experience, people who live with trigeminal neuralgia tend to be the ones teaching their doctors a thing or two. People with TN have to advocate for themselves a lot of the time, because this condition is always mistaken for everything else.. Raise your hand if you’ve ever been told you have a toothache or a migraine!
I’ve learned that, if you have a weird medical condition someone has never heard of, they might just dismiss it as being a problem.
We used to have an air conditioning problem in an old job of mine, where the main temperature could be changed by anyone, but the air con unit above my team’s banks of desks was blowing really cold. This, again, was before I’d really grown the confidence to speak up as much, so I’d definitely handle it differently if it happened now, but I did try to ask for help. Again, it was a ‘HR manager’ (who did actually get let go shortly after this, so I’m assuming the company worked out he was useless) who I approached, who asked me to explain my condition to him in great detail, then announced that there was nothing he could really do.. and sorry! He also called me disabled, which is a term I don’t use for myself. I have disabilities, but I don’t class myself as a disabled person and found it really awkward that someone else would label me without asking first, and only to then tell me that they won’t look into helping me.
I’m really glad that I now have an occupational health plan in place to ensure that I’m treated fairly with my medical requirements at work.
I’ve learned how to put my pain into words.
When you first feel trigeminal neuralgia pain, every pain is a 10 out of 10. Everywhere hurts, nothing makes it better, everything makes it worse and you feel like you could die at any minute. The longer you have TN, the more you can work out that your pain is sometimes an 8, not reaching the top end of your pain scale. You can work out what relieves the pain a little for you, or your coping mechanisms for dealing with the pain. You find the words to describe the pain – is it stabbing, shooting, or burning? Mine often feels like crawling under the skin, which I now know is called ‘formication’ and I can use this word to describe a part of my type 2 pain. I can show more accurately which areas of my face specifically are in pain and I can communicate better to medical professionals about my TN.
I have gained the biggest support system.
I have a crazy amount of readers on this blog (thank you to every single one of you!), some of whom leave me lovely comments, or message me to share their stories. I volunteer with the TNA UK as a regional support group leader and I’m also on the board of trustees. I’ve made so many friends along the way, who I know I can reach out to if I’m struggling. I started this blog when I felt isolated and now I’m definitely not alone in this journey.
I have learned that anyone can be a support group leader and you get just as much back as you put in, if not more.
I started volunteering for the TNA UK in 2020 and I’ve written a blog post about what I have learned from being a regional support group leader, which you can read by clicking here. I had no formal qualifications that enabled me to do this, I just feel able to talk about my experiences and wanted to connect with others who understand what it’s like to live with facial pain. I always come away from my support groups feeling happy and uplifted. If you live in the UK and you feel you could donate an hour or two of your time every couple of months, please get in contact with me about joining us at the TNA UK!
I’m more appreciative.
Of the low pain, or even pain free days, of the NHS, of my friends and family, of the fact I can still currently work. This point just explains itself.
And, finally, I’ve realised what a strong person I can be when I need to be.
When I was a teenager, I would have probably happily called in sick every once in a while for a headache and that is despite the amazing worth ethic my mum drilled into me. Now, I can be hitting a level 6 or 7 trigeminal neuralgia pain flare and I’m still managing to go about my day. I always say “I don’t have a choice”, because I don’t believe I do. When something really, really hard comes along in life, you can either let it defeat you, or you can rise up against it.
If you are living with trigeminal neuralgia, you are one of the strongest people in the world.
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!
Thank you so much for sharing this story. It is so heartfelt and encouraging and I think everyone of us can relate. I applaud you for being so kind and brave to share with everyone . Thank you
LikeLiked by 1 person
Thank you for sharing your experience and how to persevere through this unusual disease 😭. I am 23 and just got diagnosed with Trigeminal neuralgia, it’s been a month now. Carbemezaphine has been mostly usueful for me, but when I do have a flare up it feels like one big punch on my face 😭. I enjoy your perspective and positive yet honest mindset. I’ve read some of your other blog posts and they’ve been helpful. Let’s continue to fight the good fight