My Chronic Pain Story Part One: What It Feels Like To Get Trigeminal Neuralgia

In July 2015, I took my boyfriend (now husband) on a trip to Rome for his 25th birthday. I was impressed that I’d managed to plan the trip on my own and, on top of that, actually keep it a surprise for months until a couple of weeks before we went! It was spectacular and I loved every second, but unfortunately this isn’t a travel blog post, this is the story of my suicide disease. I’m going to start at the second to last day of our holiday, when I realised that my teeth were starting to hurt a bit.

I never used to have toothache very often. It’s funny to think that now, because my teeth hurt almost every day of my life. As I’m typing this blog post, I have to keep stopping to hold my nose, because it’s stinging, and my jaw is aching. I remember taking a couple of painkillers and having a quick nap before dinner. I remember the painkillers not really working, but pushing the pain to the back of my mind, because I was having such a good time. It wasn’t a severe pain, but it was a good, strong, consistent ache in the entire top left side of my mouth, which continued into the plane journey home and followed me back to our flat the next day.

One thing that I don’t think too many people know about me (so clearly, I’m about to throw it out there on the internet for everyone to see now!) is that a couple of my teeth are bridges, so if you’re not familiar with any dental terms: two of my teeth aren’t really mine. I was born without these teeth, I have no feeling in them, you can’t hurt them.. Which is why it was really strange when one of them started to really hurt, when we were watching TV that evening at home.

From stepping off the plane to getting into bed the evening after our holiday, the pain was getting progressively worse. It was coming in waves and I was obsessed with brushing and flossing my teeth, trying to find where the pain was coming from and wondering why on earth I was having pain in a tooth that is made of porcelain. The pain also seemed to be jumping around between different teeth. I went to bed early, after complaining to my other half all evening about how I was feeling.

I woke up at about 4am, in the most agonising pain I could ever imagine. I couldn’t breathe, I couldn’t think. I crawled out of bed and to the sofa, because I didn’t want to wake my partner. I lay on the sofa and tried to breathe through the pain. It was still coming in waves, so I was getting some relief, but then the pain would come roaring back. I remember thinking, “if this pain just stops now, I won’t have to call the dentist, I can go back to sleep and it’s like it never happened” – what kind of strange logic was this?!

The pain was unbearable. I decided it wasn’t enough to warrant an ambulance, because, in my head, I had decided that if the pain just went away, I’d never have to think about it again. I dialled 111 and told the operator that I thought I was going to die. It sounds stupid when I write that, but I genuinely thought I might die. The pain was so bad that I almost lost consciousness several times and I thought my body was about to shut down. Because the pain seemed to be coming from my mouth and my teeth, I was told I’d have to see a dentist in the morning for an emergency appointment. I now know that this a barrier that a lot of people with trigeminal neurgalia face in their path to being diagnosed. They are instantly sent to the wrong type of medical facility, because there isn’t enough awareness about the condition. I know now that my pain has never been because of my teeth or any dental problems. I can’t otherwise fault the staff at the 111 contact centre. They’re not there to diagnose me, they work off the limited medical advice they can provide on the front line.. But there lies a huge flaw in the system, which delayed me getting the proper help I needed right away.

I lay on the sofa, counting down the hours til the dental surgery opened and, after I’d called for my emergency appointment, I couldn’t even get dressed properly to attend. I think I went in my pjs and a hoody thrown over the top, my hair shoved on top of my head. The pain was more broken up by this point, with larger gaps splitting the waves of pain, which were still just as bad but less often.

I was actually willing the pain to come back as I was in the waiting room (even though the pain was so bad that I thought it was my body shutting down and me dying!), just so I could, firstly, show the dentist that it was really happening and, secondly, so it could help me show them where the pain was coming from – as if I’d completely forgotten that the pain was moving around my mouth so much that I wouldn’t have been able to identify where it was coming from anyway!

The dentist I saw wasn’t my usual dentist, but she was lovely. She did lots of xrays (something I usually refuse at the dentist because they make me feel so sick) and couldn’t find what was causing the pain, so I begged for more xrays, which meant she had to go to find my usual dentist to see what they could do for me. He had a look in my mouth and at the xrays and, as the first dentist had already told me, nothing was physically wrong with my teeth.

At this point, they asked my other half to leave the room and asked me if I was feeling depressed. I’d just come back from a holiday, I was happy, I wasn’t depressed. My dentist then told me about a condition he suspected I had – Trigeminal Neuralgia – and to see my doctor ASAP.

The first thing that comes up on Google, everywhere, when you look up information on TN is ‘the suicide disease’. Of course we Googled the condition right away, we’d never heard of it before and I wanted some quick, easy information. I don’t regret that I did that, but I wish there had been more information than was available that wasn’t absolutely terrifying.. and this is why I write my blog today!

Click here for part two..

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Trigeminal Neuralgia

20 Comments Leave a comment

  1. I’m having my 8th Anniversary of TN this month. Started in my mouth, terrible pain. I was lucky that my doctors partner had just recently had MVD for it so he recognized it right off so he put me on tegretol immediately and got it under control for the time being. I now cannot find any relief after multiple surgeries, procedures and meds. I’m waiting to get into a pain management clinic and I suppose be treated like a junkie. Take care!

    Liked by 1 person

  2. I came up with trigeminal neuralgia in 2004. I had some strange electrical-like hits across my upper lip. We went to Disneyland and one morning I when I brushed my teeth I got hit with an unbelievable hit. I actually fell to the floor. I was quickly diagnosed. I got in touch with a neurosurgeon who pioneered the use of gamma knife. I went to the support group at the University of Washington in Seattle and eventually co-chaired the group. We had monthly meetings. I chose to do the gamma knife procedure. It took a few months for the pain to totally leave. I had many years of a good result. I have an as needed prescription just in case. Recently, I have been feeling some burning on the lower lip. I hope it does not get worse. It is an awful disease. The fear is hard to live with.

    Liked by 1 person

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