My Chronic Pain Story Part Two: My First Week Of Trigeminal Neuralgia

If you haven’t read part one of my story click here first!

I went home from the dentist and didn’t go straight to my GP, because I was overwhelmed and tired and wanted to be in my flat. My partner tucked me on one of our sofas and tried to make me something to eat, which I think may have been a tin of ravioli, because it was the softest thing we had in. I remember bursting into tears as soon as it touched my mouth and going to bed sobbing my eyes out. I was screaming at him to get me some painkillers, but I was always eating paracetamol and ibuprofen like sweets. He nipped across the road to the chemist and came back with all the cocodamol that the pharmacist would allow.

It’s really strange, the things that go through your head when you’re in pain. I remember trying to hang my mouth slightly open, because I was convinced that my problem was that I was clenching my jaw, which I probably was at the pain, but definitely wasn’t the cause of my pain.

Then my entire face went numb.

I couldn’t feel my face. I don’t know if this actually happened, if I was delusional from the amount of pain I was in, if my brain had decided enough was enough, or whatever else, but I couldn’t even feel myself touching my cheek on the left side of my face. So I called 111 again.

I was asked the general questions relating to if I was having a stroke and advised to see my dentist again, but I was hysterical, so was offered an emergency walk in appointment, with a very pleasant GP who sent me away with codeine to see me through til I could see my own GP and a neurologist. He said that it looked like some kind of nerve pain, but because I didn’t feel particularly hair sore, he wouldn’t diagnose it as TN. It’s amazing how the lack of one symptom at that particular time meant to a doctor that I couldn’t have something like TN wrong with me. He also commented on my age and said how rare it was for someone so young (I was 23 at the time) could have neuralgia – something I know realise is ridicious, because I’m sure many of you reading this are in your twenties or first started with you neuralgia in your twenties!

The pain, of course, came back after a couple of hours. I had a painful weekend. I slept on and off, I ran out of tears very early on, I lay in my bed half conscious when my partner was trying to talk to me or give me my painkillers. I didn’t eat or get a proper night of sleep. This was the start of a very rough patch for our relationship, because I stopped being a girlfriend and just became a shell of myself. I owe my partner so much for everything he’s done for me over the past few years, but especially that weekend. It was the most difficult few days of my life and I could not have done it without him.

On the Monday morning, I went into work like normal – nothing is ever stopping me! – and called my GP for an emergency appointment from there and this is where my journey to diagnosis began.

I know this isn’t the happiest story to read, but I find it really interesting and useful to hear people’s first experiences with neuralgia. It’s different for everyone, but sometimes I’ll hear something that is exactly how I felt too and I feel less alone. Please keep sharing your stories with me. They’re not only helping me, but they will also help others and it might even help yourself to get it all out in the open and off your chest.

Please let me know what you’d like to hear from me next! ♡

Trigeminal Neuralgia

9 Comments Leave a comment

  1. Thankyou so much for the time and effort put into these words you have wrote which I completely sympathize with as being almost identical to mine 1st starting. 3 years later I got the diagnosis of tmj with ‘possibly’ TN! Was pushed from Ent, neurology and the local dental hospital.
    It’s so bloody frustrating when these health professionals just don’t listen!!!
    Mine started after sinus surgery and I’m convinced the damage has caused it. The pain you describe it the same.
    I don’t get as many attacks in summer but winter is catastrophical.
    Wishing you pain free days and soft cuddles with lots of love and thanks.cx

    Liked by 1 person

  2. Thankyou so much for the time and effort put into these words you have wrote which I completely sympathize with as being almost identical to mine 1st starting. 3 years later I got the diagnosis of tmj with ‘possibly’ TN! Was pushed from Ent, neurology and the local dental hospital.
    It’s so bloody frustrating when these health professionals just don’t listen!!!
    Mine started after sinus surgery and I’m convinced the damage has caused it. The pain you describe it the same.
    I don’t get as many attacks in summer but winter is catastrophical.
    Wishing you pain free days and soft cuddles with lots of love and thanks.cx

    Like

  3. This sounds very similar to my own story. I would love to hear more. I’m currently waiting on a neurologist to call me with an appointment to confirm the diagnosis, but my primary care and 2 ER doctors suspect TN is my issue. I’ve missed so much work and my dr won’t help to get any of it excused. My pain also started in my teeth. I also thought I must be clenching my jaw, maybe in my sleep. I told the ER docs “Look, I’m not suicidal or gonna harm myself… but if God came down and asked if I wanted to die, I’d take the offer.”

    Anyway, I would love to hear more of your story!

    Liked by 1 person

  4. I’m not an emotional kind of chap, but I struggled to read part two as my eyes were full of tears. This was because I recognised so much of what you were saying in terms of how you felt emotionally about the pain. It’s almost impossible to convey the relentlessness of the pain, and the crazy optimism that it will just go away almost like someone who has got fed up of beating you up. You were lucky to have a dentist that recognised the pain as I didn’t and I’ve lost so many teeth before and after diagnosis due to the damage of dentists chasing pain. I’m happy to day mine is under control now with the aid of Tegretol, but I know like most chronic pain sufferers I will never be the person I was. Thank you for sharing your experiences

    Liked by 1 person

    • Thank you for sharing your story. I was diagnosed with trigeminal neuralgia at the age of 18 and the pain started 2 weeks after getting my wisdom teeth out, and like you said, people always run to the dentist before anything and that’s what I did and they didn’t see anything. Over the years it has gotten progressively worse and remission times have gotten shorter. I’m 23 now, I’m a mom, soon to be wife, and having the microvascular decompression surgery on June 22nd, because the cause of all this pain is a vessel compressing my trigeminal nerve.

      Liked by 1 person

  5. Karen, thank you for your story. Mine came out of the blue. My story starts with: It started as a root canal, followed by a tooth pull, followed by another root canal. Followed by pain in teeth with root canals, an area where the tooth was removed and I was at by boyfriend’s place when the pain exploded. What the $%@ I could hardly breathe, I am sure my BP was off the scale. I couldn’t stop the pain. Now dental specialists did the root canals and tooth pull.

    I called my regular dentist and asked for different referrals. I was given a referral for another endodontist who first suspected TN.

    The specialist I was sent to was at a university. I am located in the US. There was a whole team at that location, the doctor, imaging center, surgeon, therapist. A great set up. In the US, our insurance companies add road blocks in getting treatment.

    This makes it more challenging if you are paying, because your insurance does not cover this. Instead they offer doctors who are not specialized in what we have and have 2 star ratings.

    This is a little known disease. And yet those of us who have it from babies to seniors live it. Sometimes we may go into remission, only to never relax because at any moment ir could strike again.

    Somehow we need to be heard, so every story is so important.

    So, thank you. Hugs and prayers coming your way💕💕

    Liked by 1 person

  6. I am much older than u but for me it started in such a similar way the pain in my teeth was or is unbearable it really started in November and I’m still waiting to see a neurologist.Im glad u have a supportive parter I’m afraid I do not ,thank you for your sorry .Michelle

    Liked by 1 person

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