Saturday, 16 July 2016

Three Years of Pain.

It's three years this week since the Trigeminal Neuralgia beast started to hunt me down, and ever since that day it has been stalking me, never leaving me alone. The pain has gradually gotten worse over time, and now it's at an unbelievable level, a level I can't tolerate. 

Doctors have tried and tried to help me, but as of this moment it was all a gigantic waste of time. I don't blame them at all, I know that they have done all that they could. It's this illness. It is monstrous and mysterious. 

So let me talk about the last couple of months. To but it bluntly it has sucked. My pain has changed slightly. The TN pain started on my left side originally, and I have ATN, so it NEVER goes away. About 6 months ago, it started on my right side, but not so bad at first. Now, it is a rival to my left side. How the hell can two Trigeminal Nerves screw up at the same time? Every moment is torture, some days are better than others, but on the whole, the burning and stabbing pain is always there. I can't forget about those shocks either, they invade my life regularly. There are days when the shocks are almost constant. 

One fairly new symptom is a crushing pain in my head, with most of the pain targeted over my eyes. Light bothers me a lot too, and sometimes I feel physically sick. It's not often that the nausea takes over though and I am thankful for that. My balance is wonky too. 

I have looked up the new symptoms and it sounds like cluster headaches. I have already been diagnosed as having Migraines, so this latest addition pisses me off. I will talk about this to my pain specialist on my next appointment. My GP is powerless to amend my medication, and he is reluctant to prescribe anything else. 

I dread to think about how I will feel this time next year. Will the pain continue to spiral out of control, OR will one of my Consultants figure out a way to help? I have to keep on hoping. All of us who have been ravaged by this sadistic illness have to keep hoping and to never give up! 

Our Awareness Day on October 7th is all about raising the public perception of this illness, and it is global. There are fantastic places Lighting Up Teal all over the world, including 15 in Ireland. A team of dedicated TN sufferers have committed themselves to creating worldwide awareness, and it is coming along nicely. The full list can be found on the TNNME website. 

TNNME - Light Up Teal 2016


  1. I have been reading your blog last months. I have read every post in your blog about 10 times. I come here every week to see have you posted something new. I have thought about you a lot. I have wanted to comment your posts, but I never know what to write. I was cooking today and for some reason again you came to my head. I wanted to know how are you doing so I came here. But you haven't written anything new. So I just ask. How are you?
    I think it is best when I share my story with you also. I got atypical tn December 2015. I visited dentist for months until 4th of April 2016 I was sent from dentist hospital straight to hospital. 4th of April was the day when I decided to try to get help for the last time. If they can't help me then I just kill myself in the evening was all that was in my head. But for some reason that was the day when 20th different dentist sent me to hospital. Until 26th of May I was in hospital, in ER or screaming of pain at home. No medicine helped. They kept me in hospital and have different medicines but nothing. Finally 26th of May they said only thing they can try is MVD. That helped with shooting pain, but constant pain stayed. Now I am taking Neurontin (gabamentin), Tegretol and amitriptylin. Neurontin seems to be the one that helps best. At the moment is under control. I still have pain and I constantly feel it, but I can live with it. Even though if it keeps going like that it is going to be a long life! I am all the time scared. Scared that it gets worse, that the medicine stops working. I have panic in me all the time. Even on days when I don't have pain I am still scared. I don't live anymore. I am just killing time. Since it started I have been thinking every day about suicide. Before I didn't understand why people do it, but know I feel that maybe it is my future. I hope not! But it is constantly in my head. Most days I try not to think at all as my brain is now my enemy.
    I don't know why I write this as it is depressing and doesn't help you. But I just want you to know that I understand you and I know how it feels. You are not alone. Please write me back :)
    Sorry for my English. I am from Estonia so my native language is Estonian. But I live in Norway and get treatment here.

    1. Have you heard from Sarah? I read her blog and am worried since she hasn't posted

  2. You haven't answered or written anything else. Are you ok?
    I'm in a hospital again. They try to figure out what to do with me. I just want to cry and give up. I'm so scared. My family and bf are very supportive but they can't understand my pain. This horrible diseas makes you feel so alone. How is your family handling it all?

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