I’ve had a lot going on with the Trigeminal Neuralgia the past (I was going to say weeks but it’s actually been a year and a half) days? weeks? years? I know that my posts have reached a number of people who also suffer from this “suicide disease” so I’ve decided to chronicle the TN in weekly posts, and, in all honesty, mostly in an effort to hang onto my sanity. It’s something I need to talk about, to purge, so I can keep moving forward.

I purchased a five-year journal a while back and transferred all of my pain trackings to it recently. Because what else do you do when you have too much pain to concentrate on anything, right? I have had Trigeminal Neuralgia since 2017 and it’s been a rough ride. I’ll probably jump back and forth in this post to catch you up and then the future posts will chronicle each week.

You get a good indication of the intensity of the pain when you realize you’ve been composing suicide letters in your head. This is where I found myself this past week. I chose this picture because of its vivid colors. Trigeminal pain isn’t black and white, it is vivid bright colors thrown across a canvas in fits of anger. The vivid reds, the brilliant oranges, and the angry yellows are all representative of the intense pain of Trigeminal Neuralgia (TN).

Last year, especially January, was a dark time filled with pain more often than not. January (for six weeks-Jan-Feb) I was unable to function. I had so much pain I was could not make any facial expressions; that meant no talking, no eating, no swallowing, no chewing, sneezing, coughing, face washing. Nothing. The darkest point, which I wrote about a while back, was when I found myself standing in a dark kitchen with meds in one hand and a glass of water in the other and I couldn’t make myself take the pills because the pain was just more than I could bear. Days and days of unbearable, unthinkable, indescribable pain. I honestly didn’t know how I would go on. I still do not know how I made it through. That’s not true. I do know. It was only by the Grace of God that I made it through that dark time. I didn’t always feel him walking by my side, but he was there, and just like the line in the Foot Steps poem, there were times with only one set of footsteps as he carried me through.

This past week has been one of those painfilled weeks. I had to make an emergency visit to my dentist to have him change out a silver filling to a resin because the nerve was firing off of it. In the three years, I’ve had TN I have never been able to trace it to an exact point, until January. The pain was firing off of the only silver filling in my mouth. I might have missed this all together had a friend of mine, a physician assistant, not told me he had seen several patients and this was a common denominator. Once the fillings were changed, the patients no longer suffered from the pain. I was able to push on the tooth with my tongue and the pain would subside for a minute or two.

After the dentist changed the filling and the nerves had time to calm down, I no longer had the original pain from the nerve firing off the tooth, but the procedure angered, pissed off would be more exact, the nerve to the tooth in front. The pain wasn’t too bad at first, but as the week wore on, the pain became worse, until it reached the point I didn’t know how I would cope with the pain. For five days I couldn’t talk. Talking angered the nerve and it would burn and throb on the right side of my face and my forehead. Any movement would set the nerve off, even walking. I mostly sat in a chair and stayed very still. Yesterday (Friday) afternoon, I finally had a little bit of relief from the pain, and today was good. There were a couple of times when I moved the wrong way and the nerve let me know it was active.

Before I went to the dentist, I spent a week and a half with the worse pulsating pain in the upper part of my face. Nothing would make it go away. I spent beautiful sunny days sitting in a chair inside praying for relief from the pain. I cried for almost two weeks. My face was tired of crying. My eyes were tired of crying. I was tired of crying. And, I’m sure my husband was tired of me crying. Not because it aggravated him, but because it hurt him so much to see me in such pain. I have somehow always managed to hide most of the pain from this horrible disease, at least up until now. Now, I’m spent. I have no energy to hide the pain. I wish I could. The Fourth Station in the Stations of the Cross makes me cry every time I hear it:

Christ speaks:  My mother sees me whipped. She sees me kicked and driven like a beast. She counts my every wound. But though her soul cries out in agony, no protest or complaint escapes her lips or even enters her thoughts. She shares my martyrdom – and I share hers. We hide no pain, no sorrow, from each other’s eyes. This is my Father’s will.

I reply:  My Jesus, Lord, I know what you are telling me. To watch the pain of those we love is harder than to bear our own. To carry my cross after you, I, too, must stand and watch the sufferings of my dear ones – the heartaches, sicknesses and grief of those I love. And I must let them watch mine, too. I do believe – for those who love you all things work together unto good.

I finally called my dentist and asked what constitutes an emergency. He met me at his office on the same afternoon. He has followed my journey and I had spoken to him at a previous appointment about changing the filling out. The filling also had a hairline crack so the work was needed. We just weren’t sure if the procedure would help or hinder.

The tech attempted to take my temperature on the forehead as I was trying to make her understand that she could not touch my face or head at all. The slight touch caused excruciating pain after which I had a complete meltdown. The pain was so bad I just wanted to beat my head against the wall as hard as I could until the pain stopped. That is how crazy the pain makes you. I have a Kinza thermometer that works with my iPhone and it now stays in my bag in the event someone needs to know my temperature. We weren’t even sure I’d be able to have the procedure done. I have the kindest, most patient dentist. I’ve also never had my nose and cheek numb from a procedure either. He was great. He only accidentally touched my forehead once and we were able to complete the procedure.

I wake up each day not knowing if I will spend the day in pain so bad that I want to die, or if the pain will be dormant. Today was good. I hope tomorrow will be a good day. I have also found a neurosurgeon in Ohio who specializes in TN. I will be contacting him soon. I made the decision a few days back and then I had a good day and I think maybe not now. I have been unwilling to entertain the idea of brain surgery – up until now. It’s a difficult decision to make – brain surgery. It’s daunting but when you have the kind of pain that I have, you begin to think that maybe it’s not so scary after all. My affairs, as they say, are in order. Maybe I’m ready.

I will be writing each day and will publish each Sunday. Some days the writing may be raw due to pain, while others show what life is like with little or no pain. That’s how this thing rolls.

Until next Sunday…

My mission is to educate people on silent killers, diseases you can’t see; Leukemia kills and Trigeminal Neuralgia is known as the suicide disease. Just because someone looks fine on the outside, it doesn’t mean they aren’t dying on the inside. Tread lightly.

 

What is Trigeminal Neuralgia?

https://mylifeonestoryatatime.com/2019/03/30/what-is-trigeminal-neuralgia/