We put this poster on to our awareness page on Facebook a couple of weeks ago.

Unless people are in the position of having an ongoing illness, or caring for someone with one, they possibly have no idea just how much online communities mean.

No matter what time of day or night, there is normally somebody available for a chat. This is so important when you live with certain conditions. Sometimes people can become quite down, even severely depressed, and the knowledge that having someone there is invaluable.

Someone once wrote that online communities are just one big pity party. But nothing could be further from the truth.

Some people do need to have a bit of a moan, and to be able to do that to people who understand. It is a way of coping. But there are people who are constantly trying to help, trying to pull them through their down spell.

Where would we be without those social networking sites?

TN is often seen as a condition with no cure and  no hope, but hopefully with online groups, people can get support and help. And until there is an actual End to Trigeminal Neuralgia, we'll be thankful for the invention of the internet.

Living With Trigeminal Neuralgia Can Bring Out The Creative Side

As the title says, we often see people writing poetry, prose, drawing  or painting. They make jewellery, they make cards, they just get creative.

Maybe it's a way of taking their minds off the pain. Maybe it's therapy to them. But whatever the reason, we feel it is too good not to be shared. So today, we have a couple of poems for you.

"Sitting Here"

Sitting here with my head in my hands,

The pain is so intense I can't even stand,

TN is my worst enemy, its never a friend

I wish I had a magic wand

To make this pain end, 

But I am a survivor and 

I will fight my way through,

The pills and the pain

I swear I will beat you...

You may be my enemy, but

You will not beat me, it will not be the end

As I gain all my strength from my

Family and friends

By Nicola MacKenzie

❊❊❊

"Waking Up"

I wake each morning not knowing what the day will bring.

Will the pain be low or debilitating?

Will I be able to do all the things that Mommy's do

or fight horrific pain the whole day through?

Will today be the day that I am pain free

or just another day in misery?

I'm so sick of pain controlling my life and

affecting my ability to be the very best mommy and Wife. 

I'm sick of not being able to enjoy this life

that God has given me this second chance at.

I'm sick of the doctors saying I now have this or that!

But we all have to fight even when we are weak.

Take the worry out of our loved ones eyes when they kiss our cheek.

This disease won't break us no matter how much it tries. 

Just you wait and see, Some day a thing of that past will be our painful cries. 

We may be down right now and feeling like we just cant take no more of this pain

and having to live this way.

Our pain free days are coming. God is listening when we pray.

By Dawn Gravitt Earwood

❊❊❊

So does living with pain bring out your creative side?

If it does, please let us know.

Let’s start with some empathy, compassion and understanding

What is trigeminal neuralgia and what can it compare to in pain intensity? Trigeminal Neuralgia (TN) is a nerve affliction in the face. The pain is recognized as one of the most painful known to mankind. As of today there is no cure.

Yes you say that I have heard, but what does it actually mean? First of all it is important to understand that this is not merely a headache or something you can snap out of. A headache can be treated with an aspirin and the pain will in most cases fade away. That kind of medication does nothing for nerve pain. What might help the pain is anti seizure medication that needs time to build up in the system and nothing you can take when you feel like it, or just take an extra.

As to positive thinking and just get on with it, it’s very easy to say but not so easy to do when your having bad pain and everything you do from eating, drinking, talking to actually breathing sets the pain off even more. To get an idea you can try to put clothespins in your lip, cheek, nose etc and see how easy it is to ignore that pain. And that pain is nothing compared to the intensity and pain of TN.

So what can we compare the pain with that everyone can recognize. Many have TN type 1, meaning zaps and lightning sharp pain. Each attack can last from a few seconds to hours.

The mild TN attacks can on the pain scale be compared to: Whiplash, ear infection, mild back pain and the flu...

Medium TN attacks are at the same point on the pain scale as: Migraine, dislocated elbow, arthritis, ingrown toenail and childbirth

Bad attacks are actually over the pain scale in intensity and women say they prefer giving birth multiple times than having that pain.

Some have TN type 2 also called atypical TN, aTN, a constant pressing, churning pain that you have 24/7. With aTN you’re never pain free.

What does aTN compare with on the pain scale?

Mild or what most call low pain is actually higher than what a normal person would endure before asking for an aspirin. Mild pain is at the same place on the pain scale as tooth ache or strong head ache, and higher than hitting your head or having blisters on your feet.

Medium aTN pain is around the same intensity as hemorrhoids, broken arm or appendix.

Bad aTN pain is also over the normal pain scale, more painful than giving birth or dislocated elbow. And the pain is 24/7 and can be for months at a time before lowering. ATN pain never disappears.

Some have both type 1 and 2, and when both are bad everybody can understand that that pain is unreal, not understandable and utterly excruciating.

Then we get the question, how can you live with that pain, that’s not human and I don’t understand.
Well, first of all, we don’t have a choice do we. You have to find a way to manage to live with it. Some can get better through medication and some can have medical procedures done. Some have to live without medication as they are allergic and some have had surgery but the pain came back. Regardless we just have to find a way to cope and go on living.

Today there is a lack of knowledge amongst medical professional and dentists. Sufferers can go years before getting diagnosed. Many also lack the support of friends and loved ones as they have difficulty in comprehending something they have never experienced and therefore reject.

We need awareness – and we need a cure. But let’s start with some empathy, compassion and understanding. Can you do that?

Trigeminal Neuralgia : 20 People, 20 Words

There are several books about Trigeminal Neuralgia. They give the facts.

But not many will talk about the fear, the anguish and the isolation that TN brings. They probably don't talk about how incapacitating or exhausting TN is. But these are also important facts. And these facts can only come from TN sufferers or caregivers.

For this blog post, we asked twenty people to write twenty words (approximately) about their experience of Trigeminal Neuralgia.

There is only one way to get awareness….we have to make it happen. Please talk about TN. Write about it. Share this blog and other blogs about TN. Share the posts made on TN awareness groups and pages (including our own on Facebook). 

The only way to ever End Trigeminal Neuralgia is by creating awareness…….so please help us make that happen.

We are always interested in your comments. Why not leave a comment with your own 20 words about Trigeminal Neuralgia?

The Trigeminal Nerve - A Positive Version

Last week we wrote about the horrible aspects of trigeminal nerve. We ended it by saying, can anything in life be more hated. Possibly some things in life can be more hated….but we all know it's pretty horrible.

However, sometimes, when we come up against something bad, we have to look for something positive to take from it. Sometimes we need to look really hard, but there is often something positive there.

This is a more positive version of The Trigeminal Nerve.

© 2013 End Trigeminal Neuralgia

THE TRIGEMINAL NERVE

© 2013 End Trigeminal Neuralgia

T is the TORTURE you put us through

R is RESENTFUL - that’s how I feel about you

I is the ISOLATION we often feel

G the GRUELING pain with which we deal

E - it’s EXCRUCIATING, that’s how it is
M - I’m so MEDICATED, my head’s in a tizz

I - Can I emphasise how ISOLATED we feel
N - is the NERVOUSNESS, even just eating a meal

A is for the AGONY, I go through every day
L for LONESOME, friends seem driven away

N for the NEEDLES, which appear from some place

E - they’re ELECTROCUTING, jagging into my face
R is for RELENTLESS, it just doesn’t give me a break
V has to be for VIOLENT, it just makes me ache

E - can only be for EXASPERATED

Got That Monday Feeling?

Monday

Today it is Monday

You wonder how I know

Ah, quite simple really

The computer told me so

© 2013 End Trigeminal Neuralgia

Where would I be without it

I can’t begin to guess

Because, to put it quite bluntly

My head is in a mess

The memory’s not so good now

And words just don’t come out

Everything I start to say

I quickly start to doubt

I think my brain stopped connecting

With my lips and fingers too

Spellcheck has made this readable

Or else you wouldn’t have clue!

My fingers do their own thing

And seem to dance around those keys

I type Rs instead of Ws

And mix my Gs with Bs

Is it because I’m getting older?

Or is it just my meds?

I think it’s the second option

They do this to our heads

E.S.