Monday, 26 August 2013

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?

Monday, 19 August 2013

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?

Monday, 12 August 2013

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

Friday, 9 August 2013


© 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

Monday, 5 August 2013

Got That Monday Feeling?

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