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.

Treating Trigeminal Neuralgia Pain……… One Size Doesn't Fit All!

If only treating Trigeminal Neuralgia was as simple as going into a shop and buying a new tee shirt.....one size fits all. No need to try it on. It will fit. Says so on the label.

No, Trigeminal Neuralgia isn’t that simple. Doctors prescribe a drug at a certain dose, then increase it, then keep increasing it. Then the doctor will add another med into the mix. Then increase it, then keep increasing it. Still in pain? Ok, let’s try this med as well, or sometimes instead of. If it’s instead of, then you need to come off those others and start from scratch. 

It can go on and on and on. And people can often still be in pain. No matter how good the doctor is, no matter how knowledgeable the doctor is about TN, the same thing can happen. It’s not the doctor’s fault. It is Trigeminal Neuralgia’s fault. It is just so difficult to treat.

Many people go for a long time before a proper diagnosis, so then it is even worse. They have often already been through every over the counter med that you can buy in a pharmacy. Then GPs start trying stronger analgesics. They don’t help either, so eventually the the correct TN meds get prescribed. Those are normally epilepsy meds and some anti-depressants. But just because they are the correct meds, doesn’t mean they will work for everyone.

It is all very trial and error. Every med works differently for every patient. Some don’t work at all for some patients. And some cause a bad allergic reaction for some people. And what makes meds even more confusing for patients is that each drug has at least two different names.

But…...with patience and understanding doctors, the right drug or combination of drugs can sometimes be found. It might not always be perfect. There might still be some pain, but if it is better than before, then it is good.

And if meds really don’t help, then there are some surgeries and other treatments. Again.....there is no one size fits all. If only...

Even with home remedies, it is the same story. What helps one person, may not help another. Everyone is different. We have a file on our Facebook page with some self help tips which have given some people a bit of relief. Obviously, we can’t guarantee that any will work with any individual’s pain, but it may be worth taking a look. It’s HERE

Hopefully one day, they will come up with something which does suit everyone.

Trigeminal Neuralgia - Support

Support is very under-rated. Nobody really knows just how much it is needed.....until you don’t have it.

Thankfully many people with Trigeminal Neuralgia do have loving and caring families and understanding friends.

However, sadly, for some people, that support is not there. It possibly was there in the beginning of their journey with TN, but gradually (in some cases, fairly quickly) people backed away, leaving them to cope on their own.

Support groups become crucial for those people. Especially online support groups. To know that they can have people to talk to at the click of a button is so important. People to listen to their worries. People to cry to. People who understand. People. Just people.

But it is still never the same as having the person sitting next to you hold your hand when the pain gets bad.

So what happens to those who don’t stay. Why do they leave? Can they not take the stress? Can they not face watching the person they care about in pain. Or do they simply want an easier life. Perhaps that is a question we will never know the answer to. 

Perhaps those giving the support also need support.

Life is hard.

Life with Trigeminal Neuralgia is harder.

So to all those who are there, who stay through thick and thin, through all the pain, we cannot thank you enough.

If the shoe were on the other foot, we would be there for you.

 www.facebook.com/endTrigeminalNeuralgia

What is Trigeminal Neuralgia?

People have a habit of screwing up their faces when you tell them you have Trigeminal Neuralgia. “Tri what?” is the usual question.

It’s quite difficult to explain.

Do you try to tell them in medical terms?

That we have two trigeminal nerves, one for each side of the face.The trigeminal nerve is a paired cranial nerve that has three major branches: the ophthalmic nerve, the maxillary nerve, and the mandibular nerve.

One, two, or all three branches of the nerve may be affected. It can affect one side of your face, and occasionally both sides.

The pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, or jaw and side of the face.

It can sometimes be caused  by a compression on the nerve, possibly by a blood vessel or artery. Sometimes, there is no known cause.

Then do you add this bit?

Trigeminal Neuralgia is one of the most painful conditions known to mankind and is sometimes referred to as the Suicide Disease.

Or do you try to give a more easy to understand explanation?

It is so important to try to make people understand this pain. Medical explanations might not be understood by everybody. And calling it the suicide disease isn't describing the pain at all. We need understanding, but in order to get that, we need to describe the pain well.