Monday, 24 June 2013

Facing Reality : Children Can Also Suffer From Trigeminal Neuralgia

The three of us started our awareness campaign last December, not quite knowing exactly what we were doing or how to do it. But we just muddled along at first, then quickly realised that we needed a plan.

We wanted to create awareness, but we also wanted to have a place where people could find help and advice from fellow sufferers.

It was soon falling into place. We had a growing community of TN sufferers who were more than ready to help and support one another.

Living with this kind of pain gives you one thing. Empathy for other pain sufferers.

Sometimes it has been so emotional reading people’s stories. Reading of the years they’ve spent trying to get diagnosed. Reading of how living with the pain has taken their work, their relationships, their friends, sometimes their lives.

But there can be nothing more heartbreaking than one thing we discovered....the number of children who suffer from Trigeminal Neuralgia. That discovery has been shocking and has brought many tears. Yes, we had read that TN can affect children, but when you actually meet some of them, or their parents, it is truly heartbreaking.

That, more than anything, pushed us. We had to make our awareness campaign work. We had to be able to make people understand this condition. We had to let people know how important it is. We know we can’t make miracles happen. But without awareness, people will never know about it. And if it is not known about, there will never be hope.

And everyone needs hope.

Especially children.

A picture drawn by an eight year old child
when asked by his doctor to describe his pain.
This picture speaks a thousand words.

Monday, 17 June 2013

TN Info

As we all know, Trigeminal Neuralgia is fairly rare. So why was I utterly shocked the other day while searching for something online?

I came across a health website offering tips and advice about Trigeminal Neuralgia. The first line was, “Trigeminal Neuralgia is a common problem.” I continued to read and found many more inaccuracies such as TN affects just the right side of the face, affecting the eye and lower jaw and only happens while resting.

I actually couldn’t believe what I was reading, but what shocked me more was that the article was supposedly written by a doctor!

I read it, and several other TN sufferers read it and we all agreed just how wrong it was, but what if someone new to TN reads it? What if someone’s relative reads it wanting to find out more, so they could offer more support?

This was a health website, with articles written by doctors. People would expect they could trust the information to be correct. I emailed the website, a detailed email, about the inaccuracies, hoping for a positive response. I explained that TN needs awareness, but it does not need bad information online. I hoped they would take the article off, and correct it before putting it back up. I got a reply asking me to just leave a comment as it could help other sufferers.

Well, I did leave a comment, as did several other TN sufferers. I suggested that anyone reading the article should go elsewhere for information as that was not a reliable source. I hate to think how many other articles were completely off. That is one website I shall avoid in future.

Thankfully, not all websites are like that one. Some are very helpful. Most countries probably have their own Trigeminal Neuralgia Association. Obviously, we can’t list them all, but here are links to a few.

Facial Pain Association, USA
TNA Australia
TNA Canada

If your country has a TNA, and we haven't listed it, please let us know and we will do so.

There is also a very good book about TN called “Striking Back” by George Weigel and Kenneth F. Casey, MD. This is an excellent reference for both sufferers and carers with detailed advice on medication and treatments. It can be purchased from most of the TN Associations or from online bookstores.  

We, at End TN do not profess to know everything about Trigeminal Neuralgia. We are not doctors....we are simply TN sufferers trying to promote awareness.  We can sometimes offer suggestions and we can certainly give support. But for medical advice, we would always suggest to people to speak to their doctor, neurologist or neuro-surgeon. Even the pharmacist sometimes can help if the problem is relating to meds.

Technology has progressed so much over the years, so that we have information at our fingertips. However, as proved this week, it is not always the best information.

Wednesday, 12 June 2013

It's All About Awareness!

So here we are - our very first post on our End TN blog. If you have just come across us after searching online about Trigeminal Neuralgia, then we are sorry to meet under these circumstances, but we hope you will find something here to help you. If not help, hopefully we can give you support and hope for a better future. If you already follow our End TN page on Facebook, we hope you will stick with us and follow our blog too. If you haven't seen our Facebook page, it's here.

If you look at the right hand side of this page, you will see some links which will take you directly to our Facebook, Twitter and You Tube pages. There is also a page called "who we are" to let you know a little about us and what are doing at End TN.

When we say End TN, we actually do mean we would like to see an END to Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, Trigeminal Facial Pain, Neuropathic Facial Pain, or any other type of Facial Pain. (Sometimes doctors don’t actually know what to call it). All bit of a mouthful, so we’ll just refer to everything as TN or Trigeminal Neuralgia.

The pain can come in several a bolt of lightning, like an electric shock or it can be grinding, drilling, aching or burning to name just a few descriptions. It can be a one off shock or it can be a constant ache. The pain is sometimes referred to as the suicide disease due to the severity. Everybody’s pain is different and everybody’s reaction to meds, treatments or surgery is different.

But no matter what it is called and no matter how painful it is, there is one fact about TN which everyone hates.

It is totally invisible.

Nobody can see it.

Nobody can see what a horribly painful condition Trigeminal Neuralgia is. To suffer pain like this, you would think at least something should show.

Trigeminal Neuralgia is just one of many Invisible Diseases. But even though it can't be seen, it doesn’t have to be silent.

We need to talk about TN, write about it. Write to magazines, television shows, radio, newspapers. We need to all do we can to help people learn and understand Trigeminal Neuralgia. We need awareness. Awareness amongst non-sufferers and awareness amongst the medical profession.

There are other campaigns on the go just now too, so together, we should hopefully be heard. We need to make sure we are heard!

One of the other groups campaigning has a petition asking the World Health Organization to take action on Trigeminal Neuralgia.  Please sign the petition. Whether you have TN or you know someone with TN, it is important for WHO to realise that so many people want something done about the condition. You can find out more here. They have also organized an international TN awareness day for Oct 7th, organised teal coloured ribbons, and are trying to raise money for the Facial Pain Research Foundation. the picture says, “Together we can make that voice louder”

And if we do, hopefully, one day, we might actually see an end to Trigeminal Neuralgia.