Awareness Day

Awareness is so important

Without awareness nobody would know about so many dreadful illnesses and conditions. We wouldn’t know about troubles throughout the world, about starving nations, about war torn countries. Trigeminal Neuralgia is only one of many things which needs awareness and help.

Living with chronic facial pain like Trigeminal Neuralgia can be extremely isolating, exhausting and even frightening. There is so much more to living with the pain, than simply living with the pain. More needs to be done to help people. More understanding from doctors. More research needs to be carried out.

With awareness, hopefully we can achieve that.

We hope that one day, people will hear the words “Trigeminal Neuralgia” and immediately understand how much pain this condition causes. We, the sufferers, are really the only people capable of doing this.....and it can be done. By talking about our pain, by writing about it, by trying to get as much exposure as possible, we can help people understand.

If we say nothing, people will never understand.

If we say it is a migraine or earache because that is easier than explaining, people will never understand.

If we just give it that nickname of the Suicide Disease, people will still never understand.

The only way we can expect people to at least try to understand is for us to name it and explain it.

Awareness days are an excellent way to get more exposure, but in actual fact one day in the year is only a very small part of the awareness work which goes on.

We all need to work constantly, throughout the year to get more understanding. We need to work hand in hand with the official TN organizations. We need to ensure that any information we pass on is correct, easy to understand and it needs to reach the eyes and ears of not only TN sufferers, but their families, friends, colleagues and even medical personnel if at all possible.

With the internet, we have knowledge at our fingertips. Knowledge is power. The internet has made the world much smaller. Social media can play a huge role in awareness work. The ‘share’ button must have been invented for people trying to raise awareness.

People have often asked, ‘Why bother to share posts about TN? Does it really do any good?’ The answer is yes. To another person suffering, our posts help them feel less alone with their pain. The knowledge that another person knows exactly how they feel helps. Our posts also give them a way of explaining their pain. So if one more person understands this horrible condition, then it is definitely worth sharing the posts. However, we understand that not everyone feels able to share posts about their condition, and that is fine too.

Awareness posts about Trigeminal Neuralgia help people, but more than that, they also bring hope. We know there are no magic answers, but when we have hope, life is so much better.

For more information about the research being done, please take a look at the Facial Pain Research Foundation's website. http://www.facingfacialpain.org/

Trigeminal Neuralgia can be difficult to explain. We have made posters and videos which can help do this. 

• Faces Behind The Pain video
• Trigeminal Neuralgia Challenge Video
• What is Trigeminal Neuralgia (in various languages)
• Pain Attack and info cards (in various languages)

For more information and awareness material which can be shared, please visit the End TN page on Facebook. www.facebook.com/endTrigeminalNeuralgia 

Dr Kenneth Casey MD

There are so many facts on the internet about Trigeminal Neuralgia, and sadly many of those facts are wrong. The problem is that people don't realise they are wrong and believe them. 

The book, 'Striking Back', written by Dr Kenneth F. Casey MD and George Wiegel, is considered to be an excellent point of reference for any facial pain sufferer, with correct information about conditions and treatments.

Dr Casey, who is on the medical advisory board of the Facial Pain Association, is concerned that many patients and caregivers believe they have a bleak forecast when they read some of the information online. He has very kindly sent us the following statement so that we could publish it on our blog.

Neuropathic facial pain has many different faces, of which trigeminal neuralgia is only one.  When we first hear the diagnosis of trigeminal neuralgia, most people go "What the heck is that?"   As people read about it, the material in print can be sometimes very scary and daunting.  Unfortunately as with most situations, most of the stories online and even those from people in support groups represent the patients for whom a cure has remained elusive.  However, if you read carefully between the lines, many of the patients and many of those that you never come in contact with had the diagnosis, received appropriate medical therapy, in some cases chose to go on to surgical therapy and are living pain-free.  We have over 9000 cases of which 75% of the patients have little or no pain following surgical or medical procedures.  Similar numbers exist in France with a physician Lyon; similar numbers exist in Italy and similar numbers in England.  For those who aren't familiar, there is a very active support group in Australia where surgical care is a little more difficult to come by.  They have a large group of people who with medications, and especially non-pharmaceutical/non-prescription medications such as high doses of vitamin B12 and the like, are living quite comfortably.

This is not to say that there are some patients who suffer terribly and for those patients, the members of the Medical Advisory Board of the Trigeminal Neuralgia Association have pledged a good deal of their time and careers towards developing additional procedures which may be of help.  At the same time, the trigeminal neuralgia foundation is currently undertaking groundbreaking research looking at the genetics of trigeminal neuralgia and how those genetics may affect the treatments that we can offer to patients who suffer from this particular form of neuropathic pain as well as other forms of neuropathic facial pain.  Starting in 2004 in France, a nonsurgical/noninvasive procedure known as transcranial magnetic cortical stimulation was utilized in patients with neurogenic facial pain of all types and specifically trigeminal neuralgia with significant relief obtained.  Owen was another researcher in the United States who found the same results a year later.  Recently the group in England showed the transcranial magnetic stimulation with a device that is a portable unit has shown that this transcranial magnetic stimulator works quite nicely for migraine pain and now have extended their work to neurogenic facial pain.

The message is that much work is being done.  

New non-drug related therapies are developed.  Different drugs, up to 18, have been tried with success ranging from 50 to 75%, and interest in finding the basic mechanism in dealing with it has never been higher. 

Kenneth F Casey M.D.

With thanks to Dr Casey for his input.

Striking Back is normally available to purchase from the Facial Pain Association or Trigeminal Neuralgia Association in the country where you live.
Those websites can be found in our 'useful links' tabs on the right hand side of this page.

Meet Athena - An Inspirational Young Lady

Every now and then in life, we meet people who amaze us. Sometimes we are in awe of their strength, courage and sheer determination.

One person we are lucky enough to know within the world of facial pain, is a very inspirational young lady called Karla Gudgeon,  or Athena, to her friends.

In her own words, here is Athena's story…..

Hi everyone,

My name is Karla Gudgeon, though my friends call me Athena. I am 22 and have had atypical and typical trigeminal neuralgia for nearly five years now. I also have recently been diagnosed with muscular pain on the left hand side (due to eating and using my jaw lopsided for so long) and allodynia, or hypersensitivity. The latter means that even a tear or a brush of wind on the affected area can trigger immense pain.

I am a student at Lancaster University in England - this means the world to me as, for the first two years after I gained the TN, I couldn't do much and had to defer my university place. Many of my hobbies were very active - archery, sword fighting and dancing to name a few, which obviously became more painful and less feasible to do when the pain level was high. 

After six months of moping around I discovered something I could do - card making. This hobby really took my mind off the pain and allowed me to do something worthwhile.

I work for a charity called the World Owl Trust in Cumbria, England as a volunteer and I started selling the cards to raise money for them. This quickly escalated into a bit of a cottage industry making not just cards, but notelets, bookmarks, magnets, coasters, pens and lots of other merchandise.

Over time this has raised thousands of pounds for the charity and made me feel that I wasn't letting trigeminal neuralgia ruin my life - in other words I could still do something worthwhile.

I used to do regular craft fairs where I had a stall selling all my merchandise and raising awareness. The vintage themed fairs were especially fun!

After two years I managed to get back to university and have thoroughly enjoyed it, although I must admit the pain has made things extremely difficult. My friends have been wonderful though, recording lectures I could not attend and helping me get around campus in my wheelchair when needed (I also have the medical condition Ehlers Danlos Type 3, or hypermobility syndrome.)They have been remarkably adaptable at coping when the pain level is so high it sends me unconscious, a distinctly irritating and debilitating survival mechanism which has caused a fair few separate injuries not to mention the loss of my driving license.

My TN is unusual in that it seemed to be caused by trauma, not the usual blood vessel being too near the nerve. When I was 18 I had an operation called a lower jaw osteotomy, which aimed to bring my lower jaw forward so my teeth could meet up and I could bite properly (I really struggled to eat before.) I was assured that no-one had ever regretted the operation and there was a one in a million chance of other side effects besides numbness to the lips. Unfortunately, I turned out to be that one in a million - well someone has to be I guess. Either way, possibly due to the Ehlers Danlos, the left hand side of my jaw failed to heal properly and to this day bleeds and bruises sporadically which, as you can guess, annoys the neuralgia no end. My neuralgia centres quite low down on my face, in the centre of my cheek and radiates out in a sort of star shaped pattern when the lightning bolt pains come. I'm sure many of you know exactly what I mean! The atypical pain is constant, 24/7 and usually takes the form of a very sharp ache. 

When I discovered the charity The Facial Pain Research Foundation I decided to combine my hobby and my problems. I will be making cards and other merchandise for the Foundation to sell and raise funds which will hopefully help us conquer this terrible condition.

Another TN sufferer, Jordan Riggs, has kindly allowed me to use some of her beautiful photographs for new designs and I have managed to receive permission from an excellent storm photographer to make lightning themed merchandise (very appropriate I'm sure you will agree!) I hope to sell some of these products online by the end of the summer via ebay and/or etsy - look out for them - all profits will go to the FPRF. 

On another positive note, against all odds, I have now finished my degree and have attained a first (despite my appalling attendance) which was a great shock! It hasn't sunk in yet. I am now going to have a year off to recover as the degree has left me pretty exhausted. I also may have to have some sort of operation to control the TN pain. I am going to see a doctor in London and I am hoping she may be able to give me some advice! I am a bit more hopeful than I have been anyway. I am also currently undergoing physio to help the muscular aspect and the allodynia. It's painful in the short term but will hopefully help in the long run. Then I will see what I am left with! I had a wonderful graduation last Friday.

I am also doing a sponsored abseil (a slightly strange graduation present from my father) for the Facial Pain Research Foundation to try and raise more money to find a cure. We have reached over £200 already! I hope the pain is low enough to do the abseil some time in August. It would have been Monday 21st July but I sort of sprained by wrist last week so it has been delayed a bit! If you wish to sponsor me you can contact the FPRF directly at their website  or donate direct to the FPRF with paypal via ebay.com here. You can also use my gofundme page gofundme page but be aware there are some fees involved (to the charity not you) on that, whereas there aren't on the other two options.

Together lets try and combat this terrible disease!!

Good luck to all of you and best wishes always. 

Athena

Congratulations Athena.

Hope you can enjoy a less painful year out of your studies.

Thank you so much for your fundraising efforts and for letting us share your story.

Fire, by Allison Ramirez

There is a fire burning inside of me

A fire that no one else can see

An ornery persistent smouldering burn

Takes away the peace for which I yearn

There is a fire burning inside of me

A fire no one else can see

Burns through me in every way

Burns through each and every day

This fire that burns inside of me

This fire that only I can see

It sets my nerves aflame

Leaves me moaning in pain

This fire that burns inside of me

This fire that only I can see

What chaos this burn does foment

It makes my life a living torment

This burning flame inside of me

This burning no one else can see

Turns my pain into passion

To beat this pain into submission

There is a fire inside of me

A fire that shines so you can see

This burning pain has had to fashion

A life of strength and compassion

This fire that burns inside of me

This fire that I hope you can see

From tears and pain like lashes

Like a phoenix I rise from the ashes

Clothed in the fire that burns inside of me

Burning so everyone can see

Is a person nurtured and forged in pain

Transformed into something new again

There is a fire burning inside of me

A fire that burns for all to see

A fire that burns away the pain

A fire that gives me my life again

A fire of strength and compassion

A fire for life, love, and passion

Allison Ramirez

03/09/2014

Trying To Stay Positive

I have had this condition for 13 years. I will not say I suffer from it.

They could have told me I had terminal cancer, and that would be far worse. This is not going to kill me.

I love life, my husband, my daughter, my beautiful grandchildren. I make the most of remissions and will not allow TN to take over my life. When it rages, I never think , why me, because I must have been picked out of the masses to make me a stronger person. I must admit that I do not fancy getting older, I am 62 now, and cannot imagine being this way forever, but as none of us know how long forever is, you might just as well get on with it.

I think it's really important to keep stress levels down, and problems follow me around but I find a positive attitude and never letting it take hold of my life make me feel more in control. 

Written by a very positive lady living with 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