Making the Inivisible Visible

How many people do you know who have an invisible condition? If they don't tell you, how would you know? It's invisible.

So, could be many more than you realise.

Very many more.

We never know what goesver know what goes on behind a happy, smiling face.

People living with a physical or mental health problem which cannot be seen look fine. They look healthy. But in actual fact, they are living with something which may be quite horrendous. Something frightening. Something painful. Something which has a huge impact on their life. But....they look fine.

Their disability is already bad enough, without having to then deal with obstacles and prejudice.

The world needs to learn to see beyond disabilities. But it also needs to learn to see beyond the invisibility of some disabilities.

We never know what goes on behind closed doors. Likewise, we never know what goes on behind a happy, smiling face.

People with invisible disabilaties often get criticised when using disabled parking areas. "They shouldn't be using that space. Look at them. They look healthier than me!" But the truth is that they have been granted the disabled parking badge, because they have a disability. A doctor has signed off on it, and the person has paid for it. Looking fine doesn't mean being fine. They need that space close to where they are going for a reason. Do they need to have notes left on their cars saying they have no right to the space? Or strangers approaching them demanding they move their cars? No, but this is often the reality for the invisibly disabled. It is difficult enough dealing with the disability itself, without this added problem.

Another big issue is medication. Sometimes people are accused of being drug addicts. They are not. They do need to take regular medication to manage their condition. This is not a choice. Yet even pharmacists sometimes question the patient's prescription. 

Trigeminal Neuralgia and other facial pain conditions are just some of the many invisible conditions. People can be living with unbearable pain, but nothing can be seen. Not even by a doctor. 

We have created the following short video about Trigeminal Neuralgia, in the hope that it can possibly help bring some awareness about this extremely painful, but invisible, condition. 

Invisible illness week

This is invisible illness week (28th September - 4th October). End TN has joined with many other groups for other invisible conditions to try to get more awareness for the many conditions which cannot be seen.

We want to make the invisible visible.

We can make a difference, but we need your help.

Please share blog posts, videos and posters about invisible conditions, using the following hashtags when you post: #MyInvisibleFight #iiwk2015 #Invisibleillness along with the name of the condition which you or someone you know lives with.

Please help us make the invisible visible.

Invisible Conditions

Trigeminal Neuralgia is an invisible condition.

One of the most difficult aspects of living with Trigeminal Neuralgia is that it cannot be seen by people. "Can someone really be in so much pain, but have no visible signs?”

Many people need evidence, something visible, something tangible, before they can truly believe that someone could possibly be living with such cruel and savage pain. After all, if it were really that bad, doctors would have found a cure by now. Wouldn’t they?

Sadly, it is that bad, and even more sadly, there really isn’t a cure.

When there is no understanding, it affects the patient so much.

They feel like they are not believed. They feel guilty because of their inability to live life as they should. They feel like failures, as they cannot live up to their own or other people’s expectations. They feel that they need to hide their pain from others. They feel more and more isolated with their pain. They become depressed. And it becomes even more difficult to deal with the pain.

This is not just related to Trigeminal Neuralgia.

There are many invisible conditions.

Can we tell if they have an invisible condition?

Can we tell if they are ill?

Can we tell if they are depressed?

Can we tell if they are grieving?

Can we tell if they are being bullied?

Can we tell if they are struggling financially?

Can we tell anything about a person simply by looking at their face?

Of course, we can’t tell any of those things just by looking at someone's face.

But we, as humans, tend to judge too readily.....even those of us who believe ourselves to be non-judgmental. We all do it.

We notice the grumpy looking shop assistant and think they could do with smiling a bit more. We don’t wonder why they are grumpy. We don’t really give a thought to what they may be going through. We possibly don’t even care.

We see a car pulling into the disabled parking space and notice the driver getting out and walking unaided into the supermarket and presume he isn’t disabled at all and shouldn’t be parking there. We don’t give a thought that by the time he has finished his shopping, he possibly will be struggling to walk from the checkout back to his car. We just think he was wrong to park in that disabled space.

We hear so much on television and newspapers about people fraudulently claiming disability benefits, that when our young, healthy looking neighbour hasn’t been working for six months, we presume they are lazy and work-shy. Do we even entertain the thought at all, that this healthy looking young man, may actually be suffering greatly in some way? Depression? Anxiety? Living with invisible pain like Trigeminal Neuralgia?

Perhaps we all need to take another look at those faces.

Perhaps we need to imagine a large question mark on their foreheads to remind ourselves that much of what goes on in life is actually invisible.

Nobody likes to be judged.

Perhaps a little more compassion and empathy could make everyone’s lives a little better. 

Please help to bring awareness about Trigeminal Neuralgia and other Invisible Conditions by sharing our blog. Awareness can bring much needed understanding.

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.

Trigeminal Neuralgia : Explain The Pain

If you read our last blog post, you will have seen that a physical injury caused Shelley to suffer from permanent facial pain. When the bruising was there, everyone could see her pain. But when the bruises went away, Shelley had nothing to show for her pain, in other words, she had an invisible condition.

This is what TN sufferers are up against all the time. There is nothing to show for their pain. Many non-sufferers  can’t understand it because they can't see it. How can we have so much pain, but not a mark to  show for it? People sometimes doubt the pain. People think sufferers are possibly exaggerating how much pain they deal with, possibly looking for attention, or possibly even just lazy! 

People are sometimes judged on how much medication they use. They are even sometimes accused of being drug addicts.

Even doctors (the very people we rely on to help us) sometimes doubt their patients. Some doctors will not give adequate medication to help. When a desperate patient goes to Emergency because they are in so much pain, some doctors haven't even got a clue what Trigeminal Neuralgia is. They don't know what they can do to help, and often turn patients away suspecting they are drug seekers. 

Some pharmacists have also been known to turn people away without filling their prescription because they suspect the person is either a drug addict or selling their meds. Does a pharmacist have the right to question a legitimate prescription written by a legitimate doctor for a legitimate patient? Apparently, they seem to think they do.

There is a huge lack of understanding for many people suffering from not just Trigeminal Neuralgia, but many other forms of chronic pain too.

People often suffer in silence because the feel nobody listens or believes them.

This is why we NEED awareness about Trigeminal Neuralgia. We NEED people to believe us. We NEED people to at least try to understand.

So how can we do that? How can we explain the unexplainable?

How can we make people hear those two words Trigeminal Neuralgia and immediately understand what a person is dealing with?

For a start, we need to describe the pain, perhaps using graphic descriptions, so that people will understand. It can be done. After all, we don't have to break a leg to understand how painful a broken bone can be. 

The following are some quotes from some facial pain sufferers on how they describe their pain.

• I sometimes feel like there is a sharp knife between my teeth slicing through my gum and right up my cheek. My cheekbone feels like it should have a huge bruise on it. For a long time, I was forever checking in the mirror because I was sure there must be a bruise there. Sometimes my pain builds up and builds up until it feels like my face and head will burst from the pressure. It is as if my head is in a vice, which is being turned tighter and tighter.

• Feels like a hot ice pick stabbing my eye. It is like I am being tazed inside my mouth. I get sharp stabbing pains. Sometimes achy/bruised feeling and an itchy gum. 

• When it feels swollen and painful it feels like I have been hit with a baseball bat. And the electric stabs I refer to as "zingers" stabbing in my eye are continuous, like it is being stabbed, pulled out and stabbed again, etc. And I get a vice gripping pain behind my ear.

• Mine is the burn of a blowtorch on my cheek and around my eye, after it has been scraped raw by a straight razor. Then at times the knife stabbing above and below my eye, trying to gouge my eye out. Also suffer from the pain when eating. Just one bite of a salad that I have already taken the chill off, from putting it in the microwave, and shooting pain from my teeth through my head.

• Imagine you have an abscess under one tooth. Now imagine that you crack the one next to it, right down to the roots. And then some idiot hammers a nail through them both. Now multiply that by every tooth on that side of your jaw. And sometimes both upper and lower jaw, and round your eye socket. Occasionally on both sides. The pain comes and goes, in waves, lasting long hard minutes at a time, up to 100 or more times every day. For years. 

• On the TN side of my face, I am densely numb. My tongue, lips and teeth, the area around my eye, eyelids and eyeball are all numb to the touch, as is the area of my upper lip and out from it around and to my chin. These areas burn like a 3rd degree burn all the time. When I blink my eyelid feels pinched. My cheek and forehead aches deep inside. My teeth on top are numb but feel like they are being pushed on all the time. Reminds me of the way my teeth would hurt for a few days after my braces were tightened as a child. I get stabbing pains across my temple area and into my eye and forehead that feels like a knife being hammered in over and over several times a day, and constantly some days. Percocet helps that usually but only takes the edge off the pain. Makes it bearable. My head aches like it is being tightened in a vice from the base of my skull up and across my forehead. I can feel my heart beats as pain in my head and it feels hot. Sometimes my scalp feels like it is being peeled off exposing all the nerves to the air. Touching any place around my mouth feels like touching a raw nerve. I get stabbing pains from the top of my forehead into my area so bad I flinch and squeeze my eye shut. My eye waters all the time. This is my every day existence. This is my life.

• Right now my eyeball is burning and feels like I'm giving birth through it! Plus my jaw is freezing cold, which is often how I feel pain. Stabbing, burning, slicing and aching are all words I'm very familiar with. I also sometimes get a sensation of cramping and my face feels like it gets locked.

• My teeth are my main issue. A constant ache and throbbing with tremendous pressure and sharp stabbing pains. Trying to eat is agonizing.

• Sometimes it just plain hurts so bad you cannot tell what part is affected and what is not, it just goes on and on until it all hurts. I told my daughter last night, that it seemed like I had broken all the bones in my tongue.

• I have just been diagnosed with TN. Had a tooth removed last week cos I thought I had toothache. It's a constant throbbing, piercing, stabbing pain behind my eye, ear and jaw/neck.
• My face constantly feels some level of burning, sometimes the heat is on low, other times it is like a blow torch on high, welding my skin to the bone.  There is a vice grip-like pressure constantly loosening and tightening at random, but always present.  My scalp feels like needles are poking me, and it feels like the corner of my eye and the corner of my lip are being pulled back.  When the pain flares up, it feels like someone is jabbing an ice pick in my ear, and like there is an electrical storm in my teeth and gums, striking frequently yet randomly and the level of pain is blinding.  At my worst, I cannot speak, I cannot walk, I can hardly move at all.  The most painful episodes happen at random; you never know when it might strike.  If a slight breeze hits my face, or a cool air contacts my face; talking, chewing, brushing my teeth, leaning forward…or sometimes doing nothing at all, an intense pain ensues.  This pain is debilitating, at best, and at worst, it destroys my quality of life. 

'Broken Mind' by Magdalena Esmailzadeh

This painting has been used with kind permission from the artist
Magdalena Esmailzadeh

To see more of her work, please visit  http://medeasafir.deviantart.com

Sometimes people don’t explain their pain because they think non-sufferers will not understand anyway.....but they never will understand if we don’t try to explain it.

Sometimes people feel it takes too much energy and gives too much pain trying to talk about it to explain. If that’s the case, print off some information so you can easily pass it on. We have printable information files on our awareness page. 

• What is TN? Information poster

• Pain attack and Info cards

As sufferers, we are the only people who can really make people understand.

We need to make people listen to us.

A Face Behind The Pain

Facial pain can come in various forms and have various causes.

One cause of the pain can be injury to the facial nerves. Perhaps a fall or a car accident cause an injury which leaves lasting damage.

Shelley, a TN sufferer in Canada, was at a baseball game when she was accidentally hit on the face by the baseball.

The result was shocking.

With thanks to Shelley for allowing us to use her photos

As the days passed, the bruising came out. Shelley's face was black, blue and a multitude of other colours.

She was in extreme pain.

People saw her and knew she was in extreme pain. The bruising allowed people to understand.

Nobody would have looked at her and thought, "there's nothing wrong with her", "why doesn't she just take a couple of painkillers?", "what is she complaining about?" or, perhaps worst of all,  "she doesn't look sick!"

Everybody who saw Shelley's face could tell the pain she was in. People could comprehend the agony.


However, bruises fade…...


Shelley's face soon turned back to normal. But, sadly, the damage to the nerves was permanent. The bruises were gone, but the pain remained, possibly even became worse.

Constant aching, burning, agonising pain….along with the emotional issues which go hand in hand with chronic illness.

Shelley became a sufferer of an extremely painful, but invisible condition. A condition which can take over a person's life. A condition which non-sufferers, including many doctors, find extremely difficult to comprehend.

If only people could see our invisible bruises, surely they would understand the pain.

There is no cure (at the moment) for trigeminal neuralgia or similar facial nerve pain. When nerves are injured, they are often damaged beyond repair. We all live in the hope of a cure, but until such time, we desperately need people to understand.

We need hope, we need support, we need understanding.

Our job as sufferers, is to try to make people understand the pain we live with. We must explain it in a way to make people at least try to understand.

End TN made a video last year called "Faces Behind the Pain" in the hope that non-sufferers could 'see' our pain. We don't want to shock people, or scare them, but we do want and need people to understand how painful Trigeminal Neuralgia is, how demanding living with this constant pain is and how frustrating and depressing life can become.

You may also want to go here to our Facebook awareness page to read the individual stories from the people who took part in this video.

✦✧✦✧✦✧✦

How do you make people understand your pain? We'd really like to know. How do you describe it? Have you ever tried to 'draw' your pain to let family and friends, or even doctors, understand? Please let us know by either commenting here, or by contacting us through our Awareness Page or Support Group on Facebook.

It's Not Just About Trigeminal Neuralgia...

We said in a post at the beginning of our blog that when we say we want an end to TN, we actually mean we want an end to all facial and head pain. It is simply a lot easier to say End TN than to list all the various types of pain. Besides, End TN does have a bit of a ring to it.

There is actually a long list of conditions causing facial pain.....and a lot of confusion.

The confusion is not just amongst the patients involved, but the medical profession too.

A person could consult several doctors and be given a different diagnosis each time. The fortunate thing is that very often (but not always) the same medication is used to treat the pain, no matter what it is called. However, when it comes to surgical options, people really need a correct diagnosis. For example, surgery such as an MVD (micro-vascular decompression) will only help if there is a compression on the Trigeminal Nerve. Therefore it would only help if the patient actually has classic TN due to a compression. But some patients are told they have Trigeminal Neuralgia, when in fact, they don’t. They then chase after surgeries which would do no good at all. In fact, they could come out worse than before.

We, as patients, need a name for our pain. With a name, we at least feel as though a doctor believes us. We need that. We also need a name so that family, friends and colleagues can learn about the condition. It almost feels as though we can justify our pain if we have a name for it.

And doctors need to have enough knowledge about facial pain, to be able to give it the correct name. Some of the names given are very generic and sometimes sound as though the doctor is not really too sure what to call it.

The book “Striking Back” by George Weigel and Kenneth F. Casey MD, is known as the bible in the world of facial pain. In it, there is a long list of various types of facial pain. 

No wonder it is so confusing.

And since the publication of that book, there have been changes made to the names of some of the conditions.

If some of the medical profession are as confused as their patients about those names, can we do anything to help?

Possibly trying to find a neurologist or facial pain specialist who really is a specialist would help. But perhaps that is not always possible. If this is the case, try to find a doctor/dentist with whom you feel comfortable, someone who listens and doesn’t rush you. One who even admits they don’t know too much, but they are prepared to learn can turn out to be one of the best.

Keep a pain diary. Write everything that happens. Try to describe the pain accurately, because they need to make a diagnosis based on how you describe your pain. You may think that your cheek flushing when you are in pain is unimportant, but that fact could possibly be the key to a correct diagnosis.

One day, hopefully there will be more knowledge out there......and hopefully there will be enough knowledge to actually treat and manage all of the head and facial pain conditions successfully.

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

Treating Trigeminal Neuralgia

We have made some files containing information about some of the treatments available for Trigeminal Neuralgia. These are on our Facebook awareness page (www.facebook.com/endTrigeminalNeuralgia)

The links are below. If you have gone through any of the procedures, please feel free to leave a comment in the comment box on the appropriate file. Your experience may help someone else make a decision about their own options.


MVD (Microvascular Decompression)

Percutaneous Procedures (Balloon Compression, Radiofrequency Lesioning & Glycerol Injection)

Gamma Knife

Also, we have some info about meds here and a file with tips on living with TN here

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


 

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 ways....like 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.


So.....as 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.