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.

New Patients and Awareness Advocacy

We always try to encourage raising awareness about Trigeminal Neuralgia and other Facial pain conditions. However, raising awareness is not for everyone. Living with a chronic illness is a huge deal, and often, just living with the condition is more than enough to cope with, without feeling any pressure to be involved in awareness. People have to do what is right for them.
The following article by Jordan Riggs may help people to understand that it is ok to just sit back and take care of yourself. You must always put yourself before awareness.

A beautiful painting of a pheasant by Jordan

Jordan is an artist and writer in southcentral Alaska.  She currently lives with Trigeminal Neuralgia, Gastroparesis and Chronic Intestinal Pseudo-Obstruction after sustaining nerve damage from nearly a decade of thyroid cancer treatment.

Opinion: New Patients and Awareness Advocacy

by Jordan Riggs

You leave the doctor’s office, stunned at the news your physician just shared.  The blood tests, the imaging scans, the doctor’s examinations: all have come to the same conclusion.  The official diagnosis is the one disease that you were terrified of having.

The next few weeks are a blur of learning how to properly manage the monster that you’re suddenly having to share your body with.  New prescriptions with awkward-sounding names start popping up in your medicine cabinet.  Appointments to referred specialists are scheduled, then re-scheduled to accommodate the doctor’s choice to extend their vacation.  You struggle with how best to notify your employer about the new diagnosis, as well as the long-term prognosis: should you warn them about possible deterioration in your job performance due to the disease’s symptoms and medication side effects?  Or ‘play it by ear’ and hope that they won’t notice?  Some family members are supportive, while others question the legitimacy of the diagnosis and suggest that you get a second (or third) opinion.  Friendships are tested as socializing abruptly transitions from fun to burdensome.  When the disease’s symptoms (or the medication side effects) blatantly affect you, oblivious strangers chime in about the latest fad diet they’re convinced will cure you.

The weeks turn into months.  Some longtime friendships have gradually faded away as other relationships are revived and strengthened.  Family members at home have adjusted as well as can be expected, and other relatives suddenly take you very seriously after they looked up your diagnosis online.  Work is challenging, but you’re regaining your old rhythm despite fatigue from the medication.  People start using words like “tough” and “brave” to compliment you, but you don’t feel that way.  You simply feel like you’re surviving, nothing more.

You make the decision to reach out and connect with people who know exactly what you’re going through.  You discover that a support group meets at the local hospital, or you find a group on Facebook with people from all over the world who have your same diagnosis.

Fundraisers.  Colored ribbons.  Tatoos.  Blogs.  5K runs.  Pleas from other patients to write lawmakers to demand more research for the disease.  Reminders of important upcoming dates to spread, spread, spread the awareness.  Organizations, associations, celebrity spokespersons.  It’s all so inspiring and overwhelming at the same time.  Navigating this new chapter on your life has already consumed so much of your time, and now you feel under pressure to become a walking, talking billboard informing the world about your illness.

In the age of social media, the peer pressure for patients to become advocates for their respective disease is intense.  Are you the type who relishes the opportunity to color your hair the same hue as your illness’ ribbon color, using your appearance as a catalyst to educate the public about your disease?  Awesome!  But what if you’re the type who prefers to only occasionally discuss your health issue, and prefer to blend in with healthy people and live normally?  That’s okay too!

As patients, successfully managing our illness is to be true to ourselves and live with our disease in a way that benefits us the most.  There is no “right” or “wrong” perspective regarding your very personal journey.  An unspoken obligation seems to exist that pressures new patients to jump on the awareness bandwagon.  However you choose to engage (or not engage) in these activities is up to you, and your choice doesn’t make you a “good” or “bad” patient within the community.  When living with a life-altering illness, self-awareness trumps public awareness.  Your only "real" job as a patient is to take care of yourself.  Expecations placed on you are just that...expectations.

So whether you’re making art for an upcoming fundraiser - or are trying to come up with clever ways to avoid talking about your disease - keep it up.  Stay true to yourself.

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.

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.

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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

It's A Pain In The Face!

I wake up in the morning, and straight away I feel it and I just think...here we go again, another day with this pain.

From that moment, until I next fall asleep, it’s there.

I am on high doses of meds to try to keep the worst at bay. They help, though some days it doesn’t seem like it. My pain is there every day. Every single day.

Sometimes it’s there in a niggling kind of way. Burning or a bit achy or tingling. There....but I can try to forget. Not completely forget it. I can never do that. But I can live round about it, just being careful about what I eat and drink, careful about what I do so I don’t antagonize it.

But sometimes it’s there in a way I can’t forget it’s there. Feels like a knife is ripping up between my teeth, my teeth being pulled and twisted. My eye hurts....sometimes just aching, or pain in the corner, other times as though there are knitting needles being stabbed in it. My forehead and cheekbone feel so painful as if I have just banged against something. As if there is a huge bruise and I am pressing on it. Sometimes my head feels like it is being squashed. And every now and then, the pains will just surge. Sometimes the pain just suddenly comes out of nowhere, for no reason. 

Sometimes it feels too painful to breathe. Breathe in through my nose, and it's as though the air shoots right up my nose and slices through my head. Breathe in through my mouth, and the air hits my teeth.

I can get pain in my teeth, as though I have just put a live electric cable into my mouth. It’s as though it just sizzles all the way down every tooth to my chin, then along my jaw.  Thankfully, the Tegretol has controlled that type of pain to a degree.

I have no choice, but live with it. I try to make the best of a bad situation, but some days are definitely harder to deal with than others.

Smiling hurts....but I do it. Laughing hurts....but I do it. I try to enjoy doing what I can, rather than cry about what I can’t. So I can’t eat ice-cream or spare ribs, but I’m not going to cry about those things. I know there are things I can eat. And on the really bad days, I just thank my lucky stars that I have a caring husband who makes me something to eat, and says, ‘You need to eat....I know it hurts, but you really need to eat.‘

Every day of my life revolves around my pain. I have other pain too, not just TN. Although there is nothing just about TN.

But what can I do?

Sit and cry all day, or try to make the best of a bad job?

I try to choose the second option.

E.Sirrell

Would you like your story on the End TN blog?

If you live with TN or another form of facial pain, or if you are friend, relative or carer of someone with TN and you would be interested in sharing your story with others, please send us a private message on our Facebook page www.facebook.com/endTrigeminalNeuralgia 

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


 

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?

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.

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. Emmm.....no. 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.

TNA UK 
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.  

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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.

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.