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.

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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 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 

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.