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 : More To It Than Pain

Trigeminal Neuralgia is a horrendous, painful condition. There can be no arguing about that. However, there is so much more to living with a condition like this than just the pain.

Dealing with any chronic illness can be soul destroying. Life can change so much. Relationships change, and sometimes sadly fall apart. People often can't continue to work, which can bring financial problems, which then bring on more worries.

So many aspects of life can become affected by chronic illness.

Emotionally, living with chronic pain can be overwhelming. People often say they feel sick and tired of feeling sick and tired. How true that saying is. Pain from a condition like Trigeminal Neuralgia can also be incredibly isolating. People often feel so very alone with their pain feeling that nobody understands, and often, that people who should care, don't. That in itself can bring about problems within relationships and lead to serious insecurities.

Then there's the fatigue. It's not just a tiredness which can be shaken off after a good night's rest. People living with pain can become tired, physically and mentally. It can be emotionally draining.

People can become frustrated and exasperated by what their illness does to them. They want to be able to lead the life they had before, but the pain just will not allow them to do so. They can feel despair and hopelessness when treatments don't work, and they can begin to lose hope that anything can help.

Panic, anxiety and fear are three emotions which nearly every chronic pain sufferer lives with. These emotions could stem from worrying about their job or how to pay bills. Could be worrying in case the pain will get in the way of a family celebration. Or it could simply be worrying about what the future holds. Sometimes, living in fear of pain can be as bad, and controlling, as the pain itself. Even people who have pain remissions probably worry every day in case their pain returns.

People can get impatient, snappy, and often  irritated about things which would never have mattered before. Possibly even over-sensitive. A joke, or a funny comment may not seem so funny to someone living with pain.

They can feel bitter and resentful at the changes in their lives. They may feel like a failure, feel worthless, feel they are a bad parent, spouse, son, daughter, sibling etc. They often feel that they just can't cope with this new situation they are in. Life can seem so unfair at times…….

Depression can easily take hold.

This drawing has been used with kind permission from the artist Michel EL Hachem
More of his art can be viewed on his Facebook Page or his Devian Art page

Probably everyone, whether living with pain or not, has experienced some of those emotions from time to time. But when living with chronic pain, these emotions can sometimes take over. It becomes an effort to do anything. It can become easier just to disappear into their own world, because the pain is too much. Too much to deal with and too much to explain.

All of those emotions are completely normal. But, we do have to try to change what we can so that those negative emotions are not allowed to drown us. We need to learn to ask for help and support. We need to be 100% truthful, especially with our doctors. They need to know how we are emotionally so they can try to treat us as a whole person, not just to try to treat the pain.

Nobody should ever be ashamed or embarrassed to admit how they are feeling. Admitting it is very often the way to move forward. There is help out there and there are people who understand. Everyone needs a good support network. But sadly, not everyone has that. Sometimes online support groups are a person's only real support. These are often run by people in the very same situation, so they do understand, and often, together, they can find a way to help one another.

If you are feeling like this, please reach out for support and help. Don't let depression eat away. The further you go down, the harder it can be to climb back up, so it is important to reach out for help sooner, rather than later.

Living with chronic pain can mean a lot of learning. 'Learn to accept' are three very easy words to say, but accepting this pain is far from easy. However, accepting doesn't mean that we have to like the change, but by accepting it, it can be a bit easier to find ways of coping with it. Learning to realise what we are capable of, so we don't set goals that are too high. Learning to realise when we need to rest. Learning to relax. Learning to make the best choices. Learning to make priorities. Learning what is right for ourselves. And possibly most importantly, learning to ask for help when we need it.

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.

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.

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 

THE TRIGEMINAL NERVE

© 2013 End Trigeminal Neuralgia

T is the TORTURE you put us through

R is RESENTFUL - that’s how I feel about you

I is the ISOLATION we often feel

G the GRUELING pain with which we deal

E - it’s EXCRUCIATING, that’s how it is
M - I’m so MEDICATED, my head’s in a tizz

I - Can I emphasise how ISOLATED we feel
N - is the NERVOUSNESS, even just eating a meal

A is for the AGONY, I go through every day
L for LONESOME, friends seem driven away

N for the NEEDLES, which appear from some place

E - they’re ELECTROCUTING, jagging into my face
R is for RELENTLESS, it just doesn’t give me a break
V has to be for VIOLENT, it just makes me ache

E - can only be for EXASPERATED

Got That Monday Feeling?

Monday

Today it is Monday

You wonder how I know

Ah, quite simple really

The computer told me so

© 2013 End Trigeminal Neuralgia

Where would I be without it

I can’t begin to guess

Because, to put it quite bluntly

My head is in a mess

The memory’s not so good now

And words just don’t come out

Everything I start to say

I quickly start to doubt

I think my brain stopped connecting

With my lips and fingers too

Spellcheck has made this readable

Or else you wouldn’t have clue!

My fingers do their own thing

And seem to dance around those keys

I type Rs instead of Ws

And mix my Gs with Bs

Is it because I’m getting older?

Or is it just my meds?

I think it’s the second option

They do this to our heads

E.S.

Treating Trigeminal Neuralgia Pain……… One Size Doesn't Fit All!

If only treating Trigeminal Neuralgia was as simple as going into a shop and buying a new tee shirt.....one size fits all. No need to try it on. It will fit. Says so on the label.

No, Trigeminal Neuralgia isn’t that simple. Doctors prescribe a drug at a certain dose, then increase it, then keep increasing it. Then the doctor will add another med into the mix. Then increase it, then keep increasing it. Still in pain? Ok, let’s try this med as well, or sometimes instead of. If it’s instead of, then you need to come off those others and start from scratch. 

It can go on and on and on. And people can often still be in pain. No matter how good the doctor is, no matter how knowledgeable the doctor is about TN, the same thing can happen. It’s not the doctor’s fault. It is Trigeminal Neuralgia’s fault. It is just so difficult to treat.

Many people go for a long time before a proper diagnosis, so then it is even worse. They have often already been through every over the counter med that you can buy in a pharmacy. Then GPs start trying stronger analgesics. They don’t help either, so eventually the the correct TN meds get prescribed. Those are normally epilepsy meds and some anti-depressants. But just because they are the correct meds, doesn’t mean they will work for everyone.

It is all very trial and error. Every med works differently for every patient. Some don’t work at all for some patients. And some cause a bad allergic reaction for some people. And what makes meds even more confusing for patients is that each drug has at least two different names.

But…...with patience and understanding doctors, the right drug or combination of drugs can sometimes be found. It might not always be perfect. There might still be some pain, but if it is better than before, then it is good.

And if meds really don’t help, then there are some surgeries and other treatments. Again.....there is no one size fits all. If only...

Even with home remedies, it is the same story. What helps one person, may not help another. Everyone is different. We have a file on our Facebook page with some self help tips which have given some people a bit of relief. Obviously, we can’t guarantee that any will work with any individual’s pain, but it may be worth taking a look. It’s HERE

Hopefully one day, they will come up with something which does suit everyone.