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

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

Myths & false statements; The reality behind the “nickname” & statistics about Trigeminal neuralgia

We’re over and over again being told that trigeminal neuralgia is 'the suicide disease' accompanied by some very disturbing statistics to “prove” it. Horrifying postulations are scaring sufferers, their family and friends. We have over months now gone digging deep. Is this information, which is going viral, really true? Let’s make it perfectly clear right now: NO IT IS NOT!

We want to emphasize, as you will see when you read on, that we know:

• how painful Trigeminal Neuralgia is
• that it's normal for people to sometimes feel they cannot cope with this horrendous pain (If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately.)
• that the statistics which we keep seeing are totally false: 
• Do statistics on suicide due to trigeminal neuralgia exist? NO. FALSE.
• Do 10, 26 or 50% commit suicide? NO. FALSE.

You don’t have to take our word for it, in the following we will show you some of what we've found. We will show you how you’re being used. We will show you why it can’t go on.

First we need to take a quick look back in history:

Where does the name come from?

We do not know when the first person suffered from TN, but we do know the first time the pain was mentioned in literature. It got recognized as an illness as early as the 17th century with reports in literature as early as 2000 years ago.

It might have been a Professor of Medicine, Sir William Osler at Johns Hopkins University (US), who first linked suicide and TN to the public imagination. Osler was identifying the need for treatment and surgery, the former mortality rate of patients (many due to brain tumors) and the frightful intensity in which the attacks took place. Osler wrote about it repeatedly and it’s included in his medical books from 1912.

Osler wrote about this more than 100 years ago. Osler was talking about the past, the history of TN patients before his time and not as a scientific fact.  Osler has no mention of numbers or statistics in regards to suicide and TN.

So, is it so painful?

There is no shortage of documentation that trigeminal neuralgia is one of the most painful afflictions known to mankind. There is further no shortage of documentation that literature and medical personnel call it the suicide disease possibly due to the intensity of pain and that sufferers facing the highest pain might contemplate that they can’t go on.  

Does that mean I’m suicidal?

No. Living with a chronic affliction can be very tough on anyone regardless of situation, age, finances etc. When the pain is horrendous, we are mentally and physically at our worse and it is understandable to think “I can’t continue with this pain”.

When talking about suicide there is a difference between being passive suicidal and suicidal. Let’s look at some definitions: Suicidal: Purposeful self-injury with the intention to kill oneself (suicidal behavior), or, verbalizing plan, intent, and having the means to complete a suicidal act. Passive Suicidal Ideation (thoughts and statements): talking of thinking about “being dead” or killing or hurting yourself, but not really doing it. For example: “I wish I were dead. Sometimes I just want to kill myself, I feel so depressed.”

It is not uncommon to feel this way and according to any government information it is more common for women than for men to have these thoughts. Yes some have and some will choose to end their lives because of the pain. But this does not mean that you are suicidal, on the brink of committing suicide or will commit suicide because you have trigeminal neuralgia. 

If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately.

To the disturbing statistics that are being presented?

After reading thousands of pages, reports, searched extensively for more than 6 months online, contacting organizations, support groups and reading government statistics from various countries, we can with 99.9 % certainty say that there is no such thing as any reliable statistics over people taking suicide because of having trigeminal neuralgia. Statistics on suicide due to trigeminal neuralgia do not exist. Anyone that claims to know statistics showing the number of people that have committed suicide due to trigeminal neuralgia are either very misinformed or actually lying. 

Let’s take a closer look

"Trigeminal neuralgia is called the suicide disease. In fact, for those who live with TN for more than 3 years, about half commit suicide." FALSE

In 2009 an article was published in a small journal around how to resolve trigeminal neuralgia through the work of a chiropractor. While the rest of the article is full of references, this rather disturbing statement does NOT have any reference at all. Going though all the references provided we did not find any mention of it either. When we also know that NO statistics about trigeminal neuralgia and suicide exist we can say it is taken out of thin air. The statement is false.

"The literature confirming the suicidal tendencies of someone suffering through TN paroxysms is alarming.  Approximately half of those people who live with TN for more than three years commit suicide;" FALSE

This comes from an article published online by another author in late in 2011. The quote, half will commit suicide, is taken from the article from 2009. It is interesting that a so called journalist comes with this kind of statement without any background check. Further more citing from one source hardly merits saying that the literature (as in plural) is confirming anything. If we are kind we could say that the author might mean the passive suicidal ideation (thoughts and statements) when we are in a bad place. Is this information alarming then? No not at all, as we've written earlier (from many different sources we might add) it is not uncommon at all to have such thought and it does not mean that anyone actually will commit suicide. This statement is false.

So to 2 other postulates that have been around, 

• 50% of those having TN will commit suicide within two years
• Of the 1.7 million known sufferers of Trigeminal neuralgia 26% will commit suicide as a result of the severe pain.

These we have not found anywhere else than in videos and on posters, but we can speculate that they might have been inspired by the first article maybe, being changed on the way to fit a dramatic message to bring about “awareness” or maybe just made up.

But so that no one will wonder "Can there be any truth in this?” NO there can not and there is not any truth in it. We'll have a closer look at the actual numbers:

We can make it very easy: Every support group, organization etc working with TN sufferers should see large numbers of deaths due to suicide every year. After 1, 2, 3 or 5 years they see no such thing. Does every person having TN lose half their friends in 2-3 years? No we don’t. 

Actually most of us don’t know anyone that has actually committed suicide due to trigeminal neuralgia, we might have heard about 1 or 2, but not in large numbers no. We are not saying that no one has ended their life because of the pain, we are saying that fortunately it is not many. 

This actually just needs some good old common sense, but we can bring some facts into it too. First if that had been the case organizations, support groups, medical journals and governments would have reacted. It would also mean that the total number of suicides per year would be much higher. We've read statistics from many countries,  not just the UK and the US, but let’s have a look at the numbers in the UK as an example as they are rather in the middle when it comes to suicides per country.

In 2011, 6045 committed suicide in the UK. That gives a ratio of approximately 12 per 100,000. According to official numbers, the ratio of people being diagnosed with TN per year is 4 to 5 per 100,000. Would no one react if such a large number of suicides came from one cause? It becomes even clearer when we then know that of the 4-5 per 100,000, 80% are women (if we use 4 as the ratio, 80% is 3.2). If we then compare that to the actual women who committed suicide in 2011 it shows how impossible that claim is as the ratio for women are only 5.6 per 100,000. Would no one react in the UK if over half of the women committed suicide due to TN? Would it not be investigated, talked about and started some inquires? In many countries now war veterans are followed closely just because they have seen they are a risk group. Would they not do the same if it also applied to TN. Of course they would. 

The need for real facts – no more myths

To conclude, the name ”Suicide disease” does not describe any normal outcome of having the affliction.  It has partly a historic component but is more than anything a descriptive illustration of the intensity and debilitating pain that trigeminal neuralgia is.

The assumption that having trigeminal neuralgia will lead to suicide is a myth and has no basis in reality. Statistics don’t exist and the numbers presented are taken out of thin air.

When dealing with a condition like Trigeminal Neuralgia, it is imperative that people learn, get educated and diagnosed. We still have a long way to go before knowledge and awareness are wide-spread. 

All awareness is not good awareness

In the process of raising awareness, understanding and empathy, it’s extremely important that what is being shared is true. We cannot allow sensationalism and the need for attention get in the way. We need people to understand us, to listen to us, to believe us. If they doubt anything, they will doubt everything. Does anything go as long as it’s in the name of awareness? No everything does not and should not go. If someone can lie about something as serious as suicide, what else do they lie about. It will ruin our credibility. 

What can we do to stop the wrongful information and myth?

Stopping a myth and speculative statements is not easy. But we can try. We need everybody who is willing to bring about awareness for TN, to do so without sensationalist postulations and wrongful information. Trigeminal Neuralgia is bad enough; we do not need to make up figures to make it worse. We have more than enough facts that it is real, that it is very painful and that it is one of the worst. We don't have to make up figures along the way.

We can all start by saying NO to posts, posters, videos, articles etc that misuse our trust, hope and future. Say NO to those who just play a game for attention and money. Say NO to those who show no respect for those who is affected by suicide by their loved ones, the family and friends.

And more importantly, has anyone promoting these false statement thought about the affect: that their misuse of information might actually lead to someone taking their life because they see no hope?

Because this is not just about awareness, it’s about so much more; it’s about children, men and women, fellow human beings that are in a difficult, vulnerable position. This is not a game, it’s about living breathing people who suffer, it’s about their families, their friends.

It’s about you, it's about me, it's all of us! 

Please note: If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately. Do not wait. If you believe a loved one has suicidal thoughts, act immediately. Most countries have a suicide or health helpline. Do not hesitate to contact them.

This article is written by End Trigeminal Neuralgia 2014.

Sources:

• J M S Pearce “Trigeminal neuralgia (Fothergill‘s disease) in the 17th and 18th centuries“: http://jnnp.bmj.com/content/74/12/1688.full
• Suicide fact at a glance, National Center for Injury Prevention and Control:http://www.cdc.gov/violenceprevention/pdf/Suicide_DataSheet-a.pdf
• Suicide Statistics, Suicide.org: http://www.suicide.org/suicide-statistics.html
• Coping with suicidal thoughts, Familydoctor.org:http://familydoctor.org/familydoctor/en/diseases-conditions/depression/symptoms/coping-with-suicidal-thoughts.printerview.all.html
• Suicide Prevention Guideline, MedlinePlus:http://www.nlm.nih.gov/medlineplus/suicide.html
• Articles from Suicide at MedlinePlus:http://www.nlm.nih.gov/medlineplus/suicide.html#cat22http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_07.pdf
• Trigeminal neuralgia information from National health Services (NHS):http://www.nhs.uk/conditions/Trigeminal-neuralgia/Pages/Introduction.aspx
• Samaritans.org:http://www.samaritans.org/sites/default/files/kcfinder/files/research/Samaritans%20Suicide%20Statistics%20Report%202013.pdf
• Understanding and Helping the Suicidal Individual (American Association of Suicidology)http://www.suicidology.org/c/document_library/get_file?folderId=232&name=DLFE-30.pdf
• Suicide and Suicidal Thoughts(Mayo Foundation for Medical Education and Research)http://www.mayoclinic.org/diseases-conditions/suicide/basics/definition/CON-20033954?p=1

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