Awareness Day

Awareness is so important

Without awareness nobody would know about so many dreadful illnesses and conditions. We wouldn’t know about troubles throughout the world, about starving nations, about war torn countries. Trigeminal Neuralgia is only one of many things which needs awareness and help.

Living with chronic facial pain like Trigeminal Neuralgia can be extremely isolating, exhausting and even frightening. There is so much more to living with the pain, than simply living with the pain. More needs to be done to help people. More understanding from doctors. More research needs to be carried out.

With awareness, hopefully we can achieve that.

We hope that one day, people will hear the words “Trigeminal Neuralgia” and immediately understand how much pain this condition causes. We, the sufferers, are really the only people capable of doing this.....and it can be done. By talking about our pain, by writing about it, by trying to get as much exposure as possible, we can help people understand.

If we say nothing, people will never understand.

If we say it is a migraine or earache because that is easier than explaining, people will never understand.

If we just give it that nickname of the Suicide Disease, people will still never understand.

The only way we can expect people to at least try to understand is for us to name it and explain it.

Awareness days are an excellent way to get more exposure, but in actual fact one day in the year is only a very small part of the awareness work which goes on.

We all need to work constantly, throughout the year to get more understanding. We need to work hand in hand with the official TN organizations. We need to ensure that any information we pass on is correct, easy to understand and it needs to reach the eyes and ears of not only TN sufferers, but their families, friends, colleagues and even medical personnel if at all possible.

With the internet, we have knowledge at our fingertips. Knowledge is power. The internet has made the world much smaller. Social media can play a huge role in awareness work. The ‘share’ button must have been invented for people trying to raise awareness.

People have often asked, ‘Why bother to share posts about TN? Does it really do any good?’ The answer is yes. To another person suffering, our posts help them feel less alone with their pain. The knowledge that another person knows exactly how they feel helps. Our posts also give them a way of explaining their pain. So if one more person understands this horrible condition, then it is definitely worth sharing the posts. However, we understand that not everyone feels able to share posts about their condition, and that is fine too.

Awareness posts about Trigeminal Neuralgia help people, but more than that, they also bring hope. We know there are no magic answers, but when we have hope, life is so much better.

For more information about the research being done, please take a look at the Facial Pain Research Foundation's website. http://www.facingfacialpain.org/

Trigeminal Neuralgia can be difficult to explain. We have made posters and videos which can help do this. 

• Faces Behind The Pain video
• Trigeminal Neuralgia Challenge Video
• What is Trigeminal Neuralgia (in various languages)
• Pain Attack and info cards (in various languages)

For more information and awareness material which can be shared, please visit the End TN page on Facebook. www.facebook.com/endTrigeminalNeuralgia 

Dr Kenneth Casey MD

There are so many facts on the internet about Trigeminal Neuralgia, and sadly many of those facts are wrong. The problem is that people don't realise they are wrong and believe them. 

The book, 'Striking Back', written by Dr Kenneth F. Casey MD and George Wiegel, is considered to be an excellent point of reference for any facial pain sufferer, with correct information about conditions and treatments.

Dr Casey, who is on the medical advisory board of the Facial Pain Association, is concerned that many patients and caregivers believe they have a bleak forecast when they read some of the information online. He has very kindly sent us the following statement so that we could publish it on our blog.

Neuropathic facial pain has many different faces, of which trigeminal neuralgia is only one.  When we first hear the diagnosis of trigeminal neuralgia, most people go "What the heck is that?"   As people read about it, the material in print can be sometimes very scary and daunting.  Unfortunately as with most situations, most of the stories online and even those from people in support groups represent the patients for whom a cure has remained elusive.  However, if you read carefully between the lines, many of the patients and many of those that you never come in contact with had the diagnosis, received appropriate medical therapy, in some cases chose to go on to surgical therapy and are living pain-free.  We have over 9000 cases of which 75% of the patients have little or no pain following surgical or medical procedures.  Similar numbers exist in France with a physician Lyon; similar numbers exist in Italy and similar numbers in England.  For those who aren't familiar, there is a very active support group in Australia where surgical care is a little more difficult to come by.  They have a large group of people who with medications, and especially non-pharmaceutical/non-prescription medications such as high doses of vitamin B12 and the like, are living quite comfortably.

This is not to say that there are some patients who suffer terribly and for those patients, the members of the Medical Advisory Board of the Trigeminal Neuralgia Association have pledged a good deal of their time and careers towards developing additional procedures which may be of help.  At the same time, the trigeminal neuralgia foundation is currently undertaking groundbreaking research looking at the genetics of trigeminal neuralgia and how those genetics may affect the treatments that we can offer to patients who suffer from this particular form of neuropathic pain as well as other forms of neuropathic facial pain.  Starting in 2004 in France, a nonsurgical/noninvasive procedure known as transcranial magnetic cortical stimulation was utilized in patients with neurogenic facial pain of all types and specifically trigeminal neuralgia with significant relief obtained.  Owen was another researcher in the United States who found the same results a year later.  Recently the group in England showed the transcranial magnetic stimulation with a device that is a portable unit has shown that this transcranial magnetic stimulator works quite nicely for migraine pain and now have extended their work to neurogenic facial pain.

The message is that much work is being done.  

New non-drug related therapies are developed.  Different drugs, up to 18, have been tried with success ranging from 50 to 75%, and interest in finding the basic mechanism in dealing with it has never been higher. 

Kenneth F Casey M.D.

With thanks to Dr Casey for his input.

Striking Back is normally available to purchase from the Facial Pain Association or Trigeminal Neuralgia Association in the country where you live.
Those websites can be found in our 'useful links' tabs on the right hand side of this page.

Trigeminal Neuralgia : 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.

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.

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

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?

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.  

                                             ****
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.