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.

Meet Athena - An Inspirational Young Lady

Every now and then in life, we meet people who amaze us. Sometimes we are in awe of their strength, courage and sheer determination.

One person we are lucky enough to know within the world of facial pain, is a very inspirational young lady called Karla Gudgeon,  or Athena, to her friends.

In her own words, here is Athena's story…..

Hi everyone,

My name is Karla Gudgeon, though my friends call me Athena. I am 22 and have had atypical and typical trigeminal neuralgia for nearly five years now. I also have recently been diagnosed with muscular pain on the left hand side (due to eating and using my jaw lopsided for so long) and allodynia, or hypersensitivity. The latter means that even a tear or a brush of wind on the affected area can trigger immense pain.

I am a student at Lancaster University in England - this means the world to me as, for the first two years after I gained the TN, I couldn't do much and had to defer my university place. Many of my hobbies were very active - archery, sword fighting and dancing to name a few, which obviously became more painful and less feasible to do when the pain level was high. 

After six months of moping around I discovered something I could do - card making. This hobby really took my mind off the pain and allowed me to do something worthwhile.

I work for a charity called the World Owl Trust in Cumbria, England as a volunteer and I started selling the cards to raise money for them. This quickly escalated into a bit of a cottage industry making not just cards, but notelets, bookmarks, magnets, coasters, pens and lots of other merchandise.

Over time this has raised thousands of pounds for the charity and made me feel that I wasn't letting trigeminal neuralgia ruin my life - in other words I could still do something worthwhile.

I used to do regular craft fairs where I had a stall selling all my merchandise and raising awareness. The vintage themed fairs were especially fun!

After two years I managed to get back to university and have thoroughly enjoyed it, although I must admit the pain has made things extremely difficult. My friends have been wonderful though, recording lectures I could not attend and helping me get around campus in my wheelchair when needed (I also have the medical condition Ehlers Danlos Type 3, or hypermobility syndrome.)They have been remarkably adaptable at coping when the pain level is so high it sends me unconscious, a distinctly irritating and debilitating survival mechanism which has caused a fair few separate injuries not to mention the loss of my driving license.

My TN is unusual in that it seemed to be caused by trauma, not the usual blood vessel being too near the nerve. When I was 18 I had an operation called a lower jaw osteotomy, which aimed to bring my lower jaw forward so my teeth could meet up and I could bite properly (I really struggled to eat before.) I was assured that no-one had ever regretted the operation and there was a one in a million chance of other side effects besides numbness to the lips. Unfortunately, I turned out to be that one in a million - well someone has to be I guess. Either way, possibly due to the Ehlers Danlos, the left hand side of my jaw failed to heal properly and to this day bleeds and bruises sporadically which, as you can guess, annoys the neuralgia no end. My neuralgia centres quite low down on my face, in the centre of my cheek and radiates out in a sort of star shaped pattern when the lightning bolt pains come. I'm sure many of you know exactly what I mean! The atypical pain is constant, 24/7 and usually takes the form of a very sharp ache. 

When I discovered the charity The Facial Pain Research Foundation I decided to combine my hobby and my problems. I will be making cards and other merchandise for the Foundation to sell and raise funds which will hopefully help us conquer this terrible condition.

Another TN sufferer, Jordan Riggs, has kindly allowed me to use some of her beautiful photographs for new designs and I have managed to receive permission from an excellent storm photographer to make lightning themed merchandise (very appropriate I'm sure you will agree!) I hope to sell some of these products online by the end of the summer via ebay and/or etsy - look out for them - all profits will go to the FPRF. 

On another positive note, against all odds, I have now finished my degree and have attained a first (despite my appalling attendance) which was a great shock! It hasn't sunk in yet. I am now going to have a year off to recover as the degree has left me pretty exhausted. I also may have to have some sort of operation to control the TN pain. I am going to see a doctor in London and I am hoping she may be able to give me some advice! I am a bit more hopeful than I have been anyway. I am also currently undergoing physio to help the muscular aspect and the allodynia. It's painful in the short term but will hopefully help in the long run. Then I will see what I am left with! I had a wonderful graduation last Friday.

I am also doing a sponsored abseil (a slightly strange graduation present from my father) for the Facial Pain Research Foundation to try and raise more money to find a cure. We have reached over £200 already! I hope the pain is low enough to do the abseil some time in August. It would have been Monday 21st July but I sort of sprained by wrist last week so it has been delayed a bit! If you wish to sponsor me you can contact the FPRF directly at their website  or donate direct to the FPRF with paypal via ebay.com here. You can also use my gofundme page gofundme page but be aware there are some fees involved (to the charity not you) on that, whereas there aren't on the other two options.

Together lets try and combat this terrible disease!!

Good luck to all of you and best wishes always. 

Athena

Congratulations Athena.

Hope you can enjoy a less painful year out of your studies.

Thank you so much for your fundraising efforts and for letting us share your story.

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

A Christmas Wish

Facial Pain Research Foundation

When living with Trigeminal Neuralgia or any other facial pain, one thing is extra important - hope. We all need hope for a better future.

The Facial Pain Research Foundation is trying to give people just that. They believe there will be a cure by at least 2020.

Michael Pasternak PhD, one of the Foundation's founding trustees, has answered a few questions for us.

We hope that his answers can possibly give hope to people living with facial pain and their families.



1.  End Trigeminal Neuralgia is global....and we know that everyone worldwide needs hope of a cure for TN. Can you tell us a little bit about the Foundation - are you just based in the USA, or are there people working in other countries too?

Finding a cure for trigeminal neuralgia, the most painful disorder known to humans, is the mission of The Facial Pain Research Foundation. Its founders aim to reach the goal within the decade of 2011-2020, while also developing therapies to permanently stop other nerve-generated facial pains and diseases. The Foundation is the brainchild of seven professionals across the United States, who are creating the first international force of scientists to work together to cure an ancient, but poorly understood disease. Finding a cure will restore pain-free life to millions of men, women and children around the world, who are stricken by repeated lightning-like shocks of facial pain, the hallmark of trigeminal neuralgia. A simple cool breeze across the face, a slight touch or even a kiss on the cheek can trigger shooting pains that drive victims to their knees and may last a lifetime.

To conquer the problem within ten years, the Foundation has formed an international consortium of eminent scientists, starting at the University of Florida’s McKnight Brain Institute and the University of California San Francisco, to conduct studies aimed at translation from laboratory to patient. Participating scientists will report outcomes at Foundation conferences and public forums. In the process, they will expand public awareness of what has been a global silent epidemic of facial pain. Currently research projects across the globe involving neuroscientists and genetic specialists from several states across the United States to England and as far away as Israel as we stretch the horizon in search for a cure.

2.  Do you really think that there could be a cure for TN by 2020?

Yes! The Foundation’s Scientists are at work in laboratories as I answer your question. They tell us this 2020 goal is real and achievable.  Before we established this Foundation, no one had ever asked these eminent neuroscientists to apply their skills and understandings to finding cures for TN and related neuropathic pain disorders. In March, 2013 we brought all of the Foundation’s scientists together for the first time in Naples, Florida to discuss their research and their progress.  We continually receive reports on their work. We will continue to seek additional scientists to assist us in our efforts and our goal to achieve a cure within 10 years remains strong!

3.  We understand that you are working on 4 projects, can you give us a brief idea what each one is?

• San Francisco study

Dr. Basbaum: Nationally known neurobiologist Allan Basbaum, Ph.D., at the University of California San Francisco is focusing on one known cause: the loss of chemical mediators that normally inhibit the transmission of pain signals to the brain. Basbaum is evaluating a unique approach, involving nerve cell transplants, which ultimately may be helpful in treating the persistent electrical shock-like facial pain of trigeminal neuralgia and similar nerve-related facial pain disorders. He explains, “These neuropathic facial pain conditions are often treated with medications designed to suppress the hyperactivity that occurs. Many of these drugs mimic the inhibitory neurotransmitters that normally keep nerves calm. The problem is that although these drugs provide symptomatic relief, they also affect the entire brain and can cause unpleasant side effects from drowsiness to memory loss.” Basbaum, who has devoted his entire career to pain research, aims to find a way to restore that circuitry. His UCSF team includes scientists who have genetically engineered mice so that it is possible to monitor the integration of the transplanted cells, as well as developmental neurobiologists who study how inhibitory neurons grow after transplantation and how to make them thrive.
  

• Florida studies :

Dr. Notterpek: One known culprit behind the piercing, repetitive pain of trigeminal neuralgia is damage to myelin, the waxy coating that insulates nerve fibers against electrical signals that are transmitted from cell to cell. Loss of myelin on the trigeminal nerve causes a short circuit that result in facial pain. To define how myelin defects cause havoc in the nervous system, University of Florida Neuroscience Professor Lucia Notterpek, Ph.D., is leading studies of myelin biology and disease. She is addressing basic questions about healthy myelin, which is vital to the normal rapid movement of electrical impulses through the nerve pathways, and about various nerve disorders, including hereditary demyelinating neuropathies, which result from myelin defects or deficiency. She seeks information that will aid the development of ways to repair or rebuild myelin in order to cure trigeminal neuralgia and other demyelinating diseases.

Dr. Ahn: The clinical picture of persistent pain strongly suggests that the chronic pain of TN can cause long-lasting abnormalities within the brain. Better insight into this brain abnormality could provide important and new insights into our understanding of TN, and could enhance our ability to improve upon existing therapies or design new, more effective approaches. Modern imaging techniques have produced remarkable insights into a range of neurological conditions. However, only a few preliminary studies have been dedicated to understanding the brain abnormalities associated with TN. And there are no studies that have explored the possibility that the pain of TN leads to long-term changes in the brain that perpetuate chronic TN pain. This grant (from The Facial Pain Research Foundation) provides support for the initial stages of one such project, whose goal is to draw a neural signature, or “map” of TN pain. If successful, these experiments will lead to new fundamental insights into the neurobiology of TN. It is anticipated that this new knowledge will enhance our ability to identify novel targets for effective TN therapy.” 

• International Research Project: Unlocking DNA to Find a Cure

Imagine unlocking the mysteries of DNA that are so extraordinary and then applying those learning’s to finding a cure for the worst pain known to humankind. Our DNA functions as the building blocks, or blue prints of life.  We all carry these building blocks within every cell of our body.   For many years patients have asked themselves and their doctors “why me? Why did I get this awful painful condition called trigeminal neuralgia?...Why do I suffer so and others don’t understand...why do I feel like I could simply die?” 
The Facial Pain Research Foundation’s first international research project to find a cure is underway and it seeks to discover the answers to “Why Me?” and lead scientists to developing a cure. of London England, the Foundation’s International Research Coordinator, asked Dr. Marshall Devor in March 2012 to prepare a research project proposal to seek a cure for TN and present it to the Foundation.   The three Principal Investigators of the project are Dr. Marshall Devor, Dr. Kim Burchiel and Dr. Ze’ve Seltzer.

The team of international scientists is led by Principal Investigator pain research pioneer Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel.  The award winning scientist has had an outstanding career in pain research. He has contributed an outstanding body of research, authoring several hundred papers over 40 years and has been been described as one of those “who view excellence as a way of life and the fulfillment of human potential as essential to creating a better world for future generations.”

Dr. Kim Burchiel is the Chairman of the Department of Neurological Surgery at the Oregon Health & Science University in Portland, Oregon. Burchiel has been a long time member of the TNA Medical Advisory Committee and performed hundreds of TN surgeries. A successful researcher, he has been a national leader in the treatment of orofacial pains including TN. The first step of the research project, phenotyping and DNA collection, will be the responsibility of Professor Burchiel at OHSU. He is a leading authority in the phenotyping of facial pain conditions and author of the most widely accepted TN classification scheme. Dr. Burchiel has said: “this research project could be the most important pain study ever attempted” and he is very hopeful that it will lead to a cure for TN and related neuropathic pain.  

Dr. Ze’ev Seltzer, Professor of Genetics at The University of Toronto, Canada is also an award winning scientist. He has dedicated his career to the study of pain. Seltzer says “ I am looking forward to be a Co-Principal Investigator in the  TN project, bringing 35 years of studying the neurobiology of pain.” Having had many competitive grants and honors he has an outstanding track record of productivity in the field of pain and pain genetics. Seltzer also says “The goal to find a cure is achievable...our best salvation may come from genetics”.

4.  All sounds good for classic TN, what about Atypical pain?  

The Foundation has not limited its scientific efforts to only classical TN.  Our Foundation’s Charter clearly states that the goal of the Foundation is to cure trigeminal neuralgia and related neuropathic pain.  Our Research Director, Dr. Doug Anderson, and our scientists have discussed this matter thoroughly.  They believe that when they can “fix” trigeminal neuralgia through the various approaches they are researching it would lead them to cures for what has historically been called atypical TN and related neuropathic pain conditions.  Dr. Basbaum openly states that when he can fix the trigeminal nerve he will also be able to apply that science to fixing atypical pain and other nerve disorders, including phantom nerve pain and nerves that have been damaged by chemotherapy and additional nerve related conditions.  Dr. Seltzer has told us that when we find the genes that are responsible for classical TN it is only the beginning.  The scientific processes being followed should lead to finding cures for both related conditions and other diseases.  Our International Consortium of Scientists is primarily focused on TN and related conditions, but they also understand the potential of what they are doing for other human disorders and diseases.  If damaged myelin or brain pathways are responsible for atypical pain conditions, the research will be applied to creating cures. That is our Foundation’s goal.  In addition, it is important to note that all of our research projects have been started with the understanding that they lead to cures before the end of the year 2020.  The Foundation scientists are committed to moving forward with blazing speed.

5.  We understand how much the Foundation really needs financial help. As charitable donations have different tax benefits from country to country, is there a way for people to donate from countries outside USA? The tax deductible rules apply within each country, normally only for charities within that country. So it could prove more difficult for people to donate from overseas.

Each country has unique requirements regarding tax deductions for charitable donations and some offer no deductions.  We would certainly assist international donors in any way possible to receive deductions for their contributions. Since we have a center in London that will soon be collecting DNA for our genetics research we could, if requested, attempt to create an opportunity for those donations to remain in the UK for our research efforts in London.  We presently have a Foundation Volunteer selling greeting cards in England to raise funds for our Foundation. 

An example of International tax differences is that Canadians can donate to Canadian government approved (prescribed) Medical Research Universities in the U.S.A. where our Foundation’s research is occurring and receive tax deductions for their donations. 

The Foundation is very interested in working with people from any country to assist them in creating opportunities for them to assist us with our international research programs and receive the maximum tax benefits available. This is the very first chance people have to contribute to a Research Foundation to end TN and related pain.  People world-wide are making donations.  Hopefully more will do so regardless of whether they get a tax deduction or not.  

The Foundation has been created as a result of the Medical and Governmental communities not organizing to find cures for neuropathic pain. For many years some treatments and medications worked for some patients and not for others.  The Foundation is dedicated to finding cures...fix the problems. Each of our research projects have received funding from The Foundation. The money has been donated by people for the purpose of finding cures.  We presently receive donations from people throughout the world, some through the use of credit cards on our World Famous WebNewsPaper (“The Afternoon Edition”) at www.facingfacialpain.org...others send checks to our Gainesville, Florida office (The Facial Pain Research Foundation, 2653 SW 87th Drive, Suite A, Gainesville, Fl 32608-9313.) We provide every donor with a thank you letter that serves as a contribution receipt for their donations. Internationally, the letters are sent by email to save on postage costs. 

6.  Finally, very often people donate to charities, to discover that so much money is paid to high salaried admin staff. It puts people off. Can you tell us if it's like that with the Foundation?  

The Facial Pain Research Foundation is a totally Volunteer Foundation...Over 98% of the money collected goes directly to our Research Projects.  The Foundation has no salaried administrative staff.  We have no endowments or property serviced.  Our total monthly costs for rent and telephone are $230.33.  This cost is a requirement that a Foundation in Florida must have - a permanent address and telephone - so we use a family member’s office address and telephone with calls forwarded to our Volunteer Communications Director, Pam Unverzart.  Our largest costs are related to credit card and PayPal fees. (generally about 2%) Even our postage stamps and envelopes are donated.  Again, when someone donates funds to our non-profit 501 C 3 organization approximately 98% goes directly to our research programs.  

The Foundation has a monthly mini-newsletter to keep people up to date. If people wish to be added to the distribution list, please contact Pam at Pam@facingfacialpain.org or drop an email to info@facingfacialpain.org.

We would like to thank Michael for taking the time to answer our questions and we wish the Foundation luck with their hopes of bringing a better future to people living with facial pain.


We welcome any comments or questions. Please write in the comment box below, or contact us at our awareness page End Trigeminal Neuralgia