A Christmas Wish

Puzzle

Gilly Cannon writes a blog called Brainstorm. She started writing her blog when her husband developed Trigeminal Neuralgia in 2011. As we have said before, Trigeminal Neuralgia affects the whole family, not just the person who actually has the condition. The following is a post which she made in September, 2012 and it ties in perfectly with the puzzle picture which we put out on our Awareness Page today.

The Jigsaw Puzzle Of Life

There is nothing like sudden or unpredictable illness to throw you off kilter. In the tightly packed, fast paced lives we lead, there is little room for a throat infection, a virus, a broken limb or something more sinister. And yet when it happens, with no choice but to accommodate it, you make room for that illness in your lives and adapt.

It could be your own illness, your spouse's, your child's or your parent's. Each affects your daily and weekly plans  differently. But each impacts and squeezes your carefully arranged puzzle piece life where everything just about  fits together perfectly (on a good day!). Whether it is staying home from work to nurse your child through an ear infection,adding in a visit to your aging parent every day in a nursing home or accompanying your spouse to endless doctor's visits and treatments. Somehow your bit piece life expands to allow these extra parts to fit in.

What happens when the jigsaw pieces have been thrown in the air and some land upside down or on the floor ?

What happens when a piece is broken or lost forever?

How do you begin to piece the picture back together? Repair the broken pieces, substitute the missing ones? 

How do you live with the uncertainty that you may never complete the puzzle as you know it again and rearrange the puzzle into a new picture?

How do you find the energy to pick up the pieces, examine them again and start over?

Trigeminal neuralgia forced us to rearrange our puzzle. As I described it back in  November last year in Brainstorming-Fri Nov 4 2011)

Nerve pain is a challenging opponent. Trigeminal nerve pain has an armory of weapons and is difficult to fight. it has unpredictability,suprise,increasing intensity and immunity to medication on its side. It shows no mercy,bombards for hours with electric, stabbing like pains and demands attention day and night. it tortures its victim for months and his loved ones who feel helpless and lacking any weapons with which to fight.

A year on thanks to the success of brain surgery, Jonny has NO electric pain but we recognise that we will always live with the shadow of some head and face aches that come and go unannounced. They are well controlled with medication, but anticipation and unpredictability inevitable alters our life puzzle and sometimes leaves us picking the pieces off the floor and trying to make them fit back in.

As the caregiver my life jolts back and forth like driving a car with the brakes on and my response has evolved in the following ways.

1. Long term planning
We are finding our way back into making long term plans. It has been a while since we have made them and there is a volatility about living with facial pain that we are learning to manage and adapt to. So in the meantime I ask my friends on the spur of the moment to come for lunch, go for a walk, watch a movie, have a cup of tea and they have generously learned to be spontaneous with me.

Brookside Gardens

2. Finding pleasure in nature
I walk in beautiful gardens (Brookside Gardens is a favorite.) I plant flowers, lots of them, everywhere.Their life force, beauty and color and pattern lift up my soul and remind me  of birth, growth and resilience  in this uncertain world. (You may enjoy reading  Rabbit Wars and Among The Weeds)

3.Taking Care of myself
I take deep, slow, rejuvenating  breaths, that calm and soothe. 

4.Having excellent access to the medical specialists
I have the name of the neurologist on speed dial. I text him and he calls us back. He cares that our life's jigsaw should not be so interrupted and provides encouragement and solutions that shape and mold the puzzle pieces back into place.

5.Finding Comfort in prayer
I pray, hard, often, with others and by myself. I talk to G-d and whoever guides me. I ask for help and insight and courage and wisdom and sometimes when I am listening carefully an answer comes to me as a whisper in my heart.

Gilly

If you would like to read more from Gilly's blog, you can find it here www.gillycannon.blogspot.com

If you are a carer for someone with Trigeminal Neuralgia, or another horrible condition, how do you cope? If you would like to leave a comment below, please do. Or you can contact us at our Awareness Page on Facebook.

A thief in the night….

There is a thief that came in the very dark hours of the night. He came under my door as a black vapor I was sleeping so peacefully, so happy. He entered in the air I breathed. As I slept he went to work. He snaked through, tearing veins here and nerves there. My brain became his playground. Oh how he enjoyed it, the damage of it. Oh how he laughed when he saw the unforgiving pain he gave me. Then he moved to my emotions those where his favorite seeing how close he could push me until taking my own life. When they came to catch him they thought he had left. However he was still hiding very deep inside waiting to come out again and cause mischief. He stole my life; he stole my family, friends and my job. He stole how I enjoyed the wind on my face or an ice cold glass of tea on a hot summer day. He stole the feel of the human kiss and the caress of my face. Sleep is my only release, there I can have the life I once had...there is no pain there but in that sleep I know he may be waiting, waiting to come out and play. Then he smiles as I am awake and the pain begins all again

By Lori Bowen

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

Awareness Day

It’s Time

Time for the world to unite

There are no oceans to divide us
We are united in pain

It’s time to put our voices together

It’s time to be heard

It’s time to END Trigeminal Neuralgia

So the 7th of October is upon us. Today sees the first ever International Trigeminal Neuralgia Awareness Day. For the first time ever, so many voices are speaking out about Trigeminal Neuralgia. Teal ribbons are being worn. Buildings and bridges are being lit in teal. Television news are broadcasting about TN. Newspapers are publishing stories about it.

People who suffer from TN, who struggle through life every day, are working so that others will take notice of this condition which blights so many lives. People who struggle to talk at times, struggle to eat, even struggle to get out of bed some days have become so passionate about raising awareness. And it is so good to see so many people trying so hard.

But it can’t stop here.

The 7th of October is just one day.

We have to continue with awareness every day until things change. Until the day when people stop screwing their faces up at the mention of Trigeminal Neuralgia, because they have never heard of it. Until the day when people immediately understand and show empathy and concern. Until the day when a sufferer walks into the doctor’s office because of their pain and the doctor immediately recognizes it as Trigeminal Neuralgia and treats them appropriately.

And until the day there is a cure. A real cure.

Until that day, End TN will continue to raise awareness about Trigeminal Neuralgia and will try to help fellow sufferers. Hopefully everyone will continue to do that along with us.

Life

I have a life

It was given to me

A precious gift

A world to see

The pain has come

It was given to me

A moment in time 

Taken from me

A feeling of fear

It was given to me

Nowhere to turn

Take it from me

Please give me an answer

Please give it to me

I want the life

That was given to me

By Anita Springer

✦✦✦

A Kiss

How can such a gentle touch
A kiss
A sweet caress
Become such pain

Once I welcomed the feel
Of my lovers's hand
His lips upon mine
The gentle closeness of love

Pain has taken the place
Of the joy
Of the unexpected kiss
The gentle caress of my face

Inwardly I cringe in fear
Hoping he doesn't see
The dread I hide
When he comes near

Will his touch cause me pain
Will his kisses sear
Send burning waves
Shocking stabs
Stinging zaps
Across my face

The unseen cost
Of love and affection
The fear
The dread
The inconsolable sadness
Of what I have lost
Is the pain I hide
by Allison Ramirez

We put this poster on to our awareness page on Facebook a couple of weeks ago.

Unless people are in the position of having an ongoing illness, or caring for someone with one, they possibly have no idea just how much online communities mean.

No matter what time of day or night, there is normally somebody available for a chat. This is so important when you live with certain conditions. Sometimes people can become quite down, even severely depressed, and the knowledge that having someone there is invaluable.

Someone once wrote that online communities are just one big pity party. But nothing could be further from the truth.

Some people do need to have a bit of a moan, and to be able to do that to people who understand. It is a way of coping. But there are people who are constantly trying to help, trying to pull them through their down spell.

Where would we be without those social networking sites?

TN is often seen as a condition with no cure and  no hope, but hopefully with online groups, people can get support and help. And until there is an actual End to Trigeminal Neuralgia, we'll be thankful for the invention of the internet.

Living With Trigeminal Neuralgia Can Bring Out The Creative Side

As the title says, we often see people writing poetry, prose, drawing  or painting. They make jewellery, they make cards, they just get creative.

Maybe it's a way of taking their minds off the pain. Maybe it's therapy to them. But whatever the reason, we feel it is too good not to be shared. So today, we have a couple of poems for you.

"Sitting Here"

Sitting here with my head in my hands,

The pain is so intense I can't even stand,

TN is my worst enemy, its never a friend

I wish I had a magic wand

To make this pain end, 

But I am a survivor and 

I will fight my way through,

The pills and the pain

I swear I will beat you...

You may be my enemy, but

You will not beat me, it will not be the end

As I gain all my strength from my

Family and friends

By Nicola MacKenzie

❊❊❊

"Waking Up"

I wake each morning not knowing what the day will bring.

Will the pain be low or debilitating?

Will I be able to do all the things that Mommy's do

or fight horrific pain the whole day through?

Will today be the day that I am pain free

or just another day in misery?

I'm so sick of pain controlling my life and

affecting my ability to be the very best mommy and Wife. 

I'm sick of not being able to enjoy this life

that God has given me this second chance at.

I'm sick of the doctors saying I now have this or that!

But we all have to fight even when we are weak.

Take the worry out of our loved ones eyes when they kiss our cheek.

This disease won't break us no matter how much it tries. 

Just you wait and see, Some day a thing of that past will be our painful cries. 

We may be down right now and feeling like we just cant take no more of this pain

and having to live this way.

Our pain free days are coming. God is listening when we pray.

By Dawn Gravitt Earwood

❊❊❊

So does living with pain bring out your creative side?

If it does, please let us know.

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?

Trigeminal Neuralgia : 20 People, 20 Words

There are several books about Trigeminal Neuralgia. They give the facts.

But not many will talk about the fear, the anguish and the isolation that TN brings. They probably don't talk about how incapacitating or exhausting TN is. But these are also important facts. And these facts can only come from TN sufferers or caregivers.

For this blog post, we asked twenty people to write twenty words (approximately) about their experience of Trigeminal Neuralgia.

There is only one way to get awareness….we have to make it happen. Please talk about TN. Write about it. Share this blog and other blogs about TN. Share the posts made on TN awareness groups and pages (including our own on Facebook). 

The only way to ever End Trigeminal Neuralgia is by creating awareness…….so please help us make that happen.

We are always interested in your comments. Why not leave a comment with your own 20 words about Trigeminal Neuralgia?

The Trigeminal Nerve - A Positive Version

Last week we wrote about the horrible aspects of trigeminal nerve. We ended it by saying, can anything in life be more hated. Possibly some things in life can be more hated….but we all know it's pretty horrible.

However, sometimes, when we come up against something bad, we have to look for something positive to take from it. Sometimes we need to look really hard, but there is often something positive there.

This is a more positive version of The Trigeminal Nerve.

© 2013 End Trigeminal Neuralgia

THE TRIGEMINAL NERVE

© 2013 End Trigeminal Neuralgia

T is the TORTURE you put us through

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

I is the ISOLATION we often feel

G the GRUELING pain with which we deal

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

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

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

N for the NEEDLES, which appear from some place

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

E - can only be for EXASPERATED

Got That Monday Feeling?

Monday

Today it is Monday

You wonder how I know

Ah, quite simple really

The computer told me so

© 2013 End Trigeminal Neuralgia

Where would I be without it

I can’t begin to guess

Because, to put it quite bluntly

My head is in a mess

The memory’s not so good now

And words just don’t come out

Everything I start to say

I quickly start to doubt

I think my brain stopped connecting

With my lips and fingers too

Spellcheck has made this readable

Or else you wouldn’t have clue!

My fingers do their own thing

And seem to dance around those keys

I type Rs instead of Ws

And mix my Gs with Bs

Is it because I’m getting older?

Or is it just my meds?

I think it’s the second option

They do this to our heads

E.S.

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

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

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

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

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

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

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

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

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

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

Trigeminal Neuralgia - Support

Support is very under-rated. Nobody really knows just how much it is needed.....until you don’t have it.

Thankfully many people with Trigeminal Neuralgia do have loving and caring families and understanding friends.

However, sadly, for some people, that support is not there. It possibly was there in the beginning of their journey with TN, but gradually (in some cases, fairly quickly) people backed away, leaving them to cope on their own.

Support groups become crucial for those people. Especially online support groups. To know that they can have people to talk to at the click of a button is so important. People to listen to their worries. People to cry to. People who understand. People. Just people.

But it is still never the same as having the person sitting next to you hold your hand when the pain gets bad.

So what happens to those who don’t stay. Why do they leave? Can they not take the stress? Can they not face watching the person they care about in pain. Or do they simply want an easier life. Perhaps that is a question we will never know the answer to. 

Perhaps those giving the support also need support.

Life is hard.

Life with Trigeminal Neuralgia is harder.

So to all those who are there, who stay through thick and thin, through all the pain, we cannot thank you enough.

If the shoe were on the other foot, we would be there for you.

 www.facebook.com/endTrigeminalNeuralgia

What is Trigeminal Neuralgia?

People have a habit of screwing up their faces when you tell them you have Trigeminal Neuralgia. “Tri what?” is the usual question.

It’s quite difficult to explain.

Do you try to tell them in medical terms?

That we have two trigeminal nerves, one for each side of the face.The trigeminal nerve is a paired cranial nerve that has three major branches: the ophthalmic nerve, the maxillary nerve, and the mandibular nerve.

One, two, or all three branches of the nerve may be affected. It can affect one side of your face, and occasionally both sides.

The pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, or jaw and side of the face.

It can sometimes be caused  by a compression on the nerve, possibly by a blood vessel or artery. Sometimes, there is no known cause.

Then do you add this bit?

Trigeminal Neuralgia is one of the most painful conditions known to mankind and is sometimes referred to as the Suicide Disease.

Or do you try to give a more easy to understand explanation?

It is so important to try to make people understand this pain. Medical explanations might not be understood by everybody. And calling it the suicide disease isn't describing the pain at all. We need understanding, but in order to get that, we need to describe the pain well.

Facing Reality : Children Can Also Suffer From Trigeminal Neuralgia

The three of us started our awareness campaign last December, not quite knowing exactly what we were doing or how to do it. But we just muddled along at first, then quickly realised that we needed a plan.

We wanted to create awareness, but we also wanted to have a place where people could find help and advice from fellow sufferers.

It was soon falling into place. We had a growing community of TN sufferers who were more than ready to help and support one another.

Living with this kind of pain gives you one thing. Empathy for other pain sufferers.

Sometimes it has been so emotional reading people’s stories. Reading of the years they’ve spent trying to get diagnosed. Reading of how living with the pain has taken their work, their relationships, their friends, sometimes their lives.

But there can be nothing more heartbreaking than one thing we discovered....the number of children who suffer from Trigeminal Neuralgia. That discovery has been shocking and has brought many tears. Yes, we had read that TN can affect children, but when you actually meet some of them, or their parents, it is truly heartbreaking.

That, more than anything, pushed us. We had to make our awareness campaign work. We had to be able to make people understand this condition. We had to let people know how important it is. We know we can’t make miracles happen. But without awareness, people will never know about it. And if it is not known about, there will never be hope.

And everyone needs hope.

Especially children.

A picture drawn by an eight year old child
when asked by his doctor to describe his pain.
This picture speaks a thousand words.

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.