FATIGUE

Dear Healthy Person,
Congratulations. You are worth 16 of me.
You can go to work eight hours a day, five days a week.
I can work half an hour a day. In three, ten minute bursts.

You sleep eight hours and wake refreshed.
I need to sleep ten to twelve hours.
You can go out for dinner, on to a concert, and back to someone's place after for nightcaps.
I can meet a friend for a quick coffee.

If you do more, push yourself to your limits, you get tired. You need an early night, or an afternoon nap to recover.
If I push myself, my body shuts down and refuses to move. My mind shuts down and refuses to think. I need a week of early nights and afternoon naps to recover.

Back when I was you, Healthy Person, I used to think tired meant a lie-in on a Sunday morning, after a busy week at work, and a hectic Saturday shopping and cheering the kids' on at weekend sports.  It meant a cup of tea, feet up and a snooze on the sofa at 4 o'clock, after a long weekend entertaining.  It meant feeling like the wheels are falling off because the baby was up again at 11pm, and 2am, and 4am, and you haven't had an unbroken night's sleep since she started teething. It meant aching joints after a day gardening, or cycling, or mountaineering, that a long soak in a hot bath and a good sleep would soon cure.

Now I am a different me. A me with a chronic auto-immune and pain condition, that can't be cured, and can barely be managed.  Part of the package is fatigue. And thanks to fatigue, I am a sixteenth of me.

This is what tired means now: getting out of bed and getting dressed; or having a shower and washing my hair; or reading for ten minutes; or emptying the dishwasher and putting the dishes away; or making coffee and breakfast. Four years ago I did all these things between getting up and going to work, as well as walking the dog, putting the rubbish out, making my lunch and putting a load of laundry on. In an hour and a half, I could achieve more, with no weariness, than I can now in a day and a half.

Fatigue doesn't mean I can't do anything.
But everything has to have downtime allocated. My day has to be measured out into short bursts of activity followed by long periods of rest or sleep.
If I have a shower in the morning, I rest an hour before doing the dishwasher.
If I spend an afternoon with my grandkids, I rest three days before meeting my best mate for coffee.
If I have a deadline for writing a short article, I start work on it at least a week before.
If I don't rest, my body does it for me. It collapses.

Sometimes I forget.  I wake up in the morning and I feel fresh, energetic. I jump out of bed, grab my clothes, head for the shower. I sing in the shower and plan my day; all the household tasks I need to catch up on. An afternoon at the park with the grandkids. Make dinner for friends. By the time I'm drying myself, I am so tired I barely know which way round my knickers go. 

This is the reality for people with chronic illnesses.
We are one-sixteenth of healthy people.
One sixteenth of the people we used to be.
One-sixteenth of the people we want to be.

So congratulations, dear healthy person. 
I'd hug you, but I don't have the energy.

Invisible Conditions

Trigeminal Neuralgia is an invisible condition.

One of the most difficult aspects of living with Trigeminal Neuralgia is that it cannot be seen by people. "Can someone really be in so much pain, but have no visible signs?”

Many people need evidence, something visible, something tangible, before they can truly believe that someone could possibly be living with such cruel and savage pain. After all, if it were really that bad, doctors would have found a cure by now. Wouldn’t they?

Sadly, it is that bad, and even more sadly, there really isn’t a cure.

When there is no understanding, it affects the patient so much.

They feel like they are not believed. They feel guilty because of their inability to live life as they should. They feel like failures, as they cannot live up to their own or other people’s expectations. They feel that they need to hide their pain from others. They feel more and more isolated with their pain. They become depressed. And it becomes even more difficult to deal with the pain.

This is not just related to Trigeminal Neuralgia.

There are many invisible conditions.

Can we tell if they have an invisible condition?

Can we tell if they are ill?

Can we tell if they are depressed?

Can we tell if they are grieving?

Can we tell if they are being bullied?

Can we tell if they are struggling financially?

Can we tell anything about a person simply by looking at their face?

Of course, we can’t tell any of those things just by looking at someone's face.

But we, as humans, tend to judge too readily.....even those of us who believe ourselves to be non-judgmental. We all do it.

We notice the grumpy looking shop assistant and think they could do with smiling a bit more. We don’t wonder why they are grumpy. We don’t really give a thought to what they may be going through. We possibly don’t even care.

We see a car pulling into the disabled parking space and notice the driver getting out and walking unaided into the supermarket and presume he isn’t disabled at all and shouldn’t be parking there. We don’t give a thought that by the time he has finished his shopping, he possibly will be struggling to walk from the checkout back to his car. We just think he was wrong to park in that disabled space.

We hear so much on television and newspapers about people fraudulently claiming disability benefits, that when our young, healthy looking neighbour hasn’t been working for six months, we presume they are lazy and work-shy. Do we even entertain the thought at all, that this healthy looking young man, may actually be suffering greatly in some way? Depression? Anxiety? Living with invisible pain like Trigeminal Neuralgia?

Perhaps we all need to take another look at those faces.

Perhaps we need to imagine a large question mark on their foreheads to remind ourselves that much of what goes on in life is actually invisible.

Nobody likes to be judged.

Perhaps a little more compassion and empathy could make everyone’s lives a little better. 

Please help to bring awareness about Trigeminal Neuralgia and other Invisible Conditions by sharing our blog. Awareness can bring much needed understanding.

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 

End Trigeminal Neuralgia Challenge

New Patients and Awareness Advocacy

We always try to encourage raising awareness about Trigeminal Neuralgia and other Facial pain conditions. However, raising awareness is not for everyone. Living with a chronic illness is a huge deal, and often, just living with the condition is more than enough to cope with, without feeling any pressure to be involved in awareness. People have to do what is right for them.
The following article by Jordan Riggs may help people to understand that it is ok to just sit back and take care of yourself. You must always put yourself before awareness.

A beautiful painting of a pheasant by Jordan

Jordan is an artist and writer in southcentral Alaska.  She currently lives with Trigeminal Neuralgia, Gastroparesis and Chronic Intestinal Pseudo-Obstruction after sustaining nerve damage from nearly a decade of thyroid cancer treatment.

Opinion: New Patients and Awareness Advocacy

by Jordan Riggs

You leave the doctor’s office, stunned at the news your physician just shared.  The blood tests, the imaging scans, the doctor’s examinations: all have come to the same conclusion.  The official diagnosis is the one disease that you were terrified of having.

The next few weeks are a blur of learning how to properly manage the monster that you’re suddenly having to share your body with.  New prescriptions with awkward-sounding names start popping up in your medicine cabinet.  Appointments to referred specialists are scheduled, then re-scheduled to accommodate the doctor’s choice to extend their vacation.  You struggle with how best to notify your employer about the new diagnosis, as well as the long-term prognosis: should you warn them about possible deterioration in your job performance due to the disease’s symptoms and medication side effects?  Or ‘play it by ear’ and hope that they won’t notice?  Some family members are supportive, while others question the legitimacy of the diagnosis and suggest that you get a second (or third) opinion.  Friendships are tested as socializing abruptly transitions from fun to burdensome.  When the disease’s symptoms (or the medication side effects) blatantly affect you, oblivious strangers chime in about the latest fad diet they’re convinced will cure you.

The weeks turn into months.  Some longtime friendships have gradually faded away as other relationships are revived and strengthened.  Family members at home have adjusted as well as can be expected, and other relatives suddenly take you very seriously after they looked up your diagnosis online.  Work is challenging, but you’re regaining your old rhythm despite fatigue from the medication.  People start using words like “tough” and “brave” to compliment you, but you don’t feel that way.  You simply feel like you’re surviving, nothing more.

You make the decision to reach out and connect with people who know exactly what you’re going through.  You discover that a support group meets at the local hospital, or you find a group on Facebook with people from all over the world who have your same diagnosis.

Fundraisers.  Colored ribbons.  Tatoos.  Blogs.  5K runs.  Pleas from other patients to write lawmakers to demand more research for the disease.  Reminders of important upcoming dates to spread, spread, spread the awareness.  Organizations, associations, celebrity spokespersons.  It’s all so inspiring and overwhelming at the same time.  Navigating this new chapter on your life has already consumed so much of your time, and now you feel under pressure to become a walking, talking billboard informing the world about your illness.

In the age of social media, the peer pressure for patients to become advocates for their respective disease is intense.  Are you the type who relishes the opportunity to color your hair the same hue as your illness’ ribbon color, using your appearance as a catalyst to educate the public about your disease?  Awesome!  But what if you’re the type who prefers to only occasionally discuss your health issue, and prefer to blend in with healthy people and live normally?  That’s okay too!

As patients, successfully managing our illness is to be true to ourselves and live with our disease in a way that benefits us the most.  There is no “right” or “wrong” perspective regarding your very personal journey.  An unspoken obligation seems to exist that pressures new patients to jump on the awareness bandwagon.  However you choose to engage (or not engage) in these activities is up to you, and your choice doesn’t make you a “good” or “bad” patient within the community.  When living with a life-altering illness, self-awareness trumps public awareness.  Your only "real" job as a patient is to take care of yourself.  Expecations placed on you are just that...expectations.

So whether you’re making art for an upcoming fundraiser - or are trying to come up with clever ways to avoid talking about your disease - keep it up.  Stay true to yourself.

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.

Trigeminal Neuralgia : More To It Than Pain

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

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

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

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

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

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

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

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

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

Depression can easily take hold.

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

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

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

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

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

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

Trigeminal Neuralgia : Explain The Pain

If you read our last blog post, you will have seen that a physical injury caused Shelley to suffer from permanent facial pain. When the bruising was there, everyone could see her pain. But when the bruises went away, Shelley had nothing to show for her pain, in other words, she had an invisible condition.

This is what TN sufferers are up against all the time. There is nothing to show for their pain. Many non-sufferers  can’t understand it because they can't see it. How can we have so much pain, but not a mark to  show for it? People sometimes doubt the pain. People think sufferers are possibly exaggerating how much pain they deal with, possibly looking for attention, or possibly even just lazy! 

People are sometimes judged on how much medication they use. They are even sometimes accused of being drug addicts.

Even doctors (the very people we rely on to help us) sometimes doubt their patients. Some doctors will not give adequate medication to help. When a desperate patient goes to Emergency because they are in so much pain, some doctors haven't even got a clue what Trigeminal Neuralgia is. They don't know what they can do to help, and often turn patients away suspecting they are drug seekers. 

Some pharmacists have also been known to turn people away without filling their prescription because they suspect the person is either a drug addict or selling their meds. Does a pharmacist have the right to question a legitimate prescription written by a legitimate doctor for a legitimate patient? Apparently, they seem to think they do.

There is a huge lack of understanding for many people suffering from not just Trigeminal Neuralgia, but many other forms of chronic pain too.

People often suffer in silence because the feel nobody listens or believes them.

This is why we NEED awareness about Trigeminal Neuralgia. We NEED people to believe us. We NEED people to at least try to understand.

So how can we do that? How can we explain the unexplainable?

How can we make people hear those two words Trigeminal Neuralgia and immediately understand what a person is dealing with?

For a start, we need to describe the pain, perhaps using graphic descriptions, so that people will understand. It can be done. After all, we don't have to break a leg to understand how painful a broken bone can be. 

The following are some quotes from some facial pain sufferers on how they describe their pain.

• I sometimes feel like there is a sharp knife between my teeth slicing through my gum and right up my cheek. My cheekbone feels like it should have a huge bruise on it. For a long time, I was forever checking in the mirror because I was sure there must be a bruise there. Sometimes my pain builds up and builds up until it feels like my face and head will burst from the pressure. It is as if my head is in a vice, which is being turned tighter and tighter.

• Feels like a hot ice pick stabbing my eye. It is like I am being tazed inside my mouth. I get sharp stabbing pains. Sometimes achy/bruised feeling and an itchy gum. 

• When it feels swollen and painful it feels like I have been hit with a baseball bat. And the electric stabs I refer to as "zingers" stabbing in my eye are continuous, like it is being stabbed, pulled out and stabbed again, etc. And I get a vice gripping pain behind my ear.

• Mine is the burn of a blowtorch on my cheek and around my eye, after it has been scraped raw by a straight razor. Then at times the knife stabbing above and below my eye, trying to gouge my eye out. Also suffer from the pain when eating. Just one bite of a salad that I have already taken the chill off, from putting it in the microwave, and shooting pain from my teeth through my head.

• Imagine you have an abscess under one tooth. Now imagine that you crack the one next to it, right down to the roots. And then some idiot hammers a nail through them both. Now multiply that by every tooth on that side of your jaw. And sometimes both upper and lower jaw, and round your eye socket. Occasionally on both sides. The pain comes and goes, in waves, lasting long hard minutes at a time, up to 100 or more times every day. For years. 

• On the TN side of my face, I am densely numb. My tongue, lips and teeth, the area around my eye, eyelids and eyeball are all numb to the touch, as is the area of my upper lip and out from it around and to my chin. These areas burn like a 3rd degree burn all the time. When I blink my eyelid feels pinched. My cheek and forehead aches deep inside. My teeth on top are numb but feel like they are being pushed on all the time. Reminds me of the way my teeth would hurt for a few days after my braces were tightened as a child. I get stabbing pains across my temple area and into my eye and forehead that feels like a knife being hammered in over and over several times a day, and constantly some days. Percocet helps that usually but only takes the edge off the pain. Makes it bearable. My head aches like it is being tightened in a vice from the base of my skull up and across my forehead. I can feel my heart beats as pain in my head and it feels hot. Sometimes my scalp feels like it is being peeled off exposing all the nerves to the air. Touching any place around my mouth feels like touching a raw nerve. I get stabbing pains from the top of my forehead into my area so bad I flinch and squeeze my eye shut. My eye waters all the time. This is my every day existence. This is my life.

• Right now my eyeball is burning and feels like I'm giving birth through it! Plus my jaw is freezing cold, which is often how I feel pain. Stabbing, burning, slicing and aching are all words I'm very familiar with. I also sometimes get a sensation of cramping and my face feels like it gets locked.

• My teeth are my main issue. A constant ache and throbbing with tremendous pressure and sharp stabbing pains. Trying to eat is agonizing.

• Sometimes it just plain hurts so bad you cannot tell what part is affected and what is not, it just goes on and on until it all hurts. I told my daughter last night, that it seemed like I had broken all the bones in my tongue.

• I have just been diagnosed with TN. Had a tooth removed last week cos I thought I had toothache. It's a constant throbbing, piercing, stabbing pain behind my eye, ear and jaw/neck.
• My face constantly feels some level of burning, sometimes the heat is on low, other times it is like a blow torch on high, welding my skin to the bone.  There is a vice grip-like pressure constantly loosening and tightening at random, but always present.  My scalp feels like needles are poking me, and it feels like the corner of my eye and the corner of my lip are being pulled back.  When the pain flares up, it feels like someone is jabbing an ice pick in my ear, and like there is an electrical storm in my teeth and gums, striking frequently yet randomly and the level of pain is blinding.  At my worst, I cannot speak, I cannot walk, I can hardly move at all.  The most painful episodes happen at random; you never know when it might strike.  If a slight breeze hits my face, or a cool air contacts my face; talking, chewing, brushing my teeth, leaning forward…or sometimes doing nothing at all, an intense pain ensues.  This pain is debilitating, at best, and at worst, it destroys my quality of life. 

'Broken Mind' by Magdalena Esmailzadeh

This painting has been used with kind permission from the artist
Magdalena Esmailzadeh

To see more of her work, please visit  http://medeasafir.deviantart.com

Sometimes people don’t explain their pain because they think non-sufferers will not understand anyway.....but they never will understand if we don’t try to explain it.

Sometimes people feel it takes too much energy and gives too much pain trying to talk about it to explain. If that’s the case, print off some information so you can easily pass it on. We have printable information files on our awareness page. 

• What is TN? Information poster

• Pain attack and Info cards

As sufferers, we are the only people who can really make people understand.

We need to make people listen to us.

A Face Behind The Pain

Facial pain can come in various forms and have various causes.

One cause of the pain can be injury to the facial nerves. Perhaps a fall or a car accident cause an injury which leaves lasting damage.

Shelley, a TN sufferer in Canada, was at a baseball game when she was accidentally hit on the face by the baseball.

The result was shocking.

With thanks to Shelley for allowing us to use her photos

As the days passed, the bruising came out. Shelley's face was black, blue and a multitude of other colours.

She was in extreme pain.

People saw her and knew she was in extreme pain. The bruising allowed people to understand.

Nobody would have looked at her and thought, "there's nothing wrong with her", "why doesn't she just take a couple of painkillers?", "what is she complaining about?" or, perhaps worst of all,  "she doesn't look sick!"

Everybody who saw Shelley's face could tell the pain she was in. People could comprehend the agony.


However, bruises fade…...


Shelley's face soon turned back to normal. But, sadly, the damage to the nerves was permanent. The bruises were gone, but the pain remained, possibly even became worse.

Constant aching, burning, agonising pain….along with the emotional issues which go hand in hand with chronic illness.

Shelley became a sufferer of an extremely painful, but invisible condition. A condition which can take over a person's life. A condition which non-sufferers, including many doctors, find extremely difficult to comprehend.

If only people could see our invisible bruises, surely they would understand the pain.

There is no cure (at the moment) for trigeminal neuralgia or similar facial nerve pain. When nerves are injured, they are often damaged beyond repair. We all live in the hope of a cure, but until such time, we desperately need people to understand.

We need hope, we need support, we need understanding.

Our job as sufferers, is to try to make people understand the pain we live with. We must explain it in a way to make people at least try to understand.

End TN made a video last year called "Faces Behind the Pain" in the hope that non-sufferers could 'see' our pain. We don't want to shock people, or scare them, but we do want and need people to understand how painful Trigeminal Neuralgia is, how demanding living with this constant pain is and how frustrating and depressing life can become.

You may also want to go here to our Facebook awareness page to read the individual stories from the people who took part in this video.

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How do you make people understand your pain? We'd really like to know. How do you describe it? Have you ever tried to 'draw' your pain to let family and friends, or even doctors, understand? Please let us know by either commenting here, or by contacting us through our Awareness Page or Support Group on Facebook.

It's Not Just About Trigeminal Neuralgia...

We said in a post at the beginning of our blog that when we say we want an end to TN, we actually mean we want an end to all facial and head pain. It is simply a lot easier to say End TN than to list all the various types of pain. Besides, End TN does have a bit of a ring to it.

There is actually a long list of conditions causing facial pain.....and a lot of confusion.

The confusion is not just amongst the patients involved, but the medical profession too.

A person could consult several doctors and be given a different diagnosis each time. The fortunate thing is that very often (but not always) the same medication is used to treat the pain, no matter what it is called. However, when it comes to surgical options, people really need a correct diagnosis. For example, surgery such as an MVD (micro-vascular decompression) will only help if there is a compression on the Trigeminal Nerve. Therefore it would only help if the patient actually has classic TN due to a compression. But some patients are told they have Trigeminal Neuralgia, when in fact, they don’t. They then chase after surgeries which would do no good at all. In fact, they could come out worse than before.

We, as patients, need a name for our pain. With a name, we at least feel as though a doctor believes us. We need that. We also need a name so that family, friends and colleagues can learn about the condition. It almost feels as though we can justify our pain if we have a name for it.

And doctors need to have enough knowledge about facial pain, to be able to give it the correct name. Some of the names given are very generic and sometimes sound as though the doctor is not really too sure what to call it.

The book “Striking Back” by George Weigel and Kenneth F. Casey MD, is known as the bible in the world of facial pain. In it, there is a long list of various types of facial pain. 

No wonder it is so confusing.

And since the publication of that book, there have been changes made to the names of some of the conditions.

If some of the medical profession are as confused as their patients about those names, can we do anything to help?

Possibly trying to find a neurologist or facial pain specialist who really is a specialist would help. But perhaps that is not always possible. If this is the case, try to find a doctor/dentist with whom you feel comfortable, someone who listens and doesn’t rush you. One who even admits they don’t know too much, but they are prepared to learn can turn out to be one of the best.

Keep a pain diary. Write everything that happens. Try to describe the pain accurately, because they need to make a diagnosis based on how you describe your pain. You may think that your cheek flushing when you are in pain is unimportant, but that fact could possibly be the key to a correct diagnosis.

One day, hopefully there will be more knowledge out there......and hopefully there will be enough knowledge to actually treat and manage all of the head and facial pain conditions successfully.

Fire, by Allison Ramirez

There is a fire burning inside of me

A fire that no one else can see

An ornery persistent smouldering burn

Takes away the peace for which I yearn

There is a fire burning inside of me

A fire no one else can see

Burns through me in every way

Burns through each and every day

This fire that burns inside of me

This fire that only I can see

It sets my nerves aflame

Leaves me moaning in pain

This fire that burns inside of me

This fire that only I can see

What chaos this burn does foment

It makes my life a living torment

This burning flame inside of me

This burning no one else can see

Turns my pain into passion

To beat this pain into submission

There is a fire inside of me

A fire that shines so you can see

This burning pain has had to fashion

A life of strength and compassion

This fire that burns inside of me

This fire that I hope you can see

From tears and pain like lashes

Like a phoenix I rise from the ashes

Clothed in the fire that burns inside of me

Burning so everyone can see

Is a person nurtured and forged in pain

Transformed into something new again

There is a fire burning inside of me

A fire that burns for all to see

A fire that burns away the pain

A fire that gives me my life again

A fire of strength and compassion

A fire for life, love, and passion

Allison Ramirez

03/09/2014

Treating Trigeminal Neuralgia

We have made some files containing information about some of the treatments available for Trigeminal Neuralgia. These are on our Facebook awareness page (www.facebook.com/endTrigeminalNeuralgia)

The links are below. If you have gone through any of the procedures, please feel free to leave a comment in the comment box on the appropriate file. Your experience may help someone else make a decision about their own options.


MVD (Microvascular Decompression)

Percutaneous Procedures (Balloon Compression, Radiofrequency Lesioning & Glycerol Injection)

Gamma Knife

Also, we have some info about meds here and a file with tips on living with TN here

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

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

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

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

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

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

Where does the name come from?

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

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

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

So, is it so painful?

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

Does that mean I’m suicidal?

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

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

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

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

To the disturbing statistics that are being presented?

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

Let’s take a closer look

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

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

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

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

So to 2 other postulates that have been around, 

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

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

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

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

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

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

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

The need for real facts – no more myths

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

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

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

All awareness is not good awareness

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

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

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

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

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

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

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

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

This article is written by End Trigeminal Neuralgia 2014.

Sources:

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