TRIGEMINAL NEURALGIA (tn) FACT SHEET

1st International Trigeminal Neuralgia Awareness Day on October 7th 2013.

Monuments and Bridges throughout the globe will turn teal for the day (teal is the color assigned to tn)
The Oamaru Opera House in New Zealand, a falls in Canada, the Boston Zakim Bridge, Terminal Towers of Ohio and The Mid Hudson Bridge New York among others..

Sufferers of Trigeminal Neuralgia (TN) are living with what is called "the worst pain known to man" and "The suicide disease".
The trigeminal nerve is a cranial nerve that gives sensation to the face.

When someone develops trigeminal neuralgia the sensation becomes pain. This pain can effect certain parts of the face. For most people it is only one half of the face that is effected but for others it can be both sides.

The majority of patients have pain that is in the jaw and mouth area. Often they are misdiagnosed and have extensive dental work, including multiple tooth extraction which is of no help in this disorder. Other patients may have the pain in the middle of their face, forehead and eye area, in both, or in all three.

For many victims the pain comes out of the blue, the pain often described as a stabbing sensation, electric shock, a lightning bolt through your skin. The pain usually lasts for only a few seconds to several minutes. There is no visual evidence of trigeminal neuralgia, such as swelling or redness. Diagnosis is reliant on the description and area of the pain.

Age used to be a determinate because it is more common in women over 50 but it can be found in all ages, including children, and in men as well as women.

Treatment usually begins with anti-convulsants which may stop or reduce the pain. If these do not work there are a number of neurosurgical options but these often carry a high degree of risk/side effects.

The majority of people with this disorder live with some level of the pain for all of their lives. For others it is not only debilitating but disabling.

Because it is considered a 'rare disease" there is a serious lack of funding. As a result there is still no agreed upon cause. The lack of financial resources also means there is a dearth of research into finding a cure.

The lack of funding also means there is no accurate data on the number of sufferers globally. It is estimated that 1 person in 15 -20,000 has trigeminal neuralgia and 4 to 8 million sufferers worldwide.

TRIGEMINAL NEURALGIA AWARENESS DAY, October 7th 2013, is a day to not just raise awareness, but to raise money for research as well through the selling of teal ribbons. These are availale for sale at http://www.tnnme.com/tn-awareness-day-ribbon.html. The profits are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.

PREDATOR OR PREY?

I was at church and someone started taking pictures with a flash camera.

My eye cannot tolerate bright light, especially when I am unprepared for it. My entire body recoiled, pain searing my eye as the flash lit up the sanctuary.

Fearfully I kept my head down, staring into my lap. Minutes passed and no more photos were taken. I felt safe enough to chance looking up.

691px-Fawn_in_Forest_editI found myself constantly checking the pews, feeling like a trapped animal. Where is he? Where will the danger come from, left, right, the middle? Will it happen again? When? Will it be soon?

How often do we feel like this? How often is it that the predator is not someone or something, but the pain itself?

It’s a good day. I am reading, fooling around on the computer, or at a store shopping. Doing things that are my triggers. My eye is doing well, feeling pretty good. The pain is not being set off, at least not enough to make me sit up and take notice, take a pill, or stop.

I continue what I am doing, not paying attention. Suddenly the pain comes. It forces me to stop, screaming at me, “Ha! Got ya!”

I am the prey, sipping gently at the stream, not paying attention, just being. The pain is the predator, hiding in the bushes, waiting until I am most vulnerable, relaxed, unprepared.

I think the pain angers me the most when it is set off by things I cannot predict.

It is bad enough when I do the behaviors and actions that I know will cause the pain to start, to build up, and get to the point where it is uncontrollable. I can at least blame myself for the pain being set off or made worse.

It is the complete lack of control over things like the flash of the camera that is harder to deal with, because then it is not only the pain over which I have no rein. It is over that which set it off.

Golf Pass

For many of us, we know exactly what makes the pain worse and what makes it better. We strive to be the overlords of those things. But life is uncertain, and so too are the unexpected triggers.

An animal of prey does not take itself to task for getting in the way of the predator hidden in the bushes. He runs as fast as he can to get away. He’s glad when he makes it. Sometimes he is not fast enough and gets hurt. The lucky ones do not get killed.

They say what doesn’t kill us makes us stronger. The pain, as horrendous as it is, does not kill us.

Even when triggered by that which was hiding, even when we get caught and the pain is very bad as a result, it does not kill us.

We cannot control everything that makes our pain worse. But we can accept that sometimes there is a predator called pain. And even when we’re caught in its grasp we do not have to stay there.

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Reprinted from: http://americannewsreport.com/nationalpainreport/pained-life-predat...

HAPPY NEW YEAR

I hope you had a good holiday and that the new year will be a good one for you.
My wish for all of us is less pain when possible and easier days all year.
To all my readers, old, new, and future, I am glad you found the blog.

IT REALLY WORKED?.

I sang a solo last weekend at our annual women's Christmas Tea.

The choir director picked I WONDER AS I WANDER.

I have always had stage fright. I hoped that it would not effect me as much this time.

As they say, those who can do, those who can't teach.

I have taught a few people ways to get over their performance fears.

"Bend your knees slightly. It relaxes your body as you sing.", usually my first instruction to my students. A tiny thing but a gigantic payoff. Other suggestions were similar. "Let your shoulders fall naturally. Don't hold them up to your ears." And so on.

I did not remember to do any of it. David, the choir director, spent a lot of time helping me to prepare, telling me, "bemd your knees. Relax your body." I laughed. "Oh boy I teach others to do it but I completely forgot about it." I bent my knees, lowered my shoulders, opened my fists. It helped. A lot.

I practiced at home. I visualized the room. I imagined the people. This would be different for me; the first time I would be able to see right into the faces of my audience.

My hope for my life had been to do just this; a cabaret moment. Telling a story to an audience through song. I wondered as I wandered. And this is what I thought about. This was my chance to do what I expected to do with my life.

I stood before the audience. I felt okay, no shakes. David played the piano introduction. The first word came out of my mouth. Immediately my body started shaking, my voice warbled.

The more I thought,Okay, calm down, these people are your friends, people you know, and you know the song. Enjoy it. the more I shook.

I continued to sing. I hit my notes. I felt I got some of the story out the way I meant to, emphasizing some worda and ideas, deemphasizing others.
I wondered though. How bad did it sound to them? How bad did it look?

"You were wonderful." they said. Nice, but these were nice people.

"How bad was it? How scared did I seem and sound?", I asked someone I trusted to answer honestly.

"Scared?" Martha looked at me with surprise. "You looked so calm and comfortable. I was amazed how relaxed you seemed."

It is funny how people's perception is so different from what we feel, or even what is really happening.

I love telling this story:

When I was in dinner theater we did CAROUSEL. Instead of an orchestra the producers decided to use a tape for the music.

It was the finale, the song When You Walk Through A Storm. It was a heavyduty moment, the memorial service for the character Billy Bigelow. We stood and the music did not start. We continued to stand, waiting. Nothing. The lead started to sing, in the wrong key. Some tried to join in but it was pretty bad. And then the music started. At the beginning. We started anew. And then the tape stopped. We started to sing. And then it stopped. We stopped. It started again. We started again. And this time got through the song. It was a debacle. So embarrassing.

And I cannot tell you how many people later came up to us and said "The finale was so moving. The most emotional of any CAROUSEL I have seen."

Amazing.

What you see and what they get. What you feel, what they get from it.

Cool.

GIVE. GIVE. GIVE

It is the holiday season. Commericals and advertisements everywhere. Give. Give a gift. Give. Make a donation. Give. Of your time.

What about us, those in chronic intractable pain? I think we have a different give agenda and history.

The first two 'gives' are almost antithetical; to give in or to give up.

I decide, for me, to read or write, even this post. The pain gets really bad. Do I give up? Stop what I am doing? Get so angry/depressed that I decide no more blog. No more books, It is not even worth the try anymore. The pain is my life.

For those with body pain - do I not get out of bed, tie my shoes, make lunch, for many who are still able to work, resign or quit? Ohhh. Resign. That is a perfect word.

Give up. The pain is stronger then I am. Resign to the fate of the pain.

I do not have to.

I could give in instead. Surrender to the needs of the pain. Take the medication(s). Accept the sensations of narcotic. Stop all activity. Rest. My body, or for me, my eye. Let it be my life. Until I have recuperated enough to start up again. That does not always feel good. It helps the pain but still feels a surrender, a capitulation. Captivity to the pain.

And then the third 'Give".

Give myself the freedom to accept the pain as a part of my life, but not my life.

Give myself permission to do what I need to to incorporate the reality of pain into my day, into my life.

Give myself the pat on the back. "I can do it."

It is funny. So many people in pain tell me stories about friends, colleagues, family, mocking their pain, disbelieving it, refusing to hear the cry of "I can't" or "Help me."

In my own life and in theirs, it is rare, sometimes never, to hear the positive "Good for you. You succeed in having a life in spite of pain. You soldier on and do what you need to to not let the pain take you down." So few, if ever, "I am proud of you, of the fight you make to get through each day, of doing what you need to do to live."

This is my give to you.

I am proud of you. You put so much effort into living with the pain and getting past it so that you have a life. You agree to try things that most people would not agree to in order to try and help or even stop the pain. Your fight, our fight, is a hard one, one that those who fall into a chair and moan when the hammer hits their thumb, could never imagine.

Give. To yourself. All of the kudos and back pats, those that have not come and those that you have not given yourself. You deserve it.

116 MILLION IN PAIN. For real?

"Put chronic pain behind you, use our hypnosis tapes."
"A revolutionary method for stopping chronic pain."
"A solution to chronic pain?: Can an all-natural dietary supplement from tobacco plants help ease your pain?"
Excedrin ad for migraine medicine. "These things are for real."

I look at these fake promises and the ad starts to make sense to me.

I know many people do not believe there is a real thing such as chronic intractable pain. Why should they?

Studies, the most recent that 116 million people have chronic pain relies on self-reporting and includes pain within the last 12 months from anything including headaches, arthritis, back pain; entities that we all have have at one time or another. What does arthritis, for instance, or rheumatism mean?

I do not mean to discount the normal pain discomforts and outright pain of life. But a diagnosed disorder, with specific diagnostic criterion, is very different then when someone personally assigns a name to their pain.

I would like to see a study where they study the numbers of those with the disorders where pain is the sole or main complaint. These are different, at least to me, then a more generalized count of all who say they are in pain.

When statistics are printed in the media about the numbers of those with diabetes or cancer or other diseases, those reports are believed. Everyone knows what those names mean. The term chronic pain has come to mean everything from a sprained ankle if the pain lasts for 12 weeks or longer, to the pain of CRPS, trigeminal neuralgia and others.

For sure, those of us who live with intractable pain would like to have a 'revolutionary method for stopping chronic pain" or an hypnosis tape that would end our suffering (as a hypnotherapist it kind of kills me to lump this in). A plant that has curative properties, boy wouldn't that be wonderful?

Our pain is real. It needs real answers and not false promises. It is easier to offer these things when too many people think the disease is also a fake.

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"Goals of the study were to determine the prevalence by age and gender of common chronic pain conditions (headache, back or neck pain, arthritis or joint pain, and others), plus their association with both depressive and anxiety disorders." http://updates.pain-topics.org/2011/11/many-readers-have-questioned-latest.html

Necks.

As I sit in choir, stand behind someone at the cashier's line, let someone get in front of me at a redlight I cannot help but look at their necks.

Almost all are pristine, not a scar to be seen, maybe a line of two of age but nothing...egregious. Not like mine.

The back of my neck has seen a lot of scalpels. In 1980, entering through the nape of my neck, Dr. Hosobuchi tried to cut the trigeminal nerve at it's root. For a few years it took away the spontaneous pains but a lot of the TN remained. Once it completely failed, a few years later - back to the drawing board.

The next surgery was the first dorsal column stimulator implant. It was placed in the same area where Dr. Hosobuchi had been, and a new scar was born. It became infected a few months later. Dr. Barolat removed it but the knifeprint remained and a new one added. The next dorsal column stimulator was placed in the same area, a new scar posted. Then it was removed, another knifeprint heard from.

The back of my neck has a wide ribbon of white where all those hands entered and departed. I hate that I have it. I am jealous when I look at those other necks.

And yet.

And yet a part of me wants it to be seen; hoping that maybe my story reads there and people who see it will have a better idea of what I have been through, what has happened to me. Probably not. Probably more of a 'geesh, will you look at that?" if it is noticed at all.

The other side of that is the hope, ridiculous in it's thought, that a doctor will be walking behind me. He will be close enough to see it. "Miss, Miss." He calls after me. "I saw your scar. I know what you have. I know how to fix it." One of those nonsensical fantasmagorical figments of imagination: the delusion of hope, the killer of the 'this is forever' fear.

We all have so many scars, internal and external. They have so many meanings, a hope here, a hate there, our lives laid out, and played out, in indelible lines.

Oops. No it's not from the pain..

I had been noticing a scab on my forehead for months, maybe longer. I had been told many years ago that the skin on the left side of my face would probably breakdown at some point. I was afraid the scab was a sign of that so I just kept seeing it and pretending it was nothing.

I also hoped it would be noticed during one of my eye exams since it was close to my eye. It never was and oone day I finally decided to mention it. As soon as she saw it she said "That has to be biopsied. It's a lesion but I doubt it's malignant."

It was cancer, the least of all cancers (to my mind), a basal cell carcinoma. A little office surgery was all that was needed. (Looks like it is back or maybe it was not completely removed the first time so I have to be seen again but still, if you have to have a cancer this is the most minimal of all.)

I did nothing for almost two years because I relied on the fact that it was in the pained area. Other than the breaking down of the skin: and it never got bigger or looked worse so how bad could it be even if it was that?, what else could go wrong there? Nothing. So I thought.

I think of this now because one of the sensations I kept getting, a very, very strong itch feeling at the base of my nose, I blamed on the anesthesia dolorosa.

When these itches came, hard and strong, I took an extra pill or two of my pain control medication (not the codeine but an anticonvulsant also used for pain control.) It seemed to help - but then they disappear on their own, often quickly, and reappear at their own will, sometimes just as fast, sometimes hanging on for seconds and minutes. So what stops them? The medication, or just because they want to? I believed the answer was either/or.

And then the problems with my stimulator started. As I turned down the level of stimulation, the 'tics' still came but when they did they were less fierce. And the lower the level of stimulation, the lower the level of sensation of these itches.

I'll be darned. The implant is causing these, not the phantom pain. It never occurred to me that it could be anything but the damage already there.

Moral of the story: We have to remember that despite our pain we are still prone to all the ills of the world. We cannot let folly (in my case), not wanting to see more doctors, fear of other possible procedures, etc. deter us.

For me a lesson needing to be repeated and hard (hopefully this time)learned.

Ben's friends is no friend of mine - follow up. or How to evade responsibility.

I am so saddened that the owner of a support group behaves in a way no different than what many of us have experienced with friends, family, colleagues, etc.

I had written earlier about Ben' Friends group, living with atypical trigeminal neuralgia.

I received a note saying I had been suspended for spam they could not prove and harassment, for which they had no explanation other than to say if I replied to an email from one of the administrators it would be considered harassment.

I sent copies of the email and my replies to Ben so he would be aware of what was happening. He emailed me back asking that we speak by phone.

During the conversation I reiterated that I asked for proof of their allegations: they had none. I also told him I had owned a ning group such as his. When I suspended someone for spam I sent out a note to the group telling them someone had been removed for that reason. The same can be done if someone is removed erroneously.

Accusing someone of spamming and harassment is a major 'crime' on the internet. They needed to apologize, or correct their lie, by posting a note that they had wrongly suspended a member for those reasons. They did not even need to use my name.

This was the reply I received from Ben this morning.

It is a typical response to someone who truly does not 'get' it.

Instead of acknowledging they were wrong, instead of issuing an apology which he said they felt would be "inappropriate" with this "issue" he seemed to put the the blame for this fandango on me, writing "I know you have dealt with a lot in your life, medically," and wished me the best of luck.

My medical experiences had nothing to do with being wrongly accused.

It is sad when moderators, when shown to be wrong, when proven to put out bad information, are rewarded but the whistleblower is shown the door.

Support groups are good and necessary but no group is good, or safe, if the ones on whom members rely are so glued to their wrong positions that they refuse to acknowledge their errors.

Ben's friends is no friend of mine.

I woke up this morning obsessing after falling asleep to the same thoughts. Going through my email this morning I found 2 emails sent to me by the admiinistrator of this Ben's friends group, Living with TN. I read them, and responded. What she wrote so upset me that I am still shaking. The posting today is my sounding board and catharsis (I hope.).

I was 'suspended" and accused of spamming and harassment because I asked to have my book listed as an external link to their article they put on Wiki about atypical facial pain. I say accused because when asked to provide proof of either/both she could provide none.

She told me they had "unearthed" my blog. They, she and'other administrators, although only one other named in one of the emails she sent) had decided that my mention of it was an 'advert' for the book. I assume this was her basis for the 'spamming' complaint. The only problem was they obviously never bothered to look further to see that the blog name is not the same as the book and this blog has nothing to do with the book.

She had no basis for the 'harassment". Instead she wrote me an email- to my personal address- her fourth, to tell me if I replied it would be considered 'harassment' since I had already sent 3 emails(I could only find 2) to the administrators of the site. All were in direct reply to her email but she wanted to find an excuse after the fact for the "permanent" suspension. (She put permanent in her email. The site notification merely said 'suspended".)

Once again, and I did write a short post earlier when this first happened, it appears it has to do with the book.

Want to know what it is like to live with this pain, day after day, and to fight this pain, day after day? My book does that. The author of the article is a researcher of research. Interestingly Stef, the administrator who wrote me, did 2 things: she defended the author of the article in her email for some unknown reason and said part of their agenda was to erase the idea that atypical facial pain is not psychosomatic; but a large portion of the article seemed to indicate to the reader unfamiliar, and familiar, with the pain, that this is a psychosomtic disorder and not physical.

It is bad enough that I have to live the pained life. It is bad enough that I have to fight the pain every day, like so many of us. Support sites should be support sites for the members not for an agenda.

Stef indicated she had not read the book or checked out the excerpt. This is not a book on how much fun it is to live like this. I lay bare the most intimate parts of my life so the reader can feel the pain we go through living like this. "Red", the researcher of the research and author of the article had mentioned in one of his posts at the site that he was not looking for 'self-aggrandizement'. It appeared to be pointed at me. If I wanted to self-aggrandize the book would not read the way it does. I would have made myself the hero.

Stef told me I could not have the diagnoses I do: trigeminal, atypical trigeminal neuralgia, and facial pain. "You cannot have all three." She ascknowledged she is not a doctor, I do not even know if she is a medical person, but I informed her those were my diagnoses by neurologists,etc. It was telling she never replied to that information.

I am tired of people lying about me. Ben's friends is no friend of mine when they work to add to my pain rather than try, through the support they purport to offer, to help diminish it.