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.

THE PILL DILEMMA.

Only twice in my 30-plus years of living with chronic pain have I had a problem getting my narcotic medication.

The first time a relative lied to a doctor.

I was visiting from out-of-state. The pain was bad. I went to take a codeine pill and realized I had not brought enough with me.

Checking The Label“What if the pain gets out of control?” I cried. “What am I going to do?”

The relative called the doctor who was covering for my regular one.

“She’s ranting and raving about not having her drugs,” she told him.

He believed her. And he refused to write a new prescription. He also wrote in my chart: “Her behavior indicates she may be abusing her drugs.”

My regular doctor told me about the note. He added a larger one: “She has been taking this drug for years. She has never had a problem with it.”

The second episode again involved a doctor other than the one I usually saw.

I came in every 6 months to get my prescriptions, for another medication and for codeine.

“How often do you take the codeine?” he asked.

Not thinking I needed to be cautious I said, “About 3 pills a day.”

“I see your doctor gives you 120. I’m only giving you 90.”

“But three is an average. Some days I need more.”

“No. You said three.”

He didn’t care that it wasn’t enough. He didn’t notice 90 a month did not account for months with 31 days.

Again, my regular doctor took care of it.

Golf Pass

“I know you need 120 a month. Just make sure you only see me from now on,” he said.

It was astounding to me that after decades of taking this drug without any problem, I was questioned, disbelieved, and treated as a drug seeker rather than a patient with chronic pain.

I understand narcotics have a way of finding their way onto the streets and into the pockets of bad guys. I get that there are unscrupulous doctors and so-called “clinics” in it only for the money. But don’t presume me guilty. I should not feel humiliated because I asked for what I needed.

A friend asked me, “What happens to those in chronic pain if they can’t get the meds they need?”

I had no answer.

I have not heard of cancer patients being deprived of their pain pills. Diabetics are not told, “You have taken too much insulin this month so no more for you.”

Maybe the issue goes back, not only to the invisibility of pain, but to the subjectivity and concept of pain. Maybe the bias is innate in our health care system.

According to a recent study in The Journal of Pain, the annual cost of chronic pain is as high as $635 billion a year, which is more than the annual cost of cancer, heart disease and HIV/AIDS combined.

But where does the money go? Just one percent of research funding from the National Institutes of Health (NIH) is dedicated to pain research. Last year, the NIH spent $396 million on pain research, but $5.6 billion on cancer research.

It is time for the government to realize it can’t have it both ways; with the DEA working to decrease the ability of doctors to give opioid medications to chronic pain patients, while funding for pain research and finding alternatives to opioids remains miniscule compared to other disorders.
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My latest column reposted from: http://americannewsreport.com/nationalpainreport/a-pained-life-the-pill-dilemma-8821321.html

THE CAUTIONARY TALE. It doesn't work for us.

A member of the church came forward this past Sunday to speak about coronary artery disease and his experience with it.  He told his story to remind people about the necessity of not ignoring signs and symptoms.  His experience was a bad one (he came out of it doing well by all accounts, thankfully) and his point very well  taken.

I was envious as I listened to him.  Not of what he went through.  Never.  But of his coming forward.

I visualized myself, or someone else, with chronic pain doing the same thing.  That did not work.

It is not a universal experience, in  terms of having a cardiac problem or history.  Almost everyone  knows someone who does or did, or knows someone who knows someone.

I could not come forward and say, this was my experience and please heed it as a cautionary tale.

Saying "It is estimated that 116 million people live with chronic pain." is more or less meaningless.   The concept of 'chronic" pain is foreign to most people.  Acute pain everyone knows, and 'gets'.   Weeks, then months, then years of pain.  That does not make much sense.  Pain is solvable.  Your sprained ankle goes away, the broken arm mends, the appendix is removed.  If it is a disease, the disease is treated, even if it is a chronic one.  You may have to deal with the disease, take insulin, or undergo longterm treatments, but that is different then "just" having pain.

I sit through choir rehearsal or the church service.  This is very painful for me: the use of my eyes to read, the bright light of the room or the sun shining in the sanctuary, looking up and down as we walk down the aisle singing.  There is no one to whom I can turn and say "I am in so much pain."

Even if there was what can they do?  Maybe a pat on the hand or an "I know.  I'm sorry." or "I wish I could help."  That would be nice.  Honestly it would feel good to have an empathetic "I get it."  How frustrating that might be though.  To say the words but being impotent to do anything.

I am a 'doer'.  It may be my projection, the inability to actively help being so passive as to make words feel worthless.  Of course, they are not.  I would love to have those words said to me.  When they have been I feel an overwhelming sense of relief:  "I am heard."   Another day when I mention the pain, I get an opposite response and learn, anew, that an understanding of it does not mean 'I want to know about it."

If I say "I had heart disease.  This is how it happened, this is what happened to me, and this is what you need to be on the watch for." people listen.  After all, it could happen to them.  If I say "I have chronic pain.   This is why and how it happened." I cannot follow up with "and this is what you need to look for in yourself."  And it is that last part that makes all the difference.

What do you think?