"But pain…seems to me
an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the
pain?"
Lois
McMaster Bujold, Barrayar, 1991
I always had a
very low threshold of pain. Since my MS diagnosis, I am learning, much to my
surprise, that I can live with pain and still find joy in life. I am learning
to coexist with the scary pain monster.
One day last year, I was happily going through my morning routine, washing my
face and brushing my teeth with an electric toothbrush. Suddenly I had a
blinding pain. It felt as if I was being electrocuted. There were shocks of
lightening bolts jumping through my mouth. I dropped the toothbrush and after
what seemed like an eternity, the pain resided. I was shaken, I had trouble
understanding and tears were streaming down my face. I did not know what to do
next.
I thought I was nuts. How could I explain this? So I went to the doctor, took a
deep breath to hide my embarrassment, and told him the fantastical tale of the
electrical storm in my mouth. I braced myself for his response. I was sure he
would realize it wasn't possible to have that much pain. It was all in my head
(which it was). Then he would send me away to an asylum.
Without batting an eye, the doctor seemed to know what was wrong. He turned to
me with sympathy in his eyes and said it is Tic Douloureux.
It's what? Tic Douloureux? It almost sounded cute the way he said it, or maybe
even sexy with the French pronounciation, but my new pain monster is named Tic
Douloureux. It is also known as Prosopalgia and Trigeminal Neuralgia (TN), and it has an ominous nickname,
"the suicide disease."
He told me a little about the condition. Then I read an article saying TN is
"universally considered to be the most painful affliction known to medical
practice."* Surely there are cures or treatments that make it tolerable,
but no such luck. There are treatments that work some of the time for some of
the people, but no panacea. So what do I do now?
A friend who suffers from migraines once told me she could think her way out of
the pain by focusing on the headache. She said it did not work all of the time,
but it did work. Is that something that might reduce the pain of a TN attack?
My caregiver found a NYTimes article: My Pain, My Brain that says it just
might. Actually, this technique is actually watching brain activity during a
pain episode and consciously reprogramming it to reduce the pain.
Melanie Thernstrom tells of a functional MRI (fMRI) being used in a Stanford
study hoping to develop a technique that teaches people to control their
brain's response to pain. Pain causes the nervous system to re-wire itself, and
this study aims for the patient to redirect that wiring. It sounds a bit
sci-fi, but in the most positive way. If we can learn to control our reactions
to pain, then we can all better appreciate the good things in life and find our own version of joy!
Notes and links:
Thernstrom's article was published in May, 2006, so they may have completed the
study. Wouldn't it be great if the neuroimaging study found ways to help us
reduce severe pain? She was writing a book on pain. I found this reference, but
did not find the book.
Untitled
on Pain by Melanie Thernstrom
Published
by Farrar, Straus & Giroux
ISBN
0865476810, 9780865476813
Here are some links for pain management:
International
Association for the Study of Pain (IASP)
Living with Chronic Pain from Medicinenet.com and WebMD
New Coping Strategies 8-week class at Stanford, Living with
Pain
Lifestyle
Techniques ABC video clips
Controlling acute pain
Managing TN facial pain
TYPES OF PAIN
Cancer
pain - 3 types, but it talks about more than 3
Two major types and why it is important to know the
difference
Links to pain sites from NY Online Access To Health
