It’s All in My Head (or maybe my spinal cord)

My neurogenic pain has always been a mystery to me.

I first felt a tingly sensation in my right foot during stop-and-go traffic in rush hour. I attributed the unpleasant feeling to an ill-fitting shoe. Except… my shoe fit fine. And why was I tingly only in my right foot? Why not my left? Who ever heard of going all tingly from pumping the gas and the brake?

I asked these questions of my boss, because my boss used to be a nurse. I figured she’d know what it meant. In retrospect, she probably did know what it meant. That must have been why she fired me.

The next time I asked about a tingly sensation, the story was even weirder. My fiancée had been reading me poetry in the bath, when suddenly that tingly sensation shot right up to my bra line. When I tried to get out of the bath, I dropped like a rag doll. For no apparent reason, I couldn’t walk. My guy had to help me to bed. In the morning, I was just fine. Why had I been tingly in the bathtub? Why was there that scary moment when I couldn’t walk?

The community health center doctor countered with questions of his own. Was the bath warm?

Of course the bath was warm.

Do you have insurance?

Was I in a community health center? Of course I didn’t have insurance. I’d just been fired.

The doctor wrote me a prescription for B vitamins. “I’m going to be very careful with how I write this up. I’m going to say you have a vitamin deficiency. You don’t want a pre-existing condition. When you do get a job with insurance, you’ll want to go to a neurologist.”

Did I want to go to a neurologist?

I guess I didn’t. That discussion took place in 1990. Even with health insurance, I didn’t make it to a neurologist until 1995. In the intervening years the funky experiences with pins-and-needles sensations kept piling up. There was no apparent explanation for my pain. All I knew for sure was that it wasn’t caused by a vitamin deficiency. Taking B vitamins hadn’t done a thing.

What drove me to finally see a neurologist? Sheer curiosity. It was weird, just plain downright weird, to experience pain without any apparent cause.

Once again, I told my story. This time, I would get an explanation in return. There were measurements I’d never dreamed of that revealed symptoms I thought could never be quantified. The pain I experienced in my legs did have a source. Multiple sources. My MRI showed lesions in my brain. My lumbar puncture showed lesions in my spinal chord. Oddly enough, the doctors could tell I felt tingling in my legs because of what I couldn’t feel; vibrations from a tuning fork.

It was all very validating, these proofs my pain was real. Not so long ago, a person like me would have been labeled a hysteric. Instead of being labeled a hysteric, I was diagnosed with multiple sclerosis. That’s progress. But at the end of the day, and more often than not, at the beginning and middle of the day as well, I am in just as much pain as my predecessors, the hysterics.

I’ve had enough. I am ready for more progress. Science has determined that my pain is real… by now science ought to find a way to get rid of it.

A few weeks ago, I happened to click my way to a four minute TED talk in which a researcher proposed to do exactly that. http://blog.ted.com/2008/03/25/christopher_dec/

Christopher de Charms uses the MRI to do more than document the existence of pain; he has his clients climb in the scanner with virtual reality goggles, and interact with their pain in real time. They can select the portion of their brain lighting up with chronic pain; and apparently they can be trained to release their own opiates to counteract it. By controlling their brain, they control their pain. DeCharms reports a 44-64% decrease in chronic pain patients. I want in, unless that means I will be decreased by 44-64%.

There were many issues a four minute TED talk can’t cover. I wondered if seeing a portion of my brain light up with pain would in fact make my pain more pronounced. And once I did see which part of my brain was active when I was in pain, how, exactly, would I release my opiates to sooth things over?

To pursue the matter further, I ordered and read DeCharms1998 book, Two Views of Mind: Abhidharma and Brain Science. In each chapter, DeCharms chats with Tibetan Buddhist teachers to deepen his understanding of the mind in Buddhist philosophy. I can see how his research of their study of mind led him to attempt to transform the Western study of the brain. Buddhism is based on systematic observation of the subjective; for generations, Buddhists have been observing the mind from the inside. As a practitioner of western science, DeCharms has access to the technology to visually access the inside of the brain; he recognizes that the Buddhists have the skills to know what to do once you’re there. From what I’ve learned in DeCharms’ TED talk, this appears to have been a fruitful collaboration.

I will be the first to admit that the pain I experience is not at all useful. It’s a misfire. My brain (or my spinal chord) is screeching PAIN PAIN PAIN. I’d love to teach it to sing a different tune. If crawling inside an MRI machine while wearing a pair of virtual reality glasses can do that, I want to give it a try. I value western medicine for proving my pain is real. I’m more than willing to value eastern medicine if it can help me make that pain go away.

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