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Was that a “simple focal seizure” I had last Saturday?

March 3, 2012

CPS is a disease that changes… sometimes gradually, sometimes rapidly – in response to the stresses and simulations that the CPSer is enduring. We have member of the CPSA whose pain has intensified, spread, leapfrogged to new regions, involved more parts of the body, and has caused odd events (tics, stabbing sensations, pin prickles, hot flashes for men) that come and go with nor discernible reason. I theorize that the nerve fibers adjoining the defective ones in over “spinalothalamiccortical” sensory path eventually kindle like their neighbors, overfiring and producing these new sensations That’s why CPS spreads so badly the longer you are untreated; the disease just kindles more and more neurons, spreading like a wildfire. That’s what it feels like – a wildfire, jumping across a prairie, burning down the house.

Every member of the CPSA will state the same thing: stress is the great enemy.

Well, I’ve been under such a tremendous amount of stress – primarily financial – in the past several years that it’s gotten to be almost uncontrollable. I’ve tried every approach that you can suggest. The stress drives my pain up, which drives my blood pressure up. Then I worry about the blood pressure causing another stroke or trip to the hospital, which causes more stress, and my pain goes even higher. I haven’t been able to get any handle on the blood pressure with medication, and end up taking higher and higher doses. I understand that the hardening of my blood vessels is the result of my auto-immune disease – and frankly, there is nothing that can really be done for that. So yesterday, after a very bad week of pain, my blood pressure was up at 204/144. That lower one is really scary; it is the number that shows how much your heart must work to push the blood out into the arteries. It should be down at or below 80. I felt immobile, burning, and unable to concentrate. There was just a feeling of dread percolating through me.

So I tried to calm myself by using a form of electronic meditation I’ve developed. I’ve purchased a “music visualizer” for my computer, a system which makes constantly changing images, layers of them, all radiating out from a center source. Steadily growing, united coronas of twirls, swirls, waves, lines, spikes, stars, circles, squares, triangles – geometric figures of all sorts – create a ceaselessly moving, unending mandala, which is matched to the music that is being played. It’s akin to the Joshua Light Show/Liquid Light Show that used to be put on in the psychedelic era, and now, during raves. The program that I am using is very symmetrical, in that it is composed of four quadrants fixed around the central point. But all of the activity in each quadrant is related, and can sometimes be completely symmetrical, or diverse. The program is called G-Force, which I suppose could be a reference to leaving the bounds of Earth, or perhaps to this anime, or perhaps just to the movie about hamsters. Anyway, it’s very trippy.

When I am under a lot of stress worrying, I have been watching the images that this program produces to music by the Chemical Brothers, who are an electronic “triphop”-“techno-trance”,”big beat” duo from England that I respond to. The intricate symmetrical music they produce is ideally suited to the visualizer. I can zone out for 5 minutes, and my blood pressure goes down. The  pain, or the tingling on the left side of my lip, or the blurry-left-eye development, all chill out.

So yesterday I watched the 7 Toccatas of Bach, as played by Glenn Gould, using the visualizer.Perfectly constructed, gloriously balanced, pure symmetry and variety, played as precisely as ever a man did, came to life in front of me, in form, light, and motion. It was celestial. It was even sanctifying. i was transported. Then I heard Jack’s voice from the kitchen: “What’s that burnt toast smell?”

“What was that burnt toast smell?” I wondered. I knew that I hadn’t made toast. Had Jake? My mind began to race through all the things that could be the reason for a “burnt toast smell.” Was the oven on? Was something burning? Then I began to think about all the reasons that something might be burning in our house. Had one of Jack’s cigarettes butts from his occasional indulgences lit something? Was something burning in the basement? Had dryer lint caught fire? Perhaps there was something burning inside the house itself, in the walls. Perhaps the electrical system had shorted somewhere! After all, the house is 95 years old, and some of the wire are old, with disintegrating cloth insulation. Was there a fire started by an electrical short?!

My heart began to race; my pulse to pound. It was going faster and faster – I was sure that a person standing next to me would be able to hear it. My breathing become faster and shallower; I realized that I must be have an anxiety attack (something I had never had before). I called for Jack when my left hand began to flap uncontrollably. I wondered why my limbs were moving on their own, jerking an bouncing. “Am I having an epileptic fit?” raced through my head. “Have I developed epilepsy? Is this what it’s like for Doug? Am I experiencing even more damage to my brain?”

He came down, unimpressed. I was getting myself worked up, he said. He tried to get me to stand up from my chair; I almost fell down, and had to ask him to hold me up.I was still panic-stricken. “We have to talk,” I kept saying, “about what we are going to do.”  He was irritated by the whole thing – I had interrupted him, for some neurotic state of distress that I had created. “Here.. Sit down on this bench,” he said, He let me go.

But when I tried to walk, my legs and my arms began jerking in uncoordinated random movements, outside of my control. They weren’t violent motions; they were not sweeping or forceful. But they were uncontrollable, and they were in non-calculated, sometimes opposing, directions.They were confined to my stroked side. I fell right down on the floor. The left side of my head grazed the bottom of a bookcase, and I thought, “Well, that tears it. Even more brain damage.” But as I lay there,flat on the floor, my panic began to die away. I began to feel at peace and increasingly still. I realized that my head was okay, and I hadn’t hit the bookcase very hard, or injured a limb falling. Jack got a little lap-robe and spread it over me, then sat on the bench looking down at me. “Please, sit beside me; cuddle me. Comfort me.” I was shaken and a bit scared. I think I had some kind of seizure.”

“I’m not going to get down on the floor, said Jack. He looked weary, and fed up, as if there were no reason to give credence or concern to this incident. You’re not having a fit. You’re not having a stroke. You’re just upsetting yourself. I don’t have for this.Are you alright? I’m going back upstairs.” He got up and started walking up the stairs. “Are you going to talk to me about this?” He just kept walking. “Forget this drama. I have to take care of the fuckin’ book.” By that, he meant the Quickbooks entries he was working upon.

I was very weak, and it took me some time to rise from the floor. I had too grave concerns: a very real neurological event that I new I had experienced, and my husband’s reaction. I realized that Jack did not really believe me. He thought it was a sort of psychosomatic or neurotic unconscious acting-out, a sort of spoiled child’s dramatic bid for attention, a type of tantrum. I was far more concerned with potential brain damge.So I sat at my desk and did a bit of googling on seizures.

The description that comes closest to the event I experienced is that of a simple focal seizure. I remained conscious and able to focus. It was truly only limited, and passed rapidly The trigger was probably the visual images of Bach, extremely symmetrical and precise, yet constantly changing, which I stared for 20 minutes. That calmed me, because I realized that all I had to do to avoid another was avoid staring at the visualizations of Bach. The ensuing week has not dimmed that calmness, either. Although Jack does not realize it, his statement to me as he walked up the stairs was exactly on point: “Forget this drama. I have to take  care of the fuckin’ book.” My illness, and the fear it creates that binds me, is the drama. The work to tell the story of Central Pain Syndrome – that’s the “fuckin’ book.” I have to take care of.

So I sat there, at my desk, and wrote. Later, I spoke again with Jack. He’d done some googling of his own – about Central Pain Syndrome itself. He found Dave Berg’s excellent CPS site . Perhaps sometimes hearing it from a loved one isn’t enough. He truly seemed to both understand the disease, and therefore feel more compassion towards me, because he had read Mr. Berg’s discussions. “Whatever it takes, ” I thought, “I’ll take it.”

I spoke with Doug this week, and he explained to me in detail his wonderful plan for fund-raising for the Central Pain Syndrome Foundation when he moves to Vachon Island, near Seattle, this June. He had a seizure himself, later in the week after our meeting. It is tragic that there exists a disease that strikes you down because you have had too much fun socializing, or laughed too much with your friends. In spite of my deficits and difficulties, I am doing far better than Doug – or than most of the other members of our group. Last night I spent several hours on the phone with Scott, whose wife has become one of the Board members in charge of getting our non-profit. off  the ground. Scott is a professional web designer, and his ostensible reason for calling was to discuss the putative website of the CPSF, But we must have spent 2 hours talking, instead, about what it is like to be a person with Central Pain Syndrome. We talked about hoe we got it, how it feel as it changes, whether it is spreading or not, and how we cope. We talked about how people – especially doctors – respond to us, and whether they show any sense of comprehension about the Syndrome and its pain levels. We also talked about the people that hurt us the most with their disbelief and callous, even cruel condemnation of us: members of our families.

Scott’s story puts mine in extreme perspective. He is only 34. When he was 31, a few days after his first child was born, he underwent a procedure to relieve a venous malformation near his thalamus. It was portrayed by his neurosurgeon as a simple operation, nothing to worry about – at least as simple as a craniotomy can be. He awoke from surgery paralyzed on his left side. He had lost all tactile sensation on that side as well, yet was burning in agony. Scott’s life as a skier, hiker, and camper, a young man with a thriving career, a marriage to the woman he totally adored, and a brand-new father had been completely upended. He now faces another 50 years of unending, excruciating misery.

I cannot imagine that. I have the same pain, yet I truly cannot imagine being a a new parent, eager to hold your firstborn, and yet so physically limited in my ability to care for her that my own disability scares me. It is even worse to know that your child may never know who your are without the heavy cloak of tormenting pain draped over you, as weighty and immobile as the lead wrap that is loaded onto you at the x-ray technician’s. I am certainly not the most cheerful and placid of mothers; I scream and I cry, the potential for outbursts increasing with my pain levels. But at least Jake has some idea of what I was like before this. I even get the sense that he half-expects me to snap back to my “old self” with the rapidity and surprise that the stroke occurred. But Rachel, Scott’s daughter, may never have a day in her entire childhood when she doesn’t see her father’s face drawn in a paroxysm of torment at unseen hands.

It isn’t a question of learning to accept affliction at the hands of a God whose ways we can’t hope to comprehend, It’s a question of whether or not medical science can actual solve a problem of pain that this man, and every other CPS sufferer, has.This illness is not a supernatural judgment, or a spiritual test. It is a problem caused by a fault in biology. Whether or not medical science can actually solve or remediate this problem is unknown, at this point. It’s unknown not because the problem is unsolvable, but because medical science has not yet taken the time or energy to actually focus on it, and find treatments or cures.

That is what the Central Pain Syndrome Foundation is being built to force: the recognition of, research into, and respect for, the unimaginable yet undeniable problem of Central Pain.

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