A year after a grand mal seizure left me convulsing on the floor, I’m still finding my way back into everyday life.
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It has been more than a year since the seizure, and although I have managed to assimilate the memory of it, the medication for it, and the fact that it could happen again, I still haven’t made peace with the world. I hate the word “seizure.” I hated it when I was one of the large majority of Americans who have slipped through life unvisited by the demon, and I hate it now that I must count myself among the 10 percent of our population who have had at least one seizure.
It’s a savagely loaded word—one that stands out even in the heavily loaded lexicon of medical science. Nothing silences a room like the word “seizure.” Dark and sinister connotations fairly rattle the walls upon its mention. Try as a medically conscious person might, he can’t help but have thoughts of irreparable brain damage and demonic possession. Put it this way: One of the more common synonyms used for seizure is “fit.” So I was actually somewhat mollified when the doctors at the Englewood Community Hospital in West Florida informed me that what had sent me to the floor of the condominium the night before in a shuddering, retching lump was a generalized tonic-clonic seizure disorder—otherwise known as a grand mal seizure.
Lousy enough luck that I’d become ill on our annual boys-only vacation to the Texas Rangers’ spring training camp. Worse luck by far that I had been stuck by one of the most mysterious and misunderstood afflictions in neurology—especially so in my case, since I had no history of seizure, no trace of epilepsy or anything like it in my family, and I hadn’t suffered a bop on the head since an auto wreck in college. According to the Epilepsy Foundation of America, about half of all episodes of seizure are idiopathic or have no discernible cause. (The word “epilepsy” also doesn’t taste very good on the tongue, but I will have to deal with it only if my seizure recurs. Epilepsy is the umbrella term for recurring seizures.)
A seizure may not be brought on by demonic possession, but that is certainly what it fees like. This much I remember: My four friends and I were hanging at the condo one evening, getting ready to go to dinner. I had felt punkish throughout the vacation. Since we had arrived, I had suffered intermittent fever and chills, slight nausea, insomnia, and a strange sensation of distraction. I had blithely chalked this up to some new strain of Florida flu or stress. (My buds and I have been doing this spring training trip for half a dozen years, and since I had quit drinking the year before, this was my first spring foray clean and sober.) We were watching a Bruce Springsteen video on TV when a wash of intense chills swept over me and I began to shiver involuntarily. The shivering turned to shuddering, and an awful prickly sensation began to creep up my extremities. My chest and throat thickened and my heart began to rampage. A nagging sensation of anxiety gripped my gut.
I called out to my friend David for help. At first he thought I was kidding, but when he saw the fear in my eyes he realized something was very wrong. As David grabbed hold of me, my legs went rubbery and I collapsed in his arms and we slid to the floor. That anxiety in the gut—what I later would learn is an “epi-gastric effect”—had now turned to a churning welter. According to my friends, my body stiffened and then began convulsing. My breathing became shallow and labored. My skin turned clammy, and I was sweating profusely. My jaw clenched shut and my lips turned blue. I lost consciousness almost immediately and I have no memory of what else happened in the condo. I came to just as I was being put in a CAT scan tube at the hospital.
From what my friends told me, they were frightened and not sure what they should do. (One of them, Eric, called 911, while David held me.) In fact, there is not much a bystander can do except make certain that the seized individual’s convulsions do not throw him against the furniture and the other objects around him. He should be kept on his side to prevent him from biting his tongue or choking if he vomits. It is a natural instinct but not a good idea to maintain contact with the seizure victim, because many seizures involve general hypersensitivity to stimuli and the touch of another person may only intensify the symptoms. Seizures look a lot worse than they really are, and they are rarely fatal in and of themselves. They are mostly painless and generally very brief. I was a little sore afterward and a little disoriented, but otherwise I could honestly tell my buddies that “it wasn’t as bad as I’m sure it looked,” to which one replied: “Yeah, I don’t see how it could have been.”
My friends thought it was the Big One, which was understandable since a grand mal seizure can look very much like a heart attack or a stroke. But a seizure is caused by a completely different set of physiological dynamics. The neurons that carry messages to and from various parts of the brain become overloaded—not unlike a surge in an electrical power system. The circuit shorts, and the messages the body gets from the neurons cause abnormal behaviors—fainting, convulsing, stiffening. In many cases, the seizure will start at one point in the brain—the temporal lobe is a frequent point of origin—and then spread. In other cases, like mine, the power surge occurs in both hemispheres of the cortex, producing all major seizure symptoms: muscle contraction and rigidity, convulsing, severe heart palpitation, and complete or partial blackout followed by a period of disorientation—the so-called twilight effect.
Lesser forms of seizure include petit mal, now called “absence seizures,” in which the victim suffers a brief mental absence. He goes blank or “out to lunch” for a moment and then returns to ordinary consciousness with no memory of the episode. Others around him may not even realize what has happened. Petit mal seizures are particularly common in children, who account for about 22 percent of the 125,000 new cases of seizure reported each year in the United States. Most children’s seizures are brought on by high fever. In fact, most people have had some form of mild seizure and don’t realize it. Have you ever had a sudden tic in your arm or leg when falling asleep? That’s one of many kinds of myoclonic seizure, which are sudden and often isolated tics in the body.
There are myriad types of partial seizures that emanate from one portion of the brain and do not spread through the entire organ. Their symptomatology varies. Complex partial seizures send the victim into a trancelike state during which he repeats particular movements—smacking his lips, tugging at his clothing—and then returns to consciousness with no memory of the episode. Simple partial seizures can manifest a range of symptoms, some of which may be similar to those I experienced, except that the victim remains conscious throughout the episode.
Friends and relatives have asked me exactly what an oncoming seizure feels like. The best comparison I have come up with is that it’s like being startled by a loud, unexpected noise. The heart leaps and the viscera are seized. Of course, when the circuitry upstairs is working property, the effects quickly ebb. During a seizure, however, not only do those effects persist, they multiply until you feel as if your entire torso is going to explode. The fear, as it first creeps and then barrels up the extremities and the gullet, is excruciatingly intense. It is not pain that makes a seizure so horrific. It is the feeling of utter helplessness.
Seizures in which the pathology can be pinned down almost always involve an injury to the brain—an inherited malformation, a tumor, some cranial insult. The damaged portion of the brain, like a loose electrical cord or plug, cannot maintain even electrical flow, and given the right trigger, it shorts out. Triggers vary wildly. Some involve metabolic imbalances; others result from the introduction of or withdrawal from drugs. Many seizures are simply spontaneous. Among the more exotic “fits” are the so-called reflex seizures that external sensory stimuli incite: Photosensitive seizures result from exposure to bright, flashing lights or even certain colors. Audiogenic seizures may erupt in response to particular sounds, including music. Some audiogenic seizure victims may respond only to particular musical compositions. (It was widely reported recently that one person with epilepsy would seize upon hearing the voice of Entertainment Tonight co-anchor Mary Hart.) Very rarely, immersion in water can instigate a seizure; eating, reading, writing, and even thinking can trigger an episode.
By the day after my attack, the neurologists had pinpointed a small spot on my CAT scan on the right side of the brain that appeared to be an infarct (scar, dead tissue) and was most likely old. While the CAT scan showed no evidence of tumor, hemorrhage, or serious infection, the doctors decided to run an MRI (magnetic resonance imaging) on my brain to make certain.
MRI technology has been hailed as one of the most significant diagnostic breakthroughs in medicine in recent years. Employing magnetic fields that measure response from hydrogen atoms in the body tissue, the test can “see” the exact nature of lesions and other abnormalities in any part of the body. It revealed mostly good news. The scarred tissue did appear to be old, and, again, no other telltale sign was detected. No real big deal there—most of us carry around a bit of scar tissue in our brains, just as we do on our elbows and knees. With seizures, though, it all depends on where it is located.
This led me on a futile memory search of every head trauma I had ever suffered and to larger questions: If this microvascular infarct was the cause of the seizure, why had it chosen age 42 to manifest itself? Does this infarct mean I could have another seizure?
Anti-convulsant medications have become quite sophisticated, but they are not always totally effective, and the idea of traipsing through ordinary life—working, eating, sleeping, driving—suddenly became a source of fear and worry. It’s like walking around with a piece of wired plastique in your head and not having the slightest idea when the stuff will detonate.
The doctors in Florida put me on 400 milligrams a day of the anti-convulsant Dilantin and told me to return to Dallas and see a neurologist there. Once back home, I consulted a longtime friend, Hunt Batjer, who happens to be a neurosurgeon. Hunt reviewed my medical records from Florida and agreed that the spot on my MRI scan was an old infarct, but, like any doctor, he wanted his own snapshots.
The second MRI was superior in detail to the one taken in Florida. It revealed the same infarct and another pesky little mass that could have been involved in my seizure.
“You have a parasite down in there,” was what Hunt said. A parasite? I was stunned. I had heard of stomach and intestinal parasites, but I’d never heard of one in the brain. Hunt went on to explain that the parasite was an epidermoid or a cysticercus—basically a microscopic worm—that had been associated with some seizures among Mexican nationals.
“You spent much time in Mexico?” he asked. I began to wonder if the solution to my medical mystery rested in the history of my childhood bumps on the head or in my adult wanderings about Tijuana and Puerto Vallarta.
So much for the bad news. The good news was that Hunt believed the parasite—or, most probably, the long-expired remnants of it—was not in a location to incite seizures. I suppose that if you have to have a dead worm in your brain, it’s best for it to be in a harmless place.
My seizure remains idiopathic. I continued taking 400 milligrams of Dilantin a day until May of this year, when another neurologist recommended that I gradually wean myself from the medication. I must say that was sweet music to my ears. While Dilantin is a powerful and effective anti-convulsant, it can produce a surfeit of unpleasant side effects In addition to drowsiness, gastric upset, and dizziness, it can cause an anxious feeling not unlike the warning signal of an oncoming seizure. Late last December I did have a minor scare. One afternoon I felt a tamer version of that same set of symptoms—chills, trembling hands, and an accelerating heartbeat. I was home alone at the time, and I decided not to tempt fate. I called 911. No seizure ensued, and the conclusion at parkland Hospital’s emergency room was that I had probably suffered a slight Dilantin toxicity.
I am still dropping my Dilantin intake (too sudden a withdrawal could bring on a seizure) and have so far had no symptoms of another seizure. In fact, the odds are long that I ever will. As I have eased the medication out of my body, so have I gradually been able to distance myself from the memory of the seizure. It is far from the constant preoccupation it once was; it’s now more of an otherworldly experience that occasionally comes back to me. I’ve resumed everyday life—working, driving, exercising, and socializing. For a long time I was scared of public places (if I’m going to have another episode, I would prefer it to be in private), but now I’m back browsing in the mall, going to concerts and movies, and participating in life in every way without the nagging fear of “What if right now?” Unlike other serious illnesses and accidents, a seizure has no closure—no bones mended, scars healed, or sutures removed. There is a spectral quality to my memory of the seizure, which is why the word still gives me pause. The seizure came and went. But it wasn’t and never will be cured.