When people hear “seizure”, they usually think “grand mal”, which is a kind of seizure comprised of loss of consciousness and muscular rigidity/shaking, to name a few symptoms. Until late October 2004, that’s what I thought too, and indeed my tumour revealed itself via a massive seizure that culminated after two hours of all manner of bizarreness in loss of consciousness, shaking, and even cessation of breathing. Good thing I was in an ambulance by then.
But seizures can be all manner of brain dysfunction, from a brief “vagueness”, to smell/taste hallucinations all the way up to grand mal. People often ask me what my seizures are like, so I’ll describe them here. They’ve changed over time, but usually consist of an array of symptoms in any combination and intensity.
Prior to onset, I usually—but not always—sense that they are coming. Twice now (as of 1 January 2005) I have not sensed an imminent seizure, and in both instances I was reading text. On both occasions I was suddenly unable to make sense of the word I was looking at, despite reading it over and over. I could clearly see the word and the letter comprising it, but simply could not discern its meaning.
More typically, I sense an imminent seizure in a way that is difficult to describe. I simply sense it coming, and start devoting attention to feeling it until I am sure. I experience a vertigo-like feeling and it becomes difficult to maintain a train of thought. I can maintain for a time if I have to, but prefer to go and lie down. I can walk and communicate, although I usually limit myself to brief sentences. It may be that this is all I can manage.
By this time I will be having physiological symptoms, if they did not start prior to the first mental sensation. An erection is the most common feature, and often heralds an onset. I also usually experience very busy bowels, to the point that sometimes I have to go to the toilet instead of lying down, or I may have to get up and go to the toilet. I often start breathing heavily and have to remind myself to breathe normally. I frequently hallucinate tastes or smells, and am usually unable to differentiate between the two once the seizure has passed. Sometimes my neck becomes very stiff feeling. The last symptom is often a cold sweat all over my body. Throughout, I can verbally relate my symptoms with some difficulty.
Afterwards, I frequently have a variety of memory anomalies. Recent memory—such as the exact sequence of events of the seizure—is often impaired. I also frequently experience a sort of random partial memory recall, where I start to recall something that I think is immediately relevant, but I cannot quite grasp the memory or what I think it relates to. I believe that a random memory is sort of “cross-wired” to the present time, making me think it relates to something current. I am getting better at ignoring those.
Seizures are often followed by extreme fatigue, and I nap for hours afterwards. Sometimes, however, I can immediately return to what I was doing prior to the seizure with no ill affect whatever.
The frequency of these events has varied throughout. It should be nil, but the type and dosage of anticonvulsants has varied, and the biopsy also triggered renewed seizure activity. Recently I have had one to two seizures daily, but we are increasing and switching my anticonvulsants in an attempt to eliminate them entirely.
I don’t drive anymore, as I don’t feel sharp enough and in New South Wales it is banned for three months following a seizure. But I will attempt to use driving as a metric to explain the intensity of my seizures. In an emergency, I believe I would be capable of driving to our neighbouring hospital, which is about a two-minute journey through quiet streets, under the strongest seizures I experience. It would take enormous effort, but I believe I could drive there safely. Beyond that, it would have to be one hell of an emergency.
“What is a tumour?” Well, I’m far less clear on that than I am seizures since I don’t directly experience my tumour, but I’ll give it a go.
A tumour consists of normal human cells that have “gone silly”, to paraphrase my neurosurgeon. They no longer have a lifespan or a useful purpose, and all they do is divide. In perpetuity. And that’s the problem; growth is exponential, so the cells not only compete for nutrients, they compete for space. It starts with a single cell that divides into two. If it does so each day, that cell will be 2^30—around a billion—in a month and comprise a tumour of around a centimetre.
http://www.tabexperts.com/CancerGrowth.htm is about breast cancer specifically, but may be applicable.
Several people have asked how my sex life is. If my experience is any indication, in emergencies the body diverts sexual energy to healing. Entirely.