Seizure!

I’ll be honest with you and with myself. I poked my brain tumour with a stick today, and it came back and bit me on the arse.

I had my first epileptic seizure for two months while out on a club run with VC Revolution.

I already know pushing it too hard on the bike can bring on seizures. And I already know that while I’m taking anti-convulsant medication, those seizures are still going to happen if I absolutely thrash myself.

I felt in great shape today, even 50 miles into the ride. So when a sprint for a little bridge over the A120 got started, I got carried away. I lifted out of the saddle, span my legs like crazy and, for about 60 seconds, just went for it.

I was delighted with my third place over the line, but it wasn’t long before my body reminded me exactly why I’m not supposed to do that anymore.

Within seconds I felt a familiar dropping away of consciousness on the right hand side of my head. A sudden vacuum opened up, a warning sign that a seizure is underway and I need to get off the bike pretty quick.

I’ve got my technique down now. I calmly, but quickly, pull the bike to the side of the road, unclip and climb off. I lay the bike down on the verge, then kneel down next to it sitting on my heals. Then I wait for the seizure to begin in earnest.

A kind fellow cyclist who knows about my condition (and, embarrassingly what brings on seizures) stopped with me. He was very calm, just told me to take my time and I was grateful to have him there.

Here’s what my seizures are like:

The feeling of emptiness on the right hand side of my head turns into a numbness, perhaps a tingling, that emanates from the right side of my jaw.

(The tumour is actually on the left of my brain, but its effects are felt as a mirror image. Roughly speaking, the left hand side of the brain controls the right side of the body, and vice versa).

The numbness quickly spreads down my neck on the right side, into my trunk, right arm and leg. It’s like there’s nothing there, just weakness and uselessness. It’s like when you stand up too fast and the blood rushes from your head. But only on one side, and for minutes rather than seconds.

I lose the power of speech. I know what I want to say, but my mouth just won’t utter the words.

What does come out if I try is garbled, upside down. It’s uttered through a mouth that won’t open properly, my tongue feels too lazy to let words out.

I also get snippets of childhood memories from nowhere, usually lyrics from songs I’ve long since forgotten. (And when the seizure is over, I can never remember what those songs were).

By far the weirdest thing is that I’m completely conscious of everything happening. It’s as if the left of my brain is watching with amused interest, as the right goes into free fall.

On the left I’m saying: there goes the numbness, now here come the song lyrics, yep, there they are, my wife is going to be annoyed, this means more months before I can drive again, must tell the doctor about this one, feels milder than usual, god, I feel like a right tit in front of these guys.

Slowly, over a couple of minutes, the numbness ebbs away. I test a few words, but they don’t come. I feel able to stand, then get back on the bike, I pedal off. Within a minute or two I’ll be able to speak again. It’s over.

Today’s seizure was very mild. The worst ones have included involuntary movement of my arms and neck, dribbling from a downturned mouth.

But the seizures are not the tumour. The tumour won’t be made any worse by having more seizures; they’re an outcome of the lump, not the cause of it.

Three different brain experts have given me three different explanations for why it happens when I’m working hard on on the bike.

One says it’s because the blood has moved into my legs and heart to power my muscles. Less blood in the brain means less functional ability, so the tumour has more effect on the areas of the brain it presses on.

Another’s version is that a build up of lactic acid and other junk from overworked muscles is reaching the brain, while less oxygen is getting through, bringing on the seizures.

Another theory that it’s all about raised body temperature. Babies frequently have mild epileptic fits if their delicate brains get too hot. And I did have a seizure after a sauna once.

Whatever brings it on, I got a well deserved reminder today that I just can’t do what I used to do.

A diagnosis like mine changes you both mentally and physically. While the tumour isn’t yet malignant and isn’t yet a danger to my life, it looks like I’m not getting off scott-free either.

I have to remember that when some cyclists shoot off up the road, I’m no longer supposed to chase them. When I start to let my ego get ahead of my common sense, I’m putting myself at risk of a seizure.

And that’s just not fair on the cyclists I go out with. Sorry guys. I really will try not to let it happen again.


3 Comments

  1. Ahh, Gid, makes me so sad to read yr blog sometimes.
    But..went for a trail run today, around Saffron Walden, just a quiet, peaceful run through lovely essex countryside. I ran with a “virgin trail runner” just to keep him from getting lost, and we chatted away, it turns out he’s got a 1 year old daughter, Polly, and I couldn’t help but think of my Grand-children and how nice that must be.
    However she’s not walking yet, and there were problems, she has PWS syndrome, a 1 in 25000 chance of a genetic defect, and again you just wonder, why? but these things happen I suppose and you just have to deal with it as you are doing.
    Anyway, I loved my run, it was slow, we tooks wrong turns, but it was just lovely to be out, and I hope the same applies to you, leave the sprints to those who can, just enjoy the ride.

  2. I am doing some research on a role where I have to go into a seizure. This is the most detailed description of a seizure that I have come across so far. You are an inspiration, I am so glad that you refuse to let diagnoses stop you and become a victim while also letting your ego go. Thank you.

  3. Gideon
    My brother has a low grade glioma, grade 2. Your postings help me understand all that he’s experiencing. Thank you so much for these blogs. Continued success, prayers, new treatments, and whatever it takes to get through battling a brain Tumour.
    Gail

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