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Friday, October 1, 2010

That First Seizure Part 2, Diary update

This was not going to stop by itself, it was getting worse, and I needed help.

  Tracey was on the phone inside. I banged on the window and soon Tracey came out, Christian as well. I must have looked a sight; flushed, sweaty, dirty, with one arm flailing about as I sat there, banging the table and the arm of the chair. Of course, Tracey immediately knew this was not some muscular thing; that it had to be a stroke or something similar. She called an ambulance and she and Christian tried to pacify the arm, to no effect.

  At that time I was quite strong physically so it was no easy task, and I could find no way to cooperate in taming it. I did not drink water as I didn’t know if that was a good idea. Now, I think it would have been – if only to cool my system down, but at the time instinct said no – it may complicate treatment.

  The ambulance took some 20 minutes to come – an unusually long time in a town the size of Armidale, I thought, as my agitation increased and the strength of the seizure also did, creeping further and further up into the shoulder and neck. Finally, the ambulance arrived, and the paramedic team was totally perplexed. If I were having an epileptic seizure, then it would have been clear what to do.

  None of them had seen someone fully conscious experiencing what I learned later was a focal seizure. They put a cannula in my left wrist and we waited a little longer.

  After some time and no change in what was happening – the thrashing around of the arm, the strength of the muscular spasm [which was very tiring for me!] - I walked to the ambulance and we went to Emergency at the hospital, just 5 minutes away.

  Oddly enough, walking to the ambulance felt better than sitting in the chair, and seemed to settle the spasms a little. I felt such a grot – dirty, sweaty, unkempt and disorientated, arm waving uncontrollably. I must have looked quite a sight as they wheeled me into Casualty.

  A doctor saw me almost immediately – this isn’t one of those recent horror stories of people waiting half a day for emergency treatment. The problem was indecision. For almost two hours I lay with my body in spasm. I guess they were hoping the seizure would stop before trying to tackle it with drugs.

  It was absolutely exhausting for me. The only thing I can compare it with is having a tomahawk placed in the right hand and being told to chop down a giant tree with it, and not to stop chopping for one second. There was no brain command getting through that said 'STOP!'

  At last, with spasm now spreading further and further, it was decided to use the cannula that the ambulance officer had hours before inserted into a vein, to inject Clonasepam into my system.

  The effect was virtually instantaneous. The seizure simply stopped as if a switch had been turned off. I doubt that anyone who hasn’t experienced something similar would understand, but the old saying about how good it feels when you stop beating your head against a brick wall certainly came to mind.

  I can only imagine what a sight I looked – though right then I couldn’t have cared less. But it certainly proved one thing. Whatever it was, it was neural – it was brain malfunction and nothing to do with the rest of my body except in its effects.

  An immediate CT scan was done to see if anything could be observed going on in my brain cavity. If I recall correctly – and I’m hazy on this – I think the person doing the scan said that he thought there seemed to be some small irregularity in one part of my brain. Perhaps he had a clearer idea than he was telling me, but if so he wisely kept it to himself. He said that it would need an MRI in Tamworth as soon as possible to get a clearer picture.

  Tracey knew more. This was not her first experience with such things by a long shot, but wisely, she said nothing to me at the time.

  I was then taken off to a ward where I could clean up, shower, and rest, change into the clothes Tracey had brought for me to face the doctors with the results of the scan the next day – Friday. I think I slept well. I was pretty exhausted, but really had little idea what had brought on the seizure. I was not thinking brain tumour. Or even if it had crossed my mind, I was not thinking of malignancy. In fact, I felt more or less normal, as if it had all been a nightmare and I was now awake.

  Why did I not think the worst? Here I have to tell another short but important story. Roll back a decade, almost exactly.

Diary update

Physiotherapy continues to be a fascination process. Getting my right arm to do what my brain really wants is a challenging task, but well worth pursuing, especially now that seizures are, for the moment at least, fading into the background. A simple task, like reaching from one side of my body to a particular spot on the other side, requires intense concentration. I strain to do what Kaylene tells me, sometimes going red in the face with the effort. Ingrid's Eilish, now a couple of months old, is no doubt doing much better! But some lost muscle is starting to build in the triceps and biceps, and the palsy effect is a little more controllable. Stay positive! [I tell myself....] There is much to be positive about, even with that troublesome increase in blood pressure.


  1. What an amazing start to your journey....I would have thought, being completely ignorant about tumours, etc, that your symptoms would have started slowly, gradually…little things you ignored but look back at now and see were warning signs. But no – one big bang, so to speak. Wow. Should one get excited about this? I guess not. So I am sorry if I sound inconsiderate or insensitive. ‘Amazing’ probably is the wrong word, though. Traumatic might be more appropriate. But certainly not what I expected. But then I guess no one expects cancer, so probably a stupid thing to say. Think I’ll shut up now!

  2. It is so strange how we perceive things. The banging on the window was, in reality, the tiniest little scraping noise. There was something so unassuming and yet so very wrong with that sound that Christian and I both instinctively ran to the front door.

    I couldn't believe the ambulance took so long to come. It was like an eternity.

    After the infusion of Diazepam at the hospital Denis went straight into a deep sleep. Partly from the drug but also from exhaustion after two hours of seizing. I asked Dr Diez about the possible causes. One of them was brain tumour. Later, after the CT scan, he told us that there was something there but too indistinct on the scan to be sure of anything. I made him show me the scan and I could see the mass. A moment in time so unthinkably terrible. I had seen that image once before.

  3. Anne - no, there is no problem here saying what's in your mind - I'll be straight with anyone who asks anything or makes any comment, or, as I do, is often just thinking aloud. You raise an interesting point about earlier warnings. In fact, we now know they were there. Tracey said that sometimes as I was asleep weeks [months?] before we knew for sure something was up, I was making weird repetitive movements with my right leg - something quite abnormal and not just a movement you would make in a dream. There would have been other signs if we had been looking for them - but why would we be? We were playing squash 3 times a week and living a normal, rather fantastic life....

  4. Tracey's comments are likely to be more accurate than mine, given that I was in la-la land that night for most of it, so if there's a difference in what we say, take her word for it before mine! She also corrected the infusion medication name. I can well imagine that, as I was trying to keep the right arm under control, any tapping on the window would have been pretty innocuous from the study.
    We had a joint discussion of it all with Dr Diaz [my spelling's right! heh heh] and other doctors on the Friday morning, as you'll see if you don't get too bored by the story. And yes, she had seen an image something like that once before, and it would have been terrifying for her.

  5. Oh god! Denis that must have been one hell of an awful experience for all of you. I couldn't imagine how that must have felt. The not knowing what it was alone, would have been terrifying. xoxoxoxoxox

  6. OK OK Diez!! Turns out you are right about that too! All I can say is that it SHOULD be Diaz.... Diez just looks wrong to me. Would Cameron Diez look right?? :)
    Connie: I guess it could have been terrifying, but I must admit I just couldn't believe it was anything too serious for a long time. Once it really got started I was too busy trying to deal with it than to feel terrified. BUT I should have been and if I had had enough time to really think about it, no doubt I would have been. Watch for the next instalment and keep reading!

  7. That's because I am Mrs Wright :-)


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