It’s been 10 years since… (a short memoir about epilepsy)

Epilepsy brainIt is 10 years ago today that I remember standing in my bathroom, brushing my teeth, a 17 year old on his way out somewhere on a weekend morning. One moment I felt fine, and then suddenly one of those dizzy spells started again, the same ones that I had been suffering from 20 to 30 times a day for the past 2 and a half years, which no doctor had really given any useful advice on. But this dizzy spell was different. I felt the numbness creep underneath my skull over my head, seep into my eyes, my nose and mouth, down through my body into my hands and feet. I felt myself freeze over, my senses fail me one by one as I desperately scrambled to make sense of what was happening in my head, only to find my own lines of thought were turning to mush and I couldn’t even think in sentences or words. For a split second my vision snapped back as the ground was bizarrely hurtling towards me…

Two hours later. I was completely unaware of the bathroom tiles I had kicked clean off the wall, or the bloodied state my (at the time) 10 year old sister had found me in, unconscious. I was also unaware of the thousands of tiny red dots all over my face – burst blood vessels from landing with so much force – which would cause me to laugh hysterically at the end of the day when I finally saw my own reflection again.

Oxygen maskInstead, I woke up on my couch in the back room of my parents’ house, with Dad and two strangers standing over me, staring at me with concerned looks on their faces. The only thing I was concerned about was getting the oxygen mask off my face so I could ask them what the hell an oxygen mask was doing on my face, because I felt fine apart from wondering why I had gone for a little sleep on the couch, and how I had even found myself there. I attempted numerous times to remove this oxygen mask to ask my question, but they insisted it stay on my face, and I felt suffocated by my lack of ability to communicate. It was only when I found myself being picked up, put onto a stretcher, and carried down my driveway and into the back of an ambulance, with Dad following along, that I realised not only that something serious had happened, but that it had happened to me. More than ever, I wanted to get that stupid mask off my face.

I was soon told that I had some kind of accident and had been found unconscious in my bathroom by my little sister (who remained amazingly brave and did all the right things at the time – it was only her and Dad home as my other sister was out somewhere and my Mum was in England as her father had just passed away). Nobody knew what the accident was, and I had absolutely no memory of what it had been, or that morning at all really.

EEG-CapWe got to the hospital, where a number of different tests were conducted on me, from MRIs to EEGs, many of them focusing on my brain. I was still quite out of it, and so wasn’t bothered by the Frankenstein feel of having wires attached to my brain during an EEG, or feeling claustrophobic in that tube during the MRI (something I did feel much more when I had an MRI a few months ago). It was more like a day at a theme park, only all the rides were weird machines that made lots of noise and made my head feel funnier than it already did. At one point I was asked if I had consumed any alcohol in the last month, which I awkwardly answered with an “I don’t know” due to the presence of my Dad – and thus my parents found out that I had been drinking under-age (I then argued that if I had kept it from them so well all that time, surely I must be a sensible drinker – I look back now and shake my head at myself).

We went home at the end of the day and were told that they’d let us know as soon as they had some definite results, but that I was not to return to school until we had a diagnosis (which was awkward as it was only weeks out from my final High School Certificate exams). My Mum was going to be in England for a couple more weeks, and we decided as a family not to tell her about what had happened to me as she had enough to deal with on her own, not only with her own mourning for her father but also her family as well. Still, she knew us all too well and could sense we were hiding something from her, which caused her to become quite angry with us at points as we swore we weren’t hiding anything.

Epilepsy word cloudA week after my hospitalisation I found out I had epilepsy. I also found out that the dizzy spells I had been having 20 to 30 times a day were in fact seizures, just minor seizures that weren’t knocking me unconscious like the big one a week earlier. So I had in fact had perhaps a thousand seizures over the past few years without realising it was epilepsy the whole time, and something had triggered the big one finally – a mixture of stress, lack of sleep and possibly alcohol, the neurologist told me, though we both suspected it was more the first two. I later realised that my Grandpa’s death, despite him living on the other side of the world, had upset me deeply, and that this was probably the final trigger for my epilepsy. In a lot of ways though I am glad something triggered it when it did, when I was just at home and not in a car when it would have been a lot scarier and more dangerous. Speaking of cars, I wasn’t allowed to drive for a couple of years after this, until my brain had been stable for some time.

I know both my parents have dealt with it in different ways over the years. Mum broke down in tears when she finally came back home, angrily demanded what on earth was going on and I blurted out the story to her and told her I was epileptic. Dad later admitted that he had been so worried about me he had been in tears at some points, and it dawned on me just how much my parents cared for me that they were more worried about me than I was myself. For the last decade they have always been very concerned about my health, and while at times it drives me nuts mostly I adore them for it and am very glad to have them around being so thoughtful and caring.

I quite enjoyed the novelty of telling people I officially had a brain disorder, and after a few months of constantly readjusting my medication, I’ve had mostly 10 peaceful years of not having to worry too much about my epilepsy. I have no particular reason or desire to come off my medication, and although I did have a sort of pre-seizure a few weeks ago which scared the living daylights out of me, I think this is a new medication I’m on for migraines that is causing a conflict in that brain of mine, and I intend on coming off the new medication – I’d rather put up with migraines than seizures any day!

I still have much to learn about epilepsy, and much to learn about my own epilepsy and my own brain, but when I look back to 10 years ago I realise I probably learned more about myself and my parents during that time than I did the inner workings of my head. The brain is a funny old thing, don’t you think?

12 thoughts on “It’s been 10 years since… (a short memoir about epilepsy)

  1. we have a couple of people in my immediate family with this disorder and I found it fascinating reading your description of the feelings you had during a seizure. The advances over the last few years with treatment have been impressive and I wish you well and hope that you continue in good health forever. – Cheers – Diane

    • The feelings are very unique – when I had my pre seizure a few weeks ago, it happened at work. One of my colleagues asked how I knew it was my epilepsy, and I described these feelings to them and said it had to be epilepsy – nothing else felt like it. It has become more terrifying as I’ve gotten older, long after I’ve become stable, which is odd. I guess it’s just a psychological thing, the fact that I understand better what is happening to me when it happens. But I take steps to look after myself and prevent it from happening, so I don’t stress too much about it. I think almost every family has one or two people somewhere in it with Epilepsy, and it is something I think more people should know about.
      Thanks for the lovely words! πŸ™‚

      • My uncle suffered very very badly since he was about ten years old, really terrifically bad. Even though he has led a very full and successful life it has impacted, he has never been able to drive a car or drink alcohol etc. etc. A few years ago a new doctor wanted to change his medication – he argued long and hard, “No, no I am happy on this that I have been on for year. The new medication makes me feel bad etc etc but the doctor was insistent. After some weeks he was better than he had been for decades. So even though it seems that you have done all you can do there is always the chance that something even better is just around the corner.

        • Oh wow? My uncle has suffered from epilepsy his whole life too, and I think it has affected him more than it has me, especially in terms of driving (though I don’t know all the ins and outs of it). I know I need to be careful with alcohol, as my epilepsy medication multiplies the effect of alcohol on me (but having said this, I have for most of my adult life been able to hold startling amounts of alcohol…must be my Northern English genetics hahaha). That is really interesting though about your uncle and the new medication! It does make you wonder, doesn’t it? My epilepsy medication works fine for me, my problem is my migraines, which, oddly enough, we are currently trialing a medication which also doubles up as a treatment for epilepsy. So technically I’m on two epilepsy medications, but only one specifically for my epilepsy, the other for my migraines (which isn’t working, and which next week when I see my neurologist I’m going to ask to come off during my next school holidays (as I experienced hallucinations and all sorts for a week when I started them, despite being told I’d be fine hahaha)). But yes, medicine is advancing in leaps and bounds – there may well be a solution around the corner for all my brain problems, epilepsy, migraines and all! I just have to keep my chin up! πŸ™‚

    • Yep, grand mal! Yeah, I think epilepsy can be very stressful. I have read of some epileptics who struggle to find treatments that will work at all, so I consider myself very lucky to be stable and to live a relatively normal life – besides, I love driving and would hate to be unable to drive again. Thank you for your kind words! πŸ™‚

  2. I appreciate reading how you felt during the pre-seizure. Many of the special needs students I work with and have worked with in the past are/were non-verbal. Since they could never tell us when they thought they were about to have one, we always had to look for physical signs that they were about to seizure, which isn’t too helpful. Hope your medication keeps working so you can have a seizure-free life. Take care. πŸ™‚

    • Ahh, that would be difficult to look for physical signs of pre seizure, since I know with myself I show almost no physical signs. I just go quiet and stare into the distance, and that’s basically because I withdraw into myself as I try to fight it off without bringing attention to myself. But I know different people cope with it in different ways, and experience seizures in different ways – even people with the same epilepsy (Grand Mal) as me. It would be a difficult thing to work with students if they had epilepsy and were non verbal as well.
      My medication should keep working fine, so long as I don’t let other medications mess with it, as this current migraine medication I’m trialing has been doing (and thus I plan on coming off it very soon). πŸ™‚

      • Too bad you will have to cope with migraines, as a result. I know that massage therapy works wonders with relieving stress, which might limit your migraines. There’s also a technique called reiki, which is also supposed to be good for aligning the chakra (whatever that means!) It couldn’t hurt to try alternate ways of healing. πŸ™‚

        • Yeah, I need to look into massage therapy a bit more. Interestingly one of my fellow teachers practises reiki. She actually practised it on me at work one day during a break, she said I had a lot of blockages or something, basically it was quite apparent I was extremely stressed. But yeah, at this point I need to keep open minded, that’s for sure! πŸ™‚

  3. Even though you’ve told me this story before, it feels quite different reading it. I feel like I get to peek into your mind a bit and I feel like it’s easier to relate to what you were going through when you discovered about your epilepsy and also to how you deal with it in everyday life. You’ve always been amazing at putting words to things and make them understandable and relatable (is that even a word? haha)! I’m proud of you darling, always am πŸ™‚

    • I’m glad you could get a different insight into this part of my life by reading the story written down, as well as what I’ve told you before! Thank you, for your kind words and never ending support sweetheart πŸ™‚

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