Following my first seizure (aged 10y) I was blessed with around 10y seizure free. During this time I went to college, got my drivers licence, did a gap year in South Africa and started a University degree in medicine. Things were going in the right direction.
I was taking a holiday with my friend in Corfu when things went array again. We were at a lovely little resort called Kavos (I'm being sarcastic. I would recommend avoiding this place like the plague unless you are in your late teens and looking for a cheap place to party!) Anyways, we had a big night on the first night and were feeling a bit rough the next morning. My friend decided to set an alarm to go sunbathing so we both headed to the poolside. Turns out hangovers and lying in 30 degree heat are likely to induce seizures in people prone to such things. This time it was a generalised tonic clonic seizure which is what most people think of when they think of an epileptic seizure. My friend was understandably traumatised and got me to a local clinic where I was rehydrated. My Dad (the GP) maintained his cool, as ever and advised my friend that we could stay and enjoy our holiday though go a bit easier on the booze and sun!
It wasn't until I got back in the UK that I realised fully the implications of what happened. The main thing I mean when a say this is "Bye Bye drivers licence!" Often we don't take for granted such things until they are taken from us and I was devastated. I felt like I'd lost my independence and what followed was many excruciating years of public transport and begging for lifts.
At the hospital I saw a registrar in neurology who told me "I was not likely to suffer regular seizures". He clearly discussed my case with his consultant after the appointment as a few weeks down the line I got a letter from him basically retracting this comment.
Tuesday 29 September 2015
Saturday 26 September 2015
Life after my first seizure
I was 10 when I had my first seizure and things did change afterwards. My parents decided not to start me on antiepileptic medication but the paediatrician did offer this option. Knowing what I know about these drugs now I realise that perhaps this was one of the most important decisions my parents ever made for me and I'm so thankful they left me drug free! The subject of side effects of medication deserves it's own space but needless to say I experienced some unpleasant ones.
So, anyway things ticked along as normal after the seizure except for a few minor alterations. I recall an outdoor pursuits trip just afterwards when I wasn't allowed to do any of the fun stuff! I was stuck with orienteering instead of climbing and sailing. However, I don't remember a long period of parents and teachers being overly protective. I was back in the swimming pool pretty quickly.
The paediatrician had said that if I remained seizure free for 2 years off medication then it was likely the risk of recurrence would return to that of the general population, so as time time passed so my family and myself worried less and less. I didn't suffer any other seizures until my early 20's and I know that I was very lucky for this to be the case.
So, anyway things ticked along as normal after the seizure except for a few minor alterations. I recall an outdoor pursuits trip just afterwards when I wasn't allowed to do any of the fun stuff! I was stuck with orienteering instead of climbing and sailing. However, I don't remember a long period of parents and teachers being overly protective. I was back in the swimming pool pretty quickly.
The paediatrician had said that if I remained seizure free for 2 years off medication then it was likely the risk of recurrence would return to that of the general population, so as time time passed so my family and myself worried less and less. I didn't suffer any other seizures until my early 20's and I know that I was very lucky for this to be the case.
Wednesday 23 September 2015
Stigma
Before I had my first seizure I had no idea what epilepsy was, so clearly I had no reason to be embarassed or ashamed of it. However, over the next few months my mind shifted until sadly that was the place I was in. I have a few vivid memories from this time that perhaps help explain why this happened. The first was on the bus on the way home from having my EEG investigation. The department at the children's hospital had given me a sticker saying, "I had an EEG today!" I distinctly recall my Mum taking this sticker from me and saying, "I don't think everyone needs to know you had that done". Looking back I probably read way too much into this but it made me think that I should be ashamed of what was happening to me.
Even though I had had only 1 seizure my parents got me a Medic Alert bracelet that said "EPILEPSY". In my last year of primary school one of my friends asked me what the bracelet was for and I couldn't tell him, instead I just ran away crying. When my teacher asked me what was wrong I just said "I didn't want everyone to know".
All this would've been around 1995, so (I like to think) not that long ago. As an adult I have learnt to be open about my epilepsy and can talk about it quite comfortably. No-one has ever given a negative reaction when I have told them my diagnosis. However, many people seem surprised or taken aback and I guess this is probably due to a few things. One is that I talk about it so openly and the other is that people do not understand the condition and so do not really know how to respond when you tell them. Most of the time it does lead into a conversation about someone else they know with epilepsy. So, the question is, if everyone knows someone with the condition, why are people so uncomfortable talking about it???????
Even though I had had only 1 seizure my parents got me a Medic Alert bracelet that said "EPILEPSY". In my last year of primary school one of my friends asked me what the bracelet was for and I couldn't tell him, instead I just ran away crying. When my teacher asked me what was wrong I just said "I didn't want everyone to know".
All this would've been around 1995, so (I like to think) not that long ago. As an adult I have learnt to be open about my epilepsy and can talk about it quite comfortably. No-one has ever given a negative reaction when I have told them my diagnosis. However, many people seem surprised or taken aback and I guess this is probably due to a few things. One is that I talk about it so openly and the other is that people do not understand the condition and so do not really know how to respond when you tell them. Most of the time it does lead into a conversation about someone else they know with epilepsy. So, the question is, if everyone knows someone with the condition, why are people so uncomfortable talking about it???????
Monday 21 September 2015
My first seizure
I guess the beginning is a good place to start.
I had my first seizure when I was 10 years old. It was a normal day at school and we were in the school pool. I can remember messing about with my friends and then I came round in an ambulance. They had strapped me to a stretcher so all I could see was the ceiling. I couldn't move my head as they had put me in a collar. I could feel the ambulance moving and hear it creaking. I had no idea what was going on. I was terrified.
Later on, I was told that I had suffered a partial complex seizure. I had suddenly looked up at the pool ceiling and started walking round in circles. I was unresponsive to my teacher's and classmate's calls.
During the ambulance ride to the hospital my Mum was there. She had been helping out at the school that morning. I was so glad to hear her voice but at the same time she sounded so frightened that I knew something serious had happened. I can't remember much about being at the hospital but they carried out a CT scan which was normal. I came round pretty quickly and was soon agreeing to partake in lunchtime fish and chips! They discharged me after just a couple of hours. I still felt rough but it was the bus home for me. Looking back I do think it was pretty tight of my parents not to pay out for a taxi given the circumstances!
My parents told me that I had had an epileptic seizure but that they weren't sure if I would have another one. They decided not to start me on antiepileptic medication due to the side effects. It's worth mentioning at this point that my Dad was a GP which was handy. The next day it was back to school as (almost) normal............
I had my first seizure when I was 10 years old. It was a normal day at school and we were in the school pool. I can remember messing about with my friends and then I came round in an ambulance. They had strapped me to a stretcher so all I could see was the ceiling. I couldn't move my head as they had put me in a collar. I could feel the ambulance moving and hear it creaking. I had no idea what was going on. I was terrified.
Later on, I was told that I had suffered a partial complex seizure. I had suddenly looked up at the pool ceiling and started walking round in circles. I was unresponsive to my teacher's and classmate's calls.
During the ambulance ride to the hospital my Mum was there. She had been helping out at the school that morning. I was so glad to hear her voice but at the same time she sounded so frightened that I knew something serious had happened. I can't remember much about being at the hospital but they carried out a CT scan which was normal. I came round pretty quickly and was soon agreeing to partake in lunchtime fish and chips! They discharged me after just a couple of hours. I still felt rough but it was the bus home for me. Looking back I do think it was pretty tight of my parents not to pay out for a taxi given the circumstances!
My parents told me that I had had an epileptic seizure but that they weren't sure if I would have another one. They decided not to start me on antiepileptic medication due to the side effects. It's worth mentioning at this point that my Dad was a GP which was handy. The next day it was back to school as (almost) normal............
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