Newest Review: ... later I had another seizure and it was then the doctors decided it was epilepsy after all. When I got the phone call and was told I fel... more
A scary but often manageable condition
My Experience of Epilepsy
Member Name: sassypat456
My Experience of Epilepsy
Advantages: Makes you appeciate things more
Disadvantages: debilitating, restrictive, requires medication
My parents were divorced and I was staying with my dad, and the last thing I remember before waking up, is getting a bowl of fruit and sitting down to watch a silly gameshow. After that I woke up, but in between my dad said I had walked into the kitchen and he ran in, having heard an allmighty crash, to see me convulsing on the floor.
Although it was scary for him, I think his mind immediately turned to the prospect of Epilepsy as his sister had the condition. He promptly arranged me in the recovery position and called a cab to take me to the University College Hospital (UCH) in London.
While waiting for the cab I ran into the bathroom and threw up a mixture of blood from where I had bit my tongue during the event, and a whole concoction of exotic fruit! Too much information, I know, but this is an honest account of Epilepsy, from a personal perspective.
It was all a massive blur for me, and a little confusing, especially when the doctors decided to keep me in hospital for a few days to run EEG's and other tests. My mum and sister were in Ireland (where we lived) and it was a lonely time, despite my dad plying me with trashy magazines and sweets to cheer me up!
While in hospital I was diagnosed as having Epilepsy, but despite me having had a seizure in front of the glitzy gameshow, I was not seen to have Photosensitive Epilepsy, where sufferers are often prompted into having seizures as a reaction to flashing lights. I have never since had a seizure as a result of being near flashing lights, but I have had a number of other seizures.
I was given Phenytoin and sent home and I was on this outdated (but effective for me) medication for years until I asked for it to be changed due to unknown side effects and the fact that newer medication was available.
Most of my seizures occured at night, so I always assumed I had nocturnal seizures, particularly as they would happen when I was in a deep sleep. I would wake up, often with a bitten tongue, and to voices which seemed to come from another planet. It took me a while to come around from these episodes and realise where I was, or whose voice I was listening to, usually my worried mums as I still lived at home. Once I remember to my horror finding my bedding in the process of being changed when I came around, and was hugely embarrassed that I may have lost control of my bladder, especially since this was in the company of both my mum and my boyfriend when I was eighteen.
Often, on waking, I would struggle to remember what day it was or what I had been doing before the event, until I was fully recovered.
My seizures were 'tonic clonic' meaning that I would lose consciousness and my entire body would convulse, but there are many other kinds of seizure including 'absences' where the person literally appears to go blank for a few seconds and may miss some of a conversation. These seizures can be really minor, or really life-shattering depending on their frequency as a person can have a whole series of them, meaning that they miss large chunks of the day and are unable to function properly.
Having worked at a national Epilepsy specialist for a few years, I became very much more aware of the condition and how differantly it can affect people. Some of the people I worked with had very severe Epilepsy to the point where they spent their lives taking a cocktail of medication and living with profound associated learning difficulties. Yet some of the people I worked with had a mild form of the condition, which was easily controlled. There really are so many different forms so it's impossible to generalise, yet sadly everyone still does.
Like I said most of my seizures occured with no fore warning and during my sleep, except for the most recent one, which I'm pleased to say was several years ago now. I remember clearly crossing a busy road and feeling my head go fuzzy, my ears ringing and everything going in slow motion. I knew instantly that this was an 'aura' and that I was going to have a seizure. It was the scariest thing as I had no control whatsoever and was in a very dangerous location. Next thing I knew I woke up in a car, with a strange man explaining he was a paramedic. I still have no idea who called the ambulance, but I'm very grateful that someone did, and that I obviously made it to the other side of the road first.
Personally I would go months and months without having any kind of epileptic activity, but sadly I never went long enough to be able to drive, until a few years ago. At first this wasn't an issue as I lived in towns and cities, but when I settled down in the countryside, I really needed to learn to drive and resnented the fact that I was unable to, due to a condition that was totally out of my control.
Now that I haven't had a seizure for so long I appreciate driving and not having to take any medication, but it is always something that hangs over me. I don't know if I will ever have another seizure, but sometimes it occurs to me while driving with my baby, that if something were to happen, I could not stop it and it could result in devastating consequences. But I try not to think like that as I want to live my life and not be at the mercy of things that I have absolutely no say over.
I would like to point out that Epilepsy is a condition where the brain misreads impulses, resulting in seizures of varying intensities depending on the sufferer. It can happen to anyone but some people are more prone to it than others for a variety of reasons. Some children have seizures in childhood and grow out of it, never having any in adulthood. These days we don't say the word 'fits' hence this is the first mention of the word, which I personally hate.
The National Centre for Young People with Epilepsy is an excellent starting point for anyone wishing to find out more about this condition and to find out where to go, and what to do next. It dosen't have to be the end of the world, and luckily in my experience I have been able to live a full life, however having worked with more complex cases, I feel very lucky indeed that this condition was not all-consuming for me and has not left me needing care or continual support.
Summary: A complex condition