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Seizures: 'like someone has stolen a second from your life'

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31 August 2016

Our marketing assistant, Helen Skipworth, discusses how simply saying 'I have epilepsy' is only half the battle when it comes to explaining the condition and how it actually feels to have a seizure. 

On Thursday 18 August we asked our supporters on Facebook a very simple question: 'what do your seizures feel like?' The response we got was far from simple. Which got us thinking, how many people with epilepsy have ever been asked this question before? There are over 40 types of epilepsy, so just knowing that a person ‘has epilepsy’ does not tell you very much about their condition and the type of seizures they have. Imagine trying to explain what your body goes through during a seizure, if you remember nothing about the experience afterwards.

We had a fantastic response to the post with 300 comments, showing no two people experience exactly the same symptoms. Seizures can take on many different forms, affecting people in a variety of ways. They may not even be totally visible. Some people may have a warning that they are about to have a seizure in the form of an aura, for others this may not be the case.

We picked out a few key responses that show seizures are not only falling to the ground or shaking. It's not always that easy to tell when a person is having a seizure and others around them may not realise or know what to do.  You can read all of the comments here. Thank you to all who shared and commented.  

Here's what you told us....

'Absences just feel like someone has stolen a second from your life you sometimes know it's gone but you don't know what you were doing.'

'It feels like fireworks are blowing in my brain, i can't move, can't talk, strange smell in my mouth, strange noise in my head, i can hear everyone sceaming my name for  a while.  It's very painful.'

'I once thought 30 people were chasing me and I was on fire. I felt lightheaded to start off with and then  fell to the floor and smacked my head. A hole in my tongue, a bruise on my forehead and an ache all over, I was fine after.'

' I feel a jolt sensation like going up in a lift. When I come round I can't talk sense, only jumbled words. I've had epilepsy for over 40 years.'

' I have partial seizures. I have a wave of dread or the feeling of falling go through my body to my hands and feet. My heart beats faster. I zone out into a weird type dream (feeling like I've had that weird dream before). It's not the same feeling I have when sleep dreaming. It's a strange/unsettling feeling). At the same time as this, I can still hear people and I am still aware of the room that I'm in. They last for on average about 8 seconds but can be longer or shorter.'

 'Like you've been to the gym for the whole week nonstop'

'Seizures feel like the driver in my brain has just stumbled across a rare Pokémon and has taken their hands off the wheel in order to catch it.'

' If I am about to have a grand mal, then everything becomes really clear, it all goes in slow motion and everything seems really loud.. I get a sense of déjà vu.'

'Everything starts to sound like a CD player is stuck on repeat as people speak to me. My heart races, I have a weird taste in my mouth'

'It feels like your being constantly stalked by a vile, horrific, terrifying monster, one that can rip your heart out of your chest. It's helplessness, it's mentally exhausting, never-ending restlessness.'

'I get a nervous feeling like I'm about to go on stage. Sometimes I can calm down and it goes away.'

'I am minding my own business and all of a sudden I feel like I am not myself. I tend to reach out at something .'

'Like Metallica, Slayer, Megadeth all get together for a jam session in my head whilst inviting a crowd to come in & head bang.'

'The worse thing is I don't know I'm having my seizures. I've been told during a seizure I talk rubbish and do very odd things.'

'I have clusters of absences lasting over 2/3 days. I am awake but unable to understand what's happening around me for a few seconds at a time. Once these have passed I'm totally worn out and ragged and my memory is impaired. '

'Like my head becomes a washing machine of thoughts and I can't grab hold of one to try to focus on.'

'Waking up realising you don't even remember that you have two beautiful kids, and everything just feels odd, you cannot relate to any of your surroundings except one constant.... For me that's my mom.'

'The world stops spinning while my mind is moving at speeds unfathomable'

'My 4 year old calls it her fuzzy head. Wipes her out for hours and bounces back like only a child could.'

Find out more about epilepsy including causes of epilepsy, epilepsy facts and risks from epilepsy and seizures.

In a Facebook post On Monday, 15 August 2016 we asked supporters, "what one thing do you wish more people knew about epilepsy?". The response was unexpected and overwhelming.