What Does It Feel Like To Have An Epileptic Seizure | My Experience

For 25 years I have had epilepsy. It is something that I live with and manage on an ongoing basis. I never feel as if I ‘suffer’ from epilepsy, rather that I ‘live’ with epilepsy. It’s a subtle difference but switching the word suffer for live can have a massive effect on how I am viewed, and even how I view myself.

Yes sometimes my epilepsy can be cripplingly debilitating, but sometimes it doesn’t bother me for months on end. It is a part of me, I am a part of it – like old frenemies.

I am often asked the questions, “What does it feel like to have an epileptic seizure?” Now that’s not an easy question to answer. Seizures can differ from person-to-person and from day-to-day, but when I do seize my brain is completely enveloped in epileptic fog. This short play endeavours to explain that all-encompassing fog:

A Play In Two Scenes
Michelle Lyndon-Dykes

If you know someone with epilepsy you may be curious as to what if feels like to have an epileptic seizure. I have had epilepsy for 25 years which share my experience and what if feels like to have an epileptic seizure - for me.

CHARACTER #1 – MICHELLE, Midlife, fun-loving woman. Has had epilepsy for 25 years, and still has the occasional seizure.

CHARACTER #2 – BRAIN, This is Michelle’s thought process. Her BRAIN tries to stay calm before a seizure, but often loses it. Can be a bit of an arsehole as well as extremely potty mouthed both before and after a seizure. (You have been warned).

CHARACTER #3  – ANDREW, Husband of Michelle. Well skilled at handling seizures and one of the only voices that resonates with BRAIN both pre and post seizure.

CHARACTER #4  – CUSTOMER, Has no experience of epilepsy and has never witnessed a seizure.


Set in a busy supermarket deep in the bowels of Yorkshire. MICHELLE is perusing the spice shelves, ANDREW is two rows over choosing bread.

BRAIN: Moroccan chicken, what spices are we short of? I’m sure we’ve got harisa paste but do we have saffron? SHIT! SHIT! SHIT!


CUSTOMER: Did you say something?

BRAIN: OK, calm down. We know what’s coming so let’s get Andrew, you need Andrew.

MICHELLE: Hus, hus, hus ……..

CUSTOMER: (Looking concerned). Are you alright?

BRAIN: You can do this. SHIT. Come on! Think of the word then say it. FUCK! HURRY!

MICHELLE: Hus, hus, husband.

BRAIN: OK, that’s good. OH GOD!

CUSTOMER: (Whose words are now becoming less comprehensible as MICHELLE’S seizure gets closer; as if spoken from a distance, like a slowed down record, through a blanket of thick fog). I thhiiinnnkkkk sheeeee neeeeeddddds heeeelllllllppppp.

ANDREW: Coming around the corner carrying two loaves of bread. Oh shit. Honey, honey you’re OK. You’re going to seize, we need to get you down on the floor.

CUSTOMER: Should I call an ambulance?

ANDREW: No, it’s fine. We know what to do.

BRAIN: There, he’s here. We’ll be OK now.

A crowd begins to form.

BRAIN: SHIT! NO, go away. FUCK OFF!! What is wrong with these people??!!

MICHELLE: So, sor, sor, sor, sorry.

ANDREW: It’s fine honey. Come on, down you go.



If you know someone with epilepsy you may be curious as to what if feels like to have an epileptic seizure. I have had epilepsy for 25 years which share my experience and what if feels like to have an epileptic seizure - for me.


A small crowd has gathered around MICHELLE who has suffered a full tonic clonic seizure. Her body has convulsed uncontrollably and she has lost consciousness. Her mind is now totally confused and all she feels is fear, and the overwhelming urge to escape.

ANDREW has cradled MICHELLE during her seizure to stop her hurting herself. He has put her in the recovery position and is lying on the floor next to her. He has his arm around her. His face will be the first thing she sees when she comes around.

ANDREW: Honey can you hear me?

BRAIN: Get off me, let me go.

ANDREW: You’re safe, you’re OK, you’re with me.


BRAIN: Got to get away, got to get safe. I’ll punch your bloody lights out if you don’t LET GO OF ME!!

ANDREW: Calm down! You’ve had a seizure honey. You’re OK.

BRAIN: Andrew, I can hear Andrew.

ANDREW: That’s it, stop fighting. I’m here.

BRAIN: Where the fuck am I?


ANDREW: Hi baby.


ANDREW: Just lie there baby, don’t try to get up yet.

BRAIN: I see feet, people standing around me? So tired. Just piss off. Need to sleep now. Where’s Andrew?

ANDREW: Look at me, that’s it. I’m here.

MICHELLE: Tiiirrreed.

ANDREW: I know you are honey, just stay there for a few minutes then we’ll get you home. Are you ready to sit up?

BRAIN: Home, yes need to go home.

MICHELLE: Think so.

ANDREW helps MICHELLE to slowly sit up.

BRAIN: So tired. Need to sleep. Oh God, people are looking. Shit I hurt. Say something, anything. So sleepy.


BRAIN: They look scared. So tired. Say something funny. Everything hurts. Need sleep. Come on, form each word. Sleepy. Do it!

MICHELLE: I m-m-make that a 6.5…………… F-f-for my n-n-next trick I will p-p-perform a d-d-double roll with a back flip.

BRAIN: OK, they smiled. Please I need sleep. Now let’s see if they leave you alone. So tired.

ANDREW: Let’s get you home.

MICHELLE: Love you.

ANDREW: Love you too honey.


I hope this mini play has helped people who are a struggling to understand a seizure, and goes some way to answer the ‘what does it feel like to have an epileptic seizure’ questions. Although it is a dramatisation, it is a true representation of what happens to me just before and just after I seize. It has been correlated from numerous experience to give you a flavour of what I feel and think.

I sometimes cannot remember chunks of time from before a seizure, sometimes I cannot remember anything for up to two hours after a seizure. Each person with epilepsy will experience a seizure differently. Some don’t have full seizures – they have absences, some have both, some will have no warning, some will know well beforehand if a seizure is about to strike.

I am one of the lucky ones. I have met the absolute love of my life. He is the ‘voice inside me head’ that tells me I’ll get through it. You know you have found the perfect person when you can hear their voice through the fog and you somehow know that they are holding you.

It is also highly unusual for me not to know, sometimes hours in advance, if I am going to seize. Seizures in the middle of the supermarket are an extreme rarity – for me. But that doesn’t mean that I don’t know the crippling embarrassment of seizing in front of a crowd of people.

So I ask this of you: if you do see a person having a seizure, unless you have medical knowledge or are the only person able to help, walk on by. There is nothing more soul destroying for me than regaining consciousness and knowing that I have put on a ‘show’.

Trying to think through the all-encompassing fog, move when every bone aches and answer simple questions when my brain is screaming for sleep is difficult enough. Please don’t add to the shitty mix by standing around and watching.

Thank you.

P.S. I have not shared the fact that I have epilepsy with you prior to this post because it’s such in integral part of me, it would be akin to telling you my eye colour. I am not embarrassed, afraid of what you might think or unwilling to share that part of my life. Although that hasn’t always been the case – it used to scare me rigid.

If you are fighting your own battle with epilepsy, or simply need help then The Epilepsy Association has heaps of knowledge. I have found them to be incredibly understanding. YOU ARE NOT ALONE!


  1. July 13, 2016 / 3:56 pm

    Brilliant Michelle. You have a way with words that is astounding. It’s a fascinating insight and something I knew absolutely nothing about. So proud of you xxxx

    • Tracy Bentley
      January 16, 2018 / 4:21 pm

      Amazing thankyou. I’m 49 years old and newly diagnosed this year. This is amazing I didnt know what to say when people ask me what its like. I will print this and share with family and friends. Thankyou so much explains it perfectly.
      Tracy Bentley

      • January 17, 2018 / 8:17 am

        Ah, I’m so glad it has helped Tracy! I know the diagnosis can be scary but it honestly gets easier. Best wishes to you.

  2. July 13, 2016 / 4:30 pm

    Gosh Michelle, what a brilliant idea to write this through the medium of a play. You gave us distance whilst letting us see from the inside at the same time. I had no idea what it was like and would have been one of those people standing by, meaning to be helpful whilst not realising I was making it worse. It’s very hard to walk past someone who is in trouble though. Thanks for the insight. xx

    • July 14, 2016 / 6:57 pm

      Walking away when a person is having a seizure is really, really difficult. Our instinct is to stay and watch out of concern, or sometimes (in the minority) ‘train crash’ curiosity. I do get it, I know I’d struggle to walk away myself – but privacy really does help.

      Michelle xx

  3. July 13, 2016 / 4:31 pm

    Well done Michelle, you’ve given incredible insight for non-epileptics on not only how you feel but crucially how to behave. That’s actually really helpful & such a clever way to explain it, thank you.

    • July 14, 2016 / 6:58 pm

      Thanks Michelle, it wasn’t the easiest post to write but I’m hoping it will help.

      Michelle xx

  4. Charli
    July 13, 2016 / 4:31 pm

    Wow. Just wow. I’m sitting here with tears in my eyes reading this. Thank you for this beautifully, emotionally written explanation.

    • July 14, 2016 / 6:59 pm

      Oh Charli I’m so sorry I made you cry, but I’m also kind of glad you did. It means I struck the right chord 🙂
      Michelle xx

      • Charli
        July 20, 2016 / 5:18 pm

        You most definitely did! 😀

  5. July 13, 2016 / 5:43 pm

    Michelle, I am going to have to read this again tomorrow, and probably again the day after that, to fully absorb it. It reminds me so much of a cousin who has a rare type of narcolepsy; some of your descriptions sound just like hers. This is so helpful, because everyone wants to rush in and ‘do something’, but often the best way to ‘help’ is to give someone privacy and space. Thank you for writing this post; it was very brave, very insightful, and brilliantly written. Much love to you zz

  6. July 14, 2016 / 4:41 pm

    Thank you for this wonderful post, Michelle! Like most people, I had no clue about epilepsy. You described it so well and I am most touched by your relationship with Andrew. I’d love to hear more about it especially how to react, what to do as a stranger who happens to be there when somebody has a seizure. Thank you!

    Annette | Lady of Style

    • July 14, 2016 / 6:49 pm

      I think the most important thing is to try and stay calm. It’s hard and I completely understand that watching a seizure is very distressing and upsetting, but it’s vital that you keep a clear head and deal with the situation as best you can.

      If there person having the seizure has no warning, they may fall unconscious to the ground. It is then up to you to make them as safe as you possibly can (without putting yourself in danger). Take a look at what is around them, can you safely move them away from dangerous objects (cookers, busy roads)? Can you move dangerous objects away from them? Can you place objects (pillows, etc) between them and hard surfaces? Are they wearing an SOS tag? Can you look at it when they cease seizing?

      Some seizures will only last a minute or two and it is completely unnecessary to call an ambulance unless the seizure lasts longer than five minutes, the person suffers successive seizures without regaining consciousness or you ascertain that the person seizing does not have epilepsy. I have been stranded in so many hospitals because a well-meaning stranger has called an ambulance. Although I’m thankful for their help, and it’s always better to be safe than sorry, do use your best judgement and follow the guidelines above. It will save them taxi fares 🙂

      When the convulsing stops put the patient onto their side, into the recovery position if you can. And DO NOT put anything into the patient’s mouth EVER!!!! This is a myth that has caused way too many losses of teeth. It is untrue that a seizure can cause a sufferer to swallow their tongue. The worst that will happen is that they will bite their tongue, and bites heal.

      Every person with epilepsy is different, but it is usual to suffer from distress, disorientation and/or fear after an attack. Talk to them and reassure them that everything will be OK and that they are safe. Tell them that they have had a seizure, keep taking until they respond.

      Be aware that fear may cause a suffer to lash out after a seizure. Move away if you need to, but do try and stop them from wandering off. Enrol help to retrain them if absolutely necessary.

      Try if at all possible to give the person some space by asking onlookers to move on – it really will help. I know it’s hard to walk away, especially if you are watching out of concern, but it’s so difficult coming to and seeing a crowed. I actually had a store manager build a screen for me out of umbrellas a few years ago, I could have kissed him!

      I hope that helps.
      Michelle xx

  7. July 15, 2016 / 2:58 am

    Hi Michelle, wow. thanks for sharing this. I know it’s hard to put such an intimate thing out there in the internet-world but this is really, really helpful. I didn’t know anything about what someone goes through nor how to handle it when I see someone seizing. I will remember your advice and act accordingly if I see it. I love that Andrew can cut through all the brain noise. So touching.


    • July 16, 2016 / 7:09 am

      Thanks Julia
      I’m glad that this post is helping awareness, that’s what I was hoping for when I wrote it. It was difficult to write, but it seems to be hitting the right chord with people
      Michelle xx

  8. Will Casey Purvis
    July 17, 2016 / 7:01 pm

    I think perhaps your dilemma is IQ. I think you have a very high one. I think you’re stifling it.
    I am planning on researching seizures. This is your brain doing funny things? That’s what I believe.
    Will Casey Purvis 165 IQ
    [email protected]

  9. August 11, 2016 / 4:19 pm

    This was such a powerful post written from the heart which affected me so much. I suffer from Menieres Disease which means I can be rendered totally useless while I lie on the floor struggling with the ongoing vertigo attack. I also have suffered for years terrible panic attacks that can leave me fighting for breath. I am so grateful that you can write about your experiences of epilepsy in such a way that will help us, should we see an attack happening before our eyes. It probably took courage to write such a post. I have just written a personal post on my blog about my experiences with anxiety and I hesitated before pushing the ‘publish’ button. I have no regrets though. These things need to be said and I finally feel strong enough to write about it.
    Thank you for writing your post x
    Susanna X

    • August 14, 2016 / 3:41 pm

      Thank you Susanna.
      It wasn’t the easiest of posts to write. It was difficult to find a balance between trying to increase the understanding of what an epileptic seizure feels like (at least to me) and sounding ‘o woe is me I have epilepsy’ if you see what I mean? I’m on hols at the moment but I will pay your blog a visit and read your post. Any post that has a blogger hesitating before pushing ‘publish’ is usually worth reading 🙂
      Michelle xxx

  10. Susanna
    September 4, 2016 / 1:13 am

    This post is brilliant. My husband suffers from epilepsy with very rare and mild seizures. This really helped me to understand what a seizure feels like. And to be more aware of my own role. Thanks so much. xx Susanna

    • September 8, 2016 / 5:26 pm

      I’m so pleased that this article helped, even in a small way Susanna.
      Michelle xx

  11. Mels
    August 22, 2017 / 12:19 am

    Thank you for educating me.

  12. Karen McCreesh
    October 8, 2018 / 9:53 pm

    Dear Michelle

    My only precious son Alexander aged 19 years and 3 months of age was diagnosed suffering from Epileptic seizures, it is the most difficult condition to have to watch and I feel absolutely helpless when it happens furthermore I find the noises Alex lets to be of great distress for me. I am very proud of Alex as he is now on a full-time educational course at Carlisle (I am a most uniquely proud mother which makes me love Alex even more) University course of study taking a degree in The Arts Film and Media Studies for his future career.

    • October 15, 2018 / 4:07 pm

      From my own perspective (having witnessed a number of people having seizures) I can honestly say it is more distressing for the onlooker than it is for the person having the seizure. The very best of luck for Alex’s future – I hope things get easier for the both of you.

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