Epilepsy. What does it feel like to have a seizure?

In this extract from our module "Epilepsy" Torie Robinson shares what it feels like to have a seizure.

The presence of an intellectual disability and epilepsy poses unique and significant challenges. With the help of leading thinkers and people with personal experience our new module will help you to better understand what epilepsy is, how it affects people and what you can do to best assist those you support.

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[RobertWWD]

I was diagnosed with Epilepsy when I was 2.
When I was 8 I had a Brain Tumor surgically removed.
24 years Seizure free.

[karenrodriguez.]

I got diagnosed with epilepsy just about 5 months ago. I’ll never forget my first seizure, i was getting ready for school (I’m 17 btw) and started feeling very unwell and then it just happened, i seriously thought i was dying and it was so confusing and scary. I’m still not entirely used to having seizures and it’s so scary and frustrating every time, especially when they happen at school. I hope things get easier over time.

[TruDis]

According to my watch history, I watched this video recently, yet I have no recollection of watching it. No doubt I'll forget watching it this time too. Hello future me, how are you?

[goobertgoobert]

It's like dying and coming back to life.

[sgtpolk]

People ask so many questions when i come back from a seizure, and I don't know what to say. I just try to collect myself in my head. People don't even give you time to collect your thoughts. They swarm you with questions, and it's so overwhelming and upsetting. I know they want to help once it's all over, but in the moment, I hate it. I always describe having a seizure around family members is like having a bunch of strangers around who know everything about you, but you have no idea how! For me it takes about an hour or 2 before I get my memory back.

[juliemiller]

When you are watching a scary movie...that moment when you're holding your breath, there are tears in your eyes...and finally, you scream. You are alone in the house. There is no one to comfort you. You go to bed shaking in fear. Hours later you start to awaken from a nightmare. You bolt straight into a sitting position, screaming at the top of your lungs.

This is as close as you can get. When people can't explain the experiences of epilepsy, their friends and family knowingly abusing them by accusing them of faking their seizures for attention. Nothing in this world hurts worse.

[JamesHenderson-ug]

I think Tonic colonic sizures are what people think of when people ask. The best way to describe the way it feels (at least for me) is before I black out is first I get dizzy. Then I start having a really hard time forming words. Then comes the fun part. You know when blood starts flowing back into your leg after you sat on it too long and it goes numb. Imagine that pins and needles feeling turned to 100, but IN your head and down your spine. Then the next thing you know your on the floor, 20 minutes passed, every one of your muscles is aching like you just climbed a mountain, and your head feels like your brain was trying to break out of your skull.

[PeaceLoveUnityRespect]

Thank you for making me feel like I'm not alone; I can relate so much and tend to be ashamed

[ahbessyboo]

I had my first seizure yesterday out of the blue. I was getting dressed for work and felt completely normal then the next thing I know I felt like I was in a warped dream. I was laying in my bed, my head was bleeding (I hit it on the night stand) and I was wearing my night clothes like I had just changed into them. I don’t remember the time between getting dressed for work and waking up in a change of clothes with a bloody head. I was home alone. I called my manager to tell her I couldn’t come in and I forgot who she was on the phone 😂 my mom picked me up and took me to the ER. I had a 2 inch cut down to my skull and 10 staples later I’m home. But my body is So. Sore. My calves and neck ache. It was truly one of the most bizarre things that has ever happened to me

[ClubEnergizeTV]

You are astonishing to be speaking that way in public, much respect, I commend you, my lady has epilepsy and I’ve witnessed in first hand what you’re explaining. Stay strong you’re
amazing.

[louiserosser]

I have epilepsy and I have different kinds of seizures but you described it pretty well hun x

[anna-cvwv]

as a writer, this is very helpful - thank you

[omolabakeakinola]

Stay strong! It’s so amazing to see someone talk about it ❤

[iceborn]

Prayers to you! Hope all is well with you right now and moving forward.

[denekabudget]

My daughter (5 years old ) had her first seizure last year 2022 😢. On the 16 she had another one 😢 Am try to have a better understanding so I can be a better mom and help her anyway I can. Thank you for sharing

[Max_The_Cats]

I only have seizures when I awake from my sleep so in my case it's like waking up and feeling this sudden feeling of dread and anxiety, then it slowly builds up to panic until finally my vision starts to blur and I fall into my bed unable to control my body. It's a very scary and annoying experience since all I can do is listen to the commotion around me and think what am I am gonna say when I finally am in control again. (Been 2 years since I have discovered this and still holding to hope that it will end one day)

[Cheese-Head]

Omg this is exactly how I feel. I’m 42 and had my first tonic clinic seizure last week at work in the middle of a meeting full of coworkers in the room. One second I’m talking to a person sitting next to me and in the blink of an eye I wake up on the floor with 3 people holding me (one my head, another my legs, another running my arm) and I’m laying in what I later found out to be the “recovery position”. I have no memory of what happened. I was told that I was sitting at the desk and all of a sudden I jumped up my chair, started screaming and then fell backwards. Luckily the guy next to be caught me and broke my fall otherwise I’d break the glass wall that was behind me. They told me I had several seizures right after another. I was thrashing around on the floor, banging my head, my arms and legs in unnatural contorted positions. Literally it looked like I was possessed by a demon. When I woke up 25 mins later, EMTS were there and ppl from other meetings heard the commotion and ran to help. When I woke up I couldn’t speak, I didn’t know what was happening. I thought we were having some sort of an emergency drill and I volunteered to be the person on whom the drill was performed (like CPR or something). Then they started asking simple questions like my name, what year it is, what season it is, what month, date etc. I failed to answer all but one, my name. I couldn’t walk, I but my tongue off, skinned my knees. My blood pressure jumped to 210/110 and they thought I had a stroke. When they took me to ER and kept me over night all results came back normal. MRI was fine, CT, EEG, ECG all was normal. So now I don’t know when to expect it next. They wouldn’t put me on any anti seizure meds because they want to trigger it again in hospital setting. I can’t trust myself anymore. I shower sitting down with door open, I can’t drive, I can’t ride my bike. I feel so disabled all because I don’t know when to expect it again. It’s an awful awful experience even though you have no memory of it. It felt like I ceased to exist and came back out of non existence to existence.

[STP]

Thank you for helping on this topic. I’ve seen friends have an episode, but didn’t know how to help them. This was wonderful.

[gamerguy]

thank you for helping while I was asleep I felt my brain felt an indescribable way it felt so weird and I heard almost like a echoed buzz sound and then my eyes opened and I couldn't move

[marcusbrown]

I sense you’re a genuine person. I wish you the best❤