Tonic seizures can be sudden and intense. But behind every seizure is someone with their own story to tell, and a community that gets it.
We asked young people and families to describe what a tonic seizure feels like. Their words are honest, powerful, and full of insight. Whether you’re living with epilepsy, supporting someone who is, or just want to understand better - this is for you.
What is a tonic seizure?
You’ve described it to us as the one where your body suddenly goes stiff. If you’re standing, you might fall over. You can’t move or respond, and you’re totally unaware it’s happening.
Here’s what you might see:
- The person’s body becomes rigid.
- Their arms may lift or stretch.
- Their back might arch.
- There’s no jerking, but they may fall suddenly.
- They may make a sound or have their eyes roll back.
Afterwards, they might feel confused, tired, or upset. They often don’t remember what just happened and may need time to recover.
In your words: Powerful quotes from your community
These quotes come from our social media community, the Youth Voice Network, and Young Epilepsy’s own resources - real people, real experiences, and real strength.
My daughter had her first tonic seizure - she just suddenly went completely rigid and dropped.
A parent describing the sudden and shocking onset of a tonic seizure.
The world stops… my body stiffens, my arms come up and get ‘stuck’.
A young person from the Youth Voice Network, sharing the intense physical sensation of a tonic seizure.
Their body suddenly goes stiff, and they can’t move. If they are standing, they will fall over.
From Young Epilepsy’s friendly seizure descriptions. A clear and simple explanation for young people.
The muscles in their chest, arms and legs tighten and become rigid. Their back arches but there’s no jerking.
A helpful breakdown of what’s happening physically during a tonic seizure.
It’s like your whole body locks up in an instant - stiff as a board, frozen mid-move, and you are totally unaware it’s happening.
From the CYPE film script. A vivid metaphor that helps others understand what it feels like.
Sometimes you might stretch your neck, raise your arms, cry out or your eyes roll back.
A description from the Young Epilepsy website that helps people recognise the signs.
My body suddenly goes stiff and I fall down. I won’t be able to talk and I’m not aware of what is happening.
From the film script. A young person’s direct account of what it feels like to have a tonic seizure.
My sister says that sometimes I stretch my neck and raise my arms. My friends say my eyes tend to roll back, and sometimes I cry out.
A young person sharing how others describe their seizures, helping to build understanding.
A seizure can be upsetting and confusing both for me and you.
A reminder that seizures affect everyone involved, and empathy matters.
It might look scary, but it’s just the seizure happening, and I can’t control it.
A young person helping others understand that what they’re seeing isn’t something to fear - it’s something to support.
How to help someone who is having a tonic seizure
You told us what really helps when you're having a seizure, and we listened. This guidance is shaped by a powerful mix of lived experience and clinically informed expert advice, coming together to help others know what to do.
To help someone who is having a tonic seizure, follow these steps:
- Time how long their seizures lasts.
- Stay with them and make sure they’re safe.
- Move any hazards, like furniture, out of the way.
- Don’t move them unless it’s absolutely necessary, for example, if they are close to a hazard that cannot be moved, like an open fire, roads or open water.
- Be calm and reassure them, even if you think they can't hear you. This isn’t always easy, but it’s very important, especially when the person is recovering from the seizure and looking to you for reassurance.
- Make sure they’re okay and haven’t hurt themself.
- Don’t let strangers crowd around or film them on their phone.
- Please don’t put anything in their mouth.
- Don’t hold them down or try to bring them round.
- Listen to how they want to be supported.
- How they feel after the seizure can be different each time, they might be weak, confused and upset. Or they might feel okay.
Call an ambulance if:
- the seizure lasts for more than five minutes
- they have one seizure after another before they have recovered, or
- they have seriously injured themself
The person may have an emergency management or care plan. If they do, you should follow the instructions in their plan. Their plan may include giving them their prescribed emergency medication, but do not administer emergency medication unless you are trained to do so. If you have to call 999, stay on the line and follow the guidance of the call handler. Find out more about emergency medication.
Share your story!
If you’d like to share your thoughts on how you would describe atonic seizures, or if you have tips for others, get in touch with Young Epilepsy. Your voice can help others feel less alone and more understood.
