Focal seizures can be subtle, quiet, and easily missed. But they’re real, and they can be confusing, scary, and exhausting for the person going through them.
We asked young people and families to describe what a focal 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.
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.
No one can tell when I’m having a focal seizure. I look the same. I go quiet and observe my surroundings much more.
From the Youth Voice Network. A reminder that not all seizures are visible.
I feel really confused and I lose a lot of my basic memory - like the directions to my bedroom.
A young person describing how focal seizures affect their thinking and awareness.
I stare off into space. I can’t speak but I feel myself blink repeatedly. I feel like I’m fading.
A powerful sensory description of what it feels like from the inside.
I have had seizures where I am fully conscious and aware but have no control - it’s terrifying.
A young person sharing the emotional impact of being aware but unable to act.
Before a seizure I scream or let out a cry. Then I drop suddenly and my arms and legs jerk. Sometimes I look dazed and stare off into space.
A layered description showing how focal seizures can vary from moment to moment.
I will make you aware before I have a seizure because I have something called an aura - a warning sign.
A young person explaining how they try to prepare others around them.
With my focal seizures I am aware of where I am and who I’m with, but I can’t respond. I need to be reassured that I’m safe.
A clear call for compassion and calm from someone who knows what helps.
My son has a variety of symptoms - odd cry, twitching, chewing, staring, rubbing eyes.
A parent describing the many ways focal seizures can show up.
It feels like you’re trapped in a maze that you can’t escape - it’s sickening.
A vivid metaphor for the disorientation and emotional toll.
Whatever I’m doing stops instantly - I forget what I was doing and just stare.
A young person describing how focal seizures interrupt everyday life.
How to help someone who is having a focal 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.
If you see someone having a focal seizure, follow these steps:
- Time how long the seizure lasts.
- Reassure them and speak calmly to them.
- Guide them away from danger.
Please do
• Stay with them until they’re fully conscious and any confusion has stopped
• Explain anything that they have missed
• Keep a record of the seizure, including how long it lasted, when it happened and what it looked like
Please don’t
• Restrain them.
• Do anything that could frighten them, such as making abrupt movements or shouting at them
• Assume they’re aware of what’s happening or what has happened
• Give them anything to eat or drink until they’re fully recovered
• Try to bring them round
Call an ambulance if:
- the seizure lasts for more than 5 minutes
- they have one seizure after another without coming round, or
- they have seriously injured themself.
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.
