Myoclonic seizures are quick, sudden, and often misunderstood. They can look like clumsiness or twitching but they’re actually brief bursts of electrical activity in the brain.
We asked young people and families to describe what a myoclonic 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 Myoclonic seizure?
‘Myo’ means muscle and ‘clonic’ means jerk. Myoclonic seizures cause sudden, shock-like muscle contractions - usually in the arms, legs, or body.
Here’s what you might see:
- Sudden jerks or twitches.
- Dropping objects or falling.
- Brief loss of awareness (sometimes).
- Movements that look clumsy or random.
- Often happen just after waking or when tired.
They’re usually very short - but they can be intense, painful, and disruptive.
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.
Scary and uncontrollable.
A simple but powerful description of how overwhelming these seizures can feel.
I have focal myoclonic which happens sometimes. Like randomly one massive jerk would happen - it’s terrible.
A young person describing the unpredictability and intensity of their seizures.
My first myoclonic: left arm was shaking but right arm was fine - felt like I was in two different bodies.
A vivid account of how seizures can affect different parts of the body in strange ways.
Conscious throughout the seizure, is very brief for me, so dangerous - often drop things.
A reminder that even short seizures can have serious consequences.
All my limbs move at once suddenly and it’s tingly everywhere and so painful.
A sensory description that helps others understand the physical impact.
My myoclonic jerks would affect my motor skills, getting so bad that my jerks would push me to the ground.
A young person sharing how seizures affect their mobility and safety.
These are the only types of seizures I’m conscious for and are so dangerous. Often people mistake them for me being clumsy.
A powerful reminder of how misunderstood myoclonic seizures can be.
My daughter’s most recent seizures have appeared like this. Very short sporadic electric shock type movements in her sleep followed by her vomiting.
A parent describing how seizures show up differently in sleep and how they’re changing over time.
Before a seizure I scream or let out a cry. Then I drop suddenly to the ground and my arms and legs jerk.
From the Youth Voice Network. A clear and personal account of how a seizure begins.
Sometimes a part of my body may give a single jerk and I am still aware. Sometimes I may look dazed and stare off into space.
A young person describing the range of experiences within a single seizure type.
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.
How can you help someone having a myoclonic 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.
Even though they only last a few seconds, a myoclonic seizure can be scary and confusing for both the person experiencing it and the person witnessing it. But you can help.
To help someone who is having a myoclonic seizure, follow these steps:
- 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 try and restrain them.
- Don’t let strangers film them on their phones.
- Please don't put anything in their mouth.
- Listen to how they want to be supported.
- How they feel after the seizure can be different each time.
- They might feel tired, confused and upset. Or they might feel okay.
Call an ambulance if they’ve seriously injured themself, or if they have lots of seizures in a short space of time.
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.
