After you have a seizure, you may feel sad, disoriented, unwell or vulnerable. These are called postictal feelings. They are very common among people with epilepsy.
What does 'postictal' mean?
The postictal phase is the period right after a seizure when your brain starts to recover. Everyone experiences this differently. You may have physical symptoms, such as a headache or nausea. You might have emotional symptoms, such as anxiety, embarrassment or sadness.
David says, "After seizures, I often feel drained, foggy and emotionally vulnerable."
For Zunera, it affects her memory: "I become very confused and I just blank out."
These feelings usually last between five and thirty minutes, but they can last longer if you have a long seizure or a cluster of seizures.
Alexandra says, "I'm not quite with it for about five minutes, maybe longer." Bryony adds, "Sometimes it feels like my head is just done with thinking."
Feeling confused or "not with it"
For some young people with epilepsy, postictal feelings can leave you feeling confused and disoriented. After a seizure, Alexandra says, "I'm just so confused."
It is common to:
- Forget what happened
- Not remember conversations afterwards
- Not know where you are
- Struggle to think clearly
Alexandra notes that postictal feelings can affect her ability to look after herself:
"Have I had my breakfast? Have I taken my tablets? I don't know."
Why postictal feelings can affect mental health
Postictal feelings can include sadness, embarrassment, anger and even guilt.
David says:
"I felt embarrassed, overwhelmed – and strangely guilty."
If you have many seizures in a day, or your feelings continue after the postictal phase, they can lead to wider mental health challenges.
Bryony says:
"All of this chips away at my confidence and can feel overwhelming... I can feel left out and lonely."
Adam adds:
"Stress and fatigue made things worse."
Recurring seizures can take an emotional toll. The unpleasantness of the postictal phase can increase fear of future seizures. If you feel overwhelmed by it all, you are not alone.
What can help?
Postictal feelings may not go away completely. However, there are steps you can take to reduce their impact on your wellbeing.
Check out the mental health and wellbeing hub
Rest and recovery
After having a seizure, take your time to recover. If you need to lie down or find somewhere quiet, do so. If you have a seizure at school, make sure your Individual Healthcare Plan (IHP) clearly states that you may need recovery time. This helps staff understand how to support you.
Jessica explains how important it is to listen to your body:
"If I had a seizure, I'd just get up and carry on with my day. Looking back, I know that wasn't safe. I didn't realise how dangerous it actually was."
Let people know how you're feeling
You might not always want to talk about your mental health, and that's OK. But sharing how you're feeling with people you trust can help them understand how best to support you.
David says:
"What helps most is knowing my family has my back."
Adam adds:
"Family and friends... they're there for you."
It doesn't have to be family or friends you reach out to. A teacher, school counsellor or healthcare professional may be able to help. You can also access 24/7 text support from SHOUT.
Be kind to yourself
Seizures and postictal feelings can be difficult to experience. Needing time to recover is not a sign of weakness.
David says he felt "like I'd caused a problem for everyone else" when recovering from postictal feelings. But what is happening is a normal part of your brain's recovery process.
Be kind to yourself if you're feeling confused, irritable or upset after a seizure.
Find people who understand
No one understands what it's like to be a young person with epilepsy better than another young person with epilepsy. Finding a community of people who understand can help you feel less alone.
Our Epilepsy and Me support groups bring together young people with epilepsy in different age groups. You and your peers can share experiences and tips about postictal feelings and seizures.
Even if you don't want to talk, it can help to hear other people's experiences. You can also read blogs and stories from other young people with epilepsy, or visit The Channel, a community designed by you, for you.
"You don't have to go through it alone."
When should I ask for help?
Speak to your epilepsy team, GP or a mental health professional if:
low mood lasts for a long time
seizure anxiety becomes overwhelming
postictal feelings are affecting your school, work or relationships.
You're not alone
Having postictal feelings is a normal part of seizure recovery. By treating yourself kindly, communicating how you feel and setting healthy boundaries, they don't have to define your life.
As Bryony says:
"It might slow you down, but it doesn't take away who you are."
And David reflects:
"Living with epilepsy hasn't been easy. But I no longer see myself as a burden."
