Your brain might sound something like this:
What if I have a seizure today?
What if it happens in front of everyone?
What if it happens while I’m asleep?
These “what if” thoughts are something lots of young people with epilepsy talk about.
They can show up as anxiety around seizures: worry about when a seizure might happen, who might see it, or whether you’ll be safe. This blog is about those worries and reassurance loops. It isn’t medical guidance. If your seizures, sleep, anxiety or safety concerns change, speak to your epilepsy team, GP or another trusted health professional.
What the “what if” loop feels like
The tricky thing is, it’s not just one thought.
It’s a whole chain:
What if I have a seizure? ➡️ What if no one notices? ➡️ What if it happens at night?
This is how the worry loop can build. One thought leads to another, and before you know it, your brain is trying to answer questions it can’t fully know the answer to.
For some people, the worry feels strongest at night. You might find yourself thinking about seizures while you’re trying to sleep, or feeling nervous about having a seizure overnight. That can make it harder to rest, which can then make the worry feel even bigger.
I would hide so no one would see
Fear of seizures isn’t just about the seizure itself. It’s also about how it might feel around other people might react. We know from research that lots of young people struggle with talking about epilepsy with others, and worrying about having a seizure in front of other people.
One young person shared:
“I would hide because I wouldn’t like anyone to see me have one.”
Another said:
“I felt very isolated growing up… I just wanted to be like the other kids.”
That mix of fear, embarrassment and wanting to fit in can make seizure worries feel even bigger.
Why reassurance doesn’t always help
When those thoughts hit, it’s completely normal to look for reassurance:
- asking someone if you’ll be okay
- checking symptoms or triggers
- avoiding certain situations
It can feel better in the moment. But it doesn’t last.
That’s because reassurance can keep the loop going. It teaches your brain:
I need reassurance to feel safe.
The more your brain learns that it needs reassurance, the stronger the anxiety seizure cycle/seizure anxiety cycle can become.
How anxiety and seizures can link
Everyone’s experience is different, but there are recognised links between anxiety and epilepsy.
Anxiety is common in people with epilepsy. Sometimes it can be linked to fear of having another seizure, remembering a past seizure, or worrying about what other people might think.
Anxiety can also feel very physical. It might make your heart race, affect your breathing, make you feel shaky, dizzy or out of control. That can be frightening, especially if some of those feelings remind you of seizures. But anxiety symptoms are not the same as epileptic seizures. If you’re unsure what you’re experiencing, it’s important to speak to a health professional.
They also highlight that stress and anxiety can affect the body in ways that matter for seizures:
- anxiety can disrupt sleep
- poor sleep can be a trigger for some people
- long-term stress may increase the likelihood of seizures for some people
Anxiety can create a cycle of worry, where thinking about fears repeatedly can make them feel more intense and harder to control.
So if you’re stuck in a “what if I have a seizure?” loop, it doesn’t mean something is wrong with you. It’s a recognised pattern that can happen when anxiety builds.
You might also worry about seizures at night. For some people, poor sleep can make seizures more likely. For others, the fear of having a seizure overnight can make it harder to fall asleep. Either way, you deserve support if night-time worries are affecting your rest.
It’s important to remember:
- anxiety doesn’t cause all seizures
- and this isn’t something you’re choosing or doing on purpose
But understanding the link can help you start to feel a bit more in control.
Stepping out of the reassurance cycle
There isn’t one quick fix, and you don’t have to deal with it on your own. But there are small things that can help.
- Notice the pattern
Start to spot when the “what if” thoughts show up.
- Name the thought
“This is a ‘what if’ thought.”
Even doing this once can create a bit of space.
- Try not to rush to reassurance
This can be really hard, so start small. Even waiting a few minutes before checking or asking again can help your brain learn that you can sit with the worry without doing something straight away.
- Focus on what you can control
You can’t control every seizure. But you can:
- stick to routines that support your health
- follow your care plan
- let people around you know what to do
That can make the worry feel less overwhelming.
- Don’t bottle it up
A lot of young people describe keeping everything inside:
“I think I just bottled it up.”
Talking to someone you trust can make a difference - even if it’s just saying how your brain feels that day.
- You’re not alone in this
If your brain keeps asking:
“What if I have a seizure?”
…you’re not the only one.
The fear, the overthinking, the need to check, the worry about seizures at night — these are things many young people with epilepsy deal with.
And even though the loop feels strong, it isn’t permanent.
With the right support, and small steps over time, it is possible to feel more in control.
If these worries are affecting your sleep, school, friendships or day-to-day life, you deserve support. You could talk to a parent, carer, teacher, school nurse, GP, epilepsy nurse or another trusted adult.
