Seizure Questions to Ask
Practical questions to ask someone who has seizures, whether you are a partner, friend, colleague or new carer: what a seizure looks like for them, what to do and what not to do, when to call for help, and what they need afterwards.
The questions
Open any question for the note
What do your seizures look like from the outside?
Why ask it
Descriptions vary much more than people expect. A seizure can involve collapse and shaking, or it can look like staring, lip smacking or confused speech. Knowing which to expect is what lets you recognise one rather than assume they are distracted.
Do you get any warning before one, and what does it feel like?
Why ask it
Some people get a reliable warning, some get an unreliable one, and some get none at all. Where there is a warning, ask what they want to happen in those seconds, which is usually getting to the floor or to a seat safely.
How long do they usually last?
Why ask it
Duration sets the threshold for calling for help, so it helps to have their usual length in seconds or minutes. With that number, an unusually long seizure becomes obvious instead of a judgement call under pressure.
How often are they happening at the moment?
Why ask it
Frequency shifts, particularly after a change of medication. Asking about now rather than in general gives you a current picture and keeps you from treating a year-old answer as permanent.
What should I do while it's happening?
Why ask it
The answer is usually short and practical: stay with them, note the time, put something soft under the head, move anything hard out of the way. Hearing it in their words means you are not improvising on the day.
What should I not do, even if it looks like it would help?
Why ask it
There are specific things to avoid, including putting anything in their mouth, holding them down, or trying to stop the movements. Better to hear these from them than to act on a half-remembered scene from a film.
At what point should I call an ambulance?
Why ask it
The one question to get an explicit answer to. Ask for their threshold, often a set number of minutes, a second seizure without recovery in between, an injury, or breathing that does not settle, and keep it written down somewhere you can find it quickly.
Do you carry rescue medication, and do you want me to know how it's given?
Why ask it
Some people have emergency medication with clear instructions, others do not. If they do, ask whether they want you shown how to use it, and accept it without argument if they would rather that stayed with family or a nurse.
Do you want other people told afterwards, or would you rather I didn't?
Why ask it
The decision is theirs. Asking prevents the common mistake of explaining to a room of colleagues or relatives afterwards, which many people find harder to deal with than the seizure itself.
What do you need in the first few minutes afterwards?
Why ask it
Needs differ: quiet, space, help getting somewhere private, a coat over the legs, someone keeping onlookers back. Asking in advance means you are not guessing while they are still confused.
How long does it take before you feel like yourself again?
Why ask it
Recovery can take minutes or most of a day, and it is common to be exhausted or unable to find words for a while. Knowing their usual pattern stops you either fussing or leaving too early.
Do you want me to tell you what happened, or would you rather not hear it?
Why ask it
Some people want the details so they can record them; others find hearing about it distressing. This one question keeps a well-meant description from becoming the worst part of their day.
Is there anyone you want me to call, and anyone you'd rather I didn't?
Why ask it
The names matter in both directions. There is often one person to contact straight away and a relative they would rather did not arrive, and only they can tell you which is which.
Are there things that make a seizure more likely for you?
Why ask it
Ask about what makes one more likely rather than what causes them, because most people have patterns rather than certainties: missed sleep, illness, a missed dose, alcohol, and for some, flashing light. Treat the answer as information for planning, not grounds for policing their choices.
Where would you want me to stay close by: water, cooking, stairs, crowds?
Why ask it
A practical question about specific places rather than about risk in general. Let them set the list, since most people have thought about this far more carefully than you have.
Are you able to drive at the moment, and how are you getting around?
Why ask it
Driving is restricted after a seizure in most places, and the rules set specific time periods. Asking how they are managing journeys is more useful than asking about the law, and it often surfaces something practical you can help with.
What have you told people at work or school, and how do you want it handled there?
Why ask it
Workplaces and schools handle this very differently. Knowing what has been disclosed keeps you from mentioning it to a manager or teacher who was never told, and it sometimes surfaces an adjustment they have been putting off asking for.
What's the most frustrating thing people do when they find out?
Why ask it
This gives room for the honest answer: being watched, being treated as fragile, being asked to describe it again and again. It also tells you which of your own instincts to hold back.
Is there anything about this you'd rather I didn't keep asking about?
Why ask it
A short question that hands the boundary to them. Some people are happy to talk about it at length, and others live with it daily and would rather it not come up every time you meet.
Would it help to have someone at your appointments, or would you rather go alone?
Why ask it
A second person taking notes is useful to some people and an intrusion to others. Asking, rather than offering to come along, makes it straightforward to say no.
Supporting Someone Who Has Seizures
Practical guidance for the conversation itself
General First Aid Guidance
Their own plan comes first
Many people have a written seizure plan from their clinician or an epilepsy service. Where that plan differs from general advice, follow the plan. The questions on this page exist mainly to find out whether one exists and what it says.
What is usually advised during a convulsive seizure
Stay with them and note the time it starts. Move hard or sharp objects away, cushion the head, and loosen anything tight at the neck. Do not restrain them and do not put anything in their mouth. When the movements stop, help them onto their side and stay until they are fully aware of where they are.
Seizures that do not involve collapse
For seizures where someone is confused, staring or wandering, guidance is usually to guide them gently away from hazards, speak calmly, and avoid grabbing or restraining. They may not remember the episode, so tell them afterwards only if they have said they want to know.
When emergency help is generally advised
Common thresholds are a convulsive seizure lasting more than five minutes, one seizure following another without recovery in between, a first-ever seizure, an injury, difficulty breathing, a seizure in water, or someone who does not regain awareness. Ask them for their own threshold as well, because it may be lower.
How to Ask These Questions
- Ask when nothing is happening, not in the hour after a seizure. Recall is often poor afterwards, and being questioned during recovery is tiring.
- Take three or four questions at a time rather than the whole list. This is a conversation you can return to over months.
- Write the answers down, especially the emergency threshold, the rescue medication instructions, and who to call. Memory is unreliable at exactly the moment you need these.
- Ask once about the sensations and do not ask again. Being asked repeatedly to describe what a seizure feels like is one of the most common complaints people report.
- Check back after a change in medication or a change in frequency, since the practical answers often change with it.
What to Avoid
Filming or photographing a seizure
Occasionally a clinician asks for a recording, and in that case the person will tell you so themselves. Otherwise it is not yours to record, and it is not something to share with anyone.
Telling the story afterwards
Explaining what happened to colleagues, relatives or a group chat removes the person's control over their own medical information. If people have questions, the answer is that they should ask them directly.
Talking about them in the third person while they recover
People often hear more than they can respond to during recovery. Speak to them, keep the surrounding commentary short, and give them somewhere quiet rather than an audience.
Offering diet and supplement advice
Suggestions about foods, oils or sleep routines, however well intended, tend to imply the condition is theirs to fix. Treatment decisions belong with them and their clinician.
Treating every seizure as an emergency
For someone with frequent seizures, an unnecessary ambulance can mean a lost day and an unwanted hospital visit. That is exactly why the threshold question matters, and why the answer should be written down.
If You Are a Colleague, Teacher or New Carer
Find out who holds the plan
In workplaces and schools there is often a documented plan with a named first aider. Ask who holds it and whether you are meant to have read it, rather than assembling your own version.
Keep disclosure narrow
Being told about someone's epilepsy is not permission to pass it on. Ask directly who already knows and who they want informed, and keep to that list.
Ask what they want after an episode at work
Some people want to go home, others want ten quiet minutes and then to carry on. Agreeing this in advance avoids a decision being made for them in front of an audience.
For a child, ask the parents and the child separately
Parents know the medical detail and the plan. The child knows what makes them feel singled out in a classroom, and that is worth asking about in its own right.