Lived experience — Stephanie Adams
People often see the seizure. They do not always see the day after it.
This is one person’s experience. It is not a description of what recovery looks like for everyone with epilepsy.
For me, recovery is not measured by the moment the visible seizure stops. Sometimes that is only the beginning of getting back to myself.
I can sleep afterwards and still wake up feeling as though my brain has not caught up. I may be exhausted, slow, sore or foggy. Things that would normally be simple can feel like work. I can know I am awake and still not feel properly recovered.
The difficult part is that other people may see me standing, talking or moving around and assume the episode is over. From the outside, the emergency-looking part has finished. From the inside, I may still be trying to work out where I am in the day, what has happened and why I feel so drained.
There are also gaps. Sometimes the people around me know more about what happened than I do. That can make the next day strange: I am recovering from something I did not experience in the same way as the person who witnessed it.
When recovery takes longer, everyday life does not stop politely and wait. Messages still arrive. Appointments still exist. Plans still need changing. I may look as though I am back, while I am still using most of my energy simply to get through the day.
That is one of the hidden parts of epilepsy for me. The seizure may be the part people notice. The recovery can be the part I actually have to live with for much longer.
What the evidence says
The postictal state is the period between the end of a seizure and return towards a person’s baseline. Research describes cognitive, physical and behavioural effects including confusion, memory problems, reduced responsiveness, headache, fatigue and other symptoms. Duration varies widely between people and seizure types; some manifestations can persist well beyond the visible seizure.
Pottkämper et al., Epilepsia (2020) — The postictal state: what do we know?
Khan et al., Epilepsy & Behavior (2019) — systematic review of postictal signs and symptoms