One of our social media followers shares their experiences of post-ictal psychosis and how their diagnosis of epilepsy has changed their life.

Have you heard of post-ictal psychosis? I hadn’t.

In the summer of 2023, I was waking up in hospital and was clearly unwell; what happened next feels very unclear.

Epilepsy diagnosis

I remember being calmed by a doctor and told “you’ve had seizures.”

The memories of the following days are scarce and fragmented because of numerous tonic-clonic seizures in that time.

Various tests were done but I don’t really remember them. Aneurysm – no. Stroke – no. Epilepsy – yes!

I’ve been told by some people I’m lucky to have had a diagnosis made within days. That’s not something I’m able to agree with.

The following days, weeks, and months were spent in shock and fear. I reached out to Epilepsy Scotland early on in that time.

Initially, I had thought epilepsy was only something children were born with or could be caused by head injuries as an adult.

I remember watching something on TV and there were flashing lights, but I didn’t have a seizure, which made no sense to me. Flashing lights cause seizures if you’re epileptic, right? Wrong.

I was prescribed ever increasing amounts of anti-epileptic drugs.

My tonic-clonic seizures continued, and caused frequent, various physical injuries. It all had a huge impact on my mental health.

I have no idea what I would have done without the check-ins with Uschi.

Post-ictal psychosis

As the seizures continued, and the dose was increased, I was yet again admitted to the neurology ward.

While in hospital, I experienced clusters of tonic-clonic seizures. With that came terrifying, persecutory thoughts.

Those thoughts made me eventually ‘flee’ from the hospital. I felt I had no other option. I made it home, eventually, but I have no idea how.

A few days later, there was another emergency admission to hospital when I had another cluster of tonic-clonic seizures.

At the time of the seizures, I was with someone who was able to provide the support I needed. That person also timed the seizures, the length of times between them and gave me a huge amount of care until an ambulance arrived.

It’s possible that this second cluster of tonic-clonic seizures happened because I had not taken my medication since ‘fleeing’ the hospital a few days earlier.

The delusional thoughts I had about medications made it too frightening for me to take them. It would have been impossible for me at that time to know what doses to take and when.

I later found out what I had experienced was called post-ictal psychosis.

People and places I know and love, and the world in general, were terrifying during that time. I can’t even begin to describe what harm experiencing post-ictal psychosis has done to me.

How I survived the following days or weeks having fled hospital is anyone’s guess. A combination of luck, love, friendships, and care coming from many directions are the best of those guesses.

Seeking help

Having begun to feel a bit better it became possible for me to speak with Uschi and some other trusted people in a more coherent way about what had happened.

It was exhausting but with the help of many of those people, including my GP and MSP, an appointment was arranged with my consultant neurologist soon after.

During that appointment, I could see that my neurologist was concerned and prescribed an additional anti-epileptic drug to try and reduce seizure frequency.

But what I really wanted to happen was to never have a cluster of tonic-clonic seizures again to avoid further episodes of post-ictal psychosis.

It terrified me that these almost ended my life more than once during the previous weeks.

Around four hours later, I left the outpatients department having been assessed by a psychiatrist in the neurology outpatient department with a clear plan put in place: if a cluster happens again or is suspected to have happened, I need to take antipsychotic drugs for a period of time.

This would hopefully prevent me going into another episode of post-ictal psychosis.

Living with seizures and the fear of post-ictal psychosis

Living in fear of a cluster is normal now for me, and it’s hard. It’s a wait and see game after every tonic-clonic seizure.

Post-ictal psychosis usually takes at least 24/48 hours to develop for me after a cluster. The challenge is that unless someone else has witnessed one of my seizures, I can’t know whether one or more seizures have happened.

Many medical professionals I’ve come across had never heard of post-ictal psychosis, but all have been more than patient and ready to learn.

I have not had a cluster of tonic-clonic seizures since late 2023, but my tonic-clonic and focal seizures have continued.

I am due to start yet another anti-epileptic drug. It’s definitely the right plan but I find any changes with epilepsy treatments frightening.

I’m very grateful for having a consultant who has been there since the beginning and who I have a huge amount of faith in.

My GP has been amazing and has done so much to help with my injuries caused by seizures. He’s also helped with many of the other impacts epilepsy has had on me.

Uschi’s support in particular, but Epilepsy Scotland in general, has been so helpful, giving me a better understanding of adult-onset epilepsy but also post-ictal psychosis.

Life has changed in many ways since developing epilepsy. I am now avoiding those places where I had a seizure. I have ended relationships with people who witnessed seizures.

All of this has been one of the hardest things. I also had to pause some sport that wouldn’t be safe until there’s better seizure control.

I still have not had four weeks without a tonic-clonic seizure. It’s looking like those pauses on sports have become permanent.

Epilepsy has had a huge impact on my life, and it has gone beyond having seizures.

I feel so strongly that we need to talk more about post-ictal psychosis and spread awareness of this.

Support and further information

If you have been affected by this, or want to find out more about post-ictal psychosis, please contact our helpline on 0808 800 2200, or email contact@epilepsyscotland.org.uk.

Post-ictal psychosis only happens to a small number of people whose epilepsy is not controlled by medication.

It is more common in those who experience clusters of tonic-clonic seizures.

Post-ictal psychosis can appear within a few days, and up to a week, after seemingly having recovered from a seizure.

Psychosis is a medical term used when someone loses touch with reality. There is an initial recovery period after a seizure (the lucid phase) where the person seems to be recovering well.

After the recovery period the person may start to experience delusions, hallucinations, or unusual behaviour.

These are often paranoid or fearful. This is called post-ictal psychosis. Post-ictal psychosis can last days or even weeks.