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Psychosis and epilepsy
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What is psychosis?
Psychosis is also known as a ‘psychotic episode’ or ‘psychotic experience’. It’s when someone loses touch with reality and sees the world around them a very different way to others. This could happen as a ‘one-off’ event, or it could be part of another mental or physical health condition.
Psychosis affects everybody differently. There are some signs and symptoms that you or your family can look out for. Some of the main symptoms are hallucinations, delusions and disorganised thinking and speech. We explain more about these below:
Hallucinations could include:
- Hearing things that other people don’t
- Seeing things that other people don’t
- Tastes, smells or sensations that can’t be explained
Delusions are things that feel real but aren’t true. Some common delusions include believing you are rich and powerful, or thinking other people are trying to control or harm you.
If you have psychosis it might mean you speak very quickly and change the topic of conversation a lot. You might find it hard to concentrate on one thing.
Epilepsy and psychosis
Research shows that people with epilepsy are more likely to experience psychosis. Around 6 in every 100 people with epilepsy will be affected by psychosis. This means it’s eight times more likely to affect people who have epilepsy than people who don’t.
If you have epilepsy, you might have psychosis before, during or after a seizure. The medical words for these are explained below:
- Pre-ictal psychosis – this starts a few hours before a seizure, sometimes up to 3 days before
- Ictal psychosis – this happens whilst you are having a seizure
- Post-ictal psychosis – this starts within a week after a seizure or cluster of seizures
- Inter-ictal psychosis – this happens separately from seizures, but often lasts longer
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Pre-ictal psychosis
This is a very rare type of psychosis and we need more research to understand it better. There are lots of symptoms that show from a few hours before, up to three days before you have a seizure. These include anxiety, hallucinations, feelings of extreme happiness (euphoria), or that the world is ‘unreal’ or ‘lifeless’ (derealisation). Once the seizure begins, the symptoms usually stop. If your seizures can be controlled, then the psychosis will also normally become controlled too.
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Ictal psychosis
This type of psychosis happens whilst you are having a seizure and the psychotic symptoms are a part of the seizure itself. It often happens when a person is in non-convulsive status epilepticus. You may go in and out of consciousness during the episode and not remember what happened afterwards. Some symptoms include hallucinations and disorganised thinking or automatic behaviours (automatisms). These can include picking at your clothes or eyelid fluttering.
Because this type of psychosis only happens when you have a seizure, you can get a diagnosis with an EEG test, and the episodes tend to stop if your seizures are controlled.
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Post-ictal psychosis
Post-ictal psychosis starts less than a week after a seizure. Mostly, it is a cluster of seizures that triggers this but it can happen after a tonic clonic seizure in some people. Before it starts, you would usually have symptoms known as the ‘hypomanic state’. These include severe anxiety, trouble sleeping (insomnia) and derealisation. If these are treated quickly, it can sometimes stop the psychosis before it starts.
Post-ictal psychosis is the most common type of psychosis in epilepsy. It can last between 15 hours and two months, but it usually lasts between one and two weeks. You may have hallucinations and delusions during this time. Sometimes people are aggressive or violent, including harming themselves, during post-ictal psychosis. Some research suggests around 1 in 5 people with this type of psychosis show aggression during the episode. Because this can be a dangerous condition, it needs immediate medical attention and treatment. Some people only have one episode of post-ictal psychosis, but around half will have more than one episode. Some people may then develop inter-ictal psychosis.
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Inter-ictal psychosis
Inter-ictal psychosis happens between seizures. This is rarer than post-ictal psychosis and the episodes tend to last longer. It often happens more than once and over a period of time. Inter-ictal psychosis often happens for the first time 10-15 years after the person’s first seizure. Research has shown that the average age for the psychosis to begin is 30.
This type of psychosis can look very similar to schizophrenia, but the long-term outlook is better. This is because the symptoms often get milder over time. If you have inter-ictal psychosis you will not usually have the personality changes that people with schizophrenia have.
The NHS website has more information on schizophrenia.
The symptoms of inter-ictal psychosis include paranoid delusions, hallucinations, and catatonia. Catatonia is a disorder affecting your ability to move in a normal way. Some people have mystical or religious experiences.
It can be difficult to tell inter and post-ictal psychosis apart, and many people have both.
Is psychosis likely to affect me?
Some people with epilepsy are more likely to have psychosis than others. These are some things that might make you more likely to have a psychotic episode:
- If someone in your family has had psychosis or a similar disorder
- Having epilepsy from a young age
- Seizures that start in the temporal lobe
- A physical problem in the brain
- Brain injuries
- If you’ve had status epilepticus
- If you had febrile seizures
- Seizures that are not under control with epilepsy treatments
What should I do if I think I have psychosis?
If you are worried that you, or someone you care for, is experiencing psychosis, you will need to seek urgent medical advice from:
- Your GP
- An epilepsy specialist or mental health professional (if you have one)
- An NHS advisor by calling 111
If the symptoms are severe and could be putting you or someone else in danger, you might need to get some emergency help by calling 999.
The Rethink Mental Illness website has more information on what to do if you are worried about someone’s mental health.
How is psychosis diagnosed?
Psychosis should be diagnosed by a specialist, because it can look like other seizure types and conditions. They will do this by taking a full medical history. You might also need a detailed assessment process and tests to be sure.
Specialist mental health services should be involved as soon as possible to assess whether the person is experiencing psychosis. This could be an early intervention in psychosis team (EIT) or Community Mental Health Team (CMHT).
How is psychosis treated?
More research is needed into which treatments might be best for people with epilepsy and psychosis. Depending on the type of psychosis you have, your doctor might suggest taking medicine to stop or reduce psychotic symptoms. This could be benzodiazepines or low dose anti-psychotic medicines. Some anti-psychotic medicines can interact with certain epilepsy medicines. Your specialist will need to take this into account when recommending a medicine.
Another way to lower the risk of any kind of psychosis is to have your seizures under control. This can make some types of psychosis go away. Pre-ictal and ictal are examples of this. Your specialist may try different epilepsy medicines to try and reduce the amount of seizures you have.
Are there any other types of psychosis related to epilepsy?
Some epilepsy medicines have a small increased risk of psychotic symptoms as a side effect. These include:
- Topiramate
- Vigabatrin
- Zonisamide
- Levetiracetam
- Gabapentin
- Lamotrigine
- Tiagabine
It can be worrying to take medicine with these possible side effects. But symptoms usually go away as soon as the medication is stopped. You can get support from your specialist, GP or epilepsy specialist nurse.
Support organisations
Hearing Voices Network
An organisation supporting those who hear voices or see visions
Email: info@hearing-voices.org
Mind
A charity supporting those who are affected by mental health conditions
Email: info@mind.org.uk
Infoline: 0300 123 3393
Samaritans
A charity supporting those struggling with mental health, open 24 hours a day, every day of the year. There’s also a face-to-face service, available at their local branches
Email: jo@samaritans.org
Telephone: 116 123
A charity working to improve the lives of people severely effected by mental illness with a web chat service
Email: advice@rethink.org
Telephone: 0808 801 0525
This information has been produced under the terms of the PIF TICK. The PIF TICK is the UK-wide Quality Mark for Health Information. Please contact website@epilepsy.org.uk if you would like a reference list for this information.
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