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Non-epileptic attack disorder

What is non-epileptic attack disorder (NEAD)?

Non-epileptic attacks are events that can look like an epileptic seizure, but they are not the same as having epilepsy. During a non-epileptic attack, the ability to control the body changes. Symptoms vary and everybody's experience of NEAD will be different.

Unlike epileptic seizures, non-epileptic attacks are not caused by abnormal electrical activity in the brain. NEAD may be helped by psychological treatment, and many people may find it helpful to meet with a psychologist or psychiatrist as well as their doctor or neurologist.

Our service diagnoses and cares for children and young people with NEAD. Together with the psychology team we decide what the best options for ongoing support will be. Support can take place at Evelina London or sometimes it may be possible for you or your child to access support closer to home.

If you, or someone you know, have NEAD, you may find our specially created film helpful.

About non-epileptic attack disorder (NEAD) – video transcript

Holly: It all started with a faint. We had the ambulance come and they took me to hospital to check me over and then that's when I started to have a proper seizure.

Jasmine: Before I had seizures, I was pretty much just your average 12 year old in school hanging around with friends thinking I was really cool when I wasn't [laughs].

Molly: I felt like this was like the happiest I've ever been and I was so looking forward to starting college then like the next day I woke up with a really bad stomach pain then I just had my first seizure.

[TEXT] Non-epileptic attack disorder (NEAD) is a condition that causes events that can look like epileptic seizures.

Jasmine: The first time I ever heard of NEAD was when I was diagnosed. I was like what? What is this? I’ve never heard of that before.

Holly: There isn't a medicine you can take and you're better, it's to do with your feelings.

[TEXT] But while epilepsy is caused by abnormal electrical activity in the brain, NEAD is not. It cannot be treated with epilepsy medication.

Molly: It broke my heart, I was no longer the person that I wanted to be.

Holly: I felt very isolated and it made me feel very stressed.

Jasmine: I have lots of different types of seizures, a classic convulsion seizure, a blackout seizure which just looks like fainting or passing out.

Holly: Silent seizures and ones where they're very violent and I kick out.

Molly: So my vision goes really weird and it goes really dark and slightly pixelated. You know when you're underwater and you can hear people above you and then eventually it's that you start hearing this like 'Molly! Molly!' And you’re like, what is happening?

Jasmine: My attendance at school is fairly poor.

Holly: I wasn't allowed to get on trains or anything on my own, or be on my own and because I was becoming a teenager, people, my friends, are being more independent. I felt isolated.

Jasmine: It does frustrate me sometimes when I haven't been able to go out with my friends because I'm having a bad day with the seizures or something.

Molly: My Mum would always be phoning me and texting me, saying are you OK? I didn't want her there, you know, I wanted her to leave me alone like a normal teenager.

[TEXT] Getting the right diagnosis and treatment can be difficult. Many young people say their symptoms are not believed. But NEAD is very real.

Holly: First of all they thought it was a brain tumour, and then they thought it was epilepsy and I was having seizures upon seizures. One day I had 93.

Molly: My consultant put his hands up and said 'I don't know how to help you' and then that's when I came here to St Thomas', and the Evelina, and my life changed [laughs].

[TEXT] Over time, different types of doctors and psychologists help people understand NEAD and think through ways to cope.

Molly: I felt safe, I felt like they genuinely wanted to help me.

Jasmine: I was basically just a robot, almost like a machine. Emotions are icky, they're messy, I don't do them. It’s like I'm shut off from the world.

Holly: I was thinking I don't want to tell anyone, I was embarrassed because they might think if you’re seeing a psychologist that you're going crazy.

Jasmine: Well I was very definitely a big sceptic going into my first psychology meeting but you've got to work your way through it. She suggested why some of the things I do and the things I feel might be happening.

Holly: I've learned to talk to people because I used to hold everything in and I'd just bottle it up. And then the way I deal with it I suppose is a seizure.

[TEXT] Young people can also find ways to connect to things that really matter to them.

Holly: I feel like dancing helped me because I can express my feelings through dance, especially during ballet, and I thought it let my feelings go and I could be... I felt more happy.

Molly: Going to the gym makes me feel so good, it just gives me that sense of control.

Jasmine: Drama for me is... it's definitely one of the best things I could have possibly gotten interested in. Because it's just... it's so freeing, like you don't have any of your problems at that time and it's like you can forget all about that and you can just be that person in that moment and you don't have to worry about anything.

Holly: I think the most important thing to do is accept the fact that you've got NEAD and it will be OK.

Molly: This is, it's who I am now. And it's something that I need to, and I have, accepted.

Jasmine: I'm not alone in this, somebody else has gone through this, and they know how I'm feeling. It's just very comforting.

Molly: Everything will be okay.

Holly: If you have great support, then you'll be fine.

 

This film has been produced for education and support purposes and is not intended as a substitute for medical or professional care. If you have specific questions or concerns about yourself or somebody you know, please speak to your doctor.

©  Guy's and St Thomas' NHS Foundation Trust.
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