Focal seizures are often under-portrayed in the media and often misunderstood by onlookers and bystanders, despite being the most common type of seizure.
They can look and feel very different from person to person, and the aftereffects of a focal seizure can also vary.
We share some recent research and your real-life experiences of what focal seizures feel like.
Some common experiences
Everyone experiences focal seizures differently. For some they are short, for some they’re longer. Some people have more ‘typical’ characteristics, while others have more unusual ones. The way people feel during a focal seizure can also differ.
We asked you on our social media to share how your focal seizures feel. You shared openly your experiences – thank you! – and there were a few more common elements:
- A feeling of déjà vu
- Stomach flipping, like being on a rollercoaster
- A feeling of anxiety
- Feeling hot
- Confusion after the seizure
- Lost control of speech
- Everything slowing down
- Headache
What people said
However, everyone’s description showed how unique this experience is to each person.
One person said: “I get an odd sensation in my lips which often spreads to my tongue and teeth/gums. No one apart from my other half knows I’m having them, but they’re so intense to me!”
Another added: “Focal seizures are just as real and just as scary [as tonic-clonics]. My focal seizures would involve lip smacking/chewing, hand rubbing, smacking my legs, rocking backwards and forwards and pulling at my clothes.
“After the seizure my speech can be affected for a while and I am normally very confused.”
An Instagram user explained: “My body heat goes supernova. I can’t really talk or respond. It’s like I’m watching myself from behind myself.”
Another shared: “Before I was diagnosed, I used to hear the white rabbit from Alice in Wonderland during [focal seizures], but my meds have stopped that. I feel like I’m not real but still aware at the same time, and can sometimes speak clearly while I’m in it, but most times it’s difficult to speak. I remember everything from the seizure, too.”
Another person said: “I get a weird smell – always the same – and sometimes hear my mum’s voice coming out of my mouth. Lasts about a minute, followed by feeling groggy.”
Over on Facebook, a responder described their focal seizures saying: “Focal dancing lights, like the trace of sparklers that lasts up to 10 or 15 minutes and lead into a headache.”
Another added: “I feel like I’m ‘not real’ and am not sure if what I’m seeing is actually happening or if I’m watching a film or a programme from the outside looking in.
“I sometimes claw at my arms – I think that might be me trying to see if I AM real!”
A third explained: “I have focal seizures which always start with a really powerful sense of déjà vu, which lasts for a couple of minutes, followed by a strange feeling in my head, like a wave pulsing through it. I feel very dazed and confused afterwards and get a monster headache and feel very tired.”
What recent research says
A quick glance at recent research highlights an unmet need in this group. Focal seizures affect around 61% of people with epilepsy, according to a 2022 multinational review paper. But there is still a lot to learn and understand about how best to treat these, especially in people with medicine-resistant epilepsy.
Some newer medications, such as cenobamate, perampanel, brivaracetam and lacosamide, have shown effectiveness for focal seizures. However, they can have significant side effects in some people, with researchers stressing that doctors need to be mindful of those when choosing which to prescribe to an individual.
Cenobamate, as one of the most recent medications, has been the subject of many of the more recent studies. They suggest that it offers more effectiveness for people with medicine-resistant focal seizures than other medications, and is no more likely to cause side effects than alternative medications.
Researchers agree that more treatment options are needed for this group, as well as more research into focal seizures.
There is more information about focal seizures, what commonly happens during these types of seizures and first aid on the Epilepsy Action website.
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