If you can provide your doctor with seizure videos, this can be incredibly useful for diagnosing and treating your specific kind of epilepsy. Doctors often don’t see their patients’ seizures because they may not happen during appointments (unless you go to an EMU). So, doctors often have to make a diagnosis based on other people’s descriptions of what happens (plus using EEG’s and other techniques). But if they can watch a seizure video, it can make their job a lot easier.
A study of home video recordings of seizures found that they were a big help to doctors, and can reduce the possibility of misdiagnosing epilepsy too. While it’s really useful to provide a video of a seizure to your doctor, there are a few issues to be aware of - especially around what you film, as well as privacy considerations.
You can now share seizure videos with your doctor in Epsy by attaching those videos to specific seizure logs in the app. If you’re interested in doing this, read our FAQs and how to guide.
Why it’s so useful to share seizure videos with your doctor
Providing videos of your seizures to your neurologist or treatment team can be really useful for a few different reasons:
- Seizure videos are especially useful during a new diagnosis. They help your doctor work out which kinds of seizures you’re having, and can give clues about where in your brain they begin.
- Videos are also useful for ongoing care. If the type, frequency or severity of seizures change, then having video available is very helpful.
- If you have most seizures at night, your doctor may never be able to see your seizures for themselves. So a nocturnal seizures video, recorded using a special night time camera, could be helpful. It’s possible to buy night time cameras online - they’re often fairly cheap according to this article on Medium.
- Seizure videos are also useful for helping with misdiagnosis - good quality footage can help epileptologists tell if someone actually has epilepsy, non-epileptic seizures, or a different condition.
Appointments: 15 questions to ask you neurologist
Tips for recording videos of a seizure
If you remain conscious during your seizures, you might be able to record a video of these events yourself, using the ‘selfie’ mode on your smartphone.
For most people, recording videos of their own seizures isn’t possible. If that’s the case for you, then speak with friends, family, teachers and other people you spend time with about making recordings of your seizures on their smartphones.
The following tips can help them record videos that are more useful for your doctor:
- Safety first: Making sure the person who’s having a seizure is safe is ALWAYS the priority. If they have fallen over, attend to them and ensure they are in a safe position and away from any harm. Only once you’re sure they are in a safe position should you record a video of a seizure.
- Try to capture the start of the seizure: The first few seconds of a seizure can provide a lot of information about where in the person’s brain the seizure begins. Seizures are usually hard to predict, but if the person has an aura or can tell when their seizures are coming on, start filming as soon as it’s safe to do so.
- Record their whole body: As far as possible, try to capture the person’s whole body during your recording (rather than just their face). There are lots of subtle movements the person might make which are helpful to doctors.
- Record noises too: The noises a person makes during a seizure can also be helpful - try your best to capture words and sounds they make.
- Film until the person returns to consciousness: If possible, try to record the entire seizure, until the person has returned to consciousness. You can check how ‘aware’ they are by asking simple questions (such as: ‘what day of the week is it?’).
Safety: Introduction to seizure first aid
Ethics and seizure videos
For many people, seizures are a highly personal and private experience. So, although recording a video of them can be helpful, there are numerous ethical issues to be aware of.
In the ideal scenario, the person with epilepsy will have told you in advance that they’re happy for you to record videos of their seizures. Either way, you must always inform them that you recorded a video once they recover.
A couple of other rules:
- It should go without saying, but DO NOT post videos of anyone’s epileptic seizures on social media - especially if they haven’t given you permission
- You should not share the video with anyone else without the person’s permission
- You should send a copy of the video of the seizure to the person with epilepsy (or their carer)
- Normally, you should delete the video after sending it to them, unless the person has said you can keep it
- Do not expect the person who has epilepsy to want to watch your seizure video - they might find it frightening, embarrassing or uncomfortable
- If the person who had the seizure is a child or does not have the intellectual capacity to give informed consent, then you must share the video with that person’s parents or carer. You should still try to tell them you have made a recording in a way they can understand
Sharing seizure videos in Epsy
You can now include videos of seizures in Epsy. Each time you log a seizure, you can also attach videos within the app to show your doctor at your next appointment. If your doctor uses Epsy, they can also see all your videos as soon as you upload them to the app.
Find out more about this new feature and how to use it in our FAQ.