One of the ways that neurologists are able to diagnose NEAD is to see a seizure as it happens. Unfortunately, the likelihood of a seizure happening on schedule in their clinic is very small indeed. It is probable, therefore, that you will be asked to get someone to video your seizures.
Here are some tips on how to do this effectively so as to provide the neurologist with the best possible evidence:
1. Decide who is to be your video buddy. It needs to be someone who is with you as much of the time as possible so a partner, family member or friend is best. Preferably choose someone who is calm and can be relied on not to panic.
2. It’s most likely that your video buddy will be using their mobile phone, so make sure they keep it charged and ready to go.
3. Try and capture the attack from the very start. This means that if you have an aura or warning, get your video buddy to start filming straight away rather than wait for the seizure to occur.
4. Turn off the TV, radio or any other background noise.
5. Try and get clear, close up shots of the face but don’t just focus there, show all parts of the body that are affected e.g. shaking arms, legs etc.
6. If you have different types of seizures, make sure you film them all. Also, if your seizures have changed over time, try and have a series of videos that shows the changes.
7. The more good quality video you can show the Neurologist, the easier it is for him/her to make a diagnosis. Your video buddy may feel mean standing about filming you rather than helping, so it’s important to discuss with them why they are doing it.
8. It may be useful to have a couple of practice sessions with your buddy so that they are prepared and ready to go when a seizure does occur.