Epilepsy is hugely misunderstood, underfunded, and can easily go missed or untreated for many years.
When most people hear ‘epilepsy’ they think of convulsive (tonic clonic) seizures. This is actually just ONE TYPE of seizure, and there are around 40! Tonic clonic seizures are also not the most common type seizure in people with epilepsy, but they’re basically all you see/hear about in the media.
Here are some infographics on warning signs of seizures:
There’s also a huge misconception that epilepsy is ‘just having seizures’, and other than that you’re fine…this is hugely false.
Most seizures involve a postictal phase (feeling different AFTER the seizure), and this can last minutes, hours, or days. Many people (including me) also experience auras BEFORE the seizure, which can include visual hallucinations, feeling spacey, numb, ‘dead’ or disconnected.
After long seizures (3+ minutes) or clusters of seizures (typically 8+ seizures in 25 minutes) I will be out of it for 1-2 hours, And even after that I may feel tired or have a migraine. By ‘out of it’ I mean my brain won’t be producing memories, I’ll be taking gibberish, confused, get lost even in places I know extremely well etc.
Finally there is the impact epilepsy has on your life. I have 10-30 seizures a day, and I can’t do many activities…I can’t cook without supervision, I can’t leave the house on my own, I can’t go to the toilet or shower alone, and when I have seizures in public people don’t understand as I’m not on the floor convulsing!! I’ve had people shout abuse at my partner before, as they thought I was drunk/on drugs due to the fact I couldn’t walk straight and was acting funny!!
Finally there is basically no funding for epilepsy research, no cure, and your average member of the public has no idea how to recognise seizures or respond appropriately (people with epilepsy have been arrested & beaten by the police because they were acting strange – ‘unco-operative’ – after seizures). Epilepsy kills more people than most types of cancer, yet there is no ‘war on epilepsy’…this needs to change.