The value of epilepsy phone apps
The night before last I had an epileptic seizure. It was the first focal-aware seizure that I’d had in a few months, and I was scared. Hey, the seizure could have been heaps worse, but I was scared that it would develop into a tonic-clonic seizure (one of the classically recognised seizures by the general public where we go stiff, fall to the floor and shake uncontrollably).
The next day (yesterday), I was so tired. Dazed. I was still scared because sometimes dodgy brains play around with you, give you a little taster, then give you another seizure which can be more severe.
I had to cancel my meetings that day, and just try and chill. Even after “just” that focal seizure I wasn’t with it 100%. How much of that that might have been down to anxiety I’m not sure.
It made me think how lucky I was that I’d had my brain surgery (temporal lobe resection by the fabulous Hospital for Neurology & Neurosurgery, Queens Sq, London) a few years ago. It also made me wonder exactly how I’d coped back prior to surgery when my brain was going for it again and again with even more severe seizures, when I would just carry on and go to work (which, to be honest, encouraged more seizures).
It made me of course think about what the cause might have been. Was it lack of sleep? No. Was it stress? Possibly, but not more than usual (that I was aware of). Was it excitement? I don’t think so. Was it lack of food? Definitely not…! But I know that as a result of poor memory (taking into account the seizure itself as well as the regular memory difficulties resulting from anti-seizure drugs, mental health issues as well as the seizure) I couldn’t be sure what had caused it. That is so, so frustrating. Annoying. Upsetting. It makes me feel so out of control. I feel bad for my friends, who will of course worry too. I’m automatically embarrassed (although I know I shouldn’t be) because I feel I’ve let people down by having to reschedule meetings and extend projects.
So you may have seen that I’ve been promoting an epilepsy app called #ConnectEP - and today, after a refreshing sleep and no more seizures (yay!), I really, truly recognise how powerful an app that identifies patterns in behaviour, mental health, physical health, sleeping patters, stress, periods, and of course types and severities of seizures, can be.
But, imagine using the app to accurately record all of the above and then being able to simply collate that information with data that has been collected from a little device plonked on your head for a few minutes at a time. Imagine if you didn’t have to wear the sticky electrode pads for ages. Imagine if the data collected over a brief period of time was analysed using advanced algorithms that could predict your seizures effectively and that could lead to more effective treatments, and who knows, even seizure prevention.
Safe and secure data collection, algorithms, neuroscience and epileptology don’t scare me. They give me hope. They excite me (although I do tell my brain not to get too excited…).
