The thing with experimenting with medications for certain types of epilepsy, is it can take years to find a medication that works, if you have long gaps between seizures. But even frequent epilepsy can be difficult to get an exact diagnosis for too.
There's a number of strategies to use when helping your Neurologist figure out the best treatment for your epilepsy, but even just finding out what kind of epilepsy you have, can make a huge difference to helping you feel less isolated within your own community. I remember speaking to a young woman, Rachel, at Chalfont St Peter, the specialist epilepsy centre and I talked to her about our Temporal Lobe Epilepsy Petit-mal seizures.
It was as if a light had just gone on in our heads and it was so liberating to find someone who understood something, which can often feel impossible to explain.
What people don't really understand, is there is a host of different kinds of epilepsy people could have. It's like the different kinds of cancer there are, except it's specific to the brain, so what you actually do during a seizure, could do so much to help your Neurologist understand if your epilepsy is starting in the left or right side of your brain, if it's impacted by lights, if it is centred round the area where you process emotions... there are so many things your doctor can take from seeing one of your seizures. It's why I always ask my friends, (if they can get over the fear of dealing with a seizure) to try and film it on their phone.
I understand that's not always possible, so the next best thing I can do, is ask them to describe it for me, but in particular, for myself, to keep a track of exactly when I've taken (or on rare occasions) missed my medication. What time of day I had my seizure, what day of the month, did I have exam stress, for girls, was it just before starting their period, did I miss any meals? All of this info can hugely help work out why you're having seizures and keeping a track of it can greatly help your doctor find the best medication for you.
The other thing I found was not to be afraid to be assertive about recognising symptoms, from places you can trust information you're getting about your epilepsy. If you're recognising symptoms, make sure you tell your doctor about it - it can all speed up the process of getting to the right medication quicker.
The biggest thing for me though, is actually going through full testing, like EEGs or ECGs despite how painful it might be to attach the electrodes to your head's surface, it's so valuable in detecting where your epilepsy is coming from. MRI scanning too, has completely changed Neurology more than most Neuroscientists could imagine I expect. It's a fantastic tool for using to detect things like scarring on the brain, so despite my dislike of enclosed spaces, it was so worth the time spent in the scanner.
There are so many aids to finding the best possible treatment for whatever type of epilepsy you have diagnosed. Places like, Epilepsy Action, Epilepsy Society and Young Epilepsy, will never not provide you with information and tools like seizure diaries, to help you get to the bottom of your condition.
At the end of the day, when it comes to drilling down into a specific epilepsy diagnoses, you can never give your doctor too much information.
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