For most people with epilepsy, reducing (or ideally stopping) seizures is top priority. But it’s important to speak up if the price feels too high.
Neurologist and Epileptologist Dr Lisa Gillinder says that with over 20 medication options out there, managing seizures must go hand-in-hand with protecting your general wellbeing.
“The goals of care should be, one, to achieve seizure freedom, but also to maintain quality of life so that you can continue with your normal activities, whether that means attending school, going to work, attending social activities, having a family – all of those sorts of things should be considered within the goals of care.
“Treatment shouldn’t just be focused on seizure freedom alone. Even if you reach a refractory stage – where medical therapy is unlikely to result in complete seizure freedom – the goal should still be to optimise your quality of life so you can have as ‘normal’ a life as possible.”
Protecting your quality of life
You should feel that you’re working in partnership with your clinician, Lisa says. If not, don’t be afraid to speak up and advocate for yourself.
“You should always feel empowered to go back to your neurologist and say, ‘hey, this medication is not right for me, I’ve got side effects. Can I try a different one?’ Because we do have lots of options now.
“It’s unfortunately not uncommon to see patients who’ve been experiencing medication side effects who say, ‘I thought this was my only option’. And that’s really sad, especially if there are cognitive side effects that have, for example, affected the patient’s ability to function at work, so maybe they’ve decided to take a lesser role, or they’ve resigned.
“What I would say to people is that there are a lot of treatment options to try before we get to a point where we say, ‘maybe we actually need to refocus your life and consider changing careers’.”
Partnering with your neurologist
Medication side-effects are wide ranging and vary from person to person; everything from poor concentration, memory issues and depression to fatigue, poor coordination and even aggression. While it can be uncomfortable to speak up, your clinician’s goal is to deliver the best possible outcome, in every area of your wellbeing.
“It’s really important that patients feel like they have ownership over their condition and the condition doesn’t own them, and also to remember that the neurologist is there to provide advice and guidance, rather than make you chose one option or another,” Lisa adds.
“You, as the patient, have all of the rights. We as clinicians are there to provide information and help you to make the right decision. But that has to be the right decision for you, on the basis of your completely individual circumstances – not dictated to you.
“I will usually say to my patients, fairly early on, that I like to work in partnership with them. So, if something doesn’t fit, then we talk through it and find better options.
“You need to be confident that you’re getting what’s right for you. It’s about compatibility, not whether someone is ‘right’ and someone is ‘wrong’, it’s just about finding the right fit.”
Want to know more, or need additional support as you navigate your diagnosis? Contact our Living Well team on 1300 852 853 to find out how we can help.
