As a nurse in the emergency room – I see and hear a lot of things. And I must be honest; one of the most difficult things to witness is the doctor and patient conversation about what the plan of care should be because sometimes, although well intended, the goals of the healthcare provider aren’t always the same as the patient’s goals.

This is particularly true with epilepsy. When patients with epilepsy are treated in the ER it can be very scary because we never know how long a seizure will last. Most seizures last from 30 seconds to two minutes, but if lasts longer than five minutes it is a medical emergency.

The priority for the healthcare team is to stop the seizures and prevent any further harm to the person. And the intervention to do so often involves the use of anti-seizure medications. The caveat to that is that in trying to prevent seizures sometimes the person can experience unwanted, sometimes serious, side effects. The most common side effects associated with epilepsy medicines are: drowsiness, irritability, nausea, rash, and clumsiness. Some drugs even produce changes in emotions, memory, or behavior, or affect learning.

So here we are as healthcare professionals thinking we’re doing the best thing for the patient by prescribing medication, but if the side effects are severe enough or the patient is having trouble keeping their treatment on track – we’ve also reduced their quality of life. The question becomes, is the bad worth the good and which side effects are manageable? Only the patient or caregiver gets to determine that but, unfortunately, though many patients experience side effects that prevent them from following their treatment schedule or they forget to take their medications, many don’t feel empowered enough to discuss this with their doctor. It can be very difficult for a patient to have that empowered conversation when dealing with the fear and stress of the emergency room. And, as health professionals, we should be looking beyond this emergency in this moment and thinking about the patient’s life moving forward and how they will manage their epilepsy after leaving the ER.

I recently attended a discussion about seizure freedom with epilepsy patients, advocates, and HCPs. During the discussion, we talked about the importance of patients feeling empowered to engage in conversations with their doctors about the best treatment for them, from the beginning of the diagnosis. The plan of care should be a partnership and there should be a clear understanding of what the goals and deal breakers are. The main objective is to align treatment goals with each patient’s lifestyle goals so they can find the medicine that works best and that causes the fewest side effects as early as possible. The medicine should not only control the person’s epilepsy, but also fit well within their daily life so they can get on the path to pursuing seizure freedom.

Finding the right medication and dosage can be complex. A doctor will consider your condition, your frequency of seizures, your age and other factors when choosing which medication to prescribe. But as a patient or friend/family of a patient, you need to make sure quality of life is also considered. If a person is active and always on the go, this active lifestyle should play a role in treatment decisions. There are different treatment options available, and every patient has a right to know what those options are to make the decision that’s best for them.

Don’t know how to start this conversation? Check out this Seizure Freedom Conversation checklist. And for more information about epilepsy please visit EPILAPSEY.com.

SEIZURE FREEDOM CONVERSATION CHECKLIST: THINGS TO ASK YOUR PROVIDER

• I know I have epilepsy, but I still want to be able to: (fill in the blank with your life goals)
• Will epilepsy medications and treatment limit my ability to meet those goals?
• How can I still enjoy my favorite activities while taking epilepsy medications?
• I want to live an active and fulfilled life. How can I balance the side effects of my medications (e.g. drowsiness) with seizure freedom?
• I want a treatment plan that’s feasible and convenient for my lifestyle and schedule. What medication options do I have?
• What should I tell my friends, co-workers, and family members about my condition?
• What epilepsy support organizations and activities are in my area?