Managing My Epilepsy: Setting Priorities

Managing seizures can be overwhelming and confusing, whether you are new to seizures or have lived with epilepsy for years. Before we can take action to help control seizures or cope with day to day issues, we need to understand what steps are needed and why. The why step is crucial – understanding why we need to do certain things helps us prioritize what to do first and where our focus should be. Here are a few thoughts to consider as you start setting priorities for managing your seizures or helping your loved one manage their seizures.

What are priorities and how do I identify them? Priorities are what we need to do first – what’s most important. When picking priorities, safety is an important thing to think about first. Do I know what to do when I have a seizure? Do my family, friends or others who may be with me know what to do? If not, start by finding out what to do. Talk to your health care team and make a ‘Seizure Action Plan’ that spells out what to do for typical seizures, what to do when seizures are different than normal, and when to give rescue meds or go to a hospital. The Action Plan should spell out what’s an emergency and how to respond.

Another priority is to make sure that the diagnosis is clear. Do you and your loved ones know which symptoms are seizures? Sometimes people have symptoms that may look like seizures but are caused by something else, for example medicine side effects, migraines, sleep disorders, or emotional issues. Other medical problems such as changes in heart rhythms can cause episodic events that look like seizures but aren’t, but heart problems can occur during epilepsy seizures too! If you aren’t sure, make it a priority to find out what symptoms are seizures, how to track them and make sure you share these with your medical team. Changes in treatment are usually based on the information from you and your family.

What if my priorities are different from my doctor’s or nurse’s? It’s not unusual for the medical team to view things differently than the person and family with epilepsy. People view the seizures through different lenses and may come up with different priorities. For example, if my biggest concern was being tired, I may want to lower my medicine, for fear that the medicine made me tired. What if my doctor thinks I should take more medicine or not lower it?

Before I take any action on my priority I should talk to my doctor and consider all options. Being tired can also be caused by not getting enough sleep, having seizures during sleep, not getting enough exercise, stress, or some other medical problem. If l lowered my medicine without knowing the cause of my fatigue, I could make it worse. I may have more seizures and be more tired! By considering my priority and my doctor’s concerns and priorities, I hopefully will make a more informed decision.

How do I juggle competing priorities? We all have many priorities in life and juggling them can be difficult, but necessary. With epilepsy, I can think of many competing ones. For example, my priorities are to be seizure free so I can work and drive a car. But to do this, I need to be on medicine that makes me more tired than I like. What should I do? If I lowered my medicine (with my doctor’s advice of course), I could have a seizure and then not be able to drive. Then I may not be able to get to work or take care of my family. Not a good option.

So what else could I do? I could talk to my health care team and find out if there are other medicine options appropriate for my type of seizures. I could look at my sleep habits and activity. Are there other things going on that are making me tired? Can I adjust my lifestyle to have more energy, sleep better and not have seizures? What can I do to be less tired- take a short nap, go to bed earlier, adjust the times of my medicines? There are actually many ways of managing fatigue and finding the right option that works best takes time, but it would be safer and more effective in the long run.

How do I start making a priority list? Sit down with a pen and paper, computer or tablet, whatever works for you. Write down how the seizures and having epilepsy affects your life. Then list your goals – what do you want to see changed and how would your life change if your seizures were better controlled? Just these few questions can help you start a list to talk about with your doctor, nurse of whoever helps you manage your epilepsy. Then you can figure out what things need to be done first, and what comes second or further down the line.