Did you know that one third of people with epilepsy have intractable seizures? This is when their seizures cannot be controlled with anti-epileptic drugs (AEDs). If your seizures are not easily managed, it can feel really tough, and affect your life in different ways. All the same, there are several ways of managing epilepsy well, so that you can lead your best life.
Quality of life in epilepsy
People who have intractable seizures often struggle with management of epilepsy. There are several ways it affects their health, personal and professional lives. Research shows that intractable epilepsy can affect:
- Physical health: Repeated uncontrolled seizures can lead to a number of health problems, including injuries from falling.
- Mental health: People who struggle with the management of epilepsy using AEDs can experience things like depression and anxiety.
- Social issues: Another way that intractable epilepsy can affect quality of life is in people’s social life. It can affect your ability to do things like driving and working in certain jobs, and sometimes people still experience stigma for having seizures.
Managing epilepsy well and improving quality of life
Having hard to control seizures can feel really tough. It is totally normal to sometimes feel down about your seizures, or to feel worried about the future. There are, however, plenty of things you can do to improve your quality of life - even if seizures sometimes feel overwhelming. These include:
- Building on your relationship with your doctor: Having a good relationship with your doctor is really helpful when it comes to managing epilepsy well. Being able to communicate with them, tell them about any physical, mental or social issues you are having, and knowing that they understand you is really important. You have every right to expect a good relationship with your doctor - read our blog to learn how to find an epileptologist who is right for you. Your doctor might use the Quality of Life in Epilepsy Inventory to see how you are feeling.
- Quality of life self-help programs: There are several self-help programs that have been set up by the CDC and the Epilepsy Foundation to help with quality of life and management of epilepsy. These programs focus on cognitive behavioral therapy which you can use on yourself to help gain a new perspective on your seizures.
Related: The beginner’s guide to wellness
- Physical activity and exercise: Participating in sports and physical activities is a great way of improving self-esteem and mood. Depending on what you're comfortable with - and what your epilepsy treatment team think is okay - you could try out activities like yoga, pilates, gym classes and even things like running and other sports.
- Support groups: Another way of improving your quality of life is to connect with others who know just how you feel at an epilepsy support group. There are plenty of support groups both online and in person where you can learn about epilepsy management in home, self-help, your legal rights and other advice.
- Other medication: Sometimes it can be helpful to speak to your doctor about other medication for treating things like depression and anxiety if these are affecting your quality of life.
Epilepsy stories: Read Anna’s story - a grandmother with intractable seizures
Managing epilepsy well
Although living with intractable seizures can be tough, there is a huge amount of support out there to help you to cope and live a rich and fulfilling life. By reading this blog, you are taking the first step of that journey - good luck going forward.