by: Professional Advisory Board Member, Joanne Rogin MD, FAAN
The overwhelming majority of those with epilepsy or seizure disorders do well with no seizures and no side effects with taking medications. The number one cause of seizures in those with epilepsy is missing pills, or not taking medications as prescribed, often called non-compliance or non-adherence.
How often are pills missed? While it occurs frequently for all types of medications, approximately 3/4 of people with epilepsy will miss pills at some time.
So why are people missing taking their pills? Sometimes it’s because they simply forget. There may be memory problems associated with epilepsy, or due to other causes. Medications may be missed as people may not understand the directions for taking pills. Sometimes insurance will not cover medications and access is difficult. Other times, the mail order pills may not arrive. Studies by Dr. Joyce Cramer and others have shown that the more frequently someone must take their medications, the more likely they are to miss doses. Taking pills once or twice daily were best, compared to taking them three or four times daily. Some don’t realize how important it is to take all their pills.
What happens if you miss a dose of medicine and a seizure occurs? Non-adherence has been shown to increase the risk of injury, hospitalizations, and even loss of life. Those with poorly controlled seizures are at increased risk of sudden unexpected death in epilepsy, or SUDEP, a rare occurrence. A seizure followed by decreased awareness can result in loss of driving privileges. Not unexpectedly, there is a significant financial risk to non-adherence as well.
What can be done to improve adherence? Use a weekly pillbox. Take your medications along with brushing your teeth or pair it with another task that you do regularly in the morning and night. Setting a phone alarm or using reminder apps or devices will often make a difference. Make a check mark on your seizure calendar when you take your pills. Some find it helpful to have a relative or close friend remind you as well. Be sure to order your pills or contact your health care provider’s office far enough in advance to deal with any glitches in filling your prescription.
Consider carrying several extra pills with you in your purse, pocket, or at work in case you find you have missed a dose.
If you are typically missing a morning or evening dose, talk to your doctor about taking your pills at the time you are less likely to forget for medications taken once daily.
What should you do if you find you have missed a pill? Talk to your doctor about strategies ahead of time. With most medications, taking the pills as soon as you remember works the best.
The most important thing that you can do in managing your seizure disorder is taking your medications as prescribed. Avoiding sleep deprivation and managing stressors are also key, but even one missed dose can make a difference. Work with your health care providers, think about strategies to avoid missed doses, and you too can be part of the majority of individuals who are living well with epilepsy!
Managing Your Epilepsy Part 2: Communicating with Your Team