Let's start talking about the way you take your seizure medicines by comparing you to the Captain of the Titanic. Yes, the big ocean liner that sank. Although it made an exciting film, it was a tragic event with terrible losses. After years of working with people who have epilepsy, I have heard enough stories to make me think that every child, teenager, and adult who has epilepsy has as many responsibilities as that Captain did. The ship sank because of a series of errors in judgment and lack of knowledge. You, too, may be on a course toward a disaster, but it can be avoided.

The interrelationships among patients, families, doctors, and other healthcare providers are something like the interrelationships among the passengers, captain, and crew of a ship. What happened on the Titanic is an example of poor communication. The more recent accident in Hawaii, in which a U.S. Navy submarine emerging from a dive hit a Japanese fishing boat full of students, is another example. The captain and crew were rushing to get back to port and skipping standard procedures. If they had looked carefully through the periscope, they would have seen the fishing boat. Both these disasters occurred because of human errors.

Are you the next Titanic? You might not know how close you are to danger unless you are fully aware of your daily activities. Let's try to improve the sensitivity of your radar. Neither the patient who misses many doses nor the doctor who attributes continued seizures to lack of drug efficacy sees the iceberg ahead.

If you don't use some method for self-assessment, you probably don't have a clue about how often you accidentally forget to take some pills. Watching your pill usage is as important as having a sailor watching the sea with binoculars or checking the periscope. You need to see potential problems coming up before they sink you.

Do you organize your pills in a plastic dose box that can be filled once a week? Using this type of box, you can see the dose you forgot to take because it is still in the box at the end of the day.

Do you check the date that you expect to need a refill? Does your supply of pills last longer than the 30 or 90 days of the prescription? You can count the number of pills remaining when it's time for your 30- or 90-day refills to get an estimate of the number of doses you missed.

I became interested in the way people take medicines when I was testing drugs. I quickly realized that poor seizure control sometimes was not the fault of the drug. Obviously, medicine won't work if you don't take it. My question became: Did the drug fail or did the patient fail to take the drug? I was lucky to be at the right place at the right time. Someone had just invented an "electronic pill bottle" that I could use to answer my question. The bottle cap has a computer chip that records the date and time whenever the cap is opened. I can download the information onto my computer to see the dosing pattern. I started by asking some patients if they would use the electronic bottle so I could better understand how their medicine worked. Within a few weeks, I had collected some amazing information. This technique was a window on human behavior! In the dozen years that I have continued this research, I have learned a lot about how people take the medicines that are prescribed for them.

Here's a summary. I learned these facts after gathering data from patients who used the electronic bottles:

It doesn't matter how severe the consequences of missed doses may be. Even people who risk death do not follow their prescriptions perfectly. The possibility that missed doses may result in having a major seizure in public, at work, at school, or while driving does not produce perfect compliance with schedules for taking seizure medicines.

The following is an example of a dosing record for someone who was supposed to take medicine three times a day. Look at the variable compliance on weekdays, and neglect on weekends. I guess this person thinks he needs his medicine only on Mondays through Fridays!

What do you think is the biggest problem with taking your pills correctly? Is is the number of different medicines to be taken every day? The total number of pills to be taken every day? The number of doses every day?

This is it: the number of times a day that you have to remember to take medicine. I found that people took all of their pills at the same time when they remembered a dose, and skipped all of them when they forgot a dose.

Continue to Titanic Story

Section Editor: Robert Fisher, M.D., Ph.D., author: Joyce Cramer
Last Reviewed: 11/15/08