by Robert S. Fisher, M.D., Ph.D.
Editor-in-Chief

Are your seizures or medication side effects out of control? You can help to take control by using the new My Epilepsy Diary on epilepsy.com. It is a major revision of the old diary, basically a new product. The new Diary will help you to track your seizures, your medications and your side effects. It will give you tools to help you remember to take your pills, keep your doctor appointments and communicate with your medical team.

In my day job, I am a doctor who specializes in epilepsy. In a typical clinic visit for people with seizures, a doctor usually asks how many seizures have you had, what medications are you taking, what side effects have you experienced. This information is used to make a decision on whether to increase, decrease or change medications, or maybe try a different strategy altogether. But how good is the information on which these decisions are based? In some cases, very good. In other cases, not so good, because information is based on very sketchy memories.

An epilepsy diary can help to keep track of seizures, medications, side effects, mood, and other important pieces of information. In the simplest form, you could just grab a piece of paper and write down when you had a seizure. But pieces of paper tend to get lost or not brought to clinic visits. It is also hard to see patterns that may be important clues to improving therapy (such as missed doses), or seizures related to specific events or cycles (such as seizures occurring around a woman’s menstrual cycle).

The Epilepsy Therapy Project website, epilepsy.com, and our epilepsy specialists developed a free tool to make organizing epilepsy information easier*. The entire plan is based on years of experience in trying to gather information from patients and families to understand the relationships among seizures, adverse effects, medicine, and daily function. The system is designed for simple entry of information, and visual assessment of issues: easy for the patient, family, doctor, and nurse.

When you have a seizure, change a medicine or have a side effect, you can go online and put it in the diary. We've tried to make it as easy as possible to do that. You can put an icon on your browser that will take you to the diary in one click. If you are away from a computer, you can use a smart cell phone to enter the information, just as if you were at your desktop computer. You can print a summary and charts for your doctor when you have an appointment, including pictures showing how many seizures or side effects occurred over time. All this information will help the doctor figure out the next best move for you.

The diary also can be used to give yourself reminders of what pills look like, alarms for when you should take them, and any other clues, such as when your next refill is due or doctor's visit is scheduled. An optional section to enter and print an organized medical history that will be useful to epilepsy clinic doctors can be done for a subset of patients/families with more detailed records and ability to record them in the organized modules.

Here’s how it works:

Today's date is automatically highlighted, but the patient can click on any date in the calendar to record information. Clicking the yes button to "did you have a seizure today?" allows you to pick the type of seizure from a drop-down list. This list was previously constructed in the initial "ABOUT ME" information gathering section.

In the “ABOUT ME” section, patients are guided to give a name and approximate description of each seizure type. These can be edited at any time. Medication doses and regimens can be entered in the MY MEDICINES” section, with pill pictures as reminders.

Soon there will be an optional “MY MEDICAL HISTORY” section will allow you to enter and print an organized medical history that will be useful to epilepsy clinic doctors. It is not required, but may be useful for a subset of patients/families with more detailed records and ability to record a full medical history into the organized modules.

Now let's return to “MY DIARY.” When you click a date to enter a seizure, you then see several choices.

There are options for entering type of seizure, time of the seizure, possible triggers, emotional mood, missed or extra medicine doses. Each day, side effects and severity can be listed. Patients have an option to enter free text in the "MY NOTES" section of the diary and to attach videos, documents or other files to the diary. A reminder section allows people to get e-mails or text messages to remind them of times to take their pills, doctor visits or any other reminder they wish to establish.

My Epilepsy Diary provides a "MY REPORTS" section, with useful charts and tables to be printed and brought to clinic visits. The section defaults to a tabular summary, but can also show graphics.

Your or your family can record information about each type of seizure you experience, your medicines, mood, things that may cause you to have seizures (triggers), side effects, and more. The Diary can display lots of information, including all seizures or particular types, as well as changes in medications and levels of side effects. Events are placed on an adjustable timeline. An electronic version of the tables and charts can be pasted by your doctor into your electronic medical record, if one is used in your clinic.

You or your family can enter their information from a cell phone or via the usual browsers. One-click access to the diary makes it convenient. Web-based diaries, in which patients choose to enter data, are not required to have a formal consent process or file HIPPA (Health Insurance Portability and Privacy Act) documents, but we take patient privacy seriously and have extensive safeguards in place for de-identification. If you have been using the old diary, you can continue doing so for the next two years, but we will not be supporting upgrades, so we recommend that you switch to the new diary. Most of your information has automatically been imported into the new diary.

In summary: My Epilepsy Diary is a valuable way to help you organize information before a visit, as well as keep long-term records showing your progress over months (and years). This should reduce the amount of time you need to spend reporting your seizures, side effects, and medicines to your doctor or nurse. This will leave more time to discuss other vital issues and concerns. The Diary also will help you and your family understand how medicine changes affect seizures, the types of side effects your medicines and seizures cause, how seizures affect your mood, and how epilepsy and seizures have an overall effect on your daily activities – your life.

My Epilepsy Diary will help you to take control of your epilepsy, as well as make it easier to work with your doctor to understand your problems and move to improve them. In addition to the benefit to you, participating in My Epilepsy Diary will benefit the overall epilepsy community. It will make it possible to track (with no linkage to any information that would identify you) patterns of seizures, medications, triggers and side effects. This could help researchers to develop better treatments.

Please consider joining the epilepsy.com community of two million people per year who rely on the extensive resources of our website for epilepsy information and for interaction with other people like you.

Take Control! Start using My Epilepsy Diary now!

*together with our programming consultants, Irody, Inc, Eyal Bartfeld President, and Michael Owen, Capitola, California, database programmer