Telling what happened

The medical history is the foundation of the diagnosis of epilepsy. The doctor needs ALL the information about what happened before, during, and after your seizures. If you cannot give enough information, then others who have seen the seizures happen should contribute what they know. If some of the details are vague, the doctor needs to know that too.

What will the doctor ask?

To get a full picture of what the spell was like and what might have caused it, the doctor probably will ask about things that happened before and after it as well as during the incident itself.

• Did you experience lack of sleep or unusual stress?
• Were you sick recently?
• Did you take any kind of medication, including over-the-counter medicines, alcohol, or illegal drugs?
• What were you doing immediately before the event (for instance, lying down, sitting, standing, getting up from a lying position, heavy exercise)?

• What time of day was it?
• Were you just waking up or falling asleep?
• How did it begin?
• Was there a warning?
• Did your eyes, mouth, face, head, arms, or legs move abnormally?
• Were you able to talk and respond appropriately?
• Did you lose control of your bladder or bowels?
• Did you bite your tongue or the inside of your cheeks?

• Were you confused or tired?
• Could you speak normally?
• Did you have a headache?
• Did your muscles ache?

How can my family and friends help?

One of the most valuable pieces of information a doctor can get is an accurate eyewitness description of a typical event. It is worthwhile for people who have seen your seizures to visit the doctor’s office with you. If that is not practical, perhaps the doctor or nurse can speak with them by telephone.

Ask them to write down a detailed description of what they saw soon after the event, because memories fade with time. Even after they talk to your doctor, save these notes, because they may be helpful to another doctor later. If the episodes occur often, it would be very helpful for the doctor if someone could film one or more of them on home video.

Your parents or other family members also may be able to help with some important questions about your medical history:

• Was your birth difficult?
• Did you have any seizures with high fevers when you were a baby or small child?
• Did you ever have a head injury? If so, did you lose consciousness after the injury? How long were you unconscious? Were you taken to a hospital?
• Did you ever have meningitis (an infection of the membranes around the brain and spinal cord) or encephalitis (a serious viral infection of the brain)?
• Has anyone else in the family had epilepsy, any other neurological disorder, or a disorder associated with loss of consciousness?

What else should I tell the doctor about?

If the incidents occur repeatedly, try to identify associated factors. For example, some women with epilepsy have more frequent episodes at certain times in their menstrual cycle, so you may want to track this kind of relationship on a calendar. Some people try to link their seizures with environmental factors such as stress, using an antibiotic, or eating too much sugar. Often these associations are just coincidences. Keep careful records of when the possible factor occurs in relation to the time and frequency of your seizures. And remember that even if the factor and your seizures turn out to be associated, that doesn't necessarily mean that the factor is causing the seizures.