“Keep diary and someday it will keep you.”
Author, Mea West
One of the first well-documented epilepsy diary was kept by the Silke of Essex, England. He noted all the changes in clinical state of his wife, who he cared for poststroke epilepsy. He made the last entry on the day of her death on June 25, 1834. In the period from 1829 to 1934, he made practically daily entries. Mrs. Silke had six to nine epilepsy attacks each year from 1830 to 1833, and four in the first 6 months of 1834 until her death in June. Photo 1 shows his epilepsy diary.
Keeping a seizures diary will help you better understand your epilepsy:
– You will learn what type of seizures dominate.
– You will learn if there are any factors that can trigger epileptic seizures.
– You will find out if there are any periods of increased seizure frequency.
– You will start to controlling the disease, which will reduce the level of anxiety and stress and thus reduce the frequency of epileptic seizures.
For your doctor:
It is a good idea to take your completed diary to your doctor’s appointments to show it to the doctor or nurse. Diary information can help doctors see how successful your current treatment is. What are the side effects of the drugs used. Medics will be able to plan future treatment more effectively.
When watching a seizure, try to note what happens before, during, and after the event. Write down what happened as soon as you can. Include as much information as possible about the following areas:
BEHAVIOR BEFORE THE SEIZURE
– what was the person doing at the time of event, change in mood or behavior hours or days before, ‘warning’ or ‘aura’ shortly before event.
WHEN EVENT OCCURS
– date, time
POSSIBLE TRIGGERS OR FACTORS THAT MAY MAKE EVENT MORE LIKELY TO OCCUR
• Time of day or month
• Menstruation, pregnancy, changes in contraception, or other hormonal treatment
• Missed, late, or changes in medicines
• Irregular sleep patterns, not enough sleep, other sleep problems
• Irregular eating patterns, specific foods
• During or after exercise or hyperventillation (fast breathing)
• Alcohol or other drug use
• Emotional stress, worry, excitement
• Sounds, flashing lights, bright sunlight
• Other illnesses or infections
WHAT HAPPENS DURING THE EVENT
• Change in awareness, alertness, confusion
• Ability to talk and understand
• Changes in thinking, remembering, emotions, perceptions
• Sensations – changes in seeing, twitching, eye blinking or rolling, drooling
• Changes in muscle tone – body becomes stiff or limp
• Movements – jerking or twitching movements, unable to move, body turning, falls
• Automatic or repeated movements – lipsmaking, chewing, swallowing, picking at clothes, rubbing
hands, tapping feet, dressing or undressing.
• Walking, wandering, running
• Changes in color of skin, sweating, breathing
• Loss of urine or bowel control
PART OF BODY INVOLVED
– where symptom started, spread to other areas, side of body (right, left, or both)
WHAT HAPPENS AFTER EVENT
• Response to voice or touch
• Awareness of name, place, time
• Memory for events
• Ability to talk or communicate
• Weakness or numbness
• Changes in mood or how person acts
• Tired, need to sleep
HOW LONG IT LASTED
– length of aura, seizure, after-effects or postictal phase, how long before person returns to normal activity.
Adapted with permission from the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, Boston, Massachusetts, 2006.