Self-Managing Your Health Care
There are many different things that you can do to become an active participant in your health care. In other words, there are things that you can do to help improve the management and control of your seizures.
Discovering what triggers your seizures:
One of the tasks in self-managing your health care involves discovering the factors, situations, conditions and/or events that may lead to you experiencing a seizure. These are referred to as "triggers."
Why is it so important for me to know what my "triggers" are?
Because each person is a unique individual and experiences epilepsy in a very specific way, the process of finding a way to effectively manage and/or control each person's seizures is quite difficult. Thus, in order for you and your physician to work together to more effectively manage and/or control your seizures - both the amount of seizures you experience and the
severity of these seizures -- it is helpful if you and others, from whom you receive support, carefully monitor the situations and/or events leading up to, during, and after a seizure occurs.
What are some possible seizure 'triggers'?
While each person is different in the sense that his or her seizure(s) can be triggered by a variety of unique and different factors, there are still a number of possible things that many studies have suggested as common seizure 'triggers.' These include:
- fatigue (being overtired and/or having inadequate sleep)
- strong emotional feelings: stress, anxiety, fear
- hyperventilation (fast breathing)
- high altitudes
- television, video games, computer use
- flickering and/or flashing lights
- over-eating foods with high sugar content, stimulants and/or MSG
- possibly, birth control pills
(Thanks to Margaret Walker Sullivan's Living with Epilepsy)
How can I find out what's triggering my seizure?
The process of finding out what factors contribute to you experiencing seizures is not an easy one. In fact, it can be quite long, difficult and frustrating. Nevertheless, there are things that you can do to help discover what events or situations have triggered your seizure.
One way in which you can discover your seizure triggers is by keeping a detailed and accurate seizure diary or seizure 'log.' Indeed, keeping a seizure diary or log is beneficial regardless of whether or not you already know what triggers your seizures. The information that you 'track' in your seizure log can be useful to your physician in helping him or her know the types of seizures you are experiencing, how often they are occurring, how effective the anticonvulsant medications are, in helping to control and/or manage your epilepsy and whether or not other types of anticonvulsant medications could be more appropriate for using them to control and/or manage your seizures.
What information should I be recording in a seizure diary?
It would be useful to record the following types of information within your seizure diary/ seizure log:
- Date, time of day when seizure occurred
- A clear and detailed description of the seizure, including thelength of time of the seizure (eg. Did you lose consciousness? If yes, for how long? Did you have muscular convulsions? If so, which parts of your body were convulsing and for how long?)
- What were you actually doing when the seizure occurred?
- When was your last dose of anticonvulsant medication? (Remember to record if you recently missed, changed your medication dosage, whether by accident or through doctor's treatment recommendation)
- What foods and drinks did you consume within the last 24 hours before the seizure occurred (especially in last 12 hours before attack)? What time did you consume these foods?
- What other medications have you taken within the last 24 hours?
- (Remember to record both over-the-counter and prescribed medications you have taken? How much of these medications have you taken? When have you taken these medications?)
- How would you describe how you were feeling? (eg. happy, sad, stressed-out, anxious, fearful). Try to be detailed and clear in the way you describe your feelings.
- Describe, as specific and clear as possible, the events and/or situations that you had experienced within the past 2-3 days prior to your seizure (incl. sleeping habits, daily activities, general health)
- For women: What was the date of your last menstrual period?
Remember: Because you may have some difficulty remembering the circumstances leading up to, during and after your seizure, it is useful if your seizure diary recordings are based on your own observations as well as the observations of others who can provide you with such relevant information.
What do I do with this information, once I have recorded it in my seizure diary?
It is recommended that you share this information with your primary care physician and/or neurologist.
Sharing this information from my seizure diary with my physician or neurologist sounds like a good idea. But, sometimes, when I am attending an appointment with my doctor or neurologist, I find it difficult to communicate effectively with him or her. In other words, I feel as though my doctor is not answering my questions properly or not truly listening to me. What can I do about this?
There are a number of things you can do, as a patient, in order to improve your communication with your physician. Here are some possible strategies to help you:
- contact Epilepsy Toronto to become educated and aware of your epilepsy, your symptoms, and the medication(s) that you are taking. That way, you are more likely to have a better understanding about the terms used by your physician and the kinds of questions you can ask;
- prepare and bring, to your appointment, a list of the major questions and concerns that you have for your physician prior to your appointment with him or her;
- rather than asking your physician questions which he/she can answer with either a "yes" or "no," try to ask your physician questions that are "open," meaning questions that encourage a doctor to elaborate and provide detail. Examples of such questions include: "What kinds of side effects do my medication(s) cause?"; "What are the chances of my being able to effectively control my seizures with the medication(s) you are prescribing me?"; "What are some of the major symptoms associated with the seizure types which I experience?"
- if you do not understand the information communicated to you by your physician, do not be afraid to ask him/her more to clarify what he/she is saying to you. At the end of your appointment, it may also be helpful to summarize to your physician what you have heard from him/her to ensure that you have clearly and correctly understood what he/she has told you.
- it might be helpful for you to take notes and/or audio record your conversation with your physician, if you find yourself having difficulty remembering what your physician has told you, after your appointment has been completed. Make sure that you obtain consent from your physician before taking notes and/or audio recording what your doctor is saying;
- if you feel very nervous at doctor visits, or have communication difficulties (so that you forget your questions, or can't understand what the doctor is saying), you might want to consider taking a friend/advocate to your appointment. In addition to offering you emotional support during this appointment, this friend can also be supportive in terms of helping you listen carefully to what the doctor is saying, taking notes and asking the physician questions.
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