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Health Care Professional (HCP) TALKING WITH YOUR TAKE AN ACTIVE ROLE IN YOUR SEIZURE TREATMENT HCP DISCUSSION GUIDE TAKING ACTION AGAINST EPILEPSY
Health Care Professional (HCP)
TALKING WITH YOUR
TAKE AN ACTIVE ROLE IN YOUR SEIZURE TREATMENT
HCP DISCUSSION GUIDE
E-ActionÉ-Action
MC
TM
ACTION CONTRE L’ÉPILEPSIE MD
TAKING ACTION AGAINST EPILEPSY
MD
TM
MD
MC
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MAKE THE MOST OF YOUR APPOINTMENTSPartnering with your health care professional (HCP) is one important
way you can take control of your own care. By working as a team, you, your caregiver, your loved ones, and your doctor are headed toward
the same goals.
When preparing for your appointment:• Try to bring your caregiver or family member with you. They can help explain
what happens during your seizures and support you during your appointment.• Keep notes and track your seizures in a seizure diary – and remember to bring
your diary to the appointment.• Bring a list of questions or notes you’d like to discuss. See page 4 for suggested
discussion points and questions for your HCP.• Aim to have all of your questions answered during your appointment. Rephrasing
questions in a different way can help to clarify issues that are still unclear.
If you do not have enough time to cover everything you’d like to discuss with your HCP, ask to schedule another appointment, arrange for a phone conversation, or follow-up via e-mail. It’s important that you, your caregiver and your HCP are on the same page when it comes to your health.
COMMUNICATION IS KEY
Talking with your health care professional (HCP) is an opportunity to share what matters to you. Keeping the lines of communication open
between you and your HCP is an important way to make sure you are getting the most from your care. If your HCP understands your challenges and what you’re aiming to achieve, they can help you make a plan to reach your goals.
Since appointments can be fairly quick, having a list of items to discuss can help make effi cient use of the time you have with your HCP. By organizing your thoughts before your appointment, you’ll have a good idea of what you’d like to ask and what you’d like to share.
Pages 8 & 9 of this booklet provide you with space to record your upcoming appointments as well as any reminders and questions you’d like to ask.
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YOUR TREATMENTS
SHARE
• How you are taking your medication(s)• The time of day you take your
medication(s)• If you have any trouble taking your
medication(s) as instructed, or if you miss any doses
• If you are experiencing any side effects
• Any changes in your mood, personality or energy
• Anything that is getting in your way of managing your epilepsy
• ______________________________________________________
______________________________________________________
______________________________________________________
______________________________________________________
ASK
• How do you determine what treatments might be right for me? What information do you need to make that decision?
• What results should I expect from treatment with my medication(s)?
• Is it common for people like me to take more than one medication for seizures?
• How long will I have to stay on my medication(s)?
• Is surgery an option?• What are the most common
side effects?• How can I manage the side effects
from my medication(s)?• If I cannot manage my side effects,
should we discuss a change in my medication(s)?
• ____________________________________________________
____________________________________________________
DON’T FORGET TO DISCUSS…Use the following guide to help get the conversation started at your
next visit. Bring this guide with you to your next appointment.
YOUR SEIZURES
SHARE
• Your Seizure Tracking Diary• When (dates and times) you had
your seizure(s)• What might have triggered your
seizure(s)• What happened before, during
and after your seizure(s)• Your feeling about your seizures
and how it is affecting your life• ______________________________________________________
______________________________________________________
______________________________________________________
______________________________________________________
ASK
• What is epilepsy?• What is the cause of my epilepsy
and seizures?• How will I know when I’m going to
have a seizure?• What are the common triggers?• How do I avoid triggers?• What do you need to know about
me and my seizures?• What would seizure control look
like for me?• Do I need to see a specialist for
my epilepsy?
• _______________________________
_____________________________
___________________________
________________________
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YOUR DAY-TO-DAY MANAGEMENTASK
• How do I talk to my friends, family and co-workers about my seizures?• Are there support organizations near me for people with epilepsy?
• Are there any online support resources that you would recommend?• Are there any counseling or job support services you would recommend?• What activities should I be cautious participating in, such as driving or
drinking alcohol?• How do the medications I’m prescribed affect my daily life? • _______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
GOAL-SETTINGSetting realistic goals can help defi ne milestones that are important
to you. This can help you to stay focused and positive, throughout your journey with epilepsy.
These goals can be personal and/or treatment goals. Some examples you might consider:• Leading a healthier lifestyle by improving your diet and exercise schedule.• Reducing your stress by practicing yoga or meditation. • Getting a good night’s sleep by creating a better sleep environment.
This space can be used to record goals that you may have for yourself, so that you can discuss these with your HCP.
SHARE
Your personal and/or treatment goals
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Appointment date: ___________________________________________________________________________________________________________
Appointment is with (name of HCP): ______________________________________________________________________________
Remember to bring: ________________________________________________________________________________________________________
Questions to ask and points to discuss: __________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Other reminders: ______________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Appointment date: ___________________________________________________________________________________________________________
Appointment is with (name of HCP): ______________________________________________________________________________
Remember to bring: ________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Questions to ask and points to discuss: __________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Other reminders: ______________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Appointment date: ___________________________________________________________________________________________________________
Appointment is with (name of HCP): ______________________________________________________________________________
Remember to bring: ________________________________________________________________________________________________________
Questions to ask and points to discuss: __________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Other reminders: ______________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Appointment date: ___________________________________________________________________________________________________________
Appointment is with (name of HCP): ______________________________________________________________________________
Remember to bring: ________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Questions to ask and points to discuss: __________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
Other reminders: ______________________________________________________________________________________________________________
___________________________________________________________________________________________________________________________________________
YOUR APPOINTMENTSYou can use this section to keep a record of your upcoming appointments,
and any questions you may have for your health care professionals (HCPs).
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GLOSSARY OF USEFUL TERMSWhile talking with your health care professional (HCP), you may hear some
words or phrases that you’re unfamiliar with. Here, we’ve listed some common terms used by HCPs, and their defi nitions.
Adjunctive: Something added to another thing in a subordinate position or use; for example, an adjunctive drug is one used in addition to another drug, not alone (add-on therapy).
Adverse effects: side effect; negative effect from medication or therapy.
Anterograde memory: The ability to form new memories; memories for events occurring after a problem such as a head trauma or seizure.
Antiepileptic drug: A medication used to control both convulsive and nonconvulsive seizures; sometimes called an anticonvulsant.
Aura: A warning before a seizure; a simple partial seizure occurring within seconds before a complex partial or secondarily generalized tonic-clonic seizure, or it may occur alone; also a warning before a migraine headache.
Automatism: Automatic, involuntary movement during a seizure; may involve mouth, hand, leg, or body movements; consciousness is usually impaired; occurs during complex partial and absence seizures and after tonic-clonic seizures.
Cerebral hemisphere: One side of the cerebrum (upper brain); each hemisphere contains four lobes (frontal, parietal, occipital, and temporal).
Daily dose: The average amount of medication taken over the course of the day to achieve a therapeutic blood level of the drug, usually measured in milligrams (mg) per kilogram (kg) of the patient’s body weight (1 kg = 2.2 pounds).
Dose-related effects: Adverse effects that are more likely to occur at times of peak blood levels of a drug.
Epileptologist: A neurologist with specialty training in epilepsy.
Focal/Focus: The center or region of the brain from which seizures begin; used in reference to partial seizures.
Ictal: Referring to the period during a sudden attack, such as a seizure or stroke.
Interictal: Referring to the period between seizures.
Intractable: Diffi cult to alleviate, remedy, or cure; for example, intractable seizures are diffi cult to control with the usual antiepileptic drug therapy.
Intravenous infusion (also called IV infusion): Administering a drug or other substance as part of a liquid solution injected directly into a vein (usually in the arm) at a prescribed rate.
Ketogenic diet: A high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are diffi cult to control with medications.
Monotherapy: Treatment with a single medication.
Myoclonic jerk: Brief muscle jerk; may involve muscles on one or both sides of the body; may be normal (e.g., as one falls asleep) or caused by a seizure or other disorders.
Neurotransmitter: A chemical substance produced by nerve cells, transported in the axon, and released at the synapse; causes chemical and electrical changes in adjacent cells.
Refractory: Used to describe seizures that are not controlled with seizure medications. May also be referred to as “uncontrolled”, “intractable” or “drug-resistant”.
Seizure threshold: Minimal conditions necessary to produce a seizure.
Seizure: A sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behaviour.
Status epilepticus: A prolonged seizure (usually defi ned as lasting longer than 30 minutes) or a series of repeated seizures; a continuous state of seizure activity; may occur in almost any seizure type. Status epilepticus is a medical emergency, and medical help should be obtained immediately.
Structural lesion: Physical abnormality in the brain.
Syncope: (pronounced SIN-ko-pee) Fainting.
Therapeutic blood level: The amount of drug circulating in the bloodstream that brings about seizure control without troublesome adverse effects in most patients. “Subtherapeutic” (lower) levels are effective in some patients, and “supratherapeutic” or “toxic” (higher) levels are tolerated by others.
Tic: Repeated involuntary contractions of muscles, such as rapid head jerks or eye blinks, as in Tourette’s syndrome; may be under partial voluntary control (for example, can be temporarily suppressed); nonepileptic.
Time to Peak Blood Level: The interval between the time a drug is taken and the time it reaches the highest concentration in the blood.
Tolerance: Decreased sensitivity to the effects of a substance such as a medication.
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