MY TRACKING DIARY. MY Tracking. Diary TAKING ACTION AGAINST EPILEPSY

MY TRACKING DIARY MY Tracking Diary TAKING ACTION AGAINST EPILEPSY

CONTACT INFORMATION PERSONAL Name: Phone: Email: MAIN CAREGIVER/COMPANION Name: Phone: Email: FAMILY PHYSICIAN Name: Phone: Email: TABLE OF CONTENTS Contact Information...2 Welcome to Your Seizure Tracking Diary...4 My Medications...5 My Medication Log...6 My Seizures...10 Seizure Tracking Diary... 11 Setting Goals...22 Medical Appointment Notes...24 Appendix...26 NEUROLOGIST/EPILEPTOLOGIST Name: Phone: Email: EMERGENCY CONTACT Name: Phone: Email: 2 3

WELCOME TO YOUR SEIZURE TRACKING DIARY THIS TOOL WILL HELP YOU TRACK IMPORTANT INFORMATION RELATING TO YOUR SEIZURES. Since your seizures usually won t occur in your healthcare team s office, it s important to give them as much information about your seizures as you can. Recording what happens between appointments can help them to understand and spot trends in your seizure activity. It can also help them see how you re responding to your current treatment. Remember, your healthcare team may only see you every 3-12 months, so keeping a record can be very helpful. This booklet is designed to make this tracking process easier. You won t find it takes too much time. You can record your symptoms, how you re feeling and whether you ve had any seizures. You can also keep track of medications that you re currently taking and any side effects that you may be experiencing. Just remember to bring your log to all of your appointments! MY MEDICATIONS WHY SHOULD I KEEP A MEDICATION LOG? You can take action in managing your treatment by keeping an up-to-date record of your current medications (including prescribed medicines, over-the-counter medications and any vitamin/herbal supplements you are taking). This will help your healthcare team to understand your medication schedule and help them to predict possible side effects and drug interactions. When discussing your treatment, you should keep a record of: The name of the medication The time of day you should take your medication e.g. once in the morning, once in the evening, or at the same times each day The dose you should take e.g. 50 mg in the morning, 50 mg in the evening Any side effects that you may experience i.e. all expected or unexpected side effects HOW SHOULD I RECORD MY MEDICATION REGIMEN? In this section of your booklet, you can take the opportunity to record some information about the medications that you take regularly (for epilepsy and other conditions). We suggest that you include any special instructions or comments provided by your healthcare team in the comment box (e.g. take this drug with food ). Note that Other Medications should include all vitamin and herbal supplements, over-the-counter (OTC) medications and prescribed medications that are not anti-epileptic therapies. 4 5

MY MEDICATION LOG It s very important to remember to take your medication as prescribed by your healthcare team. Remember only your healthcare professional should decide if your dose should be adjusted. Do not stop taking your medication without talking to your healthcare professional. Stopping your treatment suddenly can cause serious problems, including seizures that will not stop. Your healthcare professional will decide how long you should continue your treatment. ANTI-EPILEPTIC MEDICATIONS Medication Name What it s used for Number of tablets per dose, tablet strength and administration # of doses per day Total daily dose Time of day taken (am/pm) Day started/day stopped (if known) Example Medication Reducing seizure activity Take with food (dairy) One 10 mg capsule taken by mouth 2 20 mg 7am 7pm Started May 5, 2015 Stopped Jan 9, 2016 1 2 3 4 5 6 7

OTHER Meds MY MEDICATION LOG OTHER MEDICATIONS Medication Name What it s used for Number of tablets per dose, tablet strength and administration # of doses per day Total daily dose Time of day taken (am/pm) Day started/day stopped (if known) Example Medication HEADACHES One 5 mg tablet taken by mouth 1 5 mg 8am Started FEB 10, 2010 STILL TAKING REGULARLY Take with food 1 2 3 4 5 6 8 9

MY SEIZURES WHY IS IT IMPORTANT TO TRACK MY SEIZURE ACTIVITY? Tracking your seizures will help you keep a record of: how often and when your seizures are happening how you were feeling/acting before, during and after your seizures the events that led up to your seizures This record will help you and your healthcare team assess your progress (for example, changes in your seizure activity or how you are responding to treatment), so that you can ensure you are getting the best results. To avoid forgetting important details, try to write about a seizure soon after you ve experienced it. If you don t remember details because of your seizure, try asking someone who witnessed it. SEIZURE TRACKING DIARY Your Tracking Diary is an important part of monitoring your treatment therapy. This diary will help you to track how often you experience seizures, and important information about these events. WHAT SHOULD I INCLUDE IN MY SEIZURE DESCRIPTIONS? In the Appendix of this booklet (page 26), you ll find a list of symptoms, experiences and triggers that are commonly associated with partial-onset seizures. You can use these as examples while filling in your diary. However, please keep in mind that this is not an exhaustive list. If you have an experience not included in the list, please make sure to include this in your seizure description. Try to include as much relevant information as possible, as this will help your healthcare team to spot trends and see how you are responding to your treatment. 10 11

Recording whether or not you ve taken your medication each day is important, since this can help ensure that you don t miss a dose. It can also help your healthcare team notice changes in your seizure activity caused by a forgotten dose. Explaining how you feel on a day-to-day basis can help show patterns linked to your seizure activity, and could affect your treatment. Indicating the number, type and frequency of your seizures is an important part of assessing your progress. It will also be useful to record the time of day at which you experienced them. SEIZURE TRACKING DIARY You can use the charts below to keep a daily log of your seizure activity, medications and any adverse events. Below is an example of a chart entry for one day. SEIZURE TRACKING Date Date: August 19, 2016 Did you take all of your epilepsy medications? Yes Overall not feeling very well. Lightheaded and having difficulty focusing. How do you feel? Did you have any seizures? Yes How long did the seizure last? 30 seconds How many seizures did you have? 1 What time of day did you have your seizure? 9 am If known, what was the seizure type (i.e. name of seizure type)? Simple partial seizure EFORE: - fully aware - felt anxious - had trouble speaking clearly (struggling to find the right words) Describe the symptoms and experiences associated with each seizure you had today. - periods of forgetfulness/ memory lapse - felt afraid and sad - garbled speech See the Appendix (page 26) for a list of examples of symptoms, experiences and triggers. Date: - fully aware of my surroundings - tired Did you experience any predicted triggers prior to your seizure? Yes I was around flashing lights Do you feel like you are experiencing any side effects with your medication? No It s also common to experience some minor side effects when starting a new medication. If you do happen to experience any possible side effects while beginning a new treatment therapy, please use this space to keep a record. It s important that you talk to your healthcare team about any of these events. 12 13

SEIZURE TRACKING 1 2 3 Date Date: Date: Date: Did you take all of your epilepsy medications? How do you feel? Did you have any seizures? How long did the seizure last? How many seizures did you have? What time of day did you have your seizure? If known, what was the seizure type (i.e. name of seizure type)? Describe the symptoms and experiences associated with each seizure you had today. Did you experience any predicted triggers prior to your seizure? Do you feel like you are experiencing any side effects with your medication? 14 15

SEIZURE TRACKING 4 5 6 Date Date: Date: Date: Did you take all of your epilepsy medications? How do you feel? Did you have any seizures? How long did the seizure last? How many seizures did you have? What time of day did you have your seizure? If known, what was the seizure type (i.e. name of seizure type)? Describe the symptoms and experiences associated with each seizure you had today. Did you experience any predicted triggers prior to your seizure? Do you feel like you are experiencing any side effects with your medication? 16 17

SEIZURE TRACKING 7 8 9 Date Date: Date: Date: Did you take all of your epilepsy medications? How do you feel? Did you have any seizures? How long did the seizure last? How many seizures did you have? What time of day did you have your seizure? If known, what was the seizure type (i.e. name of seizure type)? Describe the symptoms and experiences associated with each seizure you had today. Did you experience any predicted triggers prior to your seizure? Do you feel like you are experiencing any side effects with your medication? 18 19

SEIZURE TRACKING 10 11 12 Date Date: Date: Date: Did you take all of your epilepsy medications? How do you feel? Did you have any seizures? How long did the seizure last? How many seizures did you have? What time of day did you have your seizure? If known, what was the seizure type (i.e. name of seizure type)? Describe the symptoms and experiences associated with each seizure you had today. Did you experience any predicted triggers prior to your seizure? Do you feel like you are experiencing any side effects with your medication? 20 21

SETTING GOALS Setting goals for yourself is an important part of your treatment journey. After all, it can be motivating to have something to work towards! Some goals 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. Realistic goals can be important milestones that can help you stay focused and positive. The lists below will allow you to explore some common interests shared by many people with epilepsy. You can take an active role in your epilepsy management by choosing which goals you are most interested in working towards. I WANT TO FEEL: Independent Safe Positive about my treatment In control of my life Less anxious or depressed I WANT MY TREATMENTS TO: Start working sooner Fit into my life Reduce my seizures Have a simple dosing schedule Cause fewer short-term side effects Cause fewer long-term side effects I WANT TO LOOK FORWARD TO: Fewer restrictions on my activities The future Travelling Social activities Overcoming daily challenges Better relationships with family and friends If you have additional goals that you are interested in working towards, you can record them here: 22 23

MEDICAL APPOINTMENT NOTES This space may be used to record any questions for your healthcare team or notes about your medical appointments. 24 25

APPENDIX WHAT SHOULD I INCLUDE IN MY SEIZURE DESCRIPTIONS? BEFORE THE SEIZURE DURING THE SEIZURE AFTER THE SEIZURE Physical and Sensory Symptoms Unusual taste (e.g. metallic) Unusual smell (e.g. chemical) Hearing sounds (i.e. voices or buzzing) Vision abnormalities (i.e. loss of vision, blurring, flashing lights) Tingling, pins and needles, or numbness in parts of the body Feeling anxiety or fear Chest/stomach discomfort Nausea Déjà vu (feeling you ve been in a similar situation before) Jamais vu (feeling something is familiar, but it isn t) Responsiveness Fully aware Confused Distracted/daydreaming Responds to touch Responds to voice Periods of forgetfulness/ memory lapse Not responsive Sensations Hearing sounds differently Unusual smells Unusual tastes Vision abnormalities (i.e. loss of vision, blurring, flashing lights, hallucinations) Tingling, pins and needles, or numbness in parts of the body Anxiety/fear Out-of-body or detached feeling Déjà vu (feeling you ve been in a similar situation before) Jamais vu (feeling something is familiar, but it isn t) Physical symptoms Abnormal facial expressions (i.e. staring, twitching, eyes rolling, eyes blinking) Abnormal head movements (i.e. sudden head drop, turns side to side, or turns to one side) Body stiffness (i.e. whole body, just legs, just arms) Jerking movements (i.e. whole body, just legs, just arms) Automatic movements (i.e. hand clapping or rubbing, lip smacking, chewing, walking, wandering, running) Speech abnormalities (i.e. unable to talk, mixing up words, incoherent/nonsense words) Falls Injury/type of injury Incontinent Responsiveness Fully aware Confused Tired Irritable/agitated Asleep COMMONLY REPORTED TRIGGERS Specific time of day or night Lack of sleep Illness (e.g. fever) Flashing lights/patterns Alcohol/drug use Stress Hormonal changes (e.g. menstrual cycle) Low blood sugar/unusual eating habits Consuming certain foods (e.g. caffeine) Use of certain medications 26 27