What is it?

The Epilepsy Foundation My Seizure Diary is a self-management tool for seizures and epilepsy with a focus on self-monitoring and tracking seizures and other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers. Use My Seizure Diary to also organize your health history, develop seizure response plans and help you remember medicines and other important information. The new My Seizure Diary encompasses many updates to our previous 'myepilepsydiary' US version, started by the Epilepsy Therapy Project. Some new features include:

  • Getting started is easier – diary can now be used in offline mode then sync to website when internet access is available.
  • Recording and tracking seizures is easier. Both individual and multiple events or cluster can be recorded in more detail. Identify a default seizure to track the most common seizure type with quick entry.
  • Recording and tracking rescue therapies can help you know how often and how helpful they are.
  • Triggers can be tracked over time separate from seizure events. This helps you identify lifestyle, health or environmental factors that may affect seizures or wellness.
  • Entering data can be done when you are offline - then sync your data when you have access to the internet.

The My Seizure Diary platform includes a fully responsive web application on diary.epilepsy.com as well as native iOS and Android companion apps.

  • The iOS and Android companion apps, available from iTunes and Google Play stores allow quick recording and tracking of your seizure events.
  • We recommend you use the latest Chrome browser when accessing the web app on diary.epilepsy.com. Note that the My Seizure Diary does not support Internet Explorer.

IMPORTANT

Before you register for an account on the Epilepsy Foundation My seizure Diary platform, we recommend you watch the following on-boarding videos on how to select the right type of account and setup a seizure and medicine profile to start tracking daily events.

Table of Contents

What can I do with My Seizure Diary?

Use My Seizure Diary as your comprehensive epilepsy diary and self-management tool.
My Seizure Diary allows you to:

  • Monitor your health - track health events over time, check how you are doing, and evaluate trends or changes
  • Identify if you have seizure clusters and see if rescue therapies help
  • Track your mood, menses (for women), lifestyle, and environmental factors that may affect seizures and health
  • Record and manage your medicines and other therapies over times.
  • Remember medicines, refills, and appointments more easily.
  • Monitor side effects of medicines, injuries or other concerns and what do do next
  • Assess if treatment is working and when you may need a change.
  • Use self-monitoring features to see how other therapies are working for you, for example, dietary therapy, devices, behavioral approaches and more
  • Personalize your Seizure Response Plan with seizure first aid and interventions tailored just for you
  • Organize your health history
  • Allow a family member or caregiver to help you manage your epilepsy by allowing shared access to your diary
  • Communicate with your health care team more easily by sharing reports, graphs, and other tools
  • Upload important notes, reports, pictures or videos to organize your epilepsy info in one place

Getting Started

  • New Users:
    • Register for a “Diary Owner” account at diary.epilepsy.com through the web application. Visit the iOS or Android stores to get the appropriate mobile app.
    • Create a user name for your diary that will be associated with your email.
    • Go to Account Settings at the bottom of the left-hand navigation bar to update basic information, change passwords, set your time zone, and record gender of the person whose seizures are being recorded.
    • Click Save
  • Existing Users:
    • Sign into your diary at diary.epilepsy.com or open your mobile app. You will first see your Diary Dashboard which shows recent activity and updates.
    • Go to Account Settings at the bottom of the left-hand navigation bar to update basic information or change passwords. Make sure to check your time zone so reminders will be sent at the proper times. 
    • The password you create can be different than your epilepsy.com password.
  • Using the Dashboard:
    • Once your diary has been set up, each time that you login, you will see a dashboard that gives information about most recent updates, seizures, medicines and other key information.
    • In most fields, only the most recent information is displayed.
    • To view all your entries or activity since your last visit, go to the calendar view and check each day’s activity.
    • Check the status of any recent share requests on your dashboard to make sure the caregiver or any other people you have sent requests to have been accepted.
  • Using My Seizure Diary Offline
    • ​Once your diary has been created, you can add information or events even if your device is offline or when internet access is not available. If you do this, it’s important to go online as soon as you can to make sure your data is backed up and readily accessible.

On Boarding Videos

Start by selecting the right account type

Start your diary by choosing the right account type. Select "Diary Owner" if you are a person with epilepsy, select "family member/caregiver" if you are a family member or caregiver who wants to read or add information to another person’s diary or "clinician" if you are a clinician who will be viewing a diary of a person with epilepsy.

Setting up your seizure profile

In the Epilepsy Foundation My Seizure Diary, it is important to first create your profile and what your typical seizures look like. This will allow you to use the diary to track your seizures on a regular basis.

Setting Up a basic medicine profile

In the Epilepsy Foundation My Seizure Diary, it is important to keep track of all the medicines you take. This information can be entered in the "My Medicine" page under About Me. Once you create your medicine profile, you can track if any are missed and if any side effects happen. This gives you important information to share with your health care team.

Setting Up an advanced medicine profile

A good medicine list will help you keep track of details, such as the strength of each pill, how much and when you take it and more. Take time to set up these details for each medicine entered in My Medicine Profile. Then show your doctor or nurse how you have entered it. Revisit this section to keep it up to date after changes in medicines have been made.

Tracking my daily events - Part 1

Now that you have set up your profile, the Epilepsy Foundation My Seizure Diary can be used to track seizures, medicine use, side effects and much more. This can help you learn more about your epilepsy and make sure your health care team does too!

Tracking my daily events - Part 2

The diary view also lets you track how you've taken your medicine , your side effects, triggers, mood and other events each day. When you have gone thru this, start monitoring your epilepsy and health!

Setting Up Your Account

  • Sign into your diary and go to Account Settings at the bottom of the left hand navigation bar.
  • Create a display name for your diary. This may be your username, or another name that will make it easy to identify. For example if you are creating a diary for another person (ie child, sibling, parent) you may want to name it after them – Ann’s Diary. This is particularly helpful if you have diaries for more than one person.
  • Fill in the gender of the person whose seizures are being recorded, their year of birth, country, state, and time zone.
  • Filling in your gender is important for females to track your menses.
  • Complete My Reminders to set up times to take your seizure medicines.
    • Fill in the times of day you want to be sent reminders for pills (choose up to 4 times each day, using 0 to 24 hours)
    • Click the box if you want reminders to take medicines and refill prescriptions too.
  • Passwords can be changed here too.
  • Click SAVE when are done.

Helpful Tips:

  • Once you have created your diary, you can add events if your device is offline when internet access is not available. If you do this, it’s important to go online as soon as you can to make sure your data is backed up and readily accessible.

Tell the Diary About Yourself – Create Your Profile and Visit About Me

Before you can start tracking seizures, medicines, or other health information, you need to tell the diary about yourself. Click on About Me in the left hand margin to create your profile. Adding information about seizures, medicines, other treatments, your health history and more will help you get started.

Helpful Tips:

  • Once you’ve entered your profile and at least one seizure type, you can start tracking events and in your diary.
  • To track medicine usage and use reminders, create your medicine profile first
  • Come back to this section to edit your information at any time. For example if you’ve had a change in your type of seizures, had a new treatment or change in medicine, make sure you come back to About Me and update your profile.
  • If you have stopped a medicine or changed medicine, enter the end dates to have a medicine automatically be transfered to your past medical history.
  • Start dates of new medicines help to track your progress and see if medicine changes help or not.

Setting Up My Seizures

  • Go to About Me- Click on “My Seizures” to enter what kind of seizures you have and how often they usually occur. This will serve as a baseline so you can easily record them in the My Diary view.
    • You must describe at least one type of seizure and give it a name before you can track events in the diary.
  • Click on the + sign or overflow icon (three vertical dots) to start recording seizure types
  • Complete the “New Seizure Type” form for each type of seizure you have.
    • Seizure name: if you know the type of seizures, use the correct term. Or use a term that best describes your event.
    • How the seizure starts: Use the drop-down menu and click on the description of how the seizure starts. If you don’t know how it starts, choose “I don’t know”.
    • Briefly describe what happens: Write in what happens during the seizure. Include as much detail as you can, including what part of the body is involved.
    • How long the seizure lasts: Use the drop-down menu to choose the average or typical length of this seizure type.
    • How often does it happen: Record how often or how many seizures occur in a time period. Put in the number of seizures, then use the drop-down to record the period of time (for example hour, day, week, month or year)
    • What happens after the seizure: Briefly describe what happens after the seizure as you recover.
    • How long does the recovery last: Use the drop-down menu to choose the average or typical length of time it takes to recover from this seizure type.
    • If diagnosed by a doctor: Select the medical term that has been used to describe this type of seizure by your epilepsy doctor (or medical professional treating your seizures).
      • If the diagnosis is not known or your epilepsy doctor/clinician is not sure what type of seizures they are, leave this blank.
      • Come back to this field and choose the correct seizure type when the diagnosis is confirmed with your medical records.
      • Click Save.
  • To add another seizure type, click + sign or overflow icon (three vertical dots) and repeat the steps above.

Set a Default Seizure

After you have described your seizures, you can note if this is your only or most common type of seizure. We call this your Default Seizure - by identifying a default seizure, it will save you time tracking these seizures in the diary view.

  • To set a Default Seizure, click on My Seizure Type – and click on the type of seizures you would like to call your Default Seizure.
  • This will open a field called ‘Edit Seizure Details’.
  • Scroll to the bottom and check the box next to ‘Set as my default seizure type’
  • Click SAVE – this information will all be saved under My Seizures.

Helpful Tips: If you enter seizures into a diary day without creating a profile and describing your seizures, you won’t be able to track seizures over time or in reports.

  • Make sure your first step is to name and describe your seizures in About Me – My Seizure Types
  • You can still record events if you don’t know what to call your seizures, for example if you don’t know the medical term or even if symptoms have not been diagnosed yet as epilepsy. Give a name to the symptoms that will be easy for you to remember and describe the events.
  • Review the information in your Seizure Types with your doctor or nurse. Enter the correct name of your seizure type (if diagnosed by a neurologist/epilepsy specialist) at the bottom of your Seizure Type entry.

Setting Up My Medicines

Go to About Me- My Medicines. Enter new medicines into one of the 4 categories.

  • Seizure Medicines – enter medicines taken on a regular basis and prescribed specifically to treat seizures.
  • Rescue Rx – medicines, magnet for a device, or other treatment that is used once in a while or ‘as needed’ for seizures. The health care prescriber may call this a ‘prn’ medicine. When a Rescue Rx is prescribed, you should be given specific instructions on when to use it, for example after a seizure cluster, after a certain number of seizures have occurred, if a seizure has lasted a certain period of time, or if there are certain situations or seizure triggers that may occur.
  • Non-Seizure Medicines –medicines that you take for other health conditions.
  • Vitamins & Supplements – any over-the-counter (OTC) or prescribed vitamins, supplements, herbal products or other substances that are being taken for any reason.

Helpful Tips:

  • Medicines must be listed in the My Medicine profile before you can track whether they were taken or not and before you can set reminders.
  • Return to this section to edit or update your medicines whenever there has been a change in dose or if you have started or stopped a medicine.

To Add a Medicine

  • Click on About Me – My Medicines in the left hand bar.
  • Click on the type of medicine you want to enter – or click on the teal colored +.
  • On the Add a New Medicine field, use the drop down menu to choose the type of medicine – Seizure Medicine, Rescue Rx, Non-Seizure Medicine, Vitamins & Supplement

To Add a Seizure Medicine

  • Enter your seizure medicine name: Type in at least the first 3 letters of the medicine name and choose the correct medicine and strength of the tablet, capsule or liquid from the drop down menu.
    • If your medicine is not in the drop down menu, check the box My medicine is not in the list. Then fill in the medicine name and strength on the next 2 lines. Note-Strength of medicine means the dosage of each pill, tablet, liquid or other form of medicine that is prescribed.
  • How the medicine is taken during the day:
    • In the first column, write the number of pills, volume of liquid, or number of doses for a rectal or nasal medicine that is taken during specific times of day labeled morning, midday, evening, bedtime or other time.
    • Next to the time of day, list how often the medicine is taken by using the drop down menu. Most seizure medicines are taken on a daily basis, but sometimes the dose of medicine may change every other day or on certain days of the week. The drop down menu options include:
      • Every day – medicines taken daily
      • Alternate days – or every other day
      • Certain days of the week
      • Once a week
      • Other time
  • Start Date: Record the date that you start (or started) the medicine.
  • End Date: Record the date that you stop (or stopped) the medicine. Leave this blank if you are currently taking the medicine. When the medicine is stopped, open this form and put in the day you stopped it. The medicine will automatically be transferred to your list of past medicines in your medical history.
  • Next Refill Date: Use the drop down to choose the date you need to refill the medicine. Make sure you refill the medicine early enough so you don’t run out. It’s helpful to refill your medicine a week before you run will run out.
  • Refill every (days):Write in how often you need refills, for example every 30 days, 60 days or 90 days.
  • Check the box (enter box symbol) at the bottom if you do not want the diary to track when you take this medicine. Tracking your medicine means that the diary will record how much of your daily medicine you have taken or missed if you check off ‘took medicine’ or ‘missed medicine’ as a diary entry. Tracking missed meds of seizure medicines is the most important step, because missed medicines can make you more likely to have a seizure.

To Add a Rescue Rx

Enter What type of medicine – choose Rescue Rx from the drop down menu

  • Enter your seizure medicine name: Type in at least the first 3 letters of the medicine name and choose the correct medicine and strength of the tablet, capsule or liquid from the drop down menu.
  • If your medicine is not in the drop down menu, check the box ‘ My medicine is not in the list’. Then fill in the medicine name and strength on the next 2 lines. Strength of medicine means the dosage of each pill, tablet, liquid or other form of medicine that is prescribed.
  • How the medicine is taken during the day: Select the number of pills or volume of liquid or doses for rectal or nasal meds taken at certain times. For rescue rx, there are 5 lines titled ‘Other’.
    • Put the amount you take on one line in the first column.
    • Then use the drop down to record when or why you take it – this should be instructions given by your epilepsy team. Options include:
      • During or after a seizure cluster – a cluster is a period of time when a person may have a group of seizures, different than their typical individual seizures.
      • During periods of increased seizures – period of time when a person has more seizures than normal.
      • After a seizure – after a seizure has ended
      • Length of seizure – after a seizure of a certain length. Your doctor/health care team should tell you how long a seizure should be before a rescue rx is taken. The timing of seizures may be different depending on the type of seizure and other reasons.
      • When feeling a seizure coming on – at the beginning of a certain type of seizure if a person is aware of it
      • Around my menstrual period – women who have seizures around their menses may be given a rescue rx to help at this time.
      • When sick with another illness or fever – some people are more likely to have seizures when another illnesses or fever occurs.
      • Other reason
      • Unknown
  • Start Date: record the date that you start (or started) the medicine.
  • End Date: record the date that you stop (or stopped) the medicine. Leave this blank if you are currently taking the medicine. When the medicine is stopped, open this form and put in the day you stopped the medicine.
  • Next Refill Date: Use the drop down to choose the date you need to refill the medicine. Make sure you refill the medicine early enough so you don’t run out. It’s helpful to refill your medicine a week before you run will run out.
  • Refill every (days):Write in how often you need refills, for example every 30 days, 60 days or 90 days.
  • Check the box (box symbol) at the bottom if you do not want the diary to track when you take this medicine. Since rescue medicines are not meant to be taken on a daily basis, usually people to do track this on a daily basis.
  • Instead, you can track when a rescue rx is taken by using the Rescue Rx event (insert icon) on a specific diary day.

To Add a Non-Seizure Medicine or Vitamins & Supplements

  • Enter medicine name: Type in the name of medicine, vitamin, supplement or other over-the-counter product.
  • If you know the strength of dose of the medicine, record it on the same line as the medicine name.
  • How the medicine is taken during the day: In the first column, write the number of pills, volume of liquid, or number of doses for a rectal or nasal medicine that is taken during specific times of day labeled morning, midday, evening, bedtime or other time.
    • Next to the time of day, list when you take the medicine is taken by using the drop down menu. Options include:
      • Every day – medicines taken daily
      • Alternate days – or every other day
      • Certain days of the week
      • Once a week
      • Other time
  • Start Date: record the date that you start (or started) the medicine.
  • End Date: record the date that you stop the medicine. Leave this blank if you are currently taking the medicine. When the medicine is stopped, open this form and put in the correct date.
  • Next Refill Date: Use the drop down to choose the date you need to refill the medicine. Make sure you refill the medicine early enough so you don’t run out. It’s helpful to refill your medicine a week before you run will run out.
  • Refill every (days):Write in how often you need refills, for example every 30 days, 60 days or 90 days.
  • Check the box (insert box symbol) at the bottom if you do not want the diary to track when you take this medicine. Tracking your medicine means that the diary will record how much of your daily medicine you have taken or missed in your daily diary.
    • We recommend tracking only missed or taken doses of seizure medicines, so you can more easily see how a missed dose may relate to times of seizures.When non-seizure medicines, vitamins or supplements are also tracked, it may make it difficult to tell how many missed pills are seizure meds or something else.

To Edit or Delete a Medicine

Click on About Me – My Medicines.

  • Click on the medicine you would like to delete. You will see ‘Edit Medicine’ page
  • Change the content you want to change.
  • Change Date: Add the date when the change occurs.
  • Reason for Change: Use the drop down menu to note why the change was made. Options include:
    • Ineffective – the medicine or dose doesn’t work well enough
    • Side effects – the medicine or dose is causing side effects
    • Both ineffective and side effects – the medicine or dose doesn’t work well enough and is causing side effects
    • Allergy – an allergic reaction has occurred and the drug needs to be stopped
    • Unknown- medicine changed and you don’t know why
    • Other – any other reason not listed here
    • User entry error – a mistake was made when entering the medicine in the diary. Edit the entry and click this reason when correcting the mistake.
  • Click SAVE to save the changes made to the medicine entry.
  • Click DELETE if you want to remove the medicine from your medicine list. Any deleted medicine will show up in your health history automatically as a past medicine.

Setting up My Medical History

Record your health history here so you have it all in one place. Try doing this with a family member to help remember details. Once you enter your information, print it out to share with your doctor or nurse. They may be able to add information and will want to know what you have too!

  • Click on the teal colored + to choose an area to complete.
    • Epilepsy History
    • Family Seizure History
    • Family Disease History
    • Past Medicines
    • Past Medical Tests
    • Follow the onscreen prompts and drop down menus to fill in information.
  • Click SAVE at the bottom of the page when you are done.
  • Upload a document (medical notes, test reports or videos)to your diary with more complete health history if you wish.
  • Check this section as you update your diary. More fields will be added to make this more complete!

Setting up My Social History

This section lets you record certain information about yourself and your social situation that may affect your epilepsy or that may be affected by having epilepsy in some way.

  • Follow the onscreen prompts and drop down menus to fill in information.
  • Click SAVE at the bottom of the page when you are done.
  • Upload documents to your diary with more complete health history if you wish.
  • Check this section as you update your diary. More fields will be added to make this more complete!

Creating My Response Plan

A Seizure Response Plan (sometimes called a Seizure Action Plan) is a document that can organize important information in one place about your seizures, medicines, other treatments, and what to do when a seizure or emergency occurs. This plan lets others know what you’d like done when you have a seizure and what to do if you need more help or emergency treatment.

Learn more on epilepsy.com about:

Click on My Response Plan in the navigation bar. Complete each section in the plan. For privacy reasons, epilepsy.com will not save the personal information section in your diary. Content in the remaining sections will be saved or automatically filled in with data from your seizure and medicine profiles.

  • Personal Information: Fill in your personal information in the top section. You need to fill this part in each time you print or send a new Response Plan.
  • Emergency Contact Information: Follow the prompts to complete these fields. This information will be saved in your diary after the first time you complete it. You can edit this information at any time.
  • Seizure Information: Descriptions of your seizures already entered into About Me- My Seizure Types will automatically be entered into these fields. If you need to edit this information, first update your seizure information in About Me.
  • Triggers: Using the drop down menus, enter any factors that commonly trigger your seizures or make you more likely to have one. You can enter up to 5 triggers.
  • Seizure Medicines: Medicines that you have entered into About Me - My Seizure Medicines automatically show up in your Response Plan. If edits need to be made, please go back to About Me and update your medicine profile.
  • Device Treatment: This section allows you to enter information as free text if you have a device to treat your epilepsy, such as a vagus nerve therapy or responsive neurostimulation. Use the special instructions to tell others if anything needs to done with the device during a seizure. For example, you can give instructions on how and when someone should use a VNS magnet as part of seizure first aid.
  • Other Therapy: Enter information as free text about other things you use to treat seizures. If you have had epilepsy surgery, list the date and type here. Also list if you are on a special epilepsy diet. Make note of any special foods or restrictions.
  • Seizure First Aid: General first aid steps for any type of seizure are listed. These are automatically checked, but you can uncheck them if they do not pertain to your situation. Also use ‘Other care needed’ to write in special instructions for you.
    • Keep Calm, provide reassurance, remove bystanders
    • Keep airway clear, turn on side if possible, nothing in mouth
    • Keep safe, remove objects, do not restrain
    • Time, observe, record what happens
    • Stay with person until recovered from seizure
    • Protect from injury without using physical restraint
    • Other care needed:
  • When Seizures Require Additional Help: If seizures last too long, occur too close together, or too many happen over a certain period of time, other steps may be needed to stop the seizures. Ideally, responding to seizures in these situations hopes to avoid a seizure emergency that requires emergency medical treatment and hospitalization.
    • Type of emergency: List the type of emergency or potential emergency (for example too many seizures, seizure clusters, seizures last too long, or repeated seizures).
    • Description: Describe what may happen or what a person might see in this type of situation.
    • What to do: List what you want an observer or caregiver to do if this occurs. For example, give a rescue rx, call for help, use a VNS magnet.
    • To enter more than one: Click on + ADD ANOTHER, to enter more than one emergency or possible emergency situation.
  • Rescue Rx: A Rescue Rx is a treatment that is given ‘as needed’ at specific times. They are not used as daily treatment for seizures. A VNS magnet may be used at the time of a seizure, while a Rescue Rx medicine may be given for seizure clusters or specific situations that may occur with your seizures.
    • Name: List the name of the Rescue Rx
    • Amount To Give: Write the prescribed dose or amount of Rescue Rx to give. For a medicine, this would include the dose. For a VNS magnet, it would be the number of swipes to use
    • When To Give: List specifically when the Rescue Rx should be given. For example after a certain number of seizures or at a certain time.
    • How To Give: Since rescue treatments come in different forms, it’s important to be clear on how to give the treatment. For example, a VNS magnet is swiped over the generator in the chest. Diastat or rectal diazepam gel is given into the rectum using a special syringe. Some medicines may be placed under the tongue or between the tongue and check while new ones are being given as a nasal spray.
    • To enter more than one: Click on + ADD ANOTHER, to enter more than one Rescue Rx.
  • Call 911 or Seek Medical Attention IF: Some situations could lead to a medical emergency and require more help. Review the list of checked items. You may decide to uncheck an item or add other care that may be needed. Please be sure to review this information with your health care team;
    • Generalized seizure longer than 5 minutes not counting wake-up time.
    • Two or more seizures without recovering between seizures.
    • ‘As needed’ treatments don’t work.
    • Injury occurs or is suspected, or seizure occurs in water.
    • Breathing, heart rate or behavior doesn’t return to normal.
    • Unexplained fever or pain, hours or a few days after a seizure
    • Seizures during pregnancy
    • Other situations
  • Health Care Contacts: Fill in the names and contact information for your health care team including:
    • Epilepsy doctor
    • Nurse or other health care provider
    • Preferred hospital
    • Primary care provider or other doctor
    • Preferred hospital
    • Pharmacy
  • Save and Print:
  • Review your information and click SAVE CHANGES.
  • Click on Show Print View – the Response Plan will show up in a pdf.
    • Save the pdf to your computer, email or print it.

Start Tracking Events in Your Diary – Go to My Diary

Now that you have created your profile, start tracking your daily events.

How to View Your Diary

Your diary can be viewed and used on any size device – a desktop computer, laptop, tablet or smartphone.

  • The diary dates may look different depending on which device you are using.
  • The size and look of the diary can be changed from a monthly to daily view by resizing your device window.

Entering Your Health Events

  • Click on a day in the diary and a new page will open to enter your health events.
  • Record a seizure-free day: Use the quick entry icon (put in seizure free icon) on the top of the Seizure section.
  • To enter seizures or other information, scroll down the page and enter your information for that day.
  • Or click on the teal-colored + and choose what you want to enter. This will take you to the correct section of the event entry page.

Entering Seizures

  • Log a Default Seizure: For purposes of this diary, a default seizure is either the most common or typical seizure type or the type you want to track most easily. If you have labeled a seizure type as a ‘default seizure’ in your About Me profile, you can record these seizures when they happen with one click.
    • Just click on Log a default seizure and the seizure and time will be automatically recorded.
  • Log Any Seizure: To record any type of seizure on a different day or time, click on Log any seizure and a New Seizure Event page will open. You can record individual or cluster seizures. Select the type of event you want to enter.

Individual seizure- these are seizures that occur singly and that you can easily count.

Cluster of seizures- these may be seizures that occur often enough during a period of time that they are too frequent to count. Or clusters could also be a group of seizures that are different than your typical seizures and occur in specific pattern, number, or over a particular period of time (typically minutes or hours).

  • To record an individual seizure:
    • Seizure type: Use the drop down menu to choose a seizure type from the events already entered in your profile.
    • Time: Mark the time it occurred using the drop down and choose am or pm
    • Duration: Note how long the seizure lasted. Use the drop down to mark the unit of time, for example the number of seconds, minutes or hours.
    • Click SAVE.
  • To record a cluster of seizures:
    • Seizure type: Use the drop down menu to choose the type of seizures from your seizure profile.
    • Time: Mark the time it occurred using the drop down and choose am or pm
    • Duration: Note how long the seizure lasted under duration. It may be hard to know how long a seizure lasts. Use the drop down to mark the unit of time, for example the number of seconds, minutes or hours
    • Number of seizures in this cluster: Write in how many seizures occurred or click the box 0 Unsure/too many to count.
  •  Click SAVE.

Recording Medicines Taken or Missed

  • Choose Medicines from the teal-colored +.
  • On the Log Your Medicine page, next to each medicine you will see the number of pills you should take based on what you entered in your medicine profile in About Me.
  • Click on 0 Took or 0 Missed to record if you took your medicines or not.
  • If you took more medicine than prescribed, change the number of pills (or volume or liquid or number of puffs for nasal spray) taken, then check 0 Took
  • Click SAVE when you are done.
  • Click RESET, if you made a mistake or need to start again.

Recording a Rescue Rx

  • On the Log Your Medicine page, click on Add Rescue Rx.
  • Using the drop down, choose the medicine name, the reason it was taken, and how many.
  • If you have a new Rescue Rx or a new reason a rescue rx is taken, go back to My Medicines and update your Rescue Rx profile.
  • If you need to edit a Rescue Rx already entered in your diary, pull up the Log your Medicine page on the desired date. Click on the red x next to the medicine name. The medicine should be removed.
  • Click SAVE.

Recording Triggers

  • Choose Triggers from the teal-colored + to open Add a Trigger page.
  • From the drop down menu, select a trigger.
  • Click SAVE.

Recording Side Effects

  • Choose Side Effects from the teal-colored Ç to open Add Side Effect page.
  • From the drop down menu, select a side effect.
  • Then select severity- Mild, Moderate or Severe.
  • Click SAVE.

Recording and Editing Notes and Attachments

Choose Notes from the teal-colored + to open Edit notes and attachments.

  • Under Notes, use free text to write notes, reminders, or updates about your health.
  • Click SAVE.

Under Attachments, click Upload Attachments, choose your document or video and upload to the diary.

  • A document or video can be removed by clicking the red x.

Recording Mood

  • Click on a diary day.
  • Below Notes you’ll find 3 faces to indicate your mood.
  • Click on the face that best reflects how you feel.

Recording Your Cycle (for females only)

  • To track your menstrual cycle, you can record no menstrual flow, spotting, or menstrual bleeding.
  • Click the one that describes your cycle on the desired day.

To View Your Diary Entries

  • Click on My Diary or Show calendar again and you will see each icon you entered on the desired day.
  • Now you have a visual view of your seizures and health events.
  • To view these in a written form, go to My Reports.

Using Reports – Visit My Reports

Sharing Information with Others – Visit My Shares

  • The Share feature:  this allow you to share your diary with a family member or a caregiver who helps track your seizures, medicines or other events. You can also share information with your clinician.

  • Share with Family/Caregiver

    • ​Select My Shares in the left-hand navigation bar.

    • Select Family/Caregiver from the “Select the Role” drop down, then click Next.

    • Enter a username (if the person already has a diary account) or enter their email if they are new to the diary.

    • You will see a message asking you to invite them to register for the diary and accept your request. Insert their email and choose whether you want to give them “Read Only” access or “Read/Write”.

      • Read access only allows them to view what you have written in the diary.

      • Read/write access lets them enter or edit information as well as read.

    • Your family member or caregiver will receive an email with your request and instructions for registering and using the diary.

  • Share with Clinician: under My Shares, you can also allow a clinician to view your diary.
    • Click on Clinician under “Select the Role”.
    • Enter the person’s username and state the clinician is licensed in. (This should be the state where you see the clinician for care)
    • If the clinician user is not registered with the diary yet, you will be asked to send an invite to them to view your diary.
      • Click OK and fill in the clinician’s work email (as provided by the physician or healthcare team).
      • The clinician will receive an email from My Seizure Diary with instructions on how to sign up and view your diary. Clinicians are not allowed to change any data in the diary and cannot view your notes and attachments.  

Setting Up Reminders

  • Using My Reminders
    • Go to My Reminders under the left-hand navigation panel. You can use the diary to send messages to yourself (called push notifications) on your device or by email.
    • The types of reminders that can be sent include: taking daily medicines at specific times, logging seizure events, logging medication intake, and refilling your medicines.
    • Reminders for taking and refilling medicines can also be sent to a family member or caregiver by checking the correct box and writing in their email address.
  • Set My Medicine Reminder: Check the box and use the scroll bar to set times to have reminders of when to take your medicine sent to you. You can list up to 5 times each day (morning, midday, evening, night, other)
  • Set My Seizure Log Reminder: This feature will remind you to fill in your seizure diary for the day before. Check how you would like to get this reminder - by push notification or email.
    • Each morning at about 9 am you will get this reminder so you can check your diary and enter information if it’s not done yet.
    • If you logged your seizures already, you don’t need to do anything else.
    • If you did not log your seizures yet, follow the instructions to log them.
    • If you were seizure-free, simply check the seizure-free box.
    • Click Save.
  • Set My Medicine Log Reminders: This feature will remind you to fill in whether you took or missed your medicine and if you used a rescue rx. Check how you want to get this reminder – by push notification or email.
    • Clicking on this reminder will take you to the daily medicine intake log.
    • Check a box for each medicine to show if you took it or missed it.
    • Click Save.
  • Set My Medicine Refill Reminders: Check how you (and a family member or caregiver if you prefer) will be reminded of when your medicine refill is due. This reminder can be a push notification, email or both. 
Authored By: 
Patricia O. Shafer
RN
MN
Authored Date: 
01/2018