How do I organize my personal information?

The first step is pretty basic but critical. If you are alone and have a seizure or are not able to talk for yourself, you want other people to know who you are, what to do and who to call. On your seizure plan, make sure to include the following information:

  • Your information: name, home address, phone number
  • Your Birthdate
  • 1st emergency contact: Include full name, relationship to you, and how to contact them. This would be the first person you want contacted in an emergency situation; it’s often your ‘next of kin’ or a health care proxy who you have given permission to speak for you if you are not able to do so yourself. Write down all the ways to get in touch with this person.
  • 2nd emergency contact: Include full name, relationship to you, and how to contact them. This would be the next person you want to be contacted if the first one is not available. Make sure it is someone who can either speak for you if you are not able to do so, or who can help you until your 1st emergency contact, next of kin, or health care proxy can be reached.
  • Electronic Seizure Form: If you are creating this plan in your online epilepsy diary, your demographic and personal information will not be saved and stored on the website. It will print out if you would like or you can leave the personal information blank and fill it in by pen once the rest of the plan is completed online.

How do I keep track of my health care team?

Who is involved in your epilepsy care? Do you know how to reach them or your primary care doctor in a hurry? Does your family know?  Having up-to-date information about your health care team is a crucial part of your Seizure Response Plan.

  • Print out a copy of  My Health Care Team or review one you already have. Fill in this list as best you can and keep it handy.
  • Take the list with you to your next office visit and fill in the blanks! Make sure you keep this up to date as you meet new health care providers.
  • Use the information above in your online Seizure Plan (link  to My Epilepsy Diary) or your paper one (link to pdf)- fill in or update the information under Health Care Contacts. Include:
  • Epilepsy doctor: Doctor treating your seizures.
  • Nurse or other health care professional: Other health care professional you work with most frequently for your seizures
  • Name and number of preferred hospital: This may be the hospital where you receive your epilepsy care. If you live far away from your epilepsy team, make sure a local hospital knows about your epilepsy and can help you in an emergency.
  • Phone number in event of a medical emergency: The number to call in case emergency medical help is needed. In many places, this may be ‘911’. However, check with your local police or rescue squad to be sure of what number to call and write it down here.
  • Primary care physician or other doctor: Put the name and phone number of your primary care doctor (family doctor, pediatrician, internist). If you don’t have a primary care doctor, put the name and number of another doctor who knows you well and can help in case of an emergency. Use this as a reminder to get a primary care doctor if you don’t have one!

How do I fill in my seizure type?

  • If you are completing your  My Seizure Plan on paper, fill in as much information as you can about your seizures. If you have more than one type of seizure, make sure that you write down all types that you have.
  • If you are missing information - Talk to your family or people who have seen your seizures – ask what happens during your seizures and fill in the blanks.
  • Take the information to your doctor or nurse to help fill in the blanks and make sure you have the right words for seizure type.
  • If you are completing your  My Seizure Plan with  My Seizure Event Diary, the seizure fields will be filled automatically with information from your diary. If your types of seizures have changed since they were first entered, you can edit your seizure information.
  • A few tips to make sure your information is correct:
  • Name of seizure: Fill in the name of your seizure type and check this word with the doctor who treats your seizures. Sometimes abbreviated names or nicknames are used that are not accurate. For example, ‘petit mal’ may be used to describe a small seizure and not necessarily a true absence seizure. ‘Grand mal’ could have been used to describe a big seizure that may not be a true tonic-clonic seizure.
  • What happens: Fill in the key features that happen during your seizures. Use terms that other people will understand.
  • How long it lasts: Write down how long your seizures usually last- include the length of the active seizure and not the recovery period (or postictal phase) of the seizure. It’s helpful to check the time with the people who witness them most often. If you have had EEG telemetry, talk to your doctor and find out what the tests results showed and how long the seizures lasted.
  • How often: Write down how often your seizures usually happen, for example once or twice a week, daily, once every 3 or 4 months, or once a year. If you haven’t had a seizure in over a year, write down ‘none recently’ and include the date of your last seizure.

Why should I include my seizure triggers?

Letting others know your seizure triggers may help family and friends know when you might have a seizure. This can also help your health care team know when to recommend ‘as needed’ rescue treatments.

  • In your My Seizure Plan, write what factors may make you more likely to have a seizure. Include times of day or month that your seizures may occur, for example at night, before a menstrual period, when waking up, or when sick.
  • If you are using your My Seizure Event Diary to complete your seizure plan, any triggers you have entered will be listed under this section of your plan. Edit or add any triggers if needed.
  • As you learn more about your seizures, make sure to update this section regularly.

How can I keep track of seizure medicines that I take daily?

Keeping good seizure control depends on taking seizure medicines regularly and at the right dose.  It helps to keep track of them in easy to understand language! Other people need to know what you are taking too, in case of an emergency situation or if you just can’t remember it all by yourself. Here’s a few tips to organize your seizure medicines:

  • Collect all your pill bottles or prescriptions in one place.
  • Daily Seizure Medicine: On your  My Seizure Plan, fill in the names of medicines that you take to treat seizures each day. Include only the key information that may be needed in an emergency on this form.
    • Medicine name: Put the name of the drug on the pill bottle and if you take the brand or a generic form.
    • Total daily amount: Write down the total amount of each drug taken daily, using the strength of pills or liquid.
    • Amount of pill, tablet or liquid: Write down the strength of each tablet. If you have more than one size, include the strength of each tablet. If a liquid is used, write down the amount in a teaspoon.
    • How taken: Write down how much medicine you take and the times they are taken.
  • If you are making your seizure plan using your My Seizure Event Diary, the medicines you have entered into your diary will be seen in this section of the seizure plan. Make sure to check the information and edit them if needed.

What can I use to help me remember to take my medicines?

  • In your My Seizure Event Diary, you can print out a Medicine Organizer to use as a schedule of when to take your medicines.
  • Or use one of the other programs, such as Texting 4 Control.
  • If you want to make your own calendar, visit Medication and Communication Tools and print out a copy of Medicine Schedule
    . Use this chart to keep track of all the medicines you take, and when to take them. You can include more detail here that will help you take the medicines on a regular schedule.
  • Make sure to include all prescription medicines and over-the-counter products you take. Also include any medicine or intervention that is used for ‘as needed’ or rescue treatments.
  • Include why you are taking the drug, either for seizures or a different condition.
  • Make sure medicine schedules have the total amount you take each day as well as how much you take at different times, for example 1 pill every day, 2 pills twice a day, or 1 pill four times a day.
  • Review any forms or charts with your doctor or nurse.  Make sure the information is correct and that you aren’t missing anything.
  • Now you have a medicine schedule that you can use each day, as well as part of your seizure prepare plan completed!

How do I keep track of other seizure treatments I use?

It’s important to know what other treatments you are using to control seizures, for example dietary therapies or medical devices, and whether you have had epilepsy surgery in the past. If an emergency, people who take care of you will need to know about these. For example, if you have a VNS they need to know how to use the VNS magnet. If you are on a special diet, they need to know what it is so they can give you the right food!

On your Seizure Plan, complete the sections for ‘Other Seizure Treatments’.

  • VNS Therapy: If you have a vagus nerve stimulator implanted, write down the model number, serial number, and date it was last implanted or replaced. This information can be found on the registration card you were given at the time of surgery. If you don’t have this, you can get the information from the doctor and nurses who program the VNS.
  • Dietary therapy: Note if you are following a special diet that was prescribed to treat seizures. Include the name or type of diet (for example, ketogenic diet, modified Atkins diet) and the date it was begun.
  • Special instructions: Write down any special instructions that you or other people should know about any devices or dietary therapies, especially if there are any safety concerns.
  • Other therapies: Write down any other therapies that you may use for your seizures. If you have had epilepsy surgery, write down the type and date.

How do I let people know what to do for seizure first aid?

Seizure Response Plans should tell others what to do in case you have a seizure. While there are general steps for all seizure types, you may have specific things you want others to do when you have a seizure.

  • Review this section with your doctor or nurse to make sure you all agree on how others can help you during a seizure.
  • On your Seizure Plan, check off each First Aid step that applies to you and your seizures.
  • Using the online Epilepsy Diary: Some of the first aid steps will already be checked. You may uncheck them if you and your doctor decide they don't pertain to you, and check other steps that may apply.
  • If there are specific things that should be done for your seizures, write them down under ‘Other Care Needed’. For example if you tend to wander or run during a seizure, write down if it’s okay to let you walk in an enclosed place or to be sure and shut a door to prevent you from running.

How do I tell people when I need more than typical seizure first aid?

Nearly all seizures end on their own, but you need a plan on what to do if your seizures don’t stop as expected. On your Seizure Response Plan, you can tell people what can be done if you need additional help- above and beyond routine seizure first aid.

On your  My Seizure Plan, fill in the following information:

  • Type of seizure or emergency: Describe the type of seizure or seizure emergency that may need additional help, for example seizure clusters, repeated seizures, or seizures that last more than a specific amount of time.
  • List seizures that occur during high-risk times or under certain circumstances.
  • If you aren’t sure when seizures require more help, talk to your doctor or nurse to complete this section.
  • Describe what happens in each type of situation you listed. Make the description understandable to others and as specific as possible. For example, a seizure cluster could be described as having a certain number of partial seizures in ‘x’ number of days. If you have a tendency to long seizures, make sure to describe how long a person should wait before giving or using the intervention.
  • What to do: List the types of interventions or medicines that have been prescribed for ‘rescue medicines or to use ‘as needed’. For example, list if the VNS magnet should be used, or medicines such as Diastat, lorazepam, or diazepam given.

Make sure to give details of how to give ‘rescue’ or ‘as needed’ treatments!

If you have been prescribed a treatment to use when seizures last too long or in special circumstances, record what people should know to use this properly.

On your  My Seizure Plan, give specific instructions for each medicine or intervention prescribed for you.

  • Type: VNS Magnet, Diastat AcuDial, or the specific name of the prescribed ‘as needed’ medicine.
  • Amount or dose: List the specific amount that should be given at one time and whether one or more doses can be given. For example, “Give 1 mg”
  • When to give: List the specific reason and time to give the treatment. For example, “Give after the third seizure in one day” or “May give 1 mg if seizures continue for more than one hour."
  • How to give: Write in exactly how the medicine or treatment should be given. For example, “give rectally” or “put under tongue”.
  • Side effects: List the possible side effects that may be seen when the medicine is given so that other people will know what to expect. It may help to say what to do if the side effect occurs. For example, “sleepiness may occur after medicine. Let him rest for half hour “.
  • Examples of how to write “As Needed” Treatments:
    • VNS Magnet – Swipe magnet over the generator for 1 second at beginning of seizure, repeat after 1 minute.
    • Diastat AcuDial – Give Diastat, 7.5 mg with 4.4 cm tip size, after second seizure in one day, give rectally – see instructions with Diastat, may be sleepy, let me rest for 30 minutes and then return to class.
    • Lorazepam - Give Lorazepam, 1 mg, after the third seizure in one day, may give another 1 mg if clusters of seizures continue, place under tongue, may be sleepy or unsteady – let me rest. Call the doctor if more than 4 seizures in one day.
    • New medications: Some medications are being developed that can be given in spray form into the nose, or as an injection into an arm or leg. If you are using any of these, fill in the necessary information to use this properly.

When should emergency help be called?

Sometimes, despite the best treatment, a situation can develop that requires emergency medical help. It’s important to talk to your doctor or nurse about when emergency help should be called for you.

  • On your My Seizure Plan, check off each reason that pertains to your situation. You may have all the boxes checked or your doctor may want to write in specific instructions under the “other “category.
  • If you are completing the form in My Seizure Event Diary, some boxes will already be checked. You can uncheck those that you and your doctor feel do not pertain to you as well as add individualized instructions.
  • A generalized seizure that lasts for longer than 5 minutes
  • Two or more seizures without recovering (or coming to) 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 that occurs hours or within the first few days after a seizure
  • Seizures during pregnancy
  • Other instructions from your doctor
Make sure that you, your doctor and your family agree on when to call for emergency help.
  • The information listed here is for general guidance – there may be times when someone doesn’t feel comfortable with how you look after a seizure or what has happened. When in doubt about what to do, it’s always a good idea to call for emergency help and let the rescue team check you out and take you to a hospital if needed.

When should I review my seizure plan and what do I do with it?

Congratulations! Once you have finished putting together your seizure plan, don’t forget to review and use it!

  • If you created a plan from your online epilepsy diary, you can save it and print out copies.  If your plan needs to be updated, just visit your epilepsy diary and pull up the form to make changes.
  • Take it to your epilepsy doctor, nurse or health care professional who manages your seizures. Ask him or her to sign the bottom. Then you (or your primary caregiver) should sign it to show that you all agree with the plans.
  • Now it’s time to make copies – one for your doctor, one to carry with you, one to keep at home, and copies for anyone else with whom you (or your loved one) spend a lot of time (for example, school , camp, grandparents, workplace). Make sure you write down who has copies so that you can give them a new version if it needs to be updated.
  • Take it to routine office visits so you can change it if anything has changed. . Also take it with you whenever you are hospitalized for any reason. The people taking care of you will want to know how your seizures are managed at home.
  • Use it to teach other people in your life about your seizures!
Authored by: Steven C. Schachter, MD | Patricia O. Shafer, RN, MN | Robert Fisher MD, PhD | Joseph I. Sirven, MD on 8/2013
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