Epilepsy is a complex disorder and epileptic seizures affect people in lots of different ways. There are two main types of seizure, known as focal seizures and generalised seizures. Each one of these has numerous seizure subtypes and knowing which kind you have is important in deciding what treatment you should receive.1 The better you and your caregivers’ understanding of your seizures, the easier it will be to manage your epilepsy. A great way to learn more about your seizures is to keep a seizure diary.
What is a seizure diary?
A seizure diary is a personal record of day-to-day seizure activity. This means that each time you have a seizure, you note the date and time and how it affected you.2 In your seizure diary you can include information about what you were doing and how you were feeling at the time. Other things that it can be helpful to make a note of include3:
- Sleeping patterns
- Use of certain medications, or any missed medications
- Illness
- Menstrual cycle or other hormonal changes
- Alcohol or drug use
- Stress
- Any specific food or drinks (e.g. caffeine)
Why is it helpful to keep a seizure diary?
By keeping a seizure diary, you will be able to see if there is a pattern to your seizures. You may find that they are more likely to happen in certain situations. If you notice that there is something that often occurs before your seizures, this could be a trigger. By identifying potential seizure triggers, this means you may be able to avoid situations which cause them. It allows you and your caregivers to be prepared and potentially lower the chance of a seizure happening.3
Another benefit of keeping a seizure diary is that it can help your doctor to better understand your seizures. Having a first-hand account of what happens can help the doctor to diagnose what kind of seizures you experience. This will give them a better idea of what the cause of your seizures is and can give you and your family a better understanding of what to do when you have a seizure.4
A seizure diary also allows your doctor to see how effective your treatment is. Medications for epilepsy can differ depending on the type of seizure you have. By having more information, the doctor can decide if your current treatment is what is best for you and can effectively plan your future treatment.4
How do I keep a seizure diary?
There are number of different ways you can keep a seizure diary; the most important thing is that you pick the method that works best for you. Some people prefer to keep a paper record of their seizures in a journal or calendar, but there are electronic options available, and you will be able to find plenty of templates online. The key thing is that the diary is easy for you to use and can be easily shared with your doctor and other caregivers.5
LepsiApp, the first prescription medical application for epilepsy management
A great option for keeping a seizure diary is our brand new LepsiApp. The LepsiApp is the first prescription medical application for epilepsy management, this means to use the app your doctor must register you. It has been designed by healthcare professionals with the aim of improving epilepsy management and allows you to record possible triggers and seizures. Not only that, if you feel as though you are about to have a seizure you can send an alert to your emergency contacts with your GPS location.6
The app creates graphs of your reported seizures that can be shared directly with your doctor to allow them to a deeper insight into your epilepsy so they can continually tailor your treatment.6 The LepsiApp is currently available in Spain, Germany, France and Italy but will be launched in other European countries in 2022.
Our top tips for keeping a seizure diary
1. The more detail, the better
The more detailed the information is that you record, the better the insight you and your doctors will have into your epilepsy. Try and put down as much information as you can about the symptoms and circumstances of your seizures. The LepsiApp offers a complete questionnaire that helps guide you in the aspects that are important to record.
2. Share the information with your doctor
Sharing the information of your diary with your doctor can help them have a better overview of your condition in between visits and support them in the improvement of your treatment plan.
3. If you can, record the seizures and upload them for the doctor to review
If there is a possibility to record the seizure, uploading and sharing with your doctor can be very beneficial for your epilepsy treatment. The LepsiApp allows you to upload the videos of the seizures easily and share them with your doctor.
4. Make a note of how you felt after your seizure
As well as recording any feelings before and during your seizure, it is also beneficial to make a note of how you felt after your seizure if you notice anything specific. This will further help your doctor to determine what kind of seizures you have.
5. Talk to your medical team if you are unsure
It may be overwhelming to try and make a note of everything. If you are unsure what factors to keep track of, talk to your medical team and they will be able to advise you on what information would be most beneficial for you to record.
References
1. Sirven, J.I., 2015. Epilepsy: a spectrum disorder. Cold Spring Harbor perspectives in medicine, 5(9), p.a022848.
2. Epilepsy Society. Epileptic Seizures. Seizure Diaries. Updated May, 2019. Accessed December 2021
3. Epilepsy Foundation. Triggers of Seizures. Updated July, 2021. Accessed December, 2021.
4. Epilepsy Foundation. Importance of Tracking Seizures. Updated August, 2021. Accessed December, 2021.
5. Epilepsy Foundation. Using Seizure Diaries. Updated September, 2019. Accessed December, 2021.
6. Healthcare Insights. LepsiApp. Accessed December, 2021.
