Building your epilepsy IQ means learning about all the ways that epilepsy affects your life. Epilepsy affects each person differently.3 What is most important about how epilepsy affects your life? Think about what is most important to you as you develop self-management tools to help manage your seizures.6,9 The goal of epilepsy self-management is to live the best life possible while managing the disease.6,9
Learning more about common epilepsy terms can help you build your epilepsy IQ and self-management skills.
Seizure triggers are specific things that may cause your seizures. Triggers are different for each person with epilepsy.10 If you know what your seizure triggers are, then you can try to avoid them.11
A seizure trigger is something that happens regularly before seizures. Here are some common seizure triggers10,11:
You may already know what your seizure triggers are. If so, you might want to share this information with your family, friends, coworkers, and healthcare professionals so they can help you avoid your triggers.
If you don't know what your seizure triggers are, try to remember what you were doing before you had a seizure.6 Here are some ideas to think about:
- Where were you?
- Were there flashing lights or anything else going on around you that may have triggered the seizure?
- How did you sleep the night before?
- Were you feeling extra stress around the time of the seizure?
- What did you eat or drink that day?
If you can remember what was happening right before you have a seizure, you can write this down on your seizure diary each time you have a seizure. If someone was with you when you had a seizure, ask if the person remembers anything that might have triggered the seizure. You and your healthcare professional might be able to figure out what your seizure triggers are by looking at your notes.6,10
An aura is a warning that some people may have before a seizure. Not everyone with epilepsy has an aura. For people who do have an aura, it may be hard to describe. An aura can be a change in feeling, sensation, thought, or behavior. If you have an aura, it could be the same each time you have a seizure, or it could be one of the warning signs mentioned.12 An aura may actually be a seizure for some people with epilepsy.13,14
Risk factors are something that can make a person more likely to have epilepsy. Not everyone who has epilepsy has risk factors. Here are some risk factors for adults with epilepsy11:
- Alzheimer's disease
- Brain injuries, tumors, infections, or bleeding
- Stroke (blocked blood vessel in the brain)
- Family history of epilepsy
- Family history of seizures that happen during a fever
- Use of illegal drugs such as cocaine
Drug-resistant epilepsy means that after trying either 2 different types of AED medications alone or after trying 2 different combinations of AED medications, you continue to have seizures.15
Status epilepticus is a series of continuous seizures that last over a period of time and may cause brain injury.17
In some people, status epilepticus is caused by something happening in the brain, such as a brain tumor or a brain infection. In other people, there is no known cause.17
Sudden Unexpected Death in Epilepsy (SUDEP)
SUDEP is a sudden unexpected death related to epilepsy. It is not caused by drowning or another type of accident that could lead to death while having a seizure. SUDEP can happen with or without a seizure.18
SUDEP might be hard to talk about, but knowing that it could happen is an important part of prevention.18
Facts About SUDEP
Here are some facts about SUDEP:
- About 1 in 1000 adults with epilepsy die of SUDEP each year19
- Frequent seizures, especially generalized tonic-clonic seizures, are the greatest risk factor for SUDEP19
- Most common epilepsy-related cause of death that is not due to physical injury18
- Happens more often in people with epilepsy who could be treated with surgery18
- Among neurologic conditions, SUDEP ranks second, after stroke, in years of potential life lost18
Risk Factors for SUDEP
Doctors and researchers are studying SUDEP to learn more about it. It is not known yet if SUDEP can be prevented.18
These SUDEP prevention tips are especially important if you have generalized tonic-clonic seizures. Some people at high risk of SUDEP might wear a seizure monitoring device while sleeping.18