Knowing What to Do If a Seizure Occurs
An action plan can help a person who has epilepsy and other people around them know what to do in case a seizure happens. Everyone who is diagnosed with epilepsy would benefit from an action plan that includes the proper steps to take when an unexpected seizure occurs.
While some people with epilepsy have triggers that make the seizures more likely, seizures often occur without any predictability. Treatment with antiepileptic drugs (AEDs) and avoidance of triggers are important.
By taking medication, many people with epilepsy have very few seizures, but some may have frequent seizures even with medical treatment. The frequency can range from less than once a year to several per day.
This article will discuss how to create a seizure action plan, how epilepsy is treated, and caring for a loved one with epilepsy.
Epilepsy treatment involves medical care as well as lifestyle measures. Medication is the most common treatment used to prevent seizures. Still, some people also need surgical procedures or dietary changes if standard medication is ineffective or medication side effects are not tolerable.
Complementary and alternative medicine (CAM) treatments are often promoted for seizure control, but they are ineffective and might be unsafe for some people. Discuss any such remedies with your healthcare provider before using them.
Additionally, lifestyle measures to eliminate potential seizure triggers are highly valuable for people who have epilepsy. Illness, sleep deprivation, and alcohol can trigger seizures, including severe seizures.
Medical treatment for epilepsy usually involves taking daily, scheduled AEDs. This requires consistency and discipline. You need to take the medication even if you have not been having seizures. Lack of seizures is an indication that your medication is working. For most people with epilepsy, stopping the medication will trigger a seizure.
In addition to regular daily preventative medication, some people are also given a prescription for anti-epilepsy medication that is to be taken if a seizure occurs or if an aura occurs. An aura is a neurological change that causes symptoms prior to a seizure.
Most people will not benefit from taking medication that is given for an active seizure or an aura. You and your neurologist will have to determine whether you should have a prescription to take if you experience a seizure or an aura.
Other medical interventions involve surgery, and many people who have epilepsy surgery continue to need treatment with AEDs.
Most AEDs have side effects, and it can take some time to determine the ideal dose that controls your seizures with minimal side effects. Do not make changes in your AEDs on your own—discuss your dose, seizure control, and side effects with your neurologist.
In general, complementary treatments are not effective in preventing seizures.
Some people with epilepsy are advised to try a ketogenic diet, which is a highly restrictive, low-carbohydrate, high-fat diet. This does not work for everyone, and you and your neurologist can discuss whether this would be a good option for you.
Identifying and Avoiding Seizure Triggers
If you have epilepsy, there are important lifestyle measures that you need to take, because certain things can trigger a seizure. Triggers include alcohol, sleep deprivation, lack of eating, extreme stress, and medical illness.
Some people also have photosensitive epilepsy, which is a type of epilepsy in which seizures are provoked by rapidly flashing lights. If you have photosensitive epilepsy, you need to take precautions to avoid exposure to this type of light, which can be present in video games and some entertainment.
Less often, people with epilepsy may experience seizures in response to certain smells or sounds. If you have noticed that you have an unusual trigger, be sure to discuss it with your neurologist, who might perform tests to determine exactly what your triggers are and advise you on how to avoid them.
Symptoms of a Seizure
Seizures can cause different symptoms, which may include:
- Staring into space
- Eye blinking or eye-rolling
- Unusual noises
- Stiffening of the whole body or part of the body
- Jerking movements
- Falling down
These symptoms can begin suddenly or may be preceded by dizziness, tiredness, or unusual sensations.
Caring for a Loved One With Epilepsy
If you care for a family member or other loved one with epilepsy, you must become familiar with their medication schedule. This includes knowing which medications they need to take daily for prevention and if there are any medications they need to take when they experience an aura or a seizure.
Most importantly, you must be prepared to take safety precautions if your loved one is having a seizure or it seems like they will have a seizure. Safety precautions involve keeping them away from water, fire, or any sharp objects or potential falls.
You should also have a plan for whom to call or where to take them if they have a prolonged seizure or experience an injury during a seizure.
Why Do You Need an Epilepsy Care Plan?
The key reason for having an epilepsy care plan is to avoid making an emergency decision unexpectedly.
Being prepared in advance also means having guidelines for your care from the neurologist who takes care of your seizures. This type of guidance is based on experience in terms of what works medically and how well people can implement the recommendations into daily life.
When your family, friends, or roommates are aware of the guidance you’ve received from your neurologist, they will be able to handle unexpected or emergency issues safely. And it will also help ease their stress or anxiety about your epilepsy, making them feel more comfortable about your condition.
Creating a Seizure Action Plan (SAP)
There are no widely established or endorsed seizure action plans.4 Each person can work with their neurologist to create one. This would include personalized instructions that you can use and share with others with whom you spend time or who would be in a position to take care of you if you have a seizure.
Research shows that having a seizure action plan is beneficial for people who have epilepsy and for their families.
Who Should Make an SAP?
Anyone who has epilepsy should have a SAP that is created with guidance from a neurologist, and with input and approval from the person who has epilepsy, as well as anyone taking care of them. This ensures that the SAP is medically sound and that it is practical and the people who are involved understand it and can handle it.
What to Include
Currently, there is no well-established uniform epilepsy care plan that’s used for people with epilepsy.
An expert panel meeting in 2021 established the importance of creating a seizure action plan. The panel recommend the following information be included:
- Circumstances specific to the person (type of seizures, where they are located, type of housing)
- Names and numbers of emergency contacts, including their healthcare provider, caregivers, and family
- A description of the individual’s usual signs and symptoms of a seizure and any atypical ones
- How and when to administer seizure first aid to the person
- Information on the individual’s prescribed treatment, including step-by-step instructions on how to give it
- When to start medication and when to contact emergency assistance
Where Is It Kept?
A person who has epilepsy should become familiar with their own epilepsy care plan. Epilepsy care plans should be shared with family members, friends, or roommates who live with a person who has epilepsy. The care plan should also be provided to a child’s teachers, school nurse, coaches, and chaperones for field trips or camps.
The student or parents should discuss the plan to help those individuals understand what needs to be done and answer any questions and address any concerns these individuals have.
Adults may need to share their epilepsy plan with certain people in the workplace who would be expected to call for help if a seizure occurs.
The key components of the care plan may be highlighted for specific individuals so that they can easily understand which parts of the care plan they need to take action on.
For some people with epilepsy, it can be beneficial to wear a bracelet or another identifying device so that emergency care workers will be able to quickly learn of the person’s condition, as well as any allergies.
Some people have severe reactions to AEDs, and this should be made clear so that emergency healthcare providers will quickly know the information when a person who is having a seizure is unable to communicate.
If you or your child has epilepsy, it’s important to create a care plan that you and everybody who is involved in taking care of you or your child will be prepared in case a seizure occurs.
While there is no established format for an epilepsy care plan, there are some general principles that you and your neurologist can work on to create guidelines. These include having an understanding of what to do in case a seizure occurs, knowing when to call for help, and knowing if there is any medication that you should take if a seizure occurs.
Additionally, if there are allergies to any anti-seizure medication, this should be indicated on a bracelet or other obvious device in case emergency personnel are called and need to administer medication.
A Word From Verywell
Living with epilepsy requires planning. While the condition is manageable, sometimes unexpected emergencies occur. Therefore, it’s always good to be prepared and to have a plan of action that guides you and others around you in case an emergency occurs.
You and your neurologist should discuss an emergency action plan for your epilepsy and determine periodically whether it needs to be updated or changed. The emergency action plan includes steps that you may need to take in case you have a seizure.
You will also need to share it with people whom you trust and who are responsible and could potentially put the plan into action in case you are unable to do so.
Source: verywellhealth.com, Heidi Moawad, MD