Coping With Epilepsy

Woman leading group therapy session
Getty Images/Tom Merton

Learning how to cope with epilepsy is just as important as your treatment. Having epilepsy will affect your daily life to some degree, so it's important for you to understand and face this so that you can better manage your condition. While everyone copes differently, there are some tips that can help you on the road to understanding and managing your epilepsy.

Emotional

Particularly when you're first diagnosed with epilepsy, coping with your emotions can be difficult. You may feel grief, sadness, or anger over learning that you or your child is dealing with seizures, all of which are normal. Here are some ways to cope.

Learn About Your Condition

Being diagnosed with epilepsy can be devastating because it alters every aspect of your life. Not only does this condition affect you physically through seizures, it can also affect you emotionally. While it might be tempting to avoid learning about your epilepsy, it can actually be good therapy to learn everything you can. Learning about the causes of your condition, as well as the treatments your healthcare provider prescribes for you, can be very empowering. It also helps to be able to separate the facts from the myths and misconceptions that you may have heard about epilepsy. The Epilepsy Foundation has a website that's packed with articles about every aspect you can think of regarding epilepsy.

Watch for Depression and Anxiety

Having epilepsy not only affects you physically, it can affect you mentally, too. In fact, depression is a common problem, affecting an estimated one in three people with epilepsy at some point in their lifetimes. Be sure to watch for symptoms of clinical depression and/or anxiety in yourself or your child with epilepsy and talk to your doctor as soon as possible if you think there's a problem.

Treatment can help and improve your quality of life tremendously. It may also be helpful to keep a journal. Writing down your thoughts can help you sort out your feelings.

Find a Doctor You Like

If you don't feel comfortable with your doctor, it might be time to find a new one because you are likely going to see this person quite often for the foreseeable future. Make sure it's someone you can trust and openly communicate with. Being able to discuss your concerns and progress with your doctor will help you both in finding the best treatment for your epilepsy.

Physical

Epilepsy may affect physical aspects of your life such as sleep, exercise, and memory. Here are some ideas for coping.

Take Your Medications Religiously

The medications that you take to control your seizures are vital to your treatment. It's important that you don’t ever skip a dose because this could mean a loss of control over your seizures. If the side effects from your medication become very bothersome, or the drug is not controlling your seizures completely, discuss this with your healthcare provider rather than stopping your medication on your own. You should never stop taking your medication without your doctor's approval and supervision as this can lead to serious complications and even death.

If your medication isn't cutting it, your healthcare provider may decide to change the dose that you're on, change the medication you're taking completely, or even add another one to your regimen.

Here are some tips regarding medication:

  • Purchase an inexpensive pill organizer at a pharmacy, especially if you're taking multiple medications. In general, it's best to keep all medications in their original containers. Keeping a pad of paper in which you check off your medications as you take them may also be helpful. The important thing is to have some type of system that jogs your memory and gives you a visual reminder of whether you have taken your medication or not.
    • If you're prone to forgetting to take your medicine, set an alarm on your watch, an alarm clock, your smartphone, or even your oven to remind you to take your medication. In time, remembering your medication may become more of a habit. Don't be afraid to enlist someone such as a partner or friend to remind you as well, at least early on.
    • If you're comfortable with your smartphone or computer, consider using one of the medication-related apps that are now available.
    • Never stop any medication before discussing it with your healthcare provider. This includes before surgeries. Sometimes people are told not to take medications on the day of an outpatient surgery as a part of not eating or drinking. Unless your neurologist specifically states that you should not take your medication, seizure medications should be continued with a small sip of water.
    • If you are having side effects from your seizure medication, talk to your doctor. There are several different options available for those who have seizures, but it's important to have your doctor's advice on how to switch from one medication to another.
    • If you are unable to afford your medication, talk to your doctor. There are many options. Some pharmaceutical companies offer discount plans based on income. Your doctor may be able to switch you to a less expensive medication as well.
    • If you develop nausea and vomiting for any reason that causes you to be unable to keep down your medicine, contact your doctor immediately. Sometimes intravenous seizure medications are needed until you are able to take oral medications again.
    • Keep your refills up to date. Always try to refill your medication three to four days ahead of time (and longer if you receive mail-order prescriptions). This can help to avoid missing any medications due to holidays. If you're planning a trip, talk to your pharmacist well ahead of time, as some insurance companies will not allow early refills. If you will be out of town when the time comes to get your refill, you could end up missing medications. Talk to your pharmacist about making arrangements with your insurance company for an exception or filling your prescription at another pharmacy on your trip.

    Get Enough Sleep

    For many people, sleep deprivation is a significant seizure trigger. The amount and quality of sleep that you get can affect your seizure length, frequency, timing, and occurrence. Because of this, it's important to prioritize your sleep and to work to make sure it's as high quality as possible.

    If you have seizures at night, they may interfere with your sleep, causing you to wake up frequently and only get fragmented light sleep. This can result in daytime sleepiness because you're not getting as much of that deep rapid eye movement (REM) sleep you need. Talk to your doctor if your seizures are causing you to lose sleep as this can result in more seizures overall.

    Some medications to prevent seizures can cause side effects like drowsiness, insomnia, or difficulty falling or staying asleep. Be sure to talk to your doctor about this if these sleep disturbances are severe or don't go away. You may be able to try a different medication instead.

    Don't Rule Out Sports and Activities

    If you're wondering about you or your child participating in sports, the International League Against Epilepsy (ILAE) has come up with suggestions for people of all ages who are interested in playing either amateur or professional sports. In the past, people with epilepsy often weren't allowed to participate in sports, but exercise is so beneficial for epilepsy, it should be encouraged. To that end, the ILAE came up with these suggestions to help categorize risk for medical professionals who care for people with epilepsy so they can be as involved in sports as possible. Activities and sports are divided into three categories based on risk and suggestions are made as to which categories are permitted in relation to your seizure frequency and type. Talk to your doctor about what activities and sports are right for you and your condition.

    Write It Down

    Memory problems are very common when you have epilepsy. Your attention span, ability to process information, and your ability to store and retrieve information can all be affected by epilepsy. If you're experiencing memory problems, try this:

    • Make a “to-do” list that contains reminders such as deadlines, important tasks for that day, and appointments.
    • Use a calendar to help remind you of important dates, whether it's paper or digital.
    • It might be helpful to keep a pen and a piece of paper nearby or in your pocket or purse to remind you of important conversations you might have had that day, a new task you may have learned at work, or an important phone number. You can also use your smartphone for this.

    It's also a good idea to write down anything and everything that has to do with your epilepsy, from symptoms to feelings to experiences. This can help you and your healthcare provider identify seizure triggers and track your progress.

    Social

    Finding social support when you have epilepsy can be instrumental in helping you cope.

    Find an Epilepsy Support Group

    Interacting with others who also have epilepsy can not only help you cope with your epilepsy, it may also help you to manage it too. Getting tips, advice, and hearing about others' experiences with epilepsy can also make you feel less isolated and alone. There are support groups that meet face-to-face, but there are also many online forums that are specifically dedicated to individuals suffering from epilepsy. The Epilepsy Foundation has community forums, a chat room, and a 24/7 helpline to answer questions. You can also find your local Epilepsy Foundation, which is a wonderful resource for information, support, and education.

    Talk to Your Loved Ones and Co-Workers

    Your loved ones are important allies in your life and are also concerned about your health and your condition. Talking to your friends and family about epilepsy paves the way to understanding and acceptance both for you and for them. Let them know what happens during your seizures, what constitutes an emergency, and how this diagnosis makes you feel. You may want to consider telling your co-workers about your diagnosis and how to handle a seizure as well. Being prepared for a situation in which you have a seizure, especially if it turns into an emergency situation, will help you all feel less anxious.

    Here's a general list of what to do when someone has a seizure:

    • Remain calm. Seizures can be scary, but many seizures are generally harmless and pass within a few minutes.
    • Move the person away from anything that might harm him or her if the seizure involves convulsing.
    • Roll the person onto his or her side.
    • Don't put anything in the person's mouth.
    • Time the seizure as closely as you can.
    • Watch carefully to see what occurs during the seizure. If you have the person's permission ahead of time, video record it because this can be helpful for treatment purposes.
    • If the seizure lasts for more than five minutes, is followed closely by another seizure, the person isn't waking up, or if the person has instructed you to get help whenever a seizure occurs, get emergency help.
    • If you're unsure if the person needs emergency help, call anyway. It's better to be overly cautious.
    • Stay with the person until help arrives.

    Practical

    There are all sorts of practical aspects to think about when it comes to coping with epilepsy.

    Screen Time

    Since video games, computers, tablets, and smartphones are a big part of our culture, you may be worried about the fast-moving images and flashing or bright lights causing seizures, especially if it's your child who has epilepsy. While it's true that these can trigger seizures in certain people, a condition known as photosensitive epilepsy, this only occurs in about 3 percent of people who have epilepsy. Photosensitive epilepsy is more common in children and teens, particularly those who have juvenile myoclonic epilepsy or generalized epilepsy, and it's rare by the time kids become adults.

    If your child has epilepsy, remember that while exposure to flashing or flickering lights, patterns, or fast-moving graphics can trigger a child's first seizure or cause your child with epilepsy to be diagnosed with photosensitive epilepsy, this exposure doesn't cause photosensitive epilepsy to develop. In other words, either people have this sensitivity or they don't. Even people without epilepsy can have a seizure that's triggered by visual stimuli, though this is rare. Some people only have seizures in response to visual stimuli while most others have photosensitive epilepsy along with other types of seizures.

    For people who have photosensitive epilepsy, it usually takes the right combination of certain factors to cause a seizure such as the level of brightness, how quickly the lights are flashing, the wavelength of the light, the distance between the person and the lights, and the contrast between the background and the light source. Staying away from strobe lights, sitting at least 2 feet away from TV screens in a well-lit room, using a computer monitor with a glare guard, and reducing the brightness on screens can help. Medication works well to control many cases of photosensitive epilepsy.

    School

    According to the Centers for Disease Control and Prevention (CDC), approximately 470,000 children in the United States have epilepsy. This means that a large number of school districts around the country have or have had some students with epilepsy at some point. However, this doesn't necessarily mean that they have much experience with it since every person's epilepsy is different.

    As a parent, it's your job to advocate for your child's needs. In order to do that, you need to understand what those needs are and what options are available to your child at school. The Individuals with Disabilities Educational Act (IDEA) was written to help both parents and students find support.

    Because epilepsy often occurs with conditions such as autismlearning disabilities, or mood disorders, each child's challenges are different. In a school setting, a child's needs fall under three categories, including:

    • Medical needs: Your child may need help managing seizure medications and/or a ketogenic diet, as well as someone to respond to seizures should they occur at school. If there's a school nurse, this will be your source. Your school nurse will need to be kept in the know about everything from potential medication side effects to stressors that may affect your child to switching doctors to starting a new medication to how to handle a seizure. If your child is on a ketogenic diet, the school nurse will need to know about that too. Your child's teachers may also need to be trained in handling a seizure. Talking to the school administration, school nurse, and your child's teachers before school starts for the year about a seizure response plan is a good idea.
    • Academic needs: Even if your child doesn't have any learning difficulties, epilepsy can affect attention and memory. Seizures can interfere with your child's ability to take notes, pay attention, or participate in class, and seizure medications can make your child sleepy or foggy, so these issues should be discussed before school starts as well. Your child may need to be on an Individualized Education Plan (IEP) or a 504 plan, both of which will work to meet his or her specific needs. A 504 plan is a tool to help kids get the support and accommodations they need to participate in the general school program. An IEP is geared more toward kids who have difficulty with the general curriculum such as those with learning disabilities, mood disorders, or intellectual disabilities. You can read more about the rights your child has to receive a wide range of services and support at school in a comprehensive and thorough manual from the Epilepsy Foundation.
    • Social needs: Children with epilepsy sometimes face significant social challenges. This may be due to other coexisting conditions like mood disorders or autism, but sometimes it's because of epilepsy. Your child's peers may not understand epilepsy and other parents may be worried about being in charge of a child who may have a seizure. Some people are afraid of epilepsy. It may be difficult for your child to participate in certain activities like staying at a friend's house simply because of medical needs. Medication can have side effects like grogginess that make it hard for your child to interact with others. An IEP or 504 plan can help address any social challenges your child may have by putting accommodations in place for him or her to participate in social and school activities and events. Working on social skills may also be beneficial.

    Epilepsy can make school more difficult, but if you stay involved in advocating for your child and communicating with your school administration and staff, this will go a long way toward making your child's school years successful.

    Work Matters

    Despite the many treatment options that are available to help manage seizures, you may be afraid that you'll have problems getting a job or keeping one—even when your seizures are well managed. However, studies show that people with epilepsy who are employed have a better quality of life, so there's good incentive to get and keep a job.

    It's a myth that if you have epilepsy you're less capable than others when it comes to job performance. People with epilepsy perform well in many job fields, including high offices. Supreme Court Chief Justice John Roberts was reportedly diagnosed with epilepsy following a seizure in 2007.

    Discrimination: There are federal and state laws in place that are designed to prevent employers from discriminating against individuals with epilepsy. One of these laws, the Americans with Disabilities Act (ADA), prohibits discrimination against individuals with any type of disability.

    For example, employers are forbidden to ask whether you have epilepsy or any other medical condition before a job offer is made, and you're not required to disclose your condition during that process. Employers can ask about your health status and may even require a medical exam following a job offer, but they must treat all applicants equally. This means that they can't single you out for having epilepsy.

    You don’t have to tell your current employer about your condition if you don't want to. There are some good reasons to disclose, and there are also some good reasons not to tell. Telling your employer about your condition is a personal decision, not a requirement.

    Some people may decide to reveal their diagnosis simply because they don't want to hide anything. Others might do it because they feel that their co-workers need to understand what to do in the event that they have a seizure in the workplace, or to better inform them about their condition (see "Social" above). On the other hand, some people choose not to tell their co-workers and employer about their epilepsy because they value their medical privacy or fear that their diagnosis may be used against them.

    Be aware that your condition may come up if you participate in urine drug screening, since some anticonvulsants, such as phenobarbital, may produce positive test results. It's important for your employer to know the medications that you're taking in case your drug screen tests positive for a medication that you use to prevent seizures. This way, he or she can draw proper conclusions from those positive test results.

    Special Accommodations: If you have epilepsy, there are no special accommodations needed while you're on the job. However, just as with any chronic health condition, taking your medications and taking care of yourself and your overall health is crucial. If you have a very demanding job that requires you to work long hours or different shifts, make sure that you get enough sleep and that you don't skip any doses of your medication.

    Safety: Job safety is also important, especially if your seizures are not fully controlled. There are many small adjustments that you can make so that your work environment is safer just in case you do have a seizure while you are on the job. You can also look into working from home instead if you're concerned about your safety.

    Safety requirements for positions where you must drive vary from state to state. If you have epilepsy, some states might require you to be seizure-free for a certain period of time before you're allowed to drive, whereas other states may require the approval of a healthcare provider in order to allow you to drive.

    Sources:

    Capovilla G, Kaufman KR, Perucca E, Moshe SL, Arida RM. Epilepsy, Seizures, Physical Exercise, and Sports: A Report From the ILAE Task Force on Sports and EpilepsyEpilepsia. January 2016;57(1):6-12. doi:10.1111/epi.13261.

    Epilepsy Society (UK). Just Diagnosed. Published April 2018. https://www.epilepsysociety.org.uk/sites/default/files/attachments/JustdiagnosedbookletApril2018.pdf

    Shafer PO, Sirven JI. Photosensitivity and Seizures. Epilepsy Foundation. Published November 18, 2013. https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizures

    U.S. Equal Employment Opportunity Commission. Questions and Answers About Epilepsy in the Workplace and the Americans With Disabilities Act (ADA). https://www.eeoc.gov/laws/types/epilepsy.cfm

    Zack MM, Kobau R. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy—United States, 2015. Centers for Disease Control and Prevention (CDC). Morbidity and Mortality Weekly Report. August 11, 2017;66(31):821–825. doi:10.15585/mmwr.mm6631a1.