Coping With Epilepsy

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Learning how to cope with epilepsy is just as important as your treatment. Having epilepsy will affect your daily life to some degree, and being aware of things like its emotional impact, work challenges, safety concerns, and more can help you better manage your condition and everyday living. Everyone copes differently and may have varying levels of needs. Use these strategies to figure out what's best for you and enlist the help of others as you work to employ them.

Emotional

Being diagnosed with epilepsy can be devastating because of the altered road you know is ahead. Not only does this condition affect you physically through seizures, it can also affect you emotionally, leading to feelings of grief, sadness, or even anger.

While it might be tempting to avoid learning about your epilepsy, 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. Verywell and the Epilepsy Foundation's website are great places to start.

Know, too, that 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.

Epilepsy can be a bumpy journey, and it's important that you have a doctor you're comfortable with and who understands the emotional highs and lows you'll experience. If you can't say that about yours, it might be time to find a new one. You are likely going to see this person quite often for the foreseeable future, so 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 and leave you feeling more confident.

Physical

Epilepsy may affect physical aspects of your life such as sleep and exercise. 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 never skip a dose because this could mean a loss of control over your seizures. Likewise, you should never stop taking your medication altogether without your doctor's approval and supervision, as this can lead to serious complications and even death.

If the side effects from your medication become very bothersome, or your prescription is not controlling your seizures completely, discuss this with your healthcare provider. He or she 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.

Unless your neurologist specifically states that you should not take your medication before a surgery, seizure medications should be continued with a small sip of water.

Since strict adherence to your medication regimen is an absolute necessity, it may be helpful to keep these tips in mind:

  • Purchase an inexpensive pill organizer at a pharmacy, but only take what you need for the week out of the original containers. This not only helps simplify things when it's time to get a refill, but it gives you something to reference if you're not sure what's what. 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 gives you a visual reminder of whether you have taken your medication or not.
  • Set an alarm on your watch or smartphone to remind you to take your medicine, or consider using a medication-related app. Don't be afraid to enlist someone such as a partner or friend to remind you as well, at least early on.
  • If you are unable to afford your medication, talk to your doctor. 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). If you're planning a trip, talk to your pharmacist well ahead of time; he or she may be able to work with your insurance company to grant an exception for an early refill or arrange for the filling of your prescription at another pharmacy location.

    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 cause you to wake up frequently and only get fragmented light sleep. This can result in daytime sleepiness. 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 as well 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

    In the past, people with epilepsy often weren't allowed to participate in sports. But exercise is so beneficial for epilepsy that this should be encouraged. Choosing activities wisely, however, is important.

    To that end, the International League Against Epilepsy (ILAE) came up with suggestions for people of all ages to help medical professionals who care for people with epilepsy. Activities and sports are divided into three categories based on risk and suggestions are made as to which categories are permitted in relation to seizure frequency and type.

    Talk to your doctor about what activities and sports are right for you and your condition, and be sure to have an open conversation with coaches about your situation and safety measures, should you have a seizure when participating.

    Social

    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 contact your local Epilepsy Foundation affiliate, which is a wonderful resource for information, support, and education.

    Your loved ones are also important allies. 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—advice you can share with those you spend significant amounts of time with:

    • 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 of any kind 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

    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, this is only the case for about 3 percent of people with epilepsy. Known as photosensitive epilepsy, this 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.

    For people who have photosensitive epilepsy, it usually takes the right combination of specific factors to cause a seizure: a certain level of brightness, the speed of light flashing, the wavelength of light, distance from the light, and the contrast between the background and the light source. Staying away from strobe lights, sitting at least two 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.

    Exposure to these stimuli doesn't cause photosensitive epilepsy to develop. Either someone has this sensitivity or they don't.

    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 enrolled at some point. However, 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 autism, learning disabilities, or mood disorders, each child faces unique challenges. In a school setting, a child's needs fall under three categories, including:

    • Medical: 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, he or she will be your source and need to be kept in the know about everything related to your child's case, from potential medication side effects to stressors that may trigger a seizure. Your child's teachers may also need to be trained in handling a seizure. Talking to the school administration, the school nurse, and your child's educators about a seizure response plan before school starts for the year is a good idea.
    • Academic: 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. 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 be designed to meet his or her specific needs. 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, either because of epilepsy itself or coexisting conditions like mood disorders or autism. Peers may not understand epilepsy and be afraid of it. Participating in certain activities may not be possible 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 social challenges by putting accommodations in place for your child to participate in activities and events. Working on social skills may also be beneficial.

    Home Safety

    When you have epilepsy, especially if you have difficulty managing it, it's important to think about making your home a safe place in the event that you have a seizure. The kind of modifications you make will depend on what kind of seizures you have, how often you have them, whether or not they're controlled, and possibly your age.

    Here are some tips to help make your home and daily activities safer:

    • Take showers instead of baths. Because of the potential of having a seizure anywhere, anytime, people with epilepsy have a much higher risk of drowning while swimming or bathing than others. If your child has epilepsy and he or she is too young for a shower, make sure you always stay with him or her during bath time.
    • Talk or sing while you're in the shower so the people who live with you know you're OK.
    • Hang the door on your bathroom so that it swings out. This way, if you have a seizure while you're in the bathroom, someone can get in to help even if you are blocking the door.
    • Instead of locking the door, use a sign to show the bathroom is occupied.
    • Use non-slip strips in the bottom of your tub.
    • Place a rail in the tub or shower.
    • Use a shower curtain instead of a shower door. This makes it much easier for someone else to get in to help you if needed.
    • If you have frequent seizures or your seizures tend to cause you to fall, sit in the tub or use a shower chair with a handheld showerhead.
    • Get rid of clutter around your house. The more stuff you have around, the more likely it is that you'll get hurt if you have a seizure.
    • Use protective padding or covers on any sharp edges or corners. Anchor heavy items that could fall and hurt you if you bump them, like TVs, computers, and bookcases.
    • If you live alone, consider a medic alert system so you can get help if you need it.
    • Look around each room to see what could potentially be harmful if you or your child have a seizure there. If you need help with this, talk to your doctor about potential resources.

    Write It Down

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

    • 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.
    • Keep a pen and a piece of paper nearby or in your pocket or purse to jot down/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.

    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.

    There are some good reasons to disclose your epilepsy to your employer, and there are also some good reasons not to. This is a personal decision, not a requirement.

    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.

    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 in the event a seizure occurs while you are on the job. You can also look into working from home instead.

    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 others may require the approval of a healthcare provider in order to allow you to drive.

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