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Practical Implications of Epilepsy

Learning to live with epilepsy requires a balance between caution and determination, realistic expectations and optimism. The good news is that with expert monitoring and good control, many people with epilepsy lead robust, normal lives. Thanks to the Epilepsy Program at The Alan and Barbara Mirken Department of Neurology at Mount Sinai Beth Israel, you have access to the most up-to-date diagnostic tools and methods, and medical and surgical treatments available, as well as the latest approaches to lifestyle support.

If your seizures are under control or you have infrequent, mostly simple partial seizures, you may be able to enjoy very little limitations in your daily activities. If your seizures are frequent and involve impairment or confusion, your and the epilepsy team's challenge will be to plot a safe, but fulfilling life with some restrictions. These restrictions may eventually be lifted when you and your doctors find an optimum plan for your seizure control.

Whatever your seizure-control status, here is a brief overview of some practical implications and ways you can work with the epilepsy team to live well with epilepsy:

Treatment Choices and Lifestyle
While seizure control is the ultimate goal in epilepsy treatment, some patients opt for slightly less control so that they may also lessen their medication's side effects. Discuss your priorities with the epilepsy team, as well as your lifestyle, aspirations, and responsibilities with work, school and family. With a clear understanding of the many factors in your life, the epilepsy team can strive to balance your seizure control with your side effects. You and the epilepsy team will also keep an attentive watch on your mental well being, always on the lookout for depression and anxiety, which often are consequences of coping with a chronic condition, but are also usually treatable when recognized.

As your treatment plan is being developed or fine-tuned, keep the lines of communication open with the epilepsy team, sharing your concerns, observations and questions. The epilepsy team is dedicated to working with you to reach realistic outcomes.

Disclosure
Whom do you tell? What will your telling involve or result in? Every person with epilepsy faces this question in every single social encounter. The epilepsy team can help you make disclosure choices that are comfortable and practical for you.

From purely a safety point of view, someone needs to know. For most people with epilepsy that someone (or more than one person) is a family member. Everyone in the family can learn about the facts of epilepsy, how to help in the event of a seizure, and how their observations can help you and your doctors understand more about your condition. If you are having trouble disclosing to close family members or if you are not being supported by their reactions after disclosure, the epilepsy team can recommend a family counselor for advice, intervention and facilitation, as well as provide family members with education.

It's your choice about disclosing to other people in your life, whether they be friends, distant relatives, or colleagues at work or school. Many people with infrequent or well-controlled seizures choose to only disclose when their relations become quite close. If your seizures are uncontrolled or frequent, however, you may find it more practical to tell those who may witness these seizures so they can help you stay safe and so that they are not frightened. Here are some tips to help you make decisions about disclosure:

  • Whether you disclose or not, do not feel ashamed of your diagnosis. Epilepsy is a disease and no disease should speak to your basic self.

  • Work with those who are supportive and seek the intervention of the epilepsy team's social workers and psychologists to gain and maintain a positive self-esteem and optimistic outlook. Your tone will often dictate people's reactions.

  • Emphasize to yourself and those who know about your diagnosis what you can do rather than what you cannot.

  • Consider telling people in person so that you can monitor their reactions and be ready to answer their questions.

  • When you do disclose, be honest and straightforward and allow the other person time to react and adjust to the news.

  • Once you disclose, do not allow epilepsy to be the focus of every encounter. Just as disease should not define a person, it should also not define a relationship.

Sexuality, Marriage, Pregnancy and Parenting
Under the best of circumstances there is no trickier relationship to navigate than that of a romance! For people with epilepsy, worries about when and if to disclose may complicate dating and may lead to fear of intimate contact or commitment. Medications can affect sexual interest and function and, in some cases, fertility.

Nevertheless, many people with epilepsy socialize, date, and build and enjoy healthy, long-term relationships. People with epilepsy marry, have children and successfully manage the normal ups and downs of family life. Here are a few points to keep in mind as you navigate the world of intimate relationships:

  • Weigh the pros and cons of disclosing to casual dates. It may not be necessary to bring up the subject in a relationship that will not materialize.

  • Work closely with the epilepsy team to find the balance of treatments that will control your seizures but also minimize side effects that can affect your ability to date and enjoy sexual relationships.

  • The epilepsy team can provide counseling to help you negotiate dating and sexual relationships. They can also provide you referral to couples counseling, if necessary, for those who are in a committed relationship, are discussing marriage, or who are married.

  • The majority of pregnant women with epilepsy deliver healthy, normal children. You may, however, have to tweak your medications if you are planning a pregnancy or become pregnant. In general, it's recommended that you take medications during pregnancy rather than have many seizures. Therefore, you, your obstetrician and the epilepsy team will need to carefully calibrate how you can get good seizure control with the fewest medications and the lowest doses possible.

  • If you are planning to breastfeed, discuss this with the epilepsy team early in the pregnancy to plan your postpartum medication regime. You will also need to alert your pediatrician to your medications, so that your baby can be closely monitored.

Driving and Activities that Require Caution
People who have well-controlled seizures will probably find that there is a reasonable range of "risky" activities they can enjoy, especially if they take extra precautions, for instance, always wearing a helmet while biking, or cycling on sidewalks or designated bike paths only. You and the epilepsy team should carefully evaluate all activities that require caution, such as sports or using certain tools.

Driving is no exception, except that State law has something to say about it, too. All states have different laws that dictate if and when you can drive with epilepsy. In New York State, for instance, you are allowed to drive if you have been seizure-free for one year. Even if the State allows you to drive, discuss the feasibility of your ability to drive safely with the epilepsy team.

Transportation
If you cannot or decide not to drive, you will face the challenge of finding transportation. Thoroughly investigate your town's public transportation options and ask family and friends about driving you to appointments. If you are planning to move, explore communities with good public transportation or try to find jobs and schools within walking distance of your housing. The epilepsy team's social workers may be able to facilitate other transportation resources for you, as well.

Work, School and Discrimination
Despite advances in treatment and a more educated understanding of how people can live well with chronic disease, people with epilepsy often confront prejudice and ignorance in the public spheres of work and school. On a practical level, epilepsy may preclude you from doing certain occupations. Despite reasonable restrictions or outdated notions, there is still a world of opportunity for those with epilepsy. Here is some advice to help you feel comfortable and operate effectively in your public roles:

  • Look into vocational or career counseling to carefully evaluate your skills and which jobs are best suited for you if you have limitations due to your epilepsy.

  • Again, consider when to disclose, who to disclose to and how your own levels of self-esteem and optimism often set the tone for how people and institutions react to your disclosure. If you focus on all you can do and not what you can't, your co-workers and peers are more likely to follow suit. As long as you can do your duties as an employee and/or student, your epilepsy need not be the ultimate characteristic of your time at work or school.

  • In choosing how to disclose, plan for your safety. Someone in the institution may need to know about your condition and how to respond in the event of a seizure.

  • If you have widely disclosed, consider inviting an educational speaker to address others in the workplace or at school about epilepsy or have informative literature at the ready for those who have questions. The epilepsy team can provide you with contacts and resources.

  • Talk to your Human Resources department at work or the school's guidance counselor or student services if you feel you need help in dealing with people's discomfort.

  • The Americans with Disabilities Act makes discrimination against people with disabilities illegal. The law applies to employment and access to public places. If you feel you are being illegally discriminated against, fired or demoted because of your epilepsy, you can take legal action. Talk to a lawyer about the appropriate steps.
First Aid
The epilepsy team strongly recommends that you carry identification and/or wear a medical alert bracelet or necklace that informs people you have epilepsy. There have been incidents of people with epilepsy who have become unconscious or confused during a seizure, but have been mistaken as belligerent or under the influence of drugs. Proper identification will also help you get the first aid and medical intervention you may need in the event you have a seizure in a public place in which you are anonymous.

Even if your seizures are well controlled, you need to tell those who are often around you how to take care of you in the event of one. We encourage you to share this first-aid primer:

If you witness a person having an epilepsy seizure that is notable for blank staring, confusion, unresponsiveness and random movements, you should:

  • Stay with the person, speak quietly and calmly and let the seizure take its course. It will more than likely only last a few seconds to a few minutes at most.

  • Move dangerous objects out of the way or gently steer the person away from such objects.

  • DO NOT restrain the person.

  • Stay with the person until the person is aware of his or her surroundings.

  • If you do not know the person, share your name and contact information with him or her so that you can be reached should the person and or a doctor need more information.

If you witness a person having an epilepsy seizure that is notable for its convulsions (falling, stiffening, jerking) and unconsciousness, you should:

  • Gently catch the person if possible, and bring him or her slowly down to rest.

  • Make sure there are no sharp objects nearby.

  • Put something soft like a jacket or pillow under the head.

  • Turn him or her on his or her side so that the tongue or excess saliva does not gather at the back of the throat. DO NOT put anything in the mouth.

  • Observe the seizure if possible so that you can report the event's details to medical personnel or the doctor. Anecdotal observations can provide important clues to a person's condition.

  • If the seizure lasts more than five minutes, call 911 for emergency help.

  • If you do not know the person, share your name and contact information with emergency personnel so that you can be reached should the person and or a doctor need more information.

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