Adults with Epilepsy
WebEase (Web Epilepsy, Awareness, Support and Education) is an interactive, on-line self-management program for people with epilepsy. The goal of WebEase is to support and foster the management of epilepsy by people with epilepsy. WebEase was developed by a team of Emory University researchers and physicians who treat patients with epilepsy. (From Epilepsy.com)
WebEase is different from other Epilepsy websites because it does not tell you what you should do. Rather, it guides you to think about what is important to you in managing your epilepsy through taking medications, managing stress and getting a good night’s sleep. WebEase encourages you to make decisions that are consistent with your own goals:
The program consists of three interactive modules—medication taking, stress and sleep management. Each module lets you read information, respond to questions, receive feedback, and watch and listen to testimonials. You also learn helpful strategies to improve your epilepsy self-management and set goals personalized to meet your needs and concerns.
WebEase also includes MyLog, an online personal journal you can use to track your seizures, medication, stress and sleep patterns and receive personalized feedback about how your medication taking, stress, and sleep may affect your epilepsy.
WebEase is for anyone living with epilepsy and who is interested in improving their self-management skills regardless of where they are in life, or how long they have lived with epilepsy. WebEase will be particularly helpful for those who have been recently diagnosed with epilepsy, or for those who are struggling with managing their medication taking, reducing their stress levels and improving their sleep.
Because WebEase adapts to your needs, each WebEase module can be taken multiple times and support you in your personal journey to improve your epilepsy self-management at times when you need it most.
This program was made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-01. Its content are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.
Texting 4 Control is a texting initiative from the Epilepsy Foundation and Care Epilepsy to assist in seizure management. It is for you if you are trying to take better care of yourself, but you sometimes forget to take your medications. It is for you, if you want to be able to track your seizures in a patient diary and send it to your neurologist. It is for you, if you need some motivation to get through your day. Texting 4 Control is a new system targeted to users aged 13 and older with mobile phones that allows you to:
Sign up for the Texting 4 Control system here!
Texting 4 Control is made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-02. Its content are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.
PEARLS for Adults with Epilepsy is a home-based treatment program for adults with epilepsy and major, minor, or chronic depression. The method is designed to reduce depressive symptoms and improve quality of life during 6 to 8 sessions that take place in the client’s home and focus on brief behavioral techniques. PEARLS Program counselors empower people to take action and make lasting changes so that they can lead more active and rewarding lives.
People with epilepsy are more likely to be depressed than people without epilepsy. In fact, studies have shown that between 32-48% of people with epilepsy experience significant symptoms of depression.
In order to become a counselor, you will need complete PEARLS training which is offered throughout the year in Seattle, WA or training can be brought to you. Those who can benefit from the training include the organizational leadership, the future PEARLS program manager, the future PEARLS counselor, and the clinical supervisor of your organization. Continuing education units are available. To find out more, visit the PEARLS website.
Contact Help@EndEpilepsy.org to find out about PEARLS services in your area.
The Managing Epilepsy Well Network is funded by the CDC and is supported by special interest project (SIP) 05-07, SIP 07-06, SIP 06-07, SIP 01-08 and SIP 09-11, and Cooperative Agreement Numbers U4 DP000043, U48DP000050, U48DP001901, U48DP001949, 1U48-DP001909.
Project UPLIFT for Epilepsy is an internet and telephone program using cognitive behavioral therapy and mindfulness to treat depression in people with epilepsy.
Depression is one of the most common psychiatric disorders among people with epilepsy. A review of studies shows that between 32-48% of people living with epilepsy also suffer from depression, impacting quality of life and family functioning more even than seizure frequency. Project UPLIFT was created to help people better understand and cope with depression.
Project UPLIFT is a home-based program provided by a mental health professional who has completed a ten-week training course.
The MEW is funded by the CDC and is supported by special interest project (SIP) 05-07, SIP 07-06, SIP 06-07, SIP 01-08 and SIP 09-11, and Cooperative Agreement Numbers U4 DP000043, U48DP000050, U48DP001901, U48DP001949, 1U48-DP001909.
Yes, if your seizures are controlled with treatment and you meet the licensing requirements for driving privileges in your state.
How long you have to be free of seizures varies in different states, but it’s most likely to be between three months and a year. Some states don’t count seizures that only take place during sleep, don’t impair consciousness (commonly called auras), or are preceded by a very long warning.
When you apply for a license, some states may require your doctor to send a letter to the Department of Motor Vehicles stating you are free of seizures and, in his or her opinion, can therefore drive safely if you meet your state’s other driving requirements. A few states require doctors to report people who have lapses of consciousness to the state. The Epilepsy Foundation opposes this regulation because it is not effective and interferes with the doctor-patient relationship. If your state has such a requirement, you may wish to ask your legislator to get it removed.
To help you find out what the rules are about epilepsy and driving in your state, we have provided a state-by-state listing.
Driving is a privilege with serious responsibility. You can help protect yourself and others as follows:
Alternatives to driving oneself include: public transportation, car pools, taxis, and special programs offering transportation to people whose disabilities make it impossible to drive.
There will also be times when you simply have to ask someone for a ride. If you are frequently dependent on certain people to provide transportation, see if there is some service you can perform in return so you will feel more comfortable about accepting their help.
Yes, if you are not having any seizures that make you black out or lose control of what you’re doing. How long you have to be seizure-free before you can drive depends on which state you are living in. The time ranges from three months to a year. You also have to make a real commitment to take your meds every day, on time, so you don’t risk having a seizure on the road.
I’ve had a couple of seizures but I don’t want to tell my doctor because I’m afraid I’ll lose my license.
If you don’t tell the doctor, you’re missing a chance to adjust your meds so you won’t have more seizures. The bigger risk is that you’ll have a seizure while driving. While it’s tough not being able to drive for a while, you don’t want to risk having a bad accident that hurts you or someone else.
Yes. Once you have been seizure – free (really seizure – free) for however long your state requires, you can re-apply and get your license back.
Our organization has longstanding opposition to Mandatory Physician Reporting, a law which exists in California and only a few other states. Mandatory. Mandatory reporting can destroy the doctor-patient relationship. In many cases, those who believe that they “must” drive will lie to the doctor about their condition in order to avoid mandatory reporting and potential loss of the driver’s license. This is the worst of both worlds: the person is not receiving the best medical care and is driving. If the doctor and patient can work together, the seizures are likely to be better controlled, and the person can drive more safely (Angela Ostrom, Epilepsy Foundation).
The American Academy of Neurologyposition statement is very informative, and shows that the Academy promotes voluntary reporting; this supports patient-physician relationship, and the individual assessment of driving capacity.
While the confidential nature of the physician-patient relationship is of the utmost importance, there are circumstances in which the physician’s obligation to his patient may be suspended. For example, physicians always retain the right to report patients they believe pose an imminent danger to the public.
Some state statutes specifically mention that physicians may voluntarily report persons whose condition would affect their ability to drive safely. Some specifically provide that physicians who report in good faith and exercise due care are immune from liability for their actions. Even when this is not explicitly provided for by law, courts generally find that physicians who exercise reasonable care in making these reports are immune from liability for their actions.
A number of state laws specifically give physicians immunity for their opinions and recommendations to the state DMV. Some provide “good faith” immunity and others provide immunity from suit.
Few reported cases exist on the issue of physician liability to third parties for certifying a patient to drive. Those cases which have been brought suggest that the risk of liability is minimal.
Physicians should not be liable for their recommendations to the state DMV as long as their recommendations were arrived at in a reasonable manner, consistent with the prevailing standard of care. Some courts have refused to allow these cases to go forward for public policy reasons.
Some state laws provide protection by prohibiting the use of the physician’s report in court proceedings other than those for the purpose of determining whether the patient should be licensed. Certain other state laws specifically grant “good faith” immunity to physicians.
Physicians should provide the warnings and advice that are required under prevailing standards of care. Patients who should not be driving or who should be driving only under certain circumstances should be so advised in writing. The physician should prepare a standard letter (or a form providing for specific variations) and, as a regular course of procedure, send it as a follow-up to the patient and “log” its dispatch. Patients should be warned of possible side effects of medications in connection with driving, the possible effect of discontinuing or reducing dosage of a drug, and any other warnings or advice that would normally be given. If the state has an explicit self-reporting requirement the physician should, as a precaution, call it to the patient’s attention.
As long as the physician is using reasonable medical judgment and uses proper documentation, a third-party suit should not result in liability. In some jurisdictions, such a case will be immediately dismissed. If a physician has specific concerns, however, (such as a patient who is driving against medical advice) the physician may want to consult with an attorney.
Six states — California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania — currently have express mandatory physician reporting requirements. While the exact terms of these provisions vary, they generally state that any physician who diagnoses or treats a person with epilepsy must report that person’s name, age, and address to a central state agency, usually the Department of Motor Vehicles or Department of Public Safety.
The variations in the requirements generally involve the circumstances under which persons must be reported, such as all persons with epilepsy, or only those whose condition interferes with their ability to drive, whether the intended use of the information is specified, and the penalty, if any, for failing to report. Monetary fines are the most common penalty for failure to report; however, Pennsylvania’s law also states that a physician could be found negligent for failing to report a driver who was later in an accident.
People with epilepsy may not be able to drive or may have restricted licenses, making it difficult getting to necessary places. Not driving may limit their ability to work, to get out in the community, or to get to appointments. Public transportation may help; however, it is not always accessible or appropriate.
The Los Angeles Metro has tools to help you get around the city! Enter your travel information in the Trip Planner below and you’ll get a customized itinerary in seconds, telling you what line to take, where to catch it, where to exit and what it costs.
Go Metro Destinations Guide.
From theme parks to concert halls, from arenas to museums, you can reach LA’s best attractions on Metro. The Metro Destinations Guide highlights points of interest near Metro stations.
Have Metro Questions?
Have questions or need more help? Speak to a Metro’s Customer Information Agent at 323.GO.METRO (323.466.3876) available 6:30am – 7pm (Mon-Fri) and 8:00am – 4:30pm (Sat/Sun). Please note that you may have to wait for the next available agent.
Access is the service name of the ADA Complementary Paratransit service for functionally disabled individuals in Los Angeles County. Access transportation service is available for any ADA paratransit eligible individual to any location within ¾ of a mile of any fixed bus operated by the Los Angeles County public fixed route bus operators and within ¾ of a mile around METRO Rail stations during the hours that the systems are operational. Complementary paratransit service is not required to complement commuter rail and commuter bus services, since the ADA does not require that these services provide complementary paratransit service. The service area is divided into service areas and extends into portions of the surrounding counties of San Bernardino, Orange and Ventura that are served by Los Angeles County Fixed-route bus lines.
For more information about Access, visit their website: AccessLA.org
People with epilepsy can face significant challenges in the workplace, and many advocacy efforts are underway to increase the employment and success rates for people with epilepsy in the workplace. The Americans with Disabilities Act was enacted to prohibit disability-based discrimination. Many provisions of the ADA have particular impact on people with epilepsy, including inclusion for safety-sensitive jobs and reasonable accommodation.
How does one decide whether or not to disclose or talk about living with epilepsy to an interviewer and/or employer? This is a decision that requires some real thinking. Considering in advance the issues and risks involved in disclosing your epilepsy will help you to be prepared to respond appropriately.
If the employer is covered by the ADA or Rehabilitation Act the request for information is voluntary. If covered by a state law, such questions may be legal.
The federal government offers financial assistance and health insurance to people with epilepsy who qualify. The two primary financial assistance programs are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). These programs are administered by the Social Security Administration (SSA). The two primary health insurance programs are Medicaid and Medicare. These programs are administered by the Centers for Medicare and Medicaid Services. States may also provide medical and financial assistance.
Pregnancy, hormones and breastfeeding are all issues that continue to arise for women with epilepsy. Below are some resources to help empower YOU to ensure your safety and the safety of your family.
Some people with epilepsy hide their condition, but this can lead to feelings of isolation, helplessness, and even depression. Speaking up and talking about epilepsy erases some of the anxiety and alleviates many of these feelings. The depression itself may or may not be linked to epilepsy. Below are some of the factors that influence depression in people with epilepsy.
For some, the mood disorder may be associated with the seizure itself. Mood changes may occur before, during or after a seizure. In others, mood changes are not related to the timing of a seizure, but relate to where the seizure is coming from in the brain.
A seizure that comes from an emotional center in the brain may be more likely to produce a change in mood.
Frequency of seizures. People who have seizures frequently may be more likely to feel depressed than people who have well-controlled seizures. In some instances, the side effects of treatment, such as use of antiepileptic drugs, may affect mood. If this happens, a change of treatment may help.
Lifestyle risk factors. In one study, four factors were linked to depression: poor adjustment to seizures, increases in stressful life events, financial stress and being a woman. Also, people who feel “controlled” by their epilepsy and feel that it dominates their lives may be more susceptible to mood disorders.
Managing Seizure Triggers: Tips for Lifestyle Modification, Source: Epilepsy Foundation of America, Adapted from the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, Boston, MA and the journal “Clinical Nursing Practice in Epilepsy”, Spring 1994.
Developing plans to modify your lifestyle is an important part of seizure preparedness. It’s a way that you, as a person with seizures or a parent of a child with seizures, can take charge and play an active role in your epilepsy care.
The following tips are examples of what people can do to manage triggers. Some of these tips may require a change in behavior, others may be ways to adjust your environment or schedule so not everything happens at once. Before choosing tips to try, make sure you’ve assessed your situation and talked to your doctor and other health care professionals for their suggestions too. Please note that research on the effectiveness of many of these techniques is limited. Many of these tips are common sense suggestions or are from health care professionals and people with epilepsy as to what they have seen and tried.
People who think they are affected by noises should be sure to talk to their doctor about whether they have a form of ‘reflex epilepsy’ or if general noise or distraction may be a trigger in another way. People with true reflex epilepsy may respond to specific seizure medicines and should talk to their doctor. Try using earplugs or earphones, especially in noisy or crowded places. Try listening to relaxing music or sounds, or try distracting yourself by singing or focusing on another activity.
Use polarized or tinted glasses. Use natural lighting when indoors. Focus on distant objects when riding in a car to avoid flickering lights or patterns. Avoid discos, strobe lights or flashing bulbs on holiday decorations. Use computer monitor with minimal contrast glare or use a screen filter. Consult with your doctor about other specific recommendations for computer use.
Try to regulate sleeping habits so you have a consistent schedule and get enough sleep. Keep a log or diary of your sleep patterns, seizures and general well‐being. Ask a partner or companion to record his or her observations too. Consider the following ideas to improve sleep.
Regular exercise is good for everyone. Pace your exercise to avoid getting too tired or hyperventilation. Avoid exercising in the middle of the day during hot weather. Ask your doctor about any specific exercises you may need to avoid.
Try relaxation or slow breathing exercises when anxious or if you begin to hyperventilate. Pace your activity and avoid sports that may trigger hyperventilation.
Regulate meal times and patterns around sleep, activity, and medication schedules. Usually taking medicines after food or around meals makes it easier to remember them and may lessen any stomach distress from side effects of medicines. Have a well‐balanced diet and eat at consistent times to avoid long periods without food. If your appetite is poor, try small frequent meals instead of skipping meals. Avoid foods and drinks that may aggravate seizures. Not everyone is sensitive to foods, but if you are, talk to your doctor about how to modify your diet. If you are following a diet specifically for your epilepsy, be sure to follow the advice of your doctor and nutritionist.
Avoid recreational drugs and talk to your doctor about use of alcohol. Avoid alcohol completely if you’re going through high‐risk times or have recently had surgery. If you choose to drink alcohol, use ‘moderation’, drink slowly, and have only one or two glasses at a time. Consider carefully what you drink, avoiding ‘hard liquor’ or mixed drinks that may have high alcohol content. If alcohol and drugs are a problem for you, talk to your doctor and get professional help.
Both men and women may notice a cyclical pattern to their seizures. Record seizures on a calendar and track them in relation to any changes in hormones. Women who are having menstrual cycles should track their cycle days. Women who have stopped having their menses should track other symptoms or changes, while women who are pregnant should track their pregnancy too. The use of hormonal medicines, such as contraceptives or birth control pills as well as hormonal replacement therapy, may affect seizures in some women, so record the dates and doses of these medicines. NOTE: some seizure medicines may interfere with the effectiveness of hormonal contraceptives making unexpected or unplanned pregnancy more likely. Be sure to talk to your doctor about all contraceptive use.
When seizures cluster around menses or hormone changes, women should try to modify their lifestyle so other triggers don’t occur during this high‐risk time. Some women may use ‘as needed’ medicines to help treat seizures associated with menses. Note the use of these on your calendars and seizure preparedness plan.
Notify your doctor if you become ill, have a fever, injure yourself seriously, or need other medicines such as antibiotics, painkillers, or cold medicines. Some people may notice that certain medicines can trigger seizures or interfere with seizure medicines. Fevers, other illnesses and injuries may also make you more susceptible and you’ll need to monitor your seizures carefully. Try to limit other triggers during these times and talk to your doctor about what medicines you can use.
Emotional stress is a common trigger for some people, and stress can be a cause and symptom of mood problems such as anxiety and depression. Track your stress level and mood in relation to your seizures on your diary. During stressful times, consider ways to modify your lifestyle and manage stress better.