Approximately 80 percent of people with epilepsy can effectively control their seizures through conventional treatment methods consisting of antiseizure medications and avoidance of factors that trigger seizures according to the National Institute of Neurological Disorders and Stroke (NINDS).
However, some people forget or otherwise fail to take their medications when they should, or they have difficulty identifying potential seizure triggers. Depending on the severity and frequency of these seizures, epilepsy can cause considerable disruption in a person’s life.
Some common considerations for people with epilepsy include:
- Employment restrictions. The Americans with Disabilities Act (ADA) prevents disabled individuals from being discriminated against in the workplace. However, the rules are complex and it is advised that people with epilepsy consult their physician about whether their epilepsy can be classified as a disability. In addition, some types of jobs (e.g., pilot, firefighter) may not be appropriate for those with epilepsy, regardless of how well the seizures are controlled.
- Driving restrictions. Most states have regulations that restrict driving privileges for people with epilepsy, although some exceptions may apply. Many states do not allow people with epilepsy to drive for a certain period of time (ranging from months to years) after they have had a seizure. A physician’s approval may be necessary before a person can drive again following a seizure.
- Inhibited recreation. People with epilepsy may be reluctant to participate in sports and other recreational pursuits. Most physicians agree that the benefits of social and recreational activities can outweigh the potential risks, although certain precautions should be taken in some cases.
- Sexual dysfunction. Some people with epilepsy may experience sexual dysfunction. Sexual dysfunction is defined as any problem that routinely interferes with the ability to achieve sexual gratification and may involve issues related to sexual arousal, the ability to achieve orgasm or feelings of discomfort or pain during intercourse. People with epilepsy who experience sexual dysfunction are encouraged to consult their physician to discuss possible treatment methods.
Certain populations may have additional lifestyle considerations related to their epilepsy. Women, in particular, may face special issues associated with the relationship between hormones and epilepsy. Although the true nature of this relationship is poorly understood, many women with epilepsy experience changes in the pattern or frequency of their seizures during puberty, menstruation and menopause (the end of menstruation).
Children with epilepsy should be taught how to be responsible for their seizure medications. Parents of children with epilepsy should avoid sheltering their child from normal childhood activities because doing so can negatively affect the way that the child is able to deal with epilepsy and other aspects of life into adolescence and adulthood. Additionally, elderly people may experience more severe side effects from seizure medications that can affect their ability to control their seizures and live independently.
Both patients and caregivers or family members may find it beneficial to join a support group or undergo counseling. Epilepsy can be a stressful and distressing disorder and many people find that talking to others who are going through the same experiences can be a valuable outlet for feelings of frustration or helplessness.
Managing seizures with medication
One of the most significant aspects of coping with epilepsy is the ability to manage seizures. For most people with the condition, this involves the appropriate use of seizure medications.
For seizure medications to be effective, they must be taken as prescribed. It is believed that at least 15 percent of patients with many kinds of acute (short-term) or chronic illnesses (including epilepsy) do not take their medications as instructed, according to the Epilepsy Foundation. However, other estimates indicate that as many as 50 percent of patients do not take their medications as instructed. This can significantly increase the risk of severe and unmanageable seizures.
Various methods can help patients to remember to take their seizure medications on time. Using memory aids such as a pill reminder box or calendar can help patients comply with their medication schedule. Watch alarms and other reminder devices, and medication monitoring by a trusted family member, friend or healthcare professional may also help. In addition, patients should ensure that they always have an adequate supply of medication on hand, especially if they are planning on traveling.
The goal of seizure medications is to reduce the frequency of seizures as much as possible while keeping adverse side effects to a minimum. Although most side effects are mild, some can be severe and may interfere with daily life. For example, some seizure medications may increase or depress the appetite, leading to significant weight gain or weight loss. Other medications may result in behavioral changes, mood swings or depression. It is important that patients consult their physician if they feel uncomfortable with the side effects of their medication or if usually mild side effects become more severe. A physician may be able to recommend an alternative medication with more tolerable side effects.
Some seizure medications have an increased risk of birth defects. Therefore, pregnant women may need to have their medications adjusted, ideally prior to conception. Before making any changes to their medication schedule, women with epilepsy who are considering becoming pregnant should consult their physician.
Identifying potential triggers
Another key factor in managing epilepsy is identifying and avoiding potential triggers of seizures. These are factors that are believed to increase the risk of having a seizure. It may or may not be related to the underlying cause of the epilepsy. Triggers for seizures vary from person to person, and some people may not have any identifiable triggers.
Potential triggers of seizures that patients with epilepsy may wish to avoid include:
- Lack of sleep. One of the most common triggers of seizures in patients with epilepsy is sleep deprivation, although the reason for this is unclear. The relationship between epilepsy and sleep is complex. Getting too much or too little sleep can make people more susceptible to seizures. However, getting adequate sleep can be difficult if seizures occur at night or if side effects of seizure medications cause sleep disturbances. Despite these difficulties, many people find that regulating their sleep patterns (i.e., going to sleep at the same time every night, avoiding caffeine before bedtime) helps to control their seizures.
- High stress. Stress appears to be linked to an increased likelihood of seizures in people with epilepsy, although scientists are still working to understand the nature of this relationship. When stress cannot be avoided, patients with epilepsy are advised to take certain actions that help them to relax. This may include deep breathing, massage and listening to soft music. A positive attitude and a sense of humor can also help reduce the effects of stress, and the likelihood that it may trigger seizures in people with epilepsy.
- Lack of physical activity. Regular exercise appears to lessen the incidence of seizures in patients with epilepsy. The reason for this is unclear, although it may have to do with the ability of physical fitness to improve sleep and help reduce stress. It is important to note that not all activities may be appropriate or advisable for individuals with epilepsy. For example, certain sports (e.g., swimming, mountain climbing) may be hazardous to individuals with poorly controlled seizures.
- Poor nutrition. Diet appears to play a role in triggering seizures among some patients with epilepsy. In these cases, a ketogenic (low-carbohydrate, low-protein and high-fat) diet may help, although patients should talk to their physician before making any significant changes to their diet.
- Alcohol and drugs. The amount of alcohol that can trigger a seizure may vary from person to person. Generally, people with epilepsy are advised not to consume large amounts of alcohol. However, for some people, one alcoholic drink could trigger a seizure. A more significant concern for some patients is that alcohol can interact with some types of seizure medications, making the medication ineffective or increasing its side effects. In addition, many illegal drugs (e.g., cocaine, ecstasy) lower a person’s seizure threshold, making people with epilepsy more susceptible to recurrent seizures. In some cases, seizures occur after a person stops drinking or taking drugs.
- Exposure to flickering light.A small proportion of people who have recurrent generalized seizures are particularly sensitive to light (photosensitive). Television screens, computer games and strobe lights are common sources of flickering light, although the amount of light stimulation needed to trigger a seizure can vary from person to person. Studies indicate that lights that flash between five and 30 times per second are most likely to trigger seizures in people who are photosensitive.
- Patients with photosensitivity are encouraged to be aware of any potential light triggers (e.g., a flickering light bulb over a desk) and to adjust or avoid these environments. The use of sunglasses when outdoors may help limit exposure to sunlight that may be seen as flickering as it passes over certain objects (e.g., tree branches, street signs).
- Certain physical stimuli. In some cases, certain sounds or sensations may trigger seizures in patients with epilepsy. This may include sounds such as loud ringing, some voices or certain types of music. Sudden movement, such as being jostled on an escalator, or sensations such as heat, may also sometimes provoke seizures.
- Certain hormonal activity and hormone medications. Seizures appear to occur more frequently among women with epilepsy during menstruation or ovulation. In addition, certain hormone medications may also trigger seizures.
Employment and epilepsy
One of the most important issues for many people with epilepsy is employability. Under the Americans with Disabilities Act (ADA), employers are not permitted to discriminate against qualified applicants or employees based on disability. However, the rules that govern whether an individual’s epilepsy is classified as a disability are complex.
The Equal Opportunity Employment Commission (EEOC) is the government agency that regulates and enforces the ADA. According to its guidelines, epilepsy may be classified as a disability if the condition substantially limits one or more aspects of basic daily life, such as the ability to walk, see, speak, concentrate, sleep or care for oneself. In addition, these limitations must occur despite treatment in order to prove a substantial impairment.
According to the EEOC, substantial impairment may occur as the result of seizures or due to side effects or complications of seizure medications. The impairment may exist in the present or have existed some time in the past and still be considered a disability. Also, a person’s epilepsy may be considered a disability under the ADA if it does not significantly impact daily activities, but an employer treats the person as if it does.
People are advised to consult their physician about the nature of their epilepsy and whether it may be classified as a disability. People who feel they have been discriminated against based on their condition should contact the EEOC or an advocacy group such as the Epilepsy Foundation.
For people with well-controlled seizures, there may be few limitations on the types of employment available to them. However, there are several occupations that may not be appropriate for individuals with epilepsy, regardless of how well their seizures are controlled. These occupations may include being a pilot, firefighter, emergency response staff member, or any other occupation where a momentary lapse of concentration could endanger lives.
People who are unable to control their seizures effectively may be restricted to occupations that do not involve driving or operating machinery. Those with intractable epilepsy, which does not respond to medications, may be limited to working from home or be unable to engage in employment at all.
Driving and epilepsy
Most states have regulations that restrict driving privileges for people with epilepsy. Many states do not allow people with epilepsy to drive for a certain period of time (ranging from months to years) after they have had a seizure. A physician’s approval may be necessary before a person with epilepsy can drive again following a seizure.
The amount of time it takes to fully recover from a seizure varies from person to person. However, in most cases, the longer the person waits to drive again after the seizure, the less likely they are to have an accident. One study found that people with epilepsy are over 90 percent less likely to have a seizure-related accident if they wait at least one year after their last seizure before driving again, compared to people who start driving sooner, according to the National Institute of Neurological Disorders and Stroke (NINDS). Additionally, driving may be hazardous for people who are starting a new course of medication. Therefore, driving should be avoided until the full effects of the medication (e.g. side effects, how well it controls seizures) are known.
Exceptions may be made for people who only have seizures in their sleep, who have seizures that do not impair consciousness, or who have reliable warning signs (auras) of ample length that allow them to avoid driving when a seizure is likely to occur.
People with epilepsy are encouraged to be honest when informing their state department of motor vehicles about their incidence of seizures. The risk of having an accident during a seizure must be weighed against an individual’s desire to drive. Because of the public safety issue involved, some states require physicians to report patients with epilepsy to the state.
Recreation and epilepsy
People with epilepsy may be reluctant to travel or engage in other recreational pursuits (e.g., sports) for fear that they may have a seizure. However, this fear is usually unfounded and people should consult their physician about which activities they may or may not be able to participate in.
People with epilepsy who wish to travel should ensure that they have adequate medication for the duration of the trip, along with extra medication in case of emergencies (e.g. delayed flights, transportation problems). It may also be helpful to carry identification or wear medical alert jewelry that informs others that the patient has epilepsy.
There is no evidence indicating that sports or other recreational pursuits increase the risk of seizures. Some people with epilepsy actually find that their seizure management is improved by regular exercise. Most physicians and patients feel that the social and physical benefits of sports participation are invaluable for people with epilepsy. However, it is important that the coach or other supervisory staff is informed about what action to take if a seizure occurs. Additionally, it is essential that people with epilepsy keep cool and well-hydrated during any type of physical activity, as dehydration and overheating can trigger seizures in some people.
There may be certain activities that people with epilepsy should avoid or only participate in under close supervision. This includes any type of activity in which a loss of consciousness or even a momentary loss of control of body movements may be hazardous, such as swimming, motor sports, mountain climbing, sailing or skydiving.
Sex and epilepsy
Some people with epilepsy, particularly those with partial seizures, experience sexual dysfunction. It can affect both men and women. Sexual dysfunction is defined as any problem that routinely interferes with the ability to achieve sexual gratification and may involve issues related to sexual arousal, the ability to achieve orgasm or feelings of discomfort or pain during intercourse.
Decreased sexual desire or arousal is the problem most often reported among people with epilepsy. For men, this may mean the inability to achieve or sustain an erection. For women, it may mean vaginal dryness, which can result in pain during intercourse.
Sexual dysfunction in people with epilepsy may be caused by numerous psychosocial and physiological factors, including:
- Side effects of some seizure medications
- Hormonal imbalances due to seizures or seizure medications
- Impairment of the parts of the brain associated with sex (such as the temporal or frontal lobes)
- Fears of having a seizure during intercourse
- Poor self-esteem or perceived sexual attractiveness
- Unpleasant sexual experiences in the past
Sexual dysfunction can sometimes lead to depression and increased levels of stress, which, in turn, may increase the risk of seizures in patients with epilepsy.
People with epilepsy who experience sexual dysfunction are encouraged to consult their physician to discuss possible treatment methods. In some cases, changing seizure medications may resolve the dysfunction, although this may not be recommended for people with a history of poor seizure control. Women who experience pain during intercourse may be advised to use lubricants.
If a physician determines that the cause of the sexual dysfunction is psychosocial rather than physical in nature, the patient may be referred to a sexual psychologist or a couple’s therapy program.
Special populations and epilepsy
Women with epilepsy may face additional complications because of the relationship between the female sex hormones (estrogen and progesterone) and seizures. Some girls with epilepsy find that their seizures stop or become more frequent when they enter puberty. In addition, many women experience changes in the pattern and frequency of their seizures during menstruation and menopause (the end of menstruation). This interplay between hormones and seizures can result in several lifestyle considerations related to the following:
- Birth control methods, especially the contraceptive pill
- Conception and pregnancy
- Postnatal care
Children and teenagers
A diagnosis of epilepsy may be particularly distressing for children and teenagers. It may be difficult for parents to explain to their child why the seizures are occurring, especially if a physician has had difficulty identifying their cause. It is important that parents be honest with their child about the condition and how it may affect the child’s life. Parents should encourage children with epilepsy to share their feelings, especially those experienced before, during and after a seizure. Children with epilepsy should be encouraged to report any changes in the intensity or frequency of their seizures.
Children should be allowed to take responsibility for their seizure medications as soon as possible. Although parents or guardians should monitor the child’s compliance, children who understand when and why they must take their medications are less likely to stop taking their seizure medications. This can help them control their seizures into adulthood (if necessary).
Parents of children with epilepsy should be aware of possible side effects of medications their child is taking. It is particularly important that parents be able to identify any signs of depression or anxiety, which can affect how a child is able to cope with their epilepsy throughout life.
Parents should talk with teachers, coaches and other relevant school personnel about the nature of their child’s epilepsy and what action should be taken in the event of a seizure.
Most children with epilepsy do not experience reduced intelligence or brain damage and should be able to perform most tasks requested of them at school. However, some types of seizures, especially if they are poorly controlled, may disrupt everyday learning. Parents may ask that reasonable accommodations be made for their child, such as extra time to complete tests or extra help to enable them to catch up after absences.
Although parents should ensure that their child is safe to the best of their ability, it is important for the child to be allowed to participate in activities with peers. Children with epilepsy should be under close supervision whenever swimming or playing around water, and should never be allowed to swim alone. However, most children with epilepsy can participate in team sports, including football, basketball and baseball.
Parents of children with epilepsy may have a tendency to overprotect their child. However, this type of parenting can cause difficulties later in life. Children who are sheltered from normal childhood experiences may grow up to be withdrawn and shy. It may affect their relationships as they develop into teenagers and adults as well as their employment prospects. The effects of a sheltered childhood are often experienced well into adulthood and may sometimes be felt after seizures have stopped.
Some treatment methods used primarily on children involve significant lifestyle changes. For example, there is evidence that a diet that is low in carbohydrates and protein but high in fat may help control seizures in children who have not responded well to medication. This type of diet, called a ketogenic diet, forces the body to enter a state called ketosis where it burns mostly fat to function. This mimics the process of starvation, which is thought to affect brain activity. However, it is not fully understood why or how the ketogenic diet works to control seizures in some children. The effectiveness of the diet among adults is unknown.
Parents who choose to place their child on the ketogenic diet must carefully construct meals that provide the correct proportion of fats, carbohydrates and protein. This involves precisely weighing or measuring food and drinks using a gram scale and restricting certain foods, such as those that contain sugar. Although this type of diet has been shown to be beneficial in controlling seizures, parents of children with epilepsy should consult their child’s physician about the potential side effects of the diet, which may include malnutrition, physical development problems, kidney stones and increased seizures if the diet is not precisely followed. The ketogenic diet should only be followed under the supervision of a physician familiar with the diet.
Elderly people usually develop epilepsy as a result of brain damage sustained later in life. The most common causes of new onset epilepsy in elderly people are conditions that deprive the brain of oxygen (such as a stroke or heart attack). These cerebrovascular events are believed to account for over 30 percent of new cases of epilepsy in elderly people, according to the National Institute of Neurological Disorders and Stroke (NINDS). Additionally, conditions that cause degeneration of the brain, such as Alzheimer’s disease, brain tumors or infections that affect the brain (e.g., meningitis) may lead to epilepsy.
Lifestyle considerations are complex for elderly people with epilepsy. This is because epilepsy is likely to be just one of several medical conditions an elderly person may have, making them even more susceptible to adverse interactions and/or side effects. For example, elderly people are more likely to experience side effects of seizure medications that include confusion, unsteadiness and fatigue. This may be due to adverse interactions between seizure medications and other medications they are taking. It may also be because seizure medications do not pass as quickly through the bodies of elderly patients as they do in younger patients. This can make it difficult for elderly people to control their seizures, which can hinder their ability to live independently.
Additionally, some of the natural effects of aging can make it hard to control seizures. For example, elderly people who experience memory loss may have trouble remembering whether they have taken their seizure medication. Also, elderly people may have problems establishing regular sleep schedules as their need for sleep changes.
Elderly people with epilepsy may be able to reduce the risk of seizure-related accidents and live independently for longer by taking certain steps to ensure that they are safe in their homes. These steps may include avoiding sources of heat, such as a stovetop, iron or heater with exposed heating elements or that can be tipped over. Instead, elderly people with epilepsy should use the microwave oven for cooking or boiling water. They should also avoid anything that may be dangerous if a person temporary loses control of their muscles (e.g., electric knives). Elderly patients with epilepsy should avoid smoking (to prevent a fire) or bathing in high levels of water (to prevent accidental drowning).
Elderly people with epilepsy can avoid injuries by installing carpet over wood or tile floors and by covering hard furniture with padding. Living in a home without stairs also helps avoid accidents that may occur in elderly people with epilepsy. Portable phones or beepers may make it easier to call for help from any area of the home.
Driving skills tend to decline with age. Elderly people with epilepsy and poorly controlled seizures may be even more likely to cause vehicular accidents than those without the condition, and therefore may benefit from public transportation or other forms of assistance.
Questions for your doctor
Preparing questions in advance can help patients to have more meaningful discussions with healthcare professionals regarding their condition and how it may affect their lifestyle. Patients may wish to ask their doctor the following questions:
- How will my epilepsy interfere with my day-to-day life?
- How do I find out what triggers my seizures?
- Will I have to avoid alcohol forever?
- Will I be able to drive?
- Will I be able to play sports?
- Could my epilepsy be classified as a disability under the Americans with Disabilities Act?
- I have difficulty becoming sexually aroused. Could this be because of my seizure medication?
- How will I know if I should I change my medication?
- Are there any activities that my child with epilepsy should not participate in?
- Could the ketogenic diet help control seizures?