![]() |
| HOME | DISEASES & CONDITIONS | VIDEOS | FORUMS & CHAT | RESOURCE DIRECTORY | JOIN HEALINGWELL |
| NEWSLETTER | DONATE | BOOKSTORE | HW SHOP | ADVERTISE | ABOUT US | EMAIL | SEARCH |
|
|
Epilepsy & Seizures: Hope Through Research, Part IIHow Does Epilepsy Affect Daily Life?Most people with epilepsy lead outwardly normal lives. Approximately 80 percent can be significantly helped by modern therapies, and some may go months or years between seizures. However, epilepsy can and does affect daily life for people with epilepsy, their families, and their friends. People with severe seizures that resist treatment have, on average, a shorter life expectancy and an increased risk of cognitive impairment, particularly if the seizures developed in early childhood. These impairments may be related to the underlying conditions that cause epilepsy or to epilepsy treatment rather than the epilepsy itself. Behavior and Emotions It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems. Sometimes these problems are caused by embarrassment or frustration associated with epilepsy. Other problems may result from bullying, teasing, or avoidance in school and other social settings. In children, these problems can be minimized if parents encourage a positive outlook and independence, do not reward negative behavior with unusual amounts of attention, and try to stay attuned to their child’s needs and feelings. Families must learn to accept and live with the seizures without blaming or resenting the affected person. Counseling services can help families cope with epilepsy in a positive manner. Epilepsy support groups also can help by providing a way for people with epilepsy and their family members to share their experiences, frustrations, and tips for coping with the disorder. People with epilepsy have an increased risk of poor self-esteem, depression, and suicide. These problems may be a reaction to a lack of understanding or discomfort about epilepsy that may result in cruelty or avoidance by other people. Many people with epilepsy also live with an ever-present fear that they will have another seizure. Driving and Recreation For many people with epilepsy, the risk of seizures restricts their independence, in particular the ability to drive. Most states and the District of Columbia will not issue a driver’s license to someone with epilepsy unless the person can document that they have gone a specific amount of time without a seizure (the waiting period varies from a few months to several years). Some states make exceptions for this policy when seizures don’t impair consciousness, occur only during sleep, or have long auras or other warning signs that allow the person to avoid driving when a seizure is likely to occur. Studies show that the risk of having a seizure-related accident decreases as the length of time since the last seizure increases. One study found that the risk of having a seizure-related motor vehicle accident is 93 percent less in people who wait at least 1 year after their last seizure before driving, compared to people who wait for shorter intervals. The risk of seizures also restricts people’s recreational choices. For instance, people with epilepsy should not participate in sports such as skydiving or motor racing where a moment’s inattention could lead to injury. Other activities, such as swimming and sailing, should be done only with precautions and/or supervision. However, jogging, football, and many other sports are reasonably safe for a person with epilepsy. Studies to date have not shown any increase in seizures due to sports, although these studies have not focused on any activity in particular. There is some evidence that regular exercise may even improve seizure control in some people. Sports are often such a positive factor in life that it is best for the person to participate, although the person with epilepsy and the coach or other leader should take appropriate safety precautions. It is important to take steps to avoid potential sports-related problems such as dehydration, overexertion, and hypoglycemia, as these problems can increase the risk of seizures. Education and Employment By law, people with epilepsy or other handicaps in the United States cannot be denied employment or access to any educational, recreational, or other activity because of their seizures. However, one survey showed that only about 56 percent of people with epilepsy finish high school and about 15 percent finish college – rates much lower than those for the general population. The same survey found that about 25 percent of working-age people with epilepsy are unemployed. These numbers indicate that significant barriers still exist for people with epilepsy in school and work. Restrictions on driving limit the employment opportunities for many people with epilepsy, and many find it difficult to face the misunderstandings and social pressures they encounter in public situations. Antiepileptic drugs also may cause side effects that interfere with concentration and memory. Children with epilepsy may need extra time to complete schoolwork, and they sometimes may need to have instructions or other information repeated for them. Teachers should be told what to do if a child in their classroom has a seizure, and parents should work with the school system to find reasonable ways to accommodate any special needs their child may have. Pregnancy and Motherhood Women with epilepsy are often concerned about whether they can become pregnant and have a healthy child. This is usually possible. While some seizure medications and some types of epilepsy may reduce a person’s interest in sexual activity, most people with epilepsy can become pregnant. Moreover, women with epilepsy have a 90 percent or better chance of having a normal, healthy baby, and the risk of birth defects is only about 4-6 percent. The risk that children of parents with epilepsy will develop epilepsy themselves is only about 5 percent unless the parent has a clearly hereditary form of the disorder. Parents who are worried that their epilepsy may be hereditary may wish to consult a genetic counselor to determine what the risk might be. Amniocentesis and high-level ultrasound can be performed during pregnancy to ensure that the baby is developing normally, and a procedure called a maternal serum alpha-fetoprotein test can be used for prenatal diagnosis of many conditions if a problem is suspected. There are several precautions women can take before and during pregnancy to reduce the risks associated with pregnancy and delivery. Women who are thinking about becoming pregnant should talk with their doctors to learn any special risks associated with their epilepsy and the medications they may be taking. Some seizure medications, particularly valproate, trimethadione, and phenytoin, are known to increase the risk of having a child with birth defects such as cleft palate, heart problems, or finger and toe defects. For this reason, a woman’s doctor may advise switching to other medications during pregnancy. Whenever possible, a woman should allow her doctor enough time to properly change medications, including phasing in the new medications and checking to determine when blood levels are stabilized, before she tries to become pregnant. Women should also begin prenatal vitamin supplements — especially with folic acid, which may reduce the risk of some birth defects — well before pregnancy. Women who discover that they are pregnant but have not already spoken with their doctor about ways to reduce the risks should do so as soon as possible. However, they should continue taking seizure medication as prescribed until that time to avoid preventable seizures. Seizures during pregnancy can harm the developing baby or lead to miscarriage, particularly if the seizures are severe. Nevertheless, many women who have seizures during pregnancy have normal, healthy babies. Women with epilepsy sometimes experience a change in their seizure frequency during pregnancy, even if they do not change medications. About 25 to 40 percent of women have an increase in their seizure frequency while they are pregnant, while other women may have fewer seizures during pregnancy. The frequency of seizures during pregnancy may be influenced by a variety of factors, including the woman’s increased blood volume during pregnancy, which can dilute the effect of medication. Women should have their blood levels of seizure medications monitored closely during and after pregnancy, and the medication dosage should be adjusted accordingly. Pregnant women with epilepsy should take prenatal vitamins and get plenty of sleep to avoid seizures caused by sleep deprivation. They also should take vitamin K supplements after 34 weeks of pregnancy to reduce the risk of a blood-clotting disorder in infants called neonatal coagulopathy that can result from fetal exposure to epilepsy medications. Finally, they should get good prenatal care, avoid tobacco, caffeine, alcohol, and illegal drugs, and try to avoid stress. Labor and delivery usually proceed normally for women with epilepsy, although there is a slightly increased risk of hemorrhage, eclampsia, premature labor, and cesarean section. Doctors can administer antiepileptic drugs intravenously and monitor blood levels of anticonvulsant medication during labor to reduce the risk that the labor will trigger a seizure. Babies sometimes have symptoms of withdrawal from the mother’s seizure medication after they are born, but these problems wear off in a few weeks or months and usually do not cause serious or long-term effects. A mother’s blood levels of anticonvulsant medication should be checked frequently after delivery as medication often needs to be decreased. Epilepsy medications need not influence a woman’s decision about breast-feeding her baby. Only minor amounts of epilepsy medications are secreted in breast milk; usually not enough to harm the baby and much less than the baby was exposed to in the womb. On rare occasions, the baby may become excessively drowsy or feed poorly, and these problems should be closely monitored. However, experts believe the benefits of breast-feeding outweigh the risks except in rare circumstances. To increase doctors’ understanding of how different epilepsy medications affect pregnancy and the chances of having a healthy baby, Massachusetts General Hospital has begun a nationwide registry for women who take antiepileptic drugs while pregnant. Women who enroll in this program are given educational materials on pre-conception planning and perinatal care and are asked to provide information about the health of their children (this information is kept confidential). Women and physicians can contact this registry by calling 1-888-233-2334 or 617-726-7739 (fax: 617-724-8307). Women with epilepsy should be aware that some epilepsy medications can interfere with the effectiveness of oral contraceptives. Women who wish to use oral contraceptives to prevent pregnancy should discuss this with their doctors, who may be able to prescribe a different kind of antiepileptic medication or suggest other ways of avoiding an unplanned pregnancy. Are There Special Risks Associated With Epilepsy?Although most people with epilepsy lead full, active lives, they are at special risk for two life-threatening conditions: status epilepticus and sudden unexplained death. Status Epilepticus Status epilepticus is a severe, life-threatening condition in which a person either has prolonged seizures or does not fully regain consciousness between seizures. The amount of time in a prolonged seizure that must pass before a person should be diagnosed with status epilepticus is a subject of debate. Many doctors now diagnose status epilepticus if a person has been in a prolonged seizure for 5 minutes. However, other doctors use more conservative definitions of this condition and may not diagnose status epilepticus unless the person has had a prolonged seizure of 10 minutes or even 30 minutes. Status epilepticus affects about 195,000 people each year in the United States and results in about 42,000 deaths. While people with epilepsy are at an increased risk for status epilepticus, about 60 percent of people who develop this condition have no previous seizure history. These cases often result from tumors, trauma, or other problems that affect the brain and may themselves be life-threatening. While most seizures do not require emergency medical treatment, someone with a prolonged seizure lasting more than 5 minutes may be in status epilepticus and should be taken to an emergency room immediately. It is important to treat a person with status epilepticus as soon as possible. One study showed that 80 percent of people in status epilepticus who received medication within 30 minutes of seizure onset eventually stopped having seizures, whereas only 40 percent recovered if 2 hours had passed before they received medication. Doctors in a hospital setting can treat status epilepticus with several different drugs and can undertake emergency life-saving measures, such as administering oxygen, if necessary. People in status epilepticus do not always have severe convulsive seizures. Instead, they may have repeated or prolonged nonconvulsive seizures. This type of status epilepticus may appear as a sustained episode of confusion or agitation in someone who does not ordinarily have that kind of mental impairment. While this type of episode may not seem as severe as convulsive status epilepticus, it should still be treated as an emergency. Sudden Unexplained Death For reasons that are poorly understood, people with epilepsy have an increased risk of dying suddenly for no discernible reason. This condition, called sudden unexplained death, can occur in people without epilepsy, but epilepsy increases the risk about two-fold. Researchers are still unsure why sudden unexplained death occurs. One study suggested that use of more than two anticonvulsant drugs may be a risk factor. However, it is not clear whether the use of multiple drugs causes the sudden death, or whether people who use multiple anticonvulsants have a greater risk of death because they have more severe types of epilepsy. What Research Is Being Done on Epilepsy?While research has led to many advances in understanding and treating epilepsy, there are many unanswered questions about how and why seizures develop, how they can best be treated or prevented, and how they influence other brain activity and brain development. Researchers, many of whom are supported by the National Institute of Neurological Disorders and Stroke (NINDS), are studying all of these questions. They also are working to identify and test new drugs and other treatments for epilepsy and to learn how those treatments affect brain activity and development. NINDS’ Epilepsy Therapeutics Research Program studies potential antiepileptic drugs with the goal of enhancing treatment for epilepsy. Since it began in 1975, this program has screened more than 22,000 compounds for their potential as antiepileptic drugs and has contributed to the development of five drugs that are now approved for use in the United States as well as others that are still being developed or tested. Scientists continue to study how excitatory and inhibitory neurotransmitters interact with brain cells to control nerve firing. They can apply different chemicals to cultures of neurons in laboratory dishes to study how those chemicals influence neuronal activity. They also are studying how glia and other non-neuronal cells in the brain contribute to seizures. This research may lead to new drugs and other new ways of treating seizures. Researchers also are working to identify genes that may influence epilepsy in some way. Identifying these genes can reveal the underlying chemical processes that influence epilepsy and point to new ways of preventing or treating this disorder. Researchers also can study rats and mice that have missing or abnormal copies of certain genes to determine how these genes affect normal brain development and resistance to damage from disease and other environmental factors. Researchers may soon be able to use devices called gene chips to determine each person’s genetic makeup or to learn which genes are active. This information may allow doctors to prevent epilepsy or to predict which treatments will be most beneficial. Doctors are now experimenting with several new types of therapies for epilepsy. In one preliminary clinical trial, doctors have begun transplanting fetal pig neurons that produce GABA into the brains of patients to learn whether the cell transplants can help control seizures. Preliminary research suggests that stem cell transplants also may prove beneficial for treating epilepsy. Research showing that the brain undergoes subtle changes prior to a seizure has led to a prototype device that may be able to predict seizures up to 3 minutes before they begin. If this device works, it could greatly reduce the risk of injury from seizures by allowing people to move to a safe area before their seizures start. This type of device also may be hooked up to a treatment pump or other device that will automatically deliver an antiepileptic drug or an electric impulse to forestall the seizures. Researchers are continually improving MRI and other brain scans. Pre-surgical brain imaging can guide doctors to abnormal brain tissue and away from essential parts of the brain. Researchers also are using brain scans such as magnetoencephalograms (MEG) and magnetic resonance spectroscopy (MRS) to identify and study subtle problems in the brain that cannot otherwise be detected. Their findings may lead to a better understanding of epilepsy and how it can be treated. How Can I Help Research on Epilepsy?There are many ways that people with epilepsy and their families can help with research on this disorder. Pregnant women with epilepsy who are taking antiepileptic drugs can help researchers learn how these drugs affect unborn children by participating in the Antiepileptic Drug Pregnancy Registry, which is maintained by the Genetics and Teratology Unit of Massachusetts General Hospital (see section on Pregnancy and Motherhood). People with epilepsy that may be hereditary can aid research by participating in the Epilepsy Gene Discovery Project, which is supported by the Epilepsy Foundation. This project helps to educate people with epilepsy about new genetic research on the disorder and enlists families with hereditary epilepsy for participation in gene research. People who enroll in this project are asked to create a family tree showing which people in their family have or have had epilepsy. Researchers then examine this information to determine if the epilepsy is in fact hereditary, and they may invite participants to enroll in genetic research studies. In many cases, identifying the gene defect responsible for epilepsy in an individual family leads researchers to new clues about how epilepsy develops. It also can provide opportunities for early diagnosis and genetic screening of individuals in the family. People with epilepsy can help researchers test new medications, surgical techniques, and other treatments by enrolling in clinical trials. Information on clinical trials can be obtained from the NINDS as well as many private pharmaceutical and biotech companies, universities, and other organizations. A person who wishes to participate in a clinical trial must ask his or her regular physician to refer him or her to the doctor in charge of that trial and to forward all necessary medical records. While experimental therapies may benefit those who participate in clinical trials, patients and their families should remember that all clinical trials also involve some risks. Therapies being tested in clinical trials may not work, and in some cases doctors may not yet be certain that the therapies are safe. Patients should be certain they understand the risks before agreeing to participate in a clinical trial. NINDS supports a number of Epilepsy Research Centers that perform a broad spectrum of clinical research on epilepsy. Some of the studies require patient volunteers. A list of these centers is available from the NIH Neurological Institute, which can be reached at the address and phone number found on the Information Resources card in the back pocket of this brochure. Patients and their families also can help epilepsy research by donating their brain to a brain bank after death. Brain banks supply researchers with tissue they can use to study epilepsy and other disorders. Below are some brain banks that accept tissue from patients with epilepsy: Brain and Tissue Bank for
Neurological Disorders
(tissue from children only)|
(tissue from adults only) National Disease Research
Interchange National Neurological Research Specimen
Bank What To Do If You See Someone Having a SeizureIf you see someone having a seizure with convulsions and/or loss of consciousness, here’s how you can help:
Call 911 if:
After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn’t feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely. If you see someone having a non-convulsive seizure, remember that the person’s behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines:
ConclusionMany people with epilepsy lead productive and outwardly normal lives. Many medical and research advances in the past two decades have led to a better understanding of epilepsy and seizures than ever before. Advanced brain scans and other techniques allow greater accuracy in diagnosing epilepsy and determining when a patient may be helped by surgery. More than 20 different medications and a variety of surgical techniques are now available and provide good control of seizures for most people with epilepsy. Other treatment options include the ketogenic diet and the first implantable device, the vagus nerve stimulator. Research on the underlying causes of epilepsy, including identification of genes for some forms of epilepsy and febrile seizures, has led to a greatly improved understanding of epilepsy that may lead to more effective treatments or even new ways of preventing epilepsy in the future. Information Resources
NIH Neurological Institute The National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health, is the leading Federal supporter of research on disorders of the brain and nervous system. The Institute also sponsors an active public information program with staff who can answer questions about diagnosis and research related to seizures and epilepsy. Private voluntary organizations that provide information on treatment, diagnosis, and services include the following:
American Epilepsy Society The American Epilepsy Society, one of the oldest neurological professional organizations in the country, promotes research and education for professionals interested in seizure disorders and epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in both pediatric and adult seizure disorders. The Society develops resources and collaborative relationships worldwide to advance patient care and to support efforts leading to the prevention, treatment, and cure of epilepsy. It also holds an annual scientific meeting that attracts more than 3,500 professionals.
Citizens United for Research in Epilepsy
(CURE) CURE is a global grassroots organization dedicated to finding a cure for pediatric intractable epilepsy. CURE works to stimulate innovative epilepsy research through private funding sources and by publishing the long overlooked need for a cure for this disease.
Epilepsy Foundation The Epilepsy Foundation is a national voluntary health agency that works for people affected by seizures through research, education, advocacy, and service. Its goals are the prevention and cure of seizure disorders, the alleviation of their effects, and the promotion of independence and optimal quality of life for people who have these disorders. Epilepsy Foundation affiliates serve people with epilepsy and their families in more than 100 communities throughout the United States.
National Association of Epilepsy
Centers The goals of this Association, which includes the majority of specialized epilepsy centers in the U.S., are to provide information about the care of patients with epilepsy to the appropriate government and industry officials; to exchange information among its members; and to participate in developing standards for programs providing services.
National Organization for Rare Disorders
(NORD) The National Organization for Rare Disorders (NORD), a federation of voluntary health organizations dedicated to helping people with rare "orphan"diseases, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. For information on prescription medicines, contact:
National Council on Patient Information
and Education The National Council on Patient Information and Education is a coalition of organizations committed to providing patients, consumers, and caregivers with useful and appropriate medicine information. Pregnant women with epilepsy can help researchers learn how epilepsy drugs affect unborn children by participating in the following program:
Antiepileptic Drug Pregnancy
Registry Other support organizations include:
Family Caregiver Alliance Services offered by the Family Caregiver Alliance include specialized information and assistance, consultation on long-term care planning, service linkage and arrangement, legal and financial consultation, respite services, counseling, and education.
National Family Caregivers
Association Through its services in the areas of education and information, support and validation, public awareness, and advocacy, the National Family Caregivers Association strives to improve caregivers’ quality of life. GlossaryNote: Due to the large number of epilepsy syndromes and treatments, only a few are discussed in this booklet. Additional information may be available from your doctor or other health professionals, from medical libraries, or by calling the NINDS Office of Communications and Public Liaison at the number provided on the Information Resources card in the back pocket of this brochure.
Recommended Books: Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MA 20892 |
|
| Visit WellnessBooks.com |
| Home | Diseases & Conditions | Videos | Forums & Chat | Resource Directory | Join HealingWell |
| Newsletter | Donate | Bookstore | HW Shop | Advertise | About Us | Email | Search |
| Link to HealingWell.com |
| Privacy Policy & Disclaimer. ©1996-2008 HealingWell.com LLC All rights reserved. |