Treatment Guide Epilepsy Epilepsy is one of the most common neurological disorders, affecting nearly 3 million Americans of all ages. If you or someone you love has this chronic condition marked by recurrent epileptic seizures, you know that it can touch many areas of life. At Cleveland Clinic, we believe that the best epilepsy care is compassionate and comprehensive. That s why we ve brought together a multidisciplinary team offering all of the experts you may need to address everything from the physical to the emotional to the social, and from your family to your workplace or school. Our Epilepsy Center is one of the world s largest and most comprehensive centers for epilepsy care. Beyond providing accurate diagnoses and effective treatments, we empower patients to understand and manage their disease so they can enjoy fuller, more productive lives. USING THIS GUIDE Please refer to this guide as you examine your treatment options. Remember, it is your right as a patient to ask questions and seek a second opinion. CLEVELAND CLINIC EPILEPSY PROGRAM VITAL STATS 2013 6,200 ADULT PATIENT VISITS 2,700 PEDIATRIC PATIENT VISITS 359 EPILEPSY SURGERIES Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy
What is epilepsy? Epilepsy is a chronic (long-lasting) medical condition that is characterized by recurrent epileptic seizures. An epileptic seizure is an event of altered brain function caused by abnormal or excessive electrical discharges from brain cells. Epilepsy affects up to 1 percent of the population in the United States. What causes epilepsy? About 65 percent of newly diagnosed epilepsy cases have no obvious cause. Of the remaining 35 percent, the more common reasons include stroke, congenital abnormalities (those we are born with), brain tumors, trauma and infection. It is important to determine the cause to help guide treatment. Our Epilepsy Center teams regularly conduct research to evaluate the effectiveness of new treatments. If you do not respond to conventional drugs, you may wish to consider participating in a clinical trial of a new drug. Your physician and clinical trials coordinator can explain the details of a particular study to you, but your ultimate participation is voluntary. For a listing of current clinical trials at Cleveland Clinic, visit clevelandclinic.org/neurotrials. How is epilepsy diagnosed? The evaluation of patients with epilepsy is aimed at determining the type of seizures (epileptic versus non-epileptic) and their cause, since various epileptic seizure types (generalized or partial/ focal) respond best to specific treatments. Diagnosis is based on the following: MEDICAL HISTORY Proper diagnosis and treatment rely heavily on the completeness and accuracy of your medical history. The physician needs detailed descriptions of your seizures as well as the sensations you may feel before and after these episodes. Others who have often seen you before, during and after seizures, such as family members and close friends, should be present to provide details, especially if your seizures involve loss of consciousness. Your physician may ask you the following questions, so it s best to consider them beforehand and be prepared: 2 Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy
SYMPTOMS Do you experience a warning or aura before a seizure occurs? What is the first sign of the seizure? Do you lose consciousness? How long do your seizures last? How often do they occur? What factors, if any, seem to trigger your seizures? HISTORY At what age did your seizures begin? What circumstances surrounded your first seizure? How have your seizures changed over time? PRIOR TREATMENT(S) Which medication(s) have you taken? At what doses? How effective were they? Did you experience any unacceptable side effects? If so, what were they? Details of your past and present general health, as well as your family members overall health, will be needed. In addition, you will be asked about any alcohol or drug use. Significant events during the pregnancy, delivery and newborn periods may be explored. Physical examination Your physician will test your muscle strength, reflexes, eyesight, hearing and ability to detect various sensations. This information may help your physicians develop a better understanding of the cause and nature of your seizures. Epileptic seizures are divided into two broad categories: generalized and partial (or focal). Classifying the type of seizure is very important, and will help your doctor plan the treatment you need. Generalized seizures are produced by abnormal electrical activity throughout the brain. They can result from a genetic predisposition in an otherwise healthy person or as a consequence of widespread disturbance of brain function. You may experience different types of generalized seizures (including Grand mal or generalized tonic-clonic, absence, myoclonic, clonic, tonic and atonic), or the type may vary from one seizure to another. Partial or focal seizures are produced by electrical impulses that start in a relatively small region of the brain. The part of the brain generating the seizures is sometimes called the focus. In simple partial seizures, the patient retains awareness, whereas complex partial seizures cause the patient to lose awareness. Partial seizures can vary in type in the same patient, or go from simple partial to complex partial, or even to generalized seizures. Partial seizures imply some localized brain disease caused by head injury, stroke, tumor, scar or developmental anomaly. The cause can sometimes be detected on imaging tests but, in many instances, it remains unknown. Rarely are partial seizures related to a genetic predisposition. Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy 3
TESTS You will also undergo a detailed neurological examination. The majority of these tests will be done on an outpatient basis. Procedures common used include: Electroencephalogram (EEG) This recording of your brain waves is done by first attaching small disc electrodes to measured locations on your head. These electrodes are then connected to a recording device called an electroencephalograph. The EEG test, which typically lasts about 90 minutes, is a digital recording of your brain waves that may provide critical information about the nature and location of any abnormalities. Magnetic Resonance Imaging (MRI) This advanced technique, which takes about 15 minutes to an hour to perform, uses magnetic and radio waves to generate a detailed view of the brain. Since its inception in 2008, more than 800 studies have been performed in our MEG (magnetoencephalography) laboratory. This technology is used to better identify epileptic sources in patients in whom the area of the brain causing the seizure would otherwise be difficult to identify. Blood tests These studies give our physicians a measure of the various compounds and cells normally present in your blood a useful baseline for later comparisons. After you begin treatment with some anti-epileptic medications, you may need periodic blood studies to provide your healthcare team with an understanding of how your body processes and reacts to these drugs. Other tests Depending on your condition, epileptologists may recommend additional, more specialized tests or consultations with other clinicians such as a neuropsychologist, eye doctor or genetic expert. How is epilepsy treated? The goal of treatment is to control your seizures and restore your quality of life. In most cases, success is achieved through an accurate diagnosis and choice of the right type and dosage of anticonvulsant medication(s). In a few carefully selected cases, epilepsy surgery may be recommended. DRUG THERAPY The most important advice to patients regarding drug therapy is to take your medications exactly as directed and to never suddenly change medications or stop taking them without consulting your physician. 4 Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy
The type of anticonvulsant(s) you are given will depend on the type of epilepsy you have, and the dose prescribed will vary with age, weight, gender and other factors. As with any medication, you may experience side effects. Fortunately, most side effects, such as sleepiness or an unsteady walk, are mild and will soon pass. If serious side effects or other unexpected reaction occur, call your physician immediately. It may take a few attempts before the best drug, combination of drugs or dosage is determined for you. During this adjustment period, frequent blood samples may be taken to monitor your blooddrug levels. Even after the optimal treatment is found, factors in your life may change, requiring later adjustments to further improve management of your seizures. Meanwhile, you should watch for side effects from these and other medications, including nonprescription products. SURGERY Individuals whose seizures are unresponsive to drug therapy or who have intolerable side effects should be evaluated for possible surgical treatment. To improve access for our patients, we ve expanded our Epilepsy Monitoring Units (EMUs) and equipped them with the most advanced technologies in both Cleveland and Weston. Our pediatric and adult EMUs operate around the clock, fully staffed with specialists. To be considered for surgery, extensive neurological testing must show that the source of the your seizures is in a well-localized area of the brain that can be surgically removed without causing damage to essential functions such as movement, sensation, vision, speech or memory. Seizure-free rates after surgery can range from 30 to 80 percent, depending on factors such as the patient s age, general health and neurological specifics. The principles of epilepsy surgery evaluation in infants, children, adolescents and adults are similar, for the most part. In children, however, age-related factors such as limited cooperation and maturing brain changes (which can complicate interpretation of EEGs and MRIs) pose additional challenges. On the other hand, pediatric patients are often best suited for epilepsy surgery, given that their still-developing brains can better adjust after tailored surgical removal of the epileptic region. Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy 5
Our epilepsy surgeons have performed more than 4,100 surgeries since 1996. Ten years after epilepsy surgery, 68 percent of Cleveland Clinic patients who have undergone temporal lobe resection (removal of tissue) the most common type of epilepsy surgery continue to be seizure-free. To learn more about epilepsy surgery at the Epilepsy Center, call for an appointment at toll-free 866.588.2264 or visit clevelandclinic.org/epilepsyeducation. EPILEPSY SERVICES AT CLEVELAND CLINIC FLORIDA Cleveland Clinic Florida s adult epilepsy program is offered at the Weston campus, located just south of Fort Lauderdale. This program, which is fully integrated with our Ohio program, offers: Comprehensive evaluation and diagnosis All-digital EEG equipment Higher-resolution MRI and PET 6-bed Epilepsy Monitoring Unit, plus 4 mobile units Epilepsy surgery for patients who qualify What type of follow-up is necessary for epilepsy? Controlling your epilepsy entails a long-term commitment by you and your caregivers. Periodic follow-up exams with your doctor, physician assistant or advanced practice nurse are important, especially if your seizures prove difficult to control. During these visits, your healthcare team will evaluate how your medication is working and whether you are experiencing side effects. Measuring the amount of seizure medication in your blood could be an essential part of a follow-up visit (if you are failing certain antiepileptic medications). This test is usually completed once or twice a year but may be performed more or less often, if indicated. EEGs and neuropsychological and neuroimaging studies (such as MRI scans) may be an occasional part of your follow-up exam as well. They assist the physician in charting your future course of treatment. Why choose Cleveland Clinic s Epilepsy Center? Cleveland Clinic Epilepsy Center s epilepsy program is a leader in diagnosing, and medically and surgically treating epilepsy. Today, our program is considered one of the most comprehensive of its kind nationally and internationally, enriched by our multidisciplinary team approach; clinical expertise and experience; clinical and translational research; education and innovation. Ready to Make an Appointment? To make an appointment for an evaluation with a Cleveland Clinic epileptologist, please call 866.588.2264 (Cleveland) or 954.659.5671 (Florida). 6 Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy
Download Cleveland Clinic s MyEpilepsy App Today. Download this free educational, interactive ipad tool now on the App Store featuring: Interactive Seizure Diary Medication Reminder MyEpilepsy Path Interactive Questionnaire Epilepsy facts, diagnosis and treatment options Seizure First Aid Appointment Manager and more Also, learn about how our patient management conference helps patients, our success with keeping many patients seizure-free and what Cleveland Clinic patients have to say about their care. Log on today to: clevelandclinic.org/epilepsyvideos. Stay connected with us on WHO S WHO? Here is a look at who may be involved in your care and how they can help you: Neurologist/epileptologist Epileptologists are neurologists whose specialized training in epilepsy gives them a deeper understanding of how the disease affects the central nervous system. They diagnose, medically treat, manage, and/or recommend surgery if you are not responding well to medical therapy. Neurosurgeon Neurosurgeons are trained to operate on patients of all ages with difficult-to-control epilepsies. The operation eliminates a definite, localized seizure focus that can be removed without creating significant risk of loss of function. Neuroradiologist Neuroradiologists are physicians who interpret imaging studies using the latest in MRI and other scanning technologies (such as MEG, fmri, PET, SPECT, Wada test) to best evaluate the patient s brain structure and function. Cognitive and behavioral health specialist These experts help patients with epilepsy with any associated conditions such as depression, anxiety, memory lapses or other psychological/psychiatric disorders. Occupational therapist An occupational therapist analyzes how epilepsy affects the ways in which you perform your daily activities and help you learn new, more satisfying approaches. Same-day appointments available, call 866.588.2264 clevelandclinic.org/epilepsy 7
9500 Euclid Ave., Cleveland, OH 44195 The Neurological Institute is a leader in the diagnosis and treatment of common and complex neurological disorders of adult and pediatric patients. Its more than 300 specialists combine expertise and compassion to achieve measurably superior results. By promoting innovative research and integrated care models, the Neurological Institute accelerates the adoption of new treatments and technologies into patient care. The Neurological Institute is one of 27 institutes at Cleveland Clinic, a nonprofit academic medical center ranked among the nation s top hospitals (U.S. News & World Report), where more than 3,000 physicians and researchers in 120 specialties collaborate to give every patient the best outcome and experience. clevelandclinic.org 2014 The Cleveland Clinic Foundation 13-NEU-903