- Quick Facts |
- Seizures Epilepsies and Symptoms Defined |
- Scope Of Epilepsy |
- Talking to Your Doctor |
- Diagnosis & Testing |
- Treatment Options |
- Managing Epilepsy |
- Wellness |
- Sudden Unexpected Death in Epilepsy (SUDEP) |
- Safety |
- Specialists + Epilepsy Centers |
- Research for Cures |
- Brian Alan Sitomer Memorial Resource Center
- Quick Facts
- Seizures Epilepsies and Symptoms Defined
- Scope Of Epilepsy
- Talking to Your Doctor
- Diagnosis & Testing
- Treatment Options
- Managing Epilepsy
- Sudden Unexpected Death in Epilepsy (SUDEP)
- Specialists + Epilepsy Centers
- Research for Cures
- Brian Alan Sitomer Memorial Resource Center
Over the span of a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy. About 1.2% of the population currently has epilepsy — that’s about 150,000 in the greater Los Angeles region, 3.4 in the United States and about 65 million in the world.
Everyone with a brain can have a seizure. Seizures and epilepsies affect women and men of all ages, races, ethnic groups and economic backgrounds.
In 2014, the Int’l League Against Epilepsy and Int’l Bureau of Epilepsy agreed that epilepsy is best considered a ‘disease’ just as cancer and diabetes are diseases. Thus, epilepsy is a non-contagious disease of the brain defined by any one of these:
- At least 2 unprovoked seizures occurring >24 hr apart,
- One unprovoked seizure with probability of further seizures, and
- Diagnosis of an epilepsy syndrome.
Epilepsy is the underlying tendency of the brain to produce sudden abnormal bursts of electrical energy that disrupt other brain functions.
There are many types of seizures that look very different – some are convulsive and some are non-convulsive and can be as brief as a staring spell or a myoclonic jerk. It is important to be able to recognize different seizures and know how to administer appropriate seizure first aid.
Epilepsies and seizures have different causes, such as head trauma, genetics, inflammation, infection, brain malformation, stroke, birth injury and more. Previously, many were diagnosed with “idiopathic epilepsy” (an epilepsy of unknown cause or pathogenesis) but as knowledge of the brain and genetics increases, fewer epilepsies are actually idiopathic.
Often seizures can be controlled by medication(s), dietary therapies, surgical treatment, lifestyle changes and/or implanted devices, but there are currently no cures. Some epilepsies remit (go away on their own). 30% of people with epilepsy live with uncontrollable seizures because no available treatment works for them, but the majority of people with epilepsy can gain control of their seizures with the appropriate treatment.
There are about 50,000 deaths in the USA each year related to sudden unexpected death in epilepsy (SUDEP) and other seizure related causes. It is important to know about safety measures and SUDEP prevention.
Often a neurologist and epileptologist might first conduct an EEG to observe the patient’s brainwaves to determine the diagnosis and best methods to control the seizures. There are other tests beyond an EEG that may be used for the purposes of diagnosis, such as video telemetry, MRI, CAT Scan, PET Scan and others.
SEIZURES, EPILEPSIES AND SYMPTOMS DEFINED
What are seizures?
Seizures are a symptom of epilepsy. There are more than 20 types of seizures that can differ greatly in appearance. Most seizures can last from a few seconds to a few minutes. They can appear differently — as convulsions or as loss of consciousness or as very subtle events that are not always recognized as seizures, such as blank staring, lip smacking, sensory changes or brief jerking movements of arms and legs.
A seizure is a temporary disturbance in the electrical activity of the brain which causes change in sensation, awareness and behavior. The abnormal electrical discharges are in brain cells known as neurons. Normally, neurons carrying electrical impulses form a network allowing communication between the brain and the rest of the body. Neurons “fire” electrical impulses toward surrounding cells and stimulate neighboring cells to fire.
Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.
In people with epilepsy, sometimes too many neurons fire at one time, causing what might be described as an “electrical storm” within the brain.
What are the types of seizures?
It is possible for a person to experience more than one of the multiple seizure types. These types are organized into three categories, depending on which part of the brain the seizure originates in and how much of the brain is affected by the electrical disturbance that produces seizures. Recognizing specific seizure types is very helpful in diagnosing, understanding, and treating epilepsy.
The electrical discharge affects the entire brain at once.
Focal Onset - Aware & Impaired Awareness
The electrical discharge affects one area of the brain and may sometimes spread over other areas.
Examples of other types of seizures that are not just focal or just generalized.
Epilepsy is a neurological condition that affects the nervous system. Epilepsy has also been referred to as a seizure disorder. It is usually diagnosed after a person has had at least two seizures (or after one seizure with a high risk for more) that were not caused by some known medical condition.
In 2014, the International League Against Epilepsy identified the epilepsies as “diseases of the brain” and announced a new definition for the epilepsies.
A person is considered to have epilepsy if they meet any of the following three conditions.
- At least TWO unprovoked (or reflex) seizures occurring greater than 24 hours apart. (This is the same as the old definition of epilepsy.)
- ONE unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years. This means person can be diagnosed with epilepsy after only one seizure if there is a high risk of having another seizure. Often, the risk will not precisely be known and so the old definition will be employed, i.e., waiting for a second seizure before diagnosing epilepsy.
- Diagnosis of an epilepsy syndrome. As before, an epilepsy syndrome is a group of signs and symptoms that, added together, suggest a particular type of epilepsy. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begins, the type of seizures, whether the child is male or female, whether they experience difficulties with learning, and the prognosis or outcome. An example of an epilepsy syndrome is benign epilepsy with central-temporal spikes, previously known as benign rolandic epilepsy, which is usually outgrown by age 16 and always by age 21.
Seizures are symptoms or manifestations of epilepsy. Epilepsy is the underlying tendency of the brain to produce these sudden bursts of abnormal electrical activity that manifest as seizures. A number of factors can cause a brain to seize but that doesn’t necessarily mean the person has epilepsy. For example, a single seizure caused by a high fever, acute head injury, acute lack of oxygen, low blood sugar or alcohol withdrawal is not necessarily an “epileptic seizure”.
Remember, that anyone with a brain can have a seizure. Within the United States, 1 in 10 will have a seizure and 1 in 26 will be diagnosed with epilepsy.
The following is a short list of symptoms that may indicate someone has epilepsy. A medical exam is typically required if one or more of these symptoms present often in a person.
- Short periods of blackout or confusion
- Occasional ‘fainting spells’ in which bladder or bowel control is lost, followed by extreme fatigue
- Episodes of blank staring in children and teenagers
- Excess drooling
- Brief periods of no response to questions or instructions
- Sudden falls for no apparent reason
- Episodes of blinking or chewing at inappropriate times
- A convulsive seizure with or without a fever
- Lapse of awareness
- Aimless walking and wandering
- Spurts of jerking/twitching
- Strange sensations, and even visual or auditory hallucinations
When possible, video record the seizure to share with your doctor. This may help to expedite the diagnosis of epilepsy. What happens during a seizure is one of the most important pieces of information for accurate diagnosis. Include notes to share with your doctor of what happened before, during and after the seizure.
If you think you or a loved one might be having seizures, seek a referral for specialty care at an epilepsy center to see an epileptologist.
Keep a record of how often the episodes occur, the time of day it happens, and how it appears. When possible, video record the seizure to share with your doctor. Include notes of what happened before, during and after the seizure.
What happens during a seizure is one of the most important pieces of information for accurate diagnosis.
Too often, the cause of epilepsy is not known. In other cases, epilepsy may be caused by any of the following:
- Head trauma/ brain injury
- Trauma during birth including lack of oxygen
- Brain tumor
- Lead poisoning
- Abnormal brain development
- Brain lesions
- Brain infections like meningitis or encephalities
- Febrile seizures in childhood
- Brain parasites (like Neurocysticercosis which is caused by the eggs of a parasite that go to the brain)
- Autoimmune disease
The causes of epilepsy are grouped into 5 areas: genetic, structural, metabolic, immune-related, or infection. To learn more, visit Epilepsy.com.
The onset of epilepsy is most common in children and older adults (seniors).
For children, epilepsy more commonly develops in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65.
However, epilepsy can develop at any age.
Psychogenic Non-Epileptic Seizures (PNES) resemble, mimic or can appear outwardly like epileptic seizures, but their cause is psychological and are not caused by abnormal electrical discharges in the brain.
PNES are sometimes referred to as psychogenic events, psychological events, or nonepileptic seizures (NES). In most cases, they come from a traumatic event, psychological conflict or accompany an underlying psychiatric disorder.
PNES can be diagnosed through EEG/video telemetry and are typically treated with cognitive behavior therapy and serotonin re-uptake inhibitors. A person with PNES will not respond to treatment with antiseizure medication. More research is needed to find additional ways to treat PNES.
SCOPE OF EPILEPSY
Who can get epilepsy?
Anyone, anywhere and at anytime can develop epilepsy. According to the World Health Organization, “Epilepsy is the most common serious brain disorder in the world with no boundaries for age, race, social class, national or geography.” In other words, there might be 2 to 3 other serious brain disorders that are more common but those brain diseases are usually only found in certain age groups or in only some races or countries. Epilepsies are found in all ages, races, social classes and nations. Epilepsy can strike at any time in one’s life. The rich and the poor have epilepsy. Epilepsy is a shared experience across color lines, generation gaps, and gender differences.
How common is epilepsy?
In fact, the epilepsies are more common than most people realize:
The impact of the epilepsies is very personal for you and your families. Below are some general facts and figures that indicate the impact of the epilepsies on the world, our nation and the individual with epilepsy and their loved one(s).
- Because the epilepsies affect almost 3.4 million people of all ages in the USA, an estimated annual cost of $15.5 billion in direct and indirect costs is the financial impact.
- There are many kinds of epilepsy, and the different kinds of epilepsy of varying causes and severity affect people differently.
- The experience of epilepsy is sometimes complicated by other medical and neurological problems. And the experience and response to epilepsy can be somewhat unique depending on a person or family’s cultural influences, religious beliefs, education and access to resources.
- Though a variety of treatment options enable 60-70% to live seizure free most of the time, still various barriers and burdens can negatively impact the quality of life of many with epilepsy.
- Epilepsy can affect all aspects of life — development, learning, relationships, driving, employment, psychosocial adjustment — for the persons affected and their families.
- No type of epilepsy should be taken lightly. Every year in USA, as many as 50,000 people will die of SUDEP and seizure related causes.
- Unpredictability of seizures, loss of independence
- Treatment side effects
- Higher rates of anxiety, depression, cognitive problems
- More likely to have other physical health problems
- Higher risk for early death
- Social isolation
- Inability to drive
- Higher rates of unemployment or underemployment
- More socioeconomic problems
- Family and caregiver stress
TALKING TO YOUR DOCTOR
Getting good medical care for epilepsy and seizures is a team effort. You want answers, and your doctor needs information from you, too! What you tell your doctors and other health care providers is critical – it helps them sort out if you have seizures and what type of epilepsy you have. It also helps them choose which treatments may be best for you.
What to share with your doctor:
- Your history – when and what happened and when you first noticed seizure symptoms.
- About your seizures – share the symptoms that happen before, during and after.
- What medicines you take and any allergies.
- About any side effects or other health problems.
- How epilepsy affects you and your family.
- Learn about safety measures to help prevent seizures, reduce injury, improve safety, and reduce the risk of early death — while you continue to pursue seizure freedom with treatment.
- Develop a Seizure Action Plan that works for you and inform those around you about the plan.
- Make sure to address all of your priorities and questions.
Tips for appointments:
- See your doctor or other health care provider at regular times recommended by your doctor and at least once a year.
- Ask to schedule more frequent appointments when you’re trying something new or going through new situations. Research has shown that the frequency of visits helps improve a person’s ability to manage chronic health problems.
- Bring your data and personal experiences to each visit – include seizure calendars, list of medicines, side effects, seizure plan, changes in other medical problems, new symptoms, and how your daily life is affected.
- Be responsible before making a decision – ask as many questions as you need.
- Find out if switching your anti-seizure medication from a brand to generic or from one generic to another generic may affect your seizure control.
- Take action and do your homework. Make a list of what you are supposed to do so you can follow-up and make sure it gets done. Make a list of what the doctor is going to do for you too.
Tips for phone calls:
- Ask your doctor how phone calls are handled by their office. Some doctors may have specific times for phone calls or have phone calls managed first by a nurse. Others may allow electronic communication.
Times to contact your doctor may include:
- When seizures increase or are different from your usual pattern.
- When unexpected side effects occur or when side effects are bothersome.
- When unexpected problems develop during medicine changes, after surgery, when sick with another illness, or when medicines have been given for other health problems.
- Before surgery or procedures for a different health problem.
- Ask your doctor who and how to contact someone in an emergency. There may be times when you should not wait for a routine call back, and should talk to a covering doctor or go to an emergency room.
- When serious side effects occur and your doctor is not available, go to your local emergency room or emergency back-up service.
- When a seizure emergency develops, call for emergency medical help.
Learn more on how to prepare for your clinic visits.
DIAGNOSIS & TESTING
How is epilepsy diagnosed?
1. Comprehensive neurological evaluation and medical history. Your doctor may test your behavior, motor abilities, mental function and other areas to diagnose your condition and determine the type of epilepsy you may have.
Your medical history should include:
- Birth history
- Personal and family medical history, including previous generations and relatives
- History of brain injury or brain infection
- Age when the seizures started, including the seizures you may not have recognized at the time as being seizures but now suspect or know were seizures.
- Share how often the seizures occur, the time of day it happens, and how it appears. When possible, video record the seizure to share with your doctor. Include notes of what happened before, during and after the seizure.
2. Electroencephalogram (EEG). The most common diagnostic test people will likely first encounter is an EEG. As part of the test, electrodes are attached to your scalp with a paste-like substance or cap. The electrodes record the electrical activity in your brain and display as wavy lines by the EEG machine. The doctors are looking for abnormal changes to your electrical activity. The abnormal brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has epilepsy, and what type of epilepsy.
In a variation of an EEG test, your doctor may recommend high-density EEG, which spaces electrodes more closely than the conventional EEG — about a half a centimeter apart. High-density EEG may help your doctor more precisely determine which areas of your brain are affected by seizures.
IMPORTANT NOTE: A ‘normal’ EEG does not rule out a diagnosis of epilepsy.
3. Brain Imaging Scan. Brain imaging scans may be used to search for any growths, scars, abnormal cell development, lesions, stroke, or other physical characteristics of the brain that may be causing seizures.
- CT (computerized tomography). A CT scan uses X-rays to reveal abnormalities in the structure of your brain that might be causing your seizures, such as tumors, bleeding and cysts.
- MRI (magnetic resonance imaging). An MRI uses powerful magnets and radio waves to create a detailed view of your brain. This is to help detect lesions or abnormalities in your brain that could be causing your seizures.
- fMRI (functional MRI). A functional MRI measures the changes in blood flow that occur when specific parts of your brain are working. This is used before surgery to identify the exact locations of critical functions.
- PET (positron emission tomography) provides further imaging to identify the areas of the brain producing the seizures.
IMPORTANT NOTE: A ‘normal’ brain scan does not rule out a diagnosis of epilepsy.
4. Genetic Testing. There are many types of genetic tests. Some tests focus on individual genes, groups of genes, or chromosomes. The most common types of genetic testing are:
- Epilepsy Gene Panel: This test involves the analysis of the most common genes associated with epilepsy. There are many types of epilepsy gene panels. Some have fewer than 20 genes and others have many hundreds of genes.
- Chromosome Microarray. This genetic test involves analysis of a person’s chromosomes (structures that contain DNA). Checks to make sure there are no imbalances that could cause epilepsy. Imbalances include extra or missing pieces of chromosomes – or – extra or missing entire chromosomes.
- Whole Exome Sequencing: This complex genetic test involves analysis of the entire DNA code to look for changes in genes associated with epilepsy. It is similar to the epilepsy gene panel, but looks at a much larger number of genes, including rare and newly discovered genes.
- Targeted Testing: If there is already a known genetic cause of epilepsy in a person, other family members may have targeted testing to help clarify their risk.
5. Video Telemetry. When a standard EEG doesn’t provide enough information on the source and progression of seizures, continuous EEG video telemetry may be performed to learn more. Other names for this test include: EEG telemetry, EEG monitoring, or video EEG monitoring.
The video EEG records what you are doing or experiencing on video tape while an EEG test records your brainwaves. The purpose is to be able to see what is happening when you have a seizure or event and compare the picture to what the EEG records at the same time. Sounds that occur during the testing are also recorded – this can pick up if a person talks or makes sounds during an event. By doing this, doctors reading the EEG can tell if the seizure or event was related to the electrical activity in the brain. Video EEG is most helpful to determine if seizures with unusual features are actually epilepsy, to identify the type of seizures, and to pinpoint the region of the brain where seizures begin. Locating the region precisely is essential if epilepsy surgery is being considered.
Video telemetry occurs into two parts and happens across a couple of days in a hospital:
- EEG Telemetry: Electrodes are glued to the scalp to record the brain’s electrical activity. A computer continuously monitors the EEG recording so that seizure activity is marked and recorded, even if not obvious. This is important for people who have brief seizures or ones that occur during sleep.
- Video Telemetry: A camera, mounted in the ceiling, continuously records the person, allowing doctors to compare what physically occurs during a seizure with what is recorded by the EEG. A button, which look like nurse call buttons, are clipped to the siderail of the bed. During a seizure or any “strange” feeling, the person(s) in the room will be asked to push the button to help alert the computer to mark and save what appears on the video and EEG.
There are an ever increasing number of treatment options available and being discovered. Following a thorough and extensive evaluation by an epileptologist or neurologist, a proper diagnosis will determine the best treatment to pursue. While there is still no cure for the epilepsies, people have been be able to achieve seizure freedom so never give up!
Anti-seizure medications (ASM) are usually the first line of defense, but only 2/3 of people with epilepsy achieve seizure control with medication alone. If a medication doesn’t work, doctors may explore another medication (or combination of medications) in conjunction with treatment options beyond medication.
For many years, there were only a handful of anti-seizure medications drugs available to control different types of seizures. Since 1993, many more ASMs have been approved. Doctors strive to find the appropriate medication(s) for your epilepsy type and syndrome with the least amount of side-effects to control seizures. An anti-seizure medication needs to reach a therapeutic level in the blood in order to be most effective. This will vary from person to person and from medication to medication. Blood work helps determine how much medicine is in your body and how your body is tolerating the medication (learn more about blood levels). It is also important not to exceed the most effective level as that can increase side-effects.
NEVER stop an anti-seizure medication abruptly or attempt to wean yourself off a medication without doctor supervision. Medications must always be taken each and every day as prescribed (see tips on remembering to take your medication and contact us for a free pill box).
If you are thinking of using alternative therapies as a form of treatment (like medical marijuana and CBD), speak with your treating specialist as some supplements may trigger or increase seizure activity.
1. Classic Ketogenic Diet. The “classic” ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. Ketosis is a state of burning diet fat as instead of glucose that results in blood ketone level of greater than 0.5mmol/L. It is prescribed by a physician and carefully monitored by a dietitian. The diet requires careful measurements of calories, fluids, and proteins. Foods are weighed and measured.
- The name ketogenic means that it produces ketones in the body. (keto = ketone; genic = producing) Ketones are formed when the body uses fat for its source of energy.
- Usually the body uses carbohydrates (such as sugar, bread, pasta) for its fuel. Because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. The body can work very well on ketones (and fats).
- Ketones can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet, with higher ketone levels often leading to improved seizure control. However, there are many other theories for why the diet will work.
Tip: Learn more through our friends at the Charlie Foundation for Ketogenic Therapies or visit epilepsy.com.
2. Modified Atkins Diet (MAD). The modified Atkins diet is a change to the traditional ketogenic diet to make it less restrictive but is very similar in efficacy. The diet is a “modified” Atkins diet as it allows for less carbohydrates than the traditional Atkins diet (15 to 20 g/day) and more strongly encourages fat intake. MAD is one of three “alternative diets” used to treat patients with epilepsy. Learn more about MAD.
Although the foods are very similar, there are key differences between the modified Atkins diet and the ketogenic diet.
- There is no fluid or calorie restriction or limitation with MAD.
- Although fats are strongly encouraged, they are not weighed and measured. Most patients will consume plenty of dairy and oils.
- One of the biggest differences is that there are no restrictions on proteins. Typically 35% of calories for a patient on the MAD come from protein.
- Foods are not weighed and measured, but carbohydrate counts are monitored by patients and/or parents.
- It is started outside of the hospital and the person does not need to fast before starting the diet.
- Lastly, foods can be eaten more freely in restaurants and outside the home, and families (and neurologists!) can do it as well.
3. Medium Chain Triglyceride (MCT). Learn more about MCT.
4. Low Glycemic Index Treatment (LGIT). The LGIT for epilepsy was developed in 2002 as an alternative to the ketogenic diet (KD) for treatment of intractable epilepsy. The LGIT monitors not only the total amount of carbohydrates consumed daily, but focuses on carbohydrates that have a low Glycemic Index. Learn more about LGIT.
- What is Glycemic Index? The Glycemic Index of a food refers to how high that food raises your blood glucose after eating, compared to a reference food such as sugar.
There are different features of foods that affect glycemic index. For example, dietary fiber reduces glycemic index. The rate at which a food is digested and absorbed also affects its glycemic index – so buttering a piece of bread can actually reduce its glycemic index.
Surgery is an option for some kinds of seizures. There are various types of surgeries. Please consult a team who are experienced with epilepsy surgery to determine whether or not surgery is appropriate and what type of surgery is appropriate for you. As with other treatment options, the decision to proceed with surgical treatment option should involve the person with epilepsy (if possible) and the family members.
- Focal Resection
- Temporal Lobe Resection
- Extratemporal Resection (frontal, parietal, and occipital)
- Multiple Subpial Transections
- Laser Interstitial Thermal Therapy
- Anatomical or Functional Hemispherectomy and Hemispherotomy
- Corpus Callosotomy
- Stereotactic Radiosurgery
Three neurostimulation devices currently approved for the treatment of drug resistant epilepsy
- Vagus Nerve Stimulation (VNS). VNS is approved for treatment of focal epilepsy when surgery is not possible or does not work. A small electrical generator is implanted under the skin over the chest. A wire, called a “stimulator lead,” is then attached onto the vagus nerve located in the neck. The generator stimulates the vagus nerve on a set schedule. Over time this helps to reduce the number and severity of seizures a person has. It is effective in over half the people who try it.
- Responsive Neuro Stimulation (RNS). RNS is a device that can record seizure activity directly from the brain and delivers stimulation to stop seizures. The device, also called an electrical generator, is implanted in the skull. Electrodes are placed on or in the brain in the area where seizures begin. The device detects seizure onset and then delivers an electrical stimulation to stop the seizure.
- Deep Brain Stimulation (DBS). DBS surgery involves implanting an electrode into the brain and placing a stimulating device under the skin in the chest. The brain electrode is implanted through a small hole made in the skull. Advance magnetic resonance imaging (MRI) and a computer navigation system are used to guide the electrode to the exact “target” position deep in the brain. The stimulator device placed in the chest is similar to a pacemaker and is connected to the brain electrode. The device sends signals to the brain electrode to stop signals that trigger a seizure. DBS surgery for treatment of seizures was approved by the U.S. Federal Drug Administration (FDA) in 2018. It has been approved in Europe, Australia and Canada for several years.
Epilepsy can get in the way of life, mostly when seizures keep happening. You can learn how to manage your epilepsy to feel better and have a more active and full life. Practice self-management strategies to better control your seizures and your health. Self-management is what you do to take care of yourself.
Epilepsy self-management encompasses three broad areas:
- Treatment Management. Taking your medication as prescribed, keeping medical appointments, and maintaining open communication with your health care team.
- Seizure Management. Recognizing and avoiding seizure triggers whenever possible and keeping track of seizure activity.
- Lifestyle Management. Getting adequate sleep, reducing stress, eating healthy, getting regular exercise, maintaining social support networks and more.
Managing Epilepsy Well Checklist:
- Know about your individual epilepsy diagnosis.
- Take your seizure medicines as prescribed.
- Check with your doctor before taking other medicines or supplements.
- Keep a record of your seizures and seizure triggers to track patterns.
- Adapting your lifestyle to avoid seizure triggers.
- Develop a Seizure Action Plan with your doctor and share with those around you to help keep you safe.
- Talk to your doctor about any changes in your health, including treatment side effects.
- Find out if switching your anti-seizure medication from a brand to generic or from one generic to another generic may affect your seizure control.
- Learn about safety measures to reduce injury, improve safety, and reduce the risk of early death.
- Get at least 7 to 8 hours of sleep each night.
- Exercise regularly and safely each day.
- Follow a well-balanced diet, stay hydrated, and keep a healthy weight.
- Don’t use tobacco, drink alcohol excessively, or abuse other substances.
- Practice ways to lower stress.
- Stay on top of your mental health and work with your provider on any concerns.
- Seek tools and strategies to improve your memory.
- Build a community around you for support. Keep in touch with friends and family. Connect with your local Epilepsy Foundation.
- Actively pursue END EPILEPSY for you and your family and for the community at large. You can do this by educating yourself and those around you about your seizures/epilepsy, sharing your story to spread awareness, connecting with others, joining the Epilepsy Walk Los Angeles, participating in research and living with HOPE.
Studies show that social and emotional support and an overall sense of well-being have more impact on quality of life than the seizures themselves. A well-rounded approach to wellness empowers individuals to take an active and engaged role in their healthcare which is important for self-management and improving epilepsy and wellness outcomes.
Founded in 2016, the Epilepsy Foundation’s Wellness Institute promotes a holistic approach to health for people living with epilepsy and their caregivers. The Wellness Institute focuses on the following eight dimensions of wellness that each contribute to one’s overall health and well-being:
- Emotional Health
- Stress Management
- Diet and Nutrition
- Physical Activity
- Independent Living
- Social Relationships
- Education and Employment
View to learn more about the dimensions of wellness and tips and tools on how to address each dimension: Click Here
SUDDEN UNEXPECTED DEATH IN EPILEPSY (SUDEP)
SUDEP is Sudden Unexpected Death in Epilepsy. SUDEP refers to the death of a person with epilepsy who was in their usual state of health dies suddenly and unexpectedly. The death is not known to be related to an illness, accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found.
Most often SUDEP occurs during or right after a seizure. SUDEP may have more than one cause or result from a combination of problems. Difficulty with breathing, heart rhythmns or brain function may contribute to SUDEP. Research is being done to look at all possible causes and potential genetic links.
Approximately 1 in 1000 people with epilepsy die from SUDEP each year. The greatest risk factors for SUDEP are uncontrolled generalized tonic clonic seizures (also called convulsions) and seizures that happen at night. Missing doses of seizure medicine and drinking alcohol may lead to poor seizure control and affect a person’s risk for SUDEP too. While SUDEP can occur at any time, it happens more often in people who have had seizures for many years.
The first step to lowering your risk for SUDEP is to take your seizure medication regularly and at the right dose. If seizure medicine along doesn’t control seizures, talk to your doctor about other ways to possibly control your seizures. Ask for a referral to an epilepsy specialist at an accredited epilepsy center. Learn how to avoid seizure triggers, get enough sleep and don’t use alcohol or drugs. It’s important to make sure other people in the home know seizure first aid too.
• What is my risk for SUDEP?
• What can I do to reduce my risk?
• What should I do if I miss a dose of my medication?
• What should I do if I have a seizure?
• Can I be referred to an epilepsy specialist?
• Where can my family obtain training in seizure first aid?
• What activities or behaviors increase my risk?
• What should I tell my family about my epilepsy and SUDEP?
• I’m having seizures, should we consider a change in my treatment?
• Should I consider using a device to warn someone that I’m having a seizure?
• I have seizures in my sleep, should I consider sharing a bedroom?
Depending on the type of seizure, people may fall or hurt themselves in a variety of ways. Cuts, burns, bumps, and bruises can happen. More seizure injuries can happen too, especially if someone falls and is not aware of what’s going on around them.
Prevent drowning and injuries from slips and falls in the bathroom:
- Take showers instead of baths.
- Leave the bathroom door unlocked. Make sure someone is close by in case you have a seizure while showering.
- Hang the bathroom door so it opens out, not in. This way someone can get in easily if you need help.
- Use safety glass for mirrors and shower doors.
Take care when cooking:
- Get pre-sliced foods so you don’t need to use knives when alone.
- Use the microwave instead of a stovetop when you’re home alone.
- If you use a stovetop, use back burners to prevent spilling hot foods.
- Wear long thick oven mitts to take food out of the oven.
- Try not to carry hot dishes. Try sliding them along a counter or use a cart.
- Use cups with lids for hot drinks.
- Use non-breakable dishes, cups, and cookware.
Stay safe from burns and fires:
- Make sure someone is nearby when you use the stove, grills, or fireplace.
- Iron clothes or light candles only when someone is with you.
- Look for appliances that have automatic shut-off switches.
- Put guards in front of radiators, heaters, and fireplaces. Only use space heaters that can’t tip over.
- Check your smoke alarms once a month by pushing the test button.
Keep yourself safe while sleeping:
- Sleep in a bed that is low to the floor if you have seizures at night.
- Consider using a seizure alert device so someone will know if you have a seizure and can check on you.
- If you have shaking movements during a seizure, move your bed away from furniture or the wall so you don’t injure yourself during a seizure.
- Sleep on your back or side; don’t sleep face down.
Prevent injuries from falls:
- Pick up or put away things you could trip over, like cords, toys, or shoes.
- Store things you use often where you can reach them easily.
- Put padding on furniture with sharp edges or buy furniture with rounded or soft edges.
- Install soft flooring, like carpets with thick padding.
- Use soft “outdoor carpeting” on hard surfaces like stairs or a deck.
Work safely outside:
- Use a lawn mower that stops when you let go of the handle.
- Make sure that power tools have safety guards and will stop running if you let go.
- Always wear protective eyewear, footwear, and gloves.
You have seizures and you have a child. How is this going to work? You can’t help but wonder, “What happens if I have a seizure while taking care of the baby?” This is a normal question and one you should talk about with your loved ones and health care team. Then develop a plan to make your home safe for your family. Try these simple parenting tips to make life easier. Remember, what you need to do may vary with the type and number of seizures you have, so talk about these ideas with your doctor or nurse. If you have frequent seizures, especially with loss of awareness, consider having someone help while you care for your baby.
- When childproofing your house like all parents do, take an extra step. Get down on the floor and think what would happen if you fall. What could hurt you or your baby?
- Sit in the middle of the bed, on the couch, or on the floor when holding or feeding your baby.
- Change, dress, and sponge bathe the baby using a portable changing pad on the floor.
- Strap the baby snugly into a stroller with breaks or an infant seat when you feed him.
- When home alone, use a playpen or play yard with doors and gate. If you don’t feel well, put the baby down in this enclosed area.
- Keep baby supplies on each level of the home to avoid climbing stairs.
- Don’t carry hot fluids or dangerous items near the baby.
- If your seizures are sensitive to sleep deprivation, use help to feed the baby at night.
- Always keep your epilepsy medicine (and other medicines) where children can not reach them.
- When walking outside with a child who can wander, consider using a safety harness to keep your child close in case you have a seizure.
- If you feel a warning or seizure, lie down on your side on a soft surface.
- Carry a cell phone with you, even in the house, to call for help if needed.
SPECIALISTS + EPILEPSY CENTERS
Depending on the type of seizure, people may fall or hurt themselves in a variety of ways. Cuts, burns, bumps, and bruises can happen. More seizure injuries can happen too, especially if someone falls and is not aware of what’s going on around them.
Neurologists and pediatric neurologists are trained in diagnosing and treating epilepsy and many other neurological disorders. Some have more experience than others depending on their amount of actual training in epilepsy and whether they currently focus on and remain current in epilepsy diagnosis and treatment. Many neurologists also specialize in epilepsy.
In some areas, where there are neurologists are scarce, people with epilepsy will be treated by pediatricians, internists, family physicians and neurosurgeons.
Specialized care for people whose seizures are difficult to control is available in large medical centers and university medical centers with “Epilepsy Centers”.
Epilepsy Specialists, also known as Epileptologists, undergo 1-3 extra years of training in epilepsy and EEG, beyond their neurology training.
If I have seizures, do I need to see a neurologist who specializes in epilepsy? This is recommended. Request that your primary doctor or pediatrician refer you to a neurologist who specializes in epilepsy. The epilepsy specialist can work with your primary doctor to help manage your seizures.
For good diagnosis and treatment, the most important thing is a very careful history done by a concerned physician. The history is then supplemented by an examination including a neurological exam and other ancillary test including electroencephalography (EEG) awake and asleep, magnetic resonance imaging (MRI), positron emission tomography, and blood studies. The diagnosis of the type of seizure and epilepsy syndrome are very important in treating patients because they determine the evaluation, the treatment more likely to be effective, and the prognosis of that patient.
The epilepsy specialist will work with your primary doctor to:
- Verify that your seizures are epileptic in nature.
- Diagnose and define your type of seizure types and your epilepsy syndrome.
- Determine the likely cause of your epileptic seizures (if known).
- Work with you to identify and stop your trigger factors.
- Establish an early treatment plan based on #1 to #3 and discussions with you and your family.
- Work with you to monitor seizure control and recognize adverse effects of treatment and of seizures in order to balance the effects of both with your quality of life.
- If first treatment plan does not work, explore other treatment options with your doctor.
Comprehensive epilepsy centers have the resources to diagnose and treat epilepsy in all its forms and focus on either curing or alleviating the epilepsy by stopping or reducing the seizures.
To locate a local epilepsy center or epileptologist, visit
RESEARCH FOR CURES
Research inspires hope
When it comes to supporting epilepsy research, we are proud to be leading all the other affiliates of the Epilepsy Foundation, nationwide, in donating the most money to epilepsy research. Since 2005, we have helped support more than nine epilepsy research projects at UCLA, UC Irvine, UC San Francisco and at institutions outside California.
Through our Enews and website we also actively bring research advances to our community and promote involvement and participation in research.
Finally, we are also active in advocating at the federal level for more funding for epilepsy research.
We encourage the community affected by epilepsy to learn more about research in progress and how participation in research might benefit the community at large.
We are glad to provide information on studies that have Institutional Review Board approval and are overseen by a medical center, hospital or clinic with an ethics review committee. To the extent information is made available to us, we are glad to provide the study name, a brief description of the study, a description of study participants needed, and a link to more study information and/or to contact information.
The Epilepsy Foundation’s Clinical Trials Portal connects participants to current trials and observational studies to help accelerate development and testing of new treatments. https://www.epilepsy.com/clinical_trials
BRIAN ALAN SITOMER MEMORIAL RESOURCE CENTER
Knowledge is an essential weapon in this fight…
Our Resource Center is known as the Brian Alan Sitomer Memorial Resource Center. If you seek resources, tools, forms and downloadable information sheets, you’ve come to the right place. You will get help in seeking specialty care, knowing your rights, information on driving, public transportation, safety, school resources, and financial planning for your child with special needs. All content contained in the Resource Center are for information purposes only. Do not make changes in your care or your child’s care — treatments, medication, lifestyle, or seizure management — without consulting your physician
The Resource Center also provides links to other organizations that provide information about epilepsy.
Seizure First Aid
First Aid for Seizures
First Aid-Complex Partial (diagram)
First Aid-Convulsive or Generalized Tonic Clonic Seizures (diagram)
Home Safety (Flier)
Training materials and to request a Seizure First Aid Training
To request an instructional Diastat DVD, please contact Rebekkah
The Employment Development Department (EDD) is one of the largest state departments with employees at hundreds of service locations throughout the state. For more than 70 years, we have connected millions of job seekers and employers in an effort to build the economy of CA.
To learn more about Employee Development Services visit the EDD website: Employee Development Services Website
ADA Resources Guide
Dept. of Rehabilitation List
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.
Metro Trip Planner
Detailed route and schedule information on each line
For a more geographic look at the system
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 one of the Metro’s Customer Information Agents by calling 323.GO.METRO (323.466.3876) are available 6:30am – 7pm (Monday-Friday) and 8:00am – 4:30pm (Saturday/Sunday). 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
In loving memory of
Brian Alan Sitomer
An excellent young man
January 1970 – June 1977
LETTER FROM STEVE SITOMER
In memory of my son, Brian Alan, this Resource Center is dedicated to all who are touched by epilepsy on a daily basis. Please use this Resource Center with its information, referrals and links to other available sources to educate yourselves about epilepsy. You must become knowledgeable in order to improve the quality of life for yourself and those around you affected by epilepsy. Don’t learn the hard way like I did!
Thank you to all the family members and friends who have supported the Brian Alan Sitomer Fund so faithfully over the years. Thank you to the staff and volunteers of the Epilepsy Foundation of Greater Los Angeles who helped launch and will help maintain and update the Brian Alan Sitomer Memorial Resource Center – both virtual online and at the Epilepsy Foundation Los Angeles.
Steven M. Sitomer
Father of Brian Alan