An Overview Of Epilepsy
Q&A About Epilepsy And Seizures
    What is epilepsy? 
    Who gets epilepsy?
    How common is epilepsy and how many are affected?
    What are the symptoms of epilepsy?
    What are the different kinds of Seizures? What do they look like and what to do.
    If I have seizures, do I need to see a neurologist who specializes in epilepsy?
    What can I expect from my neurologist or epileptologist?
    What are some of the possible treatment options?
    What is the psychosocial impact?
    What are pseudoepileptic, psychogenic seizures?
    What about SUDEP and death in epilepsy?
Facts & Figures About Epilepsy & Seizures - More Common Than You Think
Myths That Lead To Misunderstanding About Epilepsy
Seizure First Aid
A Few Helpful Tips Related To Treatment And Living With Epilepsy
Other Information
Other Resources

An Overview of Epilepsy
Gregory O. Walsh, MD & William W. Sutherling, MD
Professional Advisory Board, Epilepsy Foundation of Greater Los Angeles

Epilepsy is a symptom of disease. Epilepsy or seizure disorder is a condition in which a person has recurrent seizures under normal environmental conditions. Seizures are changes in behavior or activity brought about by an abnormal electrical discharge of brain cells. We are often asked why some people have seizures and others do not. With such a complicated and dynamic brain which we humans have - capable of thought, music, art and science - it is remarkable that the circuits do not misfire more frequently. The complex inhibition in the brain prevents most people from having seizures while allowing normal function. Any disease that affects the central nervous system circuits including brain damage before or at birth, brain trauma, tumors, strokes, infections, metabolic disorders, or genetic defects can cause a seizure. The list of famous intelligent people who have had this disorder is almost endless including Julius Caesar, Alexander the Great, Buddha, Napoleon, Handel, van Gogh, Dante, Tchaikovsky, Alfred Nobel, Socrates, Isaac Newton, Alfred Tennyson, Charles Dickens, and Dostoyevsky. One percent or 1 out of 100 people in the United States have an ongoing seizure disorder. It affects driving, employment, psychosocial adjustment, and every other aspect of life for the patients with a seizure disorder as well as their families.

There are many different types of seizures. There are two main categories:

1. Generalized Onset in which the seizure discharge starts in the entire brain at once, and
2. Partial or Focal Onset in which the discharge starts in one area of brain and then spreads out over other areas.

The generalized onset seizures are more likely to be of genetic origin and include generalized tonic-clonic or grand mal seizures, Absence or Petit mal seizures and myoclonic seizures. Tonic means stiffening. Clonic means jerking, Myoclonic means single or repetitive jerks. The partial onset seizures are usually caused by focal brain damage from any cause. They are further divided into simple partial seizures in which there is no loss of consciousness and complex partial seizures in which there is a loss of consciousness. Loss of consciousness implies an interference with the person interacting with his or her environment. Epilepsy is further categorized into epilepsy syndromes. The epilepsy syndromes have characteristic ages of onset, specific causes (trauma, tumor, infection, stroke, genetics, etc.) and often specific localizations of the seizure discharge within the brain.

The type of seizure and epilepsy syndrome are very important in treating patients because they determine the evaluation, the anti-epileptic medications that are more likely to be effective, and the prognosis of that patient. As with all medicine, the most important way of determining all of these 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), and blood studies.

The mainstay of treatment of seizure disorders is medication. The aim in treating patients is to have no seizures and no side effects from the treatment. The ideal medication would completely control the seizures, be taken once per day, have no side effects, and be inexpensive. Unfortunately we do not have that ideal medication. About 50% of seizure patients are completely controlled by medication. Another 20-30% have few enough seizures that they can continue their normal lifestyle. However, that leaves 20-30% who are not controlled on any of the currently available anti-epileptic medications. These patients we call medically refractory. If seizures are not controlled after two years surgery can be a very effective option in selected partial onset seizure patients. Focal excision surgery (removal of the scar in the brain) offers the most effective treatment with the highest cure rate for those patients with partial onset seizures. New advances in diagnosis and treatment allow more patients with medically refractory seizures to undergo curative surgery and lead normal lives. In the most common type of medically refractory seizures, temporal lobe epilepsy, surgery renders up to 80% of patients free of any seizures with lapse of consciousness. An additional 15% have marked reduction in their seizures. This type of surgery needs to be done in specialized centers that have a team of specialists in epilepsy surgery including medical neurologists and neurosurgeons who specialize in epilepsy, psychologists, nurses, electroencephalography technicians and neuroradiologists. The key test to localize the origin of the seizure is continuous Video-EEG monitoring to record and analyze the actual seizures. Video-EEG also categorizes the seizure. This requires admission to the hospital to capture an adequate sample of seizures. Based on analysis of the Video-EEG, other specialized testing is done. Most of the new advances in diagnosis have been cortical imaging and mapping tests which help localize the origin of the seizures, guided by a detailed history and physical examination and the Video-EEG.

If surgery is not an option, there are other alternatives including ketogenic diet, newer anti-epileptic medication, and vagal nerve stimulator. These allow more patients to be treated for their uncontrolled seizures. Another approach to the medically refractory seizure patient, especially in children, is the ketogenic diet. It is particularly effective in patients with frequent drop attacks and/or severe seizure disorders. It takes a motivated patient and/or dedicated parents because it is a precise high fat diet. It has been made more palatable by advances in nutrition science. About 50% of the medically refractory patients have a greater than 90% reduction in seizure frequency. Some have been able to get off medication entirely. Several anti-epileptic medications have been released in the past 10 years. In the medically refractory patients who are the hardest to control about 30 to 45% of those patients have a greater than 50% reduction in seizure frequency. Some are seizure free. Another form of treatment is the vagal nerve stimulator, which is implanted in the anterior chest wall with a wire going under the skin into the neck and wrapped around the vagus nerve. The results are that about 31% had a 50% or greater reduction in seizure frequency.

Women with epilepsy may have special problems. They need to be counseled on the need for therapy and risks of birth defects. All women with a seizure disorder of child bearing potential should be given folate supplementation to decrease the risk of fetal abnormalities. Most fetal abnormalities happen in the first 30 days of pregnancy with some decreasing risk over the first trimester or 3 months. Therefore, prenatal counseling is very important. There is no benefit and it is even dangerous for the mother to stop medication after she knows she’s pregnant. The use of the single most effective anti-epileptic medication for that type of seizure is usually less risk than the use of polypharmacy and less risk that a convulsion during pregnancy. Vitamin K supplementation is recommended during the final month of pregnancy.

If a patient has a prolonged seizure (greater than 5 minutes) or two seizures in a row without regaining consciousness it is a medical emergency called status epilepticus. In this case, 911 should be called and the patient taken to the emergency room. The faster the treatment the less the risk of death or permanent neurologic damage. If a patient with epilepsy has had status on two occasions, there are new treatments available which can be started at home to begin treatment sooner during any future episodes.

The local Epilepsy Foundation is a wealth of information for patients and families with epilepsy. It provides many services including information, referral, education, advocacy and support. You should discuss this with your physician. 

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Q&A About Epilepsy And Seizures

What Is Epilepsy?
Epilepsy is a condition in which a person has a seizure. A seizure is a change in sensation, awareness, behavior brought about by abnormal discharges in neurons in the brain. Normally, neurons carrying electrical impulses form a network allowing communication between the brain and the rest of the body. Neurons "fire" or send electrical impulses toward surrounding cells, stimulating neighboring cells to fire. In people with epilepsy, too many neurons fire at one time, causing an "electrical storm" within the brain. There are more than 20 different types of seizures.
 
Who Gets Epilepsy?
Different kinds of epilepsy of varying causes and severity affect a diverse group of people. The rich and the poor have epilepsy. Epilepsy is a shared experience across color lines, generation gaps and gender differences. The "face of epilepsy" is sometimes complicated by other medical and neurological problems. Though a variety of treatment options enable 60 to 80 percent to live seizure free, various barriers and burdens still negatively impact the quality of life of many with epilepsy. Epilepsy is uniquely experienced and responded to depending on cultural influences, religious beliefs, education and access to resources. All this diversity is reflected in "the many faces of epilepsy."

How Common Is Epilepsy And How Many Are Affected?
Epilepsy can strike at any time in one’s life. About 3 million people in the United States have epilepsy. There are more than twice as many people with epilepsy in the USA than the combined number of people with cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease. Every 3 minutes a new person is diagnosed with epilepsy. There are 800,000 Americans with uncontrolled seizures. There are 360,000 children, under the age of fifteen, affected with epilepsy. Every year in USA, 25,000 to 50,000 people will die of seizure related causes.

What Are The Symptoms Of Epilepsy?
According to the Epilepsy Foundation of America, the following symptoms may indicate someone has epilepsy and a medical exam is advised if one or more of these symptoms are present. The symptoms include:
• short periods of blackout or confused memory
• occasional "fainting spells" in which bladder or bowel control is lost, followed by extreme fatigue
• episodes of blank staring in children
• brief periods of no response to questions or instructions
• sudden falls in a child for no apparent reason
• episodes of blinking or chewing at inappropriate times
• a convulsion with or without a fever

What Are The Different Kids Of Seizures. What They Look Like And What To Do.

Generalized Tonic Clonic (also called Grand Mal)
Absence (also called petit mal)
Simple Partial (also called Jacksonian) (also called Partial Sensory)
Complex Partial (also called psychomotor or temporal lobe)
Atonic Seizures (also called drop attacks)
Myoclonic Seizures
Infantile Spasms

GENERALIZED TONIC CLONIC (also called Grand Mal)

What It Looks Like
Sudden cry, fall, ridigity, followed by muscle jerks, shallow breathing or temporarily suspended breathing, bluish skin, possible loss of bladder control. Usually lasts a couple of minutes. Normal breathing then starts again. There may be some confusion and/or fatigue. Followed by return to full consciousness.

What It Is NOT
•    Heart attack.
•    Stroke.
•    Unknown but life threatening emergency.

What To Do
•    Look for medical identification.
•    Protect from nearby hazards.
•    Loosen tie or shirt collars.
•    Place folded jacket under head.
•    Turn on side to keep airway clear.
•    Reassure when consciousness returns.
•    If single seizure lasted less than 5 minutes ask if hospital evaluation is wanted.
•    If multiple seizures or if one seizure lasts more than 5 minutes, call an ambulance.
•    If person is pregnant, injured, or diabetic, call for aid at once.

What NOT To Do
•    Don't put any hard implement in mouth.
•    Don't try to hold tongue; it can't be swallowed.
•    Don't try to give liquids during or just after seizure.
•    Don't use artificial respiration unless breathing is absent after muscle jerks subside or unless water has been inhaled.
•    Don't restrain.

[Back to Different Kinds of Seizures]

ABSENCE (also called petit mal)

What It Looks Like
A blank stare, lasting only a few seconds, most common in children. May be accompanied by rapid blinking, some chewing movements of the mouth. Child having the seizures is unaware of what's going on during the seizure, but quickly returns to full awareness once it has stopped. May result in learning difficulties if not recognized and treated

What It Is NOT
•    Daydreaming.
•    Lack of attention.
•    Deliberately ignoring adult instructions.

What To Do
•    No first aid necessary, but medical evaluation should be recommended.

[Back to Different Kinds of Seizures]

SIMPLE PARTIAL (also called Jacksonian) (also called Partial Sensory)

What It Looks Like
Jerking begins in fingers or toes. Can't be stopped by patient, but patient stays awake and aware. Jerking may proceed to involve hand, arm and sometimes spreads to whole body and becomes a convulsive seizure.
Partial sensory seizures may not be obvious to an onlooker. Patient experiences a distorted environment. May see or hear things that aren't there. May feel unexplained fear, sadness, anger, or joy. May have nausea, experience odd smells and have a generally "funny" feeling in the stomach.

What It Is NOT
•    Acting out.
•    Bizarre behavior.
•    Hysteria.
•    Mental illness.
•    Psychosomatic illness.
•    Parapsychological or mystical experience.

What To Do
•    No first aid necessary unless seizure becomes convulsive, then first aid as above.
•    No immediate action needed other than reassurance and emotional support.
•    Medical evaluation should be recommended.

[Back to Different Kinds of Seizures]

COMPLEX PARTIAL (also called psychomotor or temporal lobe)

What It Looks Like
Usually starts with blank stare, followed by chewing, followed by random activity. Persons appear unaware of surroundings, may seem dazed and mumble. Unresponsive. Actions clumsy, not directed. May pick at clothing, pick up objects, try to take clothes off. May run, appear afraid. May struggle or flail at restraint. Once pattern established, same set of actions usually occur with each seizure. Lasts a few minutes, but post-seizure confusion can last substantially longer. No memory of what happened during seizure period.

What It Is NOT
•    Drunkenness.
•    Intoxication on drugs.
•    Mental illness.
•    Disorderly conduct.

What To Do
•    Speak calmly and reassuringly to patient and others.
•    Guide gently away from obvious hazards.
•    Stay with person until completely aware of environment.
•    Offer to help getting home.

What Not To Do
•    Don't grab hold unless sudden danger (such as a cliff edge or an approaching car) threatens.
•    Don't try to restrain.
•    Don't shout.
•    Don't expect verbal instructions to be obeyed.

[Back to Different Kinds of Seizures]

ATONIC SEIZURES (also called drop attacks)

What It Looks Like
A child or adult suddenly collapses and falls. After 10 seconds to 1 minute he recovers, regains consciousness, and can stand and walk again.

What It Is NOT
•    Clumsiness.
•    Normal childhood "stage".
•    Child: Lack of good walking skills.
•    Adult: Acute illness, drunkenness.

What To Do
•    No first aid needed (unless injured during fall), but the child should be given a thorough medical evaluation.

[Back to Different Kinds of Seizures]

MYOCLONIC SEIZURES

What It Looks Like
Sudden brief, massive muscle jerks that may involve the whole body or parts of the body. May cause a person to spill what they were holding or fall off a chair.

What It Is NOT
•    Clumsiness.
•    Poor coordination.

What To Do
•    No first aid needed, but should be given a thorough medical evaluation.

[Back to Different Kinds of Seizures]

INFANTILE SPASMS

What It Looks Like
These are quick, sudden movements that start between 3 months and 2 years. If a child is sitting up, the head will fall forward, and the arms will flex forward. If lying down, the knees will be drawn up, with arms and head flexed forward as if the baby is reaching for support.

What It Is NOT
•    Normal movements of the baby.
•    Colic.

What To Do
•    No first aid, but prompt medical evaluation is needed.

[Back to Different Kinds of Seizures]

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 manage your seizures.

What Can I Expect From My Neurologist Or Epileptologist?
The epilepsy specialist will work with your primary doctor to:
1.    Verify that seizures are epileptic in nature.
2.    Define seizure types and the epilepsy syndrome.
3.    Prove the likely cause of epileptic seizures and stop trigger factors
4.    Establish an early treatment plan based on #1 to #3 and discussions with the patient and family.
5.    Monitor seizure control and recognize adverse effects of seizures and treatment on quality of life.
6.    If first treatment plan does not work, explore other treatment options.

What Are Some Of The Possible Treatment Options?
There are an increasing number of treatment options. However, there is still no cure for seizures. To differing degrees, all the treatment options carry varying degrees of risk and side-effect.
For many years, antiepileptic drugs (phenobarbital, phenytoin [Dilantin], valproate [Depakote], and carbamazepine [Tegretol]) were the only drugs available. Since 1993, other antiepileptic drugs have been approved. These include felbamate [Felbatol], topiramate [Topamax], lamotrigine [Lamictal], an improved Tegretol now known as Tegretol XR and then Trileptol, and leviteracetam [Keppra].

The ketogenic diet is an old and a new treatment option. It has been used in the past and has now found new support and use primarily as a result of advocacy work by the Charlie Foundation and the desperate pleas of parents for more successful treatment options for their children.

Surgery is still 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 patient (if possible) and the family members.

Vagus Nerve Stimulation (VNS) is a kind of therapy that fights seizures by sending small pulses of electrical energy from an implanted battery to a large nerve in the neck.

If you want more information about these various treatment options, please contact us at (800) 564-0445.

What Is The Psychosocial Impact?
People with controlled epilepsy are limited more often by public perceptions and stereotypes than by the disorder itself. People with epilepsy are sometimes sensitive to public misperceptions. Many people with epilepsy often refrain from seeking out therapies that could improve their quality of life, because they feel they will invariably face discrimination.  Much has been done, but much remains to be done in this area.
 
What Are Pseudoepileptic Or Psychogenic Seizures?
An audience is usually present during hysterical or psychogenic seizures. Consciousness is preserved, amnesia is absent or patchy, and movements that simulate epileptic convulsions do not have tonic-clonic phases or in-phase clonic movements of the upper extremities. Movements are out of phase, chaotic, and bizarre without stereotype. Side-to-side head movements are observed in 1/3 of patients and forward pelvic thursting in almost 1/2 of those experiencing psychogenic seizures. The attack ends abruptly with the patient alert and showing no postictal tiredness. A prior psychiatric history is usually present; psychogenic seizures are seldom the sole symptom and sign. Both psychogenic seizures and epileptic seizures can exist together in the same patient. An EEG and CCTV-EEG monitoring can be useful in differentiating the two.

What About SUDEP And Death In Epilepsy?
There are two type of mortality in epilepsy: accidents and sudden unexplained death (SUDEP).

Accidents 
Accidents are common and for the most part preventable.  Accidents arise directly from the effects of seizures, such as accidents during swimming or driving.  Common sense usually prevents accidents.  Swim with a buddy system.  Tell your friend who swims with you that you might have a seizure and what to do if that happens – help you out of the pool or waves and lay you down on the ground on your side to recover.  You need a trustworthy friend who is vigilant.

Don’t drive unless you are sure that you will not have another seizure behind the wheel.  Your neurologist can help you with this.  Your neurologist can usually predict your chance of having another seizure by calculating from the times you have had a seizure and your longest seizure-free interval over the last few years.  This is an important calculation since it is an important goal to drive and to drive safely.  The DMV in California is enlightened due to the efforts of the EFA.  The DMV usually will certify a person to drive if it is safe.  Your neurologist or epileptologist can communicate with the DMV to help you in this regard.

Another accident which tends to occur is suffocation in a pillow in bed during a generalized tonic-clonic (grand mal, convulsion).  If you have generalized tonic clonic seizures, then use a roll-type pillow, one which is firm and which cannot suffocate you.  Try it out, that is, try to put your face in the pillow and see if you can still breathe.  If you can, then the pillow is safe for you to use.

SUDEP
Sudden unexplained death in epilepsy (SUDEP) is a totally different problem and different cause of mortality in epilepsy.  It is a serious problem and occurs mostly in intractable epilepsy, epilepsy which is not controlled by medication.  It is related to the severity of the epilepsy and its risk can be reduced by reducing the number and intensity of the seizures.

This is why it is a standard of care recommendation that if a person’s seizures are not controlled in two years, they should be referred to a comprehensive epilepsy center.  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.

Major risk factors for SUDEP are: more than three (3) generalized tonic-clonic seizures per year, more than two (2) anticonvulsant medications required to treat the seizures or moderately severe learning disability.  Each of these is an independent risk factor.  For instance, just having 3 generalized tonic-clonic seizures per year in and of itself increases the risk of SUDEP.

In summary, most of the mortality in epilepsy is related to specific causes, each of which has a treatment.  If you have epilepsy which is uncontrolled and are at higher risk for mortality in epilepsy, it is important to seek comprehensive epilepsy care.

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Facts And Figures About Epilepsy And Seizures - More Common Than You Think

Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke.¹ Epilepsy is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.²

Epilepsy is not a single entity but a family of more than 40 syndromes³ that affects more than 3 million people in the U.S.⁴ and 50,000,000, worldwide.⁵
 
Epilepsy strikes most often among the very young and the very old, although anyone can get it at any age. In the U.S., it currently affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated.⁶

The number of cases in the elderly is beginning to soar as the baby boom generation approaches retirement age. Currently more than 570,000 adults age 65 and above in the U.S. have the condition.⁷

Epilepsy imposes an annual economic burden of $15.5 billion⁸ on the nation in associated health care costs and losses in employment, wages and productivity.

The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is 24 times greater.⁹
 
This year another 200,000 people in the U.S.¹⁰ will be diagnosed with epilepsy and an estimated 25,000 to 50,000 will die of seizures and related causes,¹¹ including status epilepticus (non-stop seizures), sudden unexpected death in epilepsy (SUDEP), drowning and other accidents.
 
Epilepsy and its treatment produce a health-related quality of life – measured in days of activity limitation, pain, depression, anxiety, reduced vitality and insufficient sleep or rest – similar to arthritis, heart problems, diabetes and cancer.¹²

Thirty to 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment.¹³

Of major chronic medical conditions, epilepsy is among the least understood even though one in three adults knows someone with the disorder.¹⁴
 
Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into the mouth.¹⁵

The leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance.¹⁶

Epilepsy is prevalent among other disability groups such as autism (25.5%), cerebral palsy (13%), Down’s syndrome (13.6%), and mental retardation (25.5%). For people with both cerebral palsy and mental retardation the prevalence is (40%).¹⁷

The association between epilepsy and depression is especially strong. More than one of every three persons with epilepsy are also affected by the mood disorder, and people with a history of depression have a 3 to 7 times higher risk of developing epilepsy.¹⁸

Some people with epilepsy do not even know they have it, having been told they have a “seizure disorder” instead. This unfortunate euphemism arose because of the historical stigma associated with epilepsy, which the Epilepsy Foundation and others have fought to dispel.¹⁹

It is 14 years on average between the onset of epilepsy and surgical intervention for seizures uncontrollable by medication. American physicians may be unaware of the safety and efficacy of epilepsy surgery, making it among the most underutilized of proven effective therapeutic interventions in the field of medicine.²⁰

Despite all of these troubling facts, epilepsy remains among the least understood neurological disorders.

Notes to Facts & Figures About Epilepsy and Seizures – More Common Thank You Think:
1.     Hauser, A. Epidemiology of seizures and epilepsy in the elderly In: Rowan A, Ramsay R, eds. Seizures and epilepsy in the elderly. Boston:Butterworth-Heinemann, 1997:7-18.
2.     Cerebral palsy (764,000), multiple sclerosis (350,000 – 500,000), Parkinson’s disease (1.5 million) equal 2,614,000 – 2,764,000.
3.     NINDS epilepsy information web page.
4.     Projection based on Begley, CE, et al. The Cost of Epilepsy in the United States: An Estimate from Population-Based Clinical and Survey Data. Epilepsia 41(3):342-351, 2000 and U.S. Census Bureau 2005 population estimate of 295,200,000.
5.      From World Health Organization and Out of the Shadows Campaign.
6, 7.    See note 4 above.
8.      Begley, op.cit. Reported cost of $12.5 million for prevalent cases in 1995 is converted here to 2004 dollar value using Bureau of Labor Statistics automated online constant dollars conversion calculator.
9.      Ficker, DM. Sudden Unexpected Death and Injury in Epilepsy. Epilepsia, 41(Suppl.2): S7-S12, 2000.
10.     See note 4 above.
11.     Data from DeLorenzo, et al, Virginia Medical College (22,000 – 42,000 annual deaths from status epilepticus) to which an assumed increase from SUDEP, accidents, and other direct causes are added. Note that it is expressed in terms of “deaths due to           seizures” rather than “deaths due to epilepsy,” as half of status cases occur in people with no prior history of seizures or epilepsy.
12.     From Centers for Disease Control and Prevention, MMWR 2000:50:25-35 in JAMA, Feb 21, 2001 – Vol. 285, No. 7.
13.     The prevalence of intractable epilepsy ranges from less than 25% to over 44% dependant on the source. (A figure of 44% is citedin the Foundation’s National Cost of Epilepsy Study.) The range is narrowed in this fact sheet to simplify the conflicting      reports.
14.     Kobau R, Price P. Knowledge of Epilepsy and Familiarity with This Disorder in the U.S. Population: Results from the 2002 HealthStyles Survey. Epilepsia, 44(11):1449-1454, 2003.
15.     Repeated surveys by the Epilepsy Foundation, the previously cited CDC report, and numerous other surveys have documented the low level of public knowledge about seizures and epilepsy, including persistent misconceptions about seizure first aid.
16.     Morrell MD, Pedley, TA. “The Scarlet E”: Epilepsy is still a burden. Neurology, 2000:54:1882-1883. The major portion of advocacy activity conducted by the Epilepsy Foundation and its local affiliates focus on discriminatory issues and practices.
17.     McDermott S, Moran R. Prevalence of Epilepsy in Adults with Mental Retardation and Related Disabilities in Primary Care. American Journal on Mental Retardatio. January; 2005 – Vol. 10, No. 1:48-56.
18.     Kanner A, Jobe PC, Ettinger A. In presentations given at the American Association for the Advancement of Science Annual Conference, March 9, 2005.
19.     Epilepsy Foundation, Professional Advisory Board.
20.     Engel,JR Jr. A Greater Role for Surgical Treatment of Epilepsy: Why and When? In Epilepsy Currents, Vol.3, No.2 (March/April) 2003 pp. 37-40.

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Myths That Lead To Misunderstanding About Epilepsy

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Seizure First Aid

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A Few Helpful Tips Pertaining To Treatment And Living With Epilepsy

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Other Information

How do I respond to problems with my Health Maintenance Organization (HMO) or managed care insurance plan?
Consumers for Quality Care, a health care watchdog group, offers these tips on dealing with an HMO:

• Understand that employers prepay HMOs a fixed, monthly amount for every patient under the HMO's care, whether or not treatment is provided. In turn, most HMOs pay doctors and hospitals a fixed pool of money for their patients, regardless of how much the treatment costs. The less care a patient receives, the more the HMO, doctor and hospital profit. Under this profit-driven system, patients must protect themselves to ensure that they receive high quality health care.

• Write everything down. Bring a notepad and pencil to all medical facilities and take notes on what your doctor tells you. This will help to keep track of your care, catch any errors and provide a record should there be a question of inappropriate treatment.

• If you are denied care, ask for the decision in writing. You will need a record of the denial if you want to dispute it. Memorialize in written correspondence all conversations if it becomes apparent that you are not receiving cooperation.

• Appeal a treatment denial to regulators. HMOs are regulated by the California Department of Corporations, which has a consumer complaint hotline (800/400-0815). In a nonemergency situation, a patient must first request treatment in writing from his or her HMO. If the HMO does not respond in 60 days or denies the request, the patient can then lodge a complaint with the state. In an emergency case, a complaint can be filed immediately with the department. Also, MediCare and Medi-Cal recipients can take a complaint to the federal Health Care Financing Administration. Seeking the help of an attorney at this stage may also be appropriate.

• Find allies in the medical profession. When medical experts advocate care, HMOs find it harder to deny treatment. Insist on a second or third opinion from a qualified professional outside the HMO network. If you HMO won't pay for a second opinion, pay out of your own pocket. It could save your life.

• Ask how your doctor is paid. Medicare recipients are entitled to see a summary of their physician's contract with the HMO, which details any financial incentives to withhold treatment. File a complaint with California's medical board if you believe your doctor is withholding treatment for his or her own pecuniary gain (800/633-2322).

• Never take "no" for an answer. Always ask if there are treatment options available other than those the HMO recommends. Enlist the help of your employer's personnel department if you get your health care through your job. (used with permission from "Consumers for Quality Care")
 
For more information and more questions answered, please visit the "Links" section. Please let us know what issues and questions are important to you in your personal life and in your practice. We will add more issues and questions to the website periodically.

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Epilepsy Foundation of San Diego County
www.EpilepsySanDiego.org

Epilepsy Foundation of Northern California
www.EpilepsyNorCal.org

EPILEPSY.COM                                                                                              
www.Epilepsy.com

Citizens United for Research in Epilepsy                                                             
www.CureEpilepsy.org

American Epilepsy Society                                                                                
www.AESnet.org

Epilepsy Foundation (National Office)                                                                  
www.EpilepsyFoundation.org

School Information
A joint project of UCB and the national Epilepsy Foundation (National Office)
www.epilepsyclassroom.com


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