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Information Frequently Asked Questions ( FAQ)

 
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Welcome to my compendium website about Epilepsy Seizure Disorders with Information and Frequently Asked Questions ( FAQ), My friend Carlo in PA sent me a most depressing letter indicating he had be diagnosed with a seizure disorder that will totally change his life because he won't be able to drive the 300 miles he had been doing for his job.  I decided to research as much on seizure disorders and am placing the data in one compendium spot here to share with others. I hope you benefit from finding something about epilepsy seizure disorders here. Let me know if it helps. Brian Nelson Houston, Tx  713-467-3025. Click: E-mail me 

Important words found on this website:  Epilepsy Seizure Disorder, FAQ, Information, Diagnosis, Epidemiology, Treatment, History, Stigma, Epilepsies, Pharmacologic, Surgical, symptoms, Doctor, Tests, Spell, Family, Procedure,  EEG, Electrodes, Ambulatory, Neuroimaging, Computed Tomography, Cat Scan, MRI, Meg, Test, Ultrasound, Therapies, Ketogenic Diet, Medications,  Brivaracetam, Keppra, Rufinamide, Myoclonus, Surgery, Preoperative, Brain Mapping, Clinical Trials, Vagus Nerve Stimulation,

 

 


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Epilepsy
Epilepsy (sometimes referred to as a seizure disorder) is a common chronic neurological condition that is characterized by recurrent unprovoked epileptic seizures.[1][2] These seizures are transient signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain.[3] It affects approximately 50 million people worldwide.[4] Epilepsy is usually controlled, but not cured, with medication – although surgery may be considered in difficult cases. Not all epilepsy syndromes are lifelong, for example some are confined to particular stages of childhood.
 

Contents

  Classification

Epilepsies are classified five ways:

  1. By their first cause (or etiology).
  2. By the observable manifestations of the seizures, known as "semiology."
  3. By the location in the brain where the seizures originate.
  4. As a part of discrete, identifiable medical syndromes.
  5. By the event that triggers the seizures, as in primary reading epilepsy.

In 1981, the International League Against Epilepsy (ILAE) proposed a classification scheme for individual seizures that remains in common use.[5] This classification is based on observation (clinical and EEG) rather than the underlying pathophysiology or anatomy and is outlined later on in this article. In 1989, the ILAE proposed a classification scheme for epilepsies and epileptic syndromes.[6] This can be broadly described as a two-axis scheme having the cause on one axis and the extent of localisation within the brain on the other. Since 1997, the ILAE have been working on a new scheme that has five axes: ictal phenomenon, seizure type, syndrome, etiology and impairment.[7]

  Diagnosis

The diagnosis of epilepsy requires the presence of recurrent, unprovoked seizures; accordingly, it is usually made based on the medical history. EEG, brain MRI, SPECT, PET, and magnetoencephalography may be useful to discover an etiology for the epilepsy, discover the affected brain region, or classify the epileptic syndrome, but these studies are not useful in making the initial diagnosis.

Long-term video-EEG monitoring for epilepsy is the gold standard for diagnosis, but it is not routinely employed owing to its high cost, low availability and inconvenience.

Convulsive or other seizure-like activity, non-epileptic in origin, can be observed in many other medical conditions. These non-epileptic seizures can be hard to differentiate and may lead to misdiagnosis.

Epilepsy covers conditions with different aetiologies, natural histories and prognoses, each requiring different management strategies. A full medical diagnosis requires a definite categorisation of seizure and syndrome types.[8]

  Causes

The cause of an individual's epilepsy can be divided into two categories: symptomatic and idiopathic.[6] Symptomatic epilepsies originate due to some structural or metabolic abnormality in the brain. This may be the result of:

The term cryptogenic is used to describe epilepsy where the cause is suspected to be symptomatic but the underlying illness or damage has not been identified.

The term idiopathic means "a disorder unto itself", and not "cause unknown".[7] No other condition has been implicated as the cause of the epilepsy. Idiopathic epilepsies are often but not exclusively genetic and generalized - for example Juvenile Absence Epilepsy.

  Triggers

The diagnosis of epilepsy requires that the seizures be "unprovoked", with the implication that the provocant is assumed to be something obviously harmful. However, in some epilepsy syndromes the provocant can reasonably be considered to be part of normal daily life. Examples of these normal provocants include reading, hot water on the head, hyperventilation, and flashing or flickering lights, or even certain food types. This last provocant is a special type of reflex epilepsy called photosensitive epilepsy. Although assumed to be a common trigger for epilepsy, amongst both patients and the public, only around 5% of people with epilepsy are affected by flickering lights.

Certain environmental factors can lead to an increased likelihood of seizures in someone with epilepsy or in certain syndromes. For example:

  • being asleep
  • the transition between sleep and wakefulness
  • tiredness
  • illness
  • constipation
  • menstruation
  • stress
  • alcohol consumption

  Epidemiology

The most common ages of incidence are under the age of 18 and over the age of 65. It has been estimated that about 1% of the population meets the diagnostic criteria for epilepsy at any given time, but some theorize that the prevalence may be much higher in fact.

  Seizure types

Main article: Seizure types

Seizure types are organised firstly according to whether the source of the seizure within the brain is localised (partial or focal onset seizures) or distributed (generalised seizures). Partial seizures are further divided on the extent to which consciousness is affected. If it is unaffected, then it is a simple partial seizure; otherwise it is a complex partial seizure. A partial seizure may spread within the brain - a process known as secondary generalisation. Generalised seizures are divided according to the effect on the body but all involve loss of consciousness. These include absence (petit mal), myoclonic, clonic, tonic, tonic-clonic (grand mal) and atonic seizures.

  Seizure syndromes

There are many different epilepsy syndromes, each presenting with its own unique combination of seizure type, typical age of onset, EEG findings, treatment, and prognosis. Below are some common seizure syndromes:

  • Infantile spasms (West syndrome) is associated with brain development abnormalities, tuberous sclerosis, and perinatal insults to the brain. It affects infants (as implied by its name), which by definition is between 30 days to 1 year of life. It carries a poor prognosis such that only 5-10% of children with infantile spasms will develop normal to near-normal function, while more than two-thirds will have severe deficits. The typical seizures are characterized by sudden flexor and extensor spasms of head, trunk, and extremities. The key EEG finding in these patients is a hypsarrhythmia, or a high-voltage slow wave with multifocal spikes. The first line treatment for these patients is adrenocorticotropic hormone (ACTH or corticotropin) since traditional antiepileptic drugs generally cannot adequately control seizure activity. Vigabatrin is also used in many countries, and is particularly effective when tuberous sclerosis is the cause of seizures.
Generalized 3 Hz spike and wave discharges in EEG

Generalized 3 Hz spike and wave discharges in EEG

  • Childhood absence epilepsy affects children between the ages of 4 and 12 years of age. These patients have recurrent absence seizures that can occur hundreds of times a day. On EEG, one finds the stereotyped generalized 3 Hz spike and wave discharges. A subset of these patients will also develop generalized tonic-clonic seizures. This condition carries a fairly good prognosis in that these children do not usually show cognitive decline or neurological deficits. First line treatment for pure absence seizures is ethosuximide. If patients do not respond or have mixed seizures along with their absence seizures, then valproic acid can be used.
  • Benign focal epilepsies of childhood The most common syndromes comprising the benign focal epilepsies of childhood include Benign Childhood Epilepsy with Centro-Temporal Spikes (or benign rolandic epilepsy), and Benign Childhood Epilepsy with Occipital Paroxysms. Benign rolandic epilepsy begins in children between the ages of 4 and 13 years. Apart from their seizure disorder, these patients are otherwise normal. Seizures occur at night and sleep promotes secondary generalization. As such, parents only report generalized seizures because focal manifestations are often subtle and go unnoticed. Between seizures, patients have a stereotyped EEG pattern that includes di- or triphasic sharp waves over the central-midtemporal (Rolandic) regions. Prognosis is uniformly good with seizures disappearing by adolescence. There is no consensus on the first line treatment, however most cases respond well to most anticonvulsants.
  • Juvenile myoclonic epilepsy (JME) begins in patients aged 8 to 20 years. These patients have normal IQ and are otherwise neurologically intact. JME is thought to be genetic, though that is not to say that JME will show in immediate family members. The seizures are morning myoclonic jerks often with generalized tonic-clonic seizures that occur just after waking. 'Petit mal' or absence seizures are less common in cases of JME, but are known to occur more often in young girls. EEG readings reveal generalized spikes with 4-6 Hz spike wave discharges and multiple spike discharges. Interestingly, these patients are often first diagnosed when they have their first generalized tonic-clonic seizure later in life when they experience sleep deprivation (e.g., freshman year in college after staying up late to study for exams). Alcohol is a major contributing factor and those with severe JME should monitor their intake of units. Valproic acid is the first line treatment, whereas carbamazepine can actually worsen symptoms. This condition is lifelong, thus patients must be taught appropriate sleep hygiene to prevent generalized tonic-clonic seizures. The severity of JME varies from person to person - some will experience full blown tonic-clonic seizures regularly, others will suffer only under sufficient stress from lack of sleep and intoxication.
  • Temporal lobe epilepsy is the most common epilepsy of adults. In most cases, the epileptogenic region is found in the mesial temporal structures (e.g., the hippocampus, amygdala, and parahippocampal gyrus). Seizures begin in late childhood and adolescence. There is an association with febrile seizures in childhood, and some studies have shown herpes simplex virus (HSV) DNA in these regions, suggesting that perhaps this epilepsy has an infectious etiology. Most of these patients have complex partial seizures sometimes preceded by an aura. If the patient does not respond sufficiently to medical treatment, surgery may be considered.
  • Frontal lobe epilepsy
  • Lennox-Gastaut syndrome
  • Occipital lobe epilepsy

  Treatment

Epilepsy is usually treated with medication prescribed by a physician; primary caregivers, neurologists, and neurosurgeons all frequently care for people with epilepsy. In some cases the implantation of a stimulator of the vagus nerve, or a special diet can be helpful. Neurosurgical operations for epilepsy can be palliative, reducing the frequency or severity of seizures; or, in some patients, an operation can be curative.

  Responding to a seizure

In most cases, the proper emergency response to a generalized tonic-clonic epileptic seizure is simply to prevent the patient from self-injury by moving him or her away from sharp edges, placing something soft beneath the head, and carefully rolling the person into the recovery position to avoid asphyxiation. In some cases the person may seem to start snoring loudly following a seizure, before coming to. This merely indicates that the person is beginning to breathe properly and does not mean he or she is suffocating. Should the person regurgitate, the material should be allowed to drip out the side of the person's mouth by itself. If a seizure lasts longer than 5 minutes, or if the seizures begin coming in 'waves' one after the other - then Emergency Medical Services should be contacted immediately. Prolonged seizures may develop into status epilepticus, a dangerous condition requiring hospitalization and emergency treatment.

Objects should never be placed in a person's mouth by anybody - including paramedics - during a seizure as this could result in serious injury to either party. Despite common folklore, it is not possible for a person to swallow their own tongue during a seizure. However, it is more likely the person will bite their own tongue.

After a seizure, it is typical for a person to be exhausted and confused. Often the person is not immediately aware that they have just had a seizure. During this time one should stay with the person - reassuring and comforting them - until they appear to act as they normally would. Seldom during a seizure the person may have soiled themselves. In some instances the person may also vomit after coming to. People should not eat or drink until they have returned to their normal level of awareness, and they should not be allowed to wander about unsupervised. Many patients will sleep deeply for a few hours after a seizure - this is common for those having just experienced a more violent type of seizure such as a tonic-clonic. In about 50% of people with epilepsy, headaches may occur after a seizure. These headaches share many features with migraines, and respond to the same medications.

It is helpful if those present at the time of a seizure make note of how long and how severe the seizure was. It is also helpful to note any mannerisms displayed during the seizure. For example, the individual may twist the body to the right or left, may blink, might mumble nonsense words, might pull at clothing. Any observed behaviors, when relayed to a neurologist, may be of help in diagnosing the type of seizure which occurred.

  Pharmacologic treatment

Main article: Anticonvulsant

Some medications can be taken daily in order to prevent seizures altogether or reduce the frequency of their occurrence. These are termed "anticonvulsant" or "antiepileptic" drugs (sometimes AEDs). All such drugs have side effects that are idiosyncratic and others that are dosage-dependent. It is not possible to predict who will suffer from side effects or at what dose the side effects will appear.

Some people with epilepsy will experience a complete remission when treated with an anticonvulsant medication. If this does not occur, the dose of medication may be increased, or another medication may be added to the first. The general strategy is to increase the medication dose until either the seizures are controlled, or until dose-limiting side effects appear; at which point the medication dose is reduced to the highest amount that did not produce undesirable side effects.

Serum levels of AEDs can be checked to determine medication compliance and to assess the effects of drug-drug interactions; some physicians do not use serum levels to fine tune medication, but other physicians believe that serum levels provide excellent data for tailoring medications to suit an individual's specific and relatively variable body chemistry. For example, therapeutic doses (the dose at which seizures are controlled and side effects are minimal and tolerable) may vary widely from among patients. The therapeutic ranges provided by pharmaceutical companies are only ranges and by using blood serum levels and seizures diaries, better seizure control can sometimes be reached. In some cases (such as a seizure flurry) serum levels can be useful to know if the level is very high or very low.

If a person's epilepsy cannot be brought under control after adequate trials of two or three (experts vary here) different drugs, that person's epilepsy is generally said to be 'medically refractory.'

Various drugs may prevent seizures or reduce seizure frequency: these include carbamazepine (common brand name Tegretol), clobazam (Frisium), clonazepam (Klonopin), ethosuximide (Zarontin), felbamate (Felbatol), fosphenytoin (Cerebyx), flurazepam (Dalmane), gabapentin (Neurontin), lamotrigine (Lamictal), levetiracetam (Keppra), oxcarbazepine (Trileptal), mephenytoin (Mesantoin), phenobarbital (Luminal), phenytoin (Dilantin), pregabalin (Lyrica), primidone (Mysoline), sodium valproate (Epilim), tiagabine (Gabitril), topiramate (Topamax), valproate semisodium (Depakote, Epival), valproic acid (Depakene, Convulex), and vigabatrin (Sabril).

Other drugs are commonly used to abort an active seizure or interrupt a seizure flurry; these include diazepam (Valium) and lorazepam (Ativan). Drugs used only in the treatment of refractory status epilepticus include paraldehyde (Paral) and pentobarbital (Nembutal).

Bromides were the first of the effective anticonvulsant pure compounds, but are no longer used in humans[9] due to their toxicities and low efficacy.

 Surgical treatment

Surgical treatment can be an option for epilepsy when an underlying brain abnormality, such as a benign tumor or an area of scar tissue (e.g. hippocampal sclerosis) can be identified. The abnormality must be removable by a neurosurgeon.

Surgery is usually only offered to patients when their epilepsy has not been controlled by adequate attempts with multiple medications. Before surgery is offered, the medical team conducts many tests to assess whether removal of brain tissue will result in unacceptable problems with memory, vision, language or movement, which are controlled by different parts of the brain. These tests usually include a neuropsychological evaluation, which sometimes includes an intracarotid sodium amobarbital test (Wada test) - although this invasive procedure is being replaced by non-invasive functional MRI in many centres. Resective surgery, as opposed to palliative, successfully eliminates or significantly reduces seizures in about 50-90% of the patients who undergo it (the exact percentage depends on the particulars of the case and surgeon in question.) Many patients decide not to undergo surgery owing to fear or the uncertainty of having a brain operation.

The most common form of resective surgical treatment for epilepsy is to remove the front part of either the right or left temporal lobe. A study of 48 patients who underwent this operation, anterior temporal lobectomy, between 1965 and 1974 determined the long-term success of the procedure. Of the 48 patients, 21 had had no seizures that caused loss of consciousness since the operation. Three others had been free of seizures for at least 19 years. The rest had either never been completely free of seizures or had died between the time of the surgery and commencement of the study.[10]

Palliative surgery for epilepsy is intended to reduce the frequency or severity of seizures. Examples are callosotomy or commissurotomy to prevent seizures from generalizing (spreading to involve the entire brain), which results in a loss of consciousness. This procedure can therefore prevent injury due to the person falling to the ground after losing consciousness. It is performed only when the seizures cannot be controlled by other means. Resective surgery can be considered palliative if it is undertaken with the expectation that it will reduce but not eliminate seizures.

Hemispherectomy is a drastic operation in which most or all of one half of the cerebral cortex is removed. It is reserved for people suffering from the most catastrophic epilepsies, such as those due to Rasmussen syndrome. If the surgery is performed on very young patients (2-5 years old), the remaining hemisphere may acquire some rudimentary motor control of the ipsilateral body; in older patients, paralysis results on the side of the body opposite to the part of the brain that was removed. Because of these and other side effects it is usually reserved for patients who have exhausted other treatment options.

  Other treatment

Ketogenic diets may occasionally be effective in controlling some types of epilepsy; although the mechanism behind the effect is not fully understood, shifting of pH towards a metabolic acidosis and alteration of brain metabolism may be involved. Ketogenic diets are high in fat and extremely low in carbohydrates, with intake of fluids often limited. This treatment, originated as early as the 1920s at Johns Hopkins Medical Center, was largely abandoned with the discovery of modern anti-epileptic drugs, but recently has returned to the anti-epileptic treatment arsenal. Ketogenic diets are sometimes prescribed in severe cases where drugs have proven ineffective.

Vagus nerve stimulation is a recently developed form of seizure control which uses an implanted electrical device, similar in size, shape and implant location to a heart pacemaker, which connects to the vagus nerve in the neck. Once in place the device can be set to emit electronic pulses, stimulating the vagus nerve at pre-set intervals and milliamp levels. Treatment studies have shown that approximately 50% of those treated in this fashion will show significant seizure reduction.

The Responsive Neurostimulator System (RNS) is currently undergoing clinical study prior to FDA approval. This system relies upon a device implanted just under the scalp. The leads attached to the device are implanted either on the brain surface or in the brain area itself and are located close to the area where the seizures are believed to start. When a seizure begins, an electrical shock is delivered to suppress it. This system is different from the VNS system in that the RNS relies on direct brain stimulation and the RNS is a responsive system. The VNS pulses at predetermined intervals previously set by medical personnel. The RNS system responds to detected signs that a seizure is about to begin and can record events and allow customized response patterns which may provide a greater degree of seizure control.

A seizure response dog is a form of service dog that is trained to summon help or ensure personal safety when a seizure occurs. These are not suitable for everybody and not all dogs can be so trained. Rarely, a dog may develop the ability to sense a seizure before it occurs.[11]

A number of systematic reviews by the Cochrane Collaboration into treatments for epilepsy looked at acupuncture[12], psychological interventions[13], vitamins[14] and yoga[15] and found there is no reliable evidence to support the use of these as treatments for epilepsy. Further studies are needed on the subject.

  Pathophysiology

Mutations in several genes have been linked to some types of epilepsy. Several genes that code for protein subunits of voltage-gated and ligand-gated ion channels have been associated with forms of generalized epilepsy and infantile seizure syndromes.[16] Several ligand-gated ion channels have been linked to some types of frontal and generalized epilepsies. Epilepsy-related mutations in some non-ion channel genes have also been identified.

One interesting finding in animals is that repeated low-level electrical stimulation to some brain sites can lead to permanent increases in seizure susceptibility: in other words, a permanent decrease in seizure "threshold." This phenomenon, known as kindling (by analogy with the use of burning twigs to start a larger fire) was discovered by Dr. Graham Goddard in 1967. Chemical stimulation can also induce seizures; repeated exposures to some pesticides have been shown to induce seizures in both humans and animals. One mechanism proposed for this is called excitotoxicity. The roles of kindling and excitotoxicity, if any, in human epilepsy are currently hotly debated.

  History and stigma

The word epilepsy is derived from the Greek epilepsia, which in turn can be broken in to epi- (upon) and lepsis (to take hold of, or seizure)[17] In the past, epilepsy was associated with religious experiences and even demonic possession. In ancient times, epilepsy was known as the "Sacred Disease" because people thought that epileptic seizures were a form of attack by demons, or that the visions experienced by persons with epilepsy were sent by the gods. However, in many cultures, persons with epilepsy have been stigmatized, shunned, or even imprisoned; in the Salpętričre, the birthplace of modern neurology, Jean-Martin Charcot found people with epilepsy side-by-side with the mentally retarded, those with chronic syphilis, and the criminally insane. In Tanzania to this day, as with other parts of Africa epilepsy is associated with possession by evil spirits, witchcraft, or poisoning, and is believed by many to be contagious.[18] In ancient Rome, epilepsy was known as the Morbus Comitialis ('disease of the assembly hall') and was seen as a curse from the gods.

Stigma continues to this day, in both the public and private spheres, but polls suggest it is generally decreasing with time, at least in the developed world; Hippocrates remarked that epilepsy would cease to be considered divine the day it will be understood.[19]

  Legal implications

Most people diagnosed with epilepsy are forbidden by their local laws from operating vehicles. However, there are usually exceptions for those who can prove that they have stabilized their condition. Those few whose seizures do not cause impairment of consciousness, or whose seizures only arise from sleep, may be exempt from such restrictions, depending on local laws. There is an ongoing debate in bioethics over who should bear the burden of ensuring that an epilepsy patient does not drive a car or fly an airplane.

In the U.S., people with epilepsy can drive if their seizures are controlled with treatment and they meet the licensing requirements in their state. How long they have to be free of seizures varies in different states, but it is most likely to be between three months and a year.[20] [21] The majority of the 50 states place the burden on patients to report their condition to appropriate licensing authorities so that their privileges can be revoked where appropriate. A minority of states (including California) place the burden of reporting on the patient's physician. After reporting is carried out, it is usually the driver's licensing agency that decides to revoke or restrict a driver's license.

In the UK, it is the responsibility of the patient to inform the Driver and Vehicle Licensing Agency (DVLA) if they have epilepsy.[22] The DVLA rules are quite complex[23] , but in summary[24] , those continuing to have seizures or who are within 6 months of medication change may have their license revoked. A doctor who becomes aware that a patient with uncontrolled epilepsy is continuing to drive has, after reminding the patient of their responsibility, a duty to break confidentiality and inform the DVLA. The doctor should advise the patient of the disclosure and the reasons why their failure to notify the agency obliged the doctor to act.

  Important investigators of epilepsy

  See also

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All About Epilepsy & Seizures

There is a lot of information to know about epilepsy. Whether you're new to epilepsy or have known it for twenty years, the more information you have the stronger you'll be. By starting at the beginning, you will gain a basic foundation of knowledge about the disease, its treatments, and the ways it will affect your life. Once you learn about it, the next steps will be much easier and you can get on with living. Here you'll find information all about epilepsy and seizures, so send this to a friend, print it out and read it, and know that epilepsy.com is here to help.

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What is epilepsy?

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closedisorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.

The seizures in epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closemay be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.

What is a seizure?

BrainA seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeis a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

The seizures in epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closemay be related to a brain injury or a family tendency, but often the cause is completely unknown. The word "epilepsy" does not indicate anything about the cause or severity of the person's seizures.
If I have one seizure, does that mean I will get epilepsy?
About half of the people who have one seizure without a clear cause will have another one, usually within 6 months. You are twice as likely to have another seizure if you have a known brain injury or other type of brain abnormality. If you do have two seizures, there's about an 80% chance that you'll have more.

If your first seizure occurred at the time of an injury or infection in the brain, you are more likely to develop epilepsy than if you had not had a seizure in that situation.

EEG on MonitorMore seizures are also likely if your doctor finds abnormalities on a neurological examination; a set of tests of the functioning of your nervous system that is performed in the doctor's office.

Another thing that can help your doctor predict whether you will have more seizures is an EEG, electroencephalogram Electroencephalogram (EEG)A diagnostic test of brain electrical activity; helpful in diagnosing epilepsy.Close(e-LEK-tro-en-SEF-uh-LOG-ram), a test in which wires attached to your scalp record your brain waves. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy as someone who does not have those patterns.

Example of an Electroencephalogram

 

Normal EEG

Normal Adult Background

Epileptic EEG

Primary Generalized Epilepsy

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Symptoms of a seizure

A seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeis usually defined as a sudden alteration of behavior due to a temporary change in the electrical functioning of the brain, in particular the outside rim of the brain called the cortex. Below you will find some of the symptoms people with epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closemay experience before, during and after a seizure. Seizures can take on many different forms and seizures affect different people in different ways. It is not implied that every person with seizures will experience every symptom described below.

Seizures have a beginning, middle, and end
When an individual is aware of the beginning, it may be thought of as a warning or aura. AuraA warning before a seizure; a simple partial seizure occuring within seconds before a complex partial or secondarily generalized tonic-clonic seizure, or it may occur alone; also a warning before a migraine headache.Close On the other hand, an individual may not be aware of the beginning and therefore have no warning.

Sometimes, the warning or aura is not followed by any other symptoms. It may be considered a simple partial seizure Simple partial seizureAn epileptic seizure that involves only part of the brain and does not impair consciousness.Closeby the doctor.

The middle of the seizure may take several different forms. For people who have warnings, the aura may simply continue or it may turn into a complex partial seizure Complex partial seizureAn epileptic seizure that involves only part of the brain and impairs consciousness; often preceded by a simple partial seizure (aura, or warning).Closeor a convulsion. ConvulsionAn older term for a tonic-clonic seizure.Close For those who do not have a warning, the seizure may continue as a complex partial seizure or it may evolve into a convulsion.

The end to a seizure represents a transition from the seizure back to the individual’s normal state. This period is referred to as the “post-ictal period” (an ictus is a seizure) and signifies the recovery period for the brain. It may last from seconds to minutes to hours, depending on several factors including which part(s) of the brain were affected by the seizure and whether the individual was on anti-seizure medication. If a person has a complex partial seizure or a convulsion, their level of awareness gradually improves during the post-ictal period, much like a person waking up from anesthesia after an operation. There are other symptoms that occur during the post-ictal period and are detailed below.

Please note: Below is only a partial list, some people may experience other symptoms not listed below. These lists are meant to help patients communicate with their physicians.

Early seizure symptoms (warnings)

Sensory/Thought: Emotional: Physical: No warning:
  • Deja vu
  • Jamais vu
  • Smell
  • Sound
  • Taste
  • Visual loss or blurring
  • Racing thoughts
  • Stomach feelings
  • Strange feelings
  • Tingling feeling
  • Fear/Panic
  • Pleasant feeling
  • Dizziness
  • Headache
  • Lightheadedness
  • Nausea
  • Numbness
  • Sometimes seizures come with no warning

Seizure symptoms

Sensory/Thought: Emotional: Physical:
  • Black out
  • Confusion
  • Deafness/Sounds
  • Electric Shock Feeling
  • Loss of consciousness ConsciousnessState of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell.Close
  • Smell
  • Spacing out
  • Out of body experience
  • Visual loss or blurring
  • Fear/Panic
  • Chewing movements
  • Convulsion
  • Difficulty talking
  • Drooling
  • Eyelid fluttering
  • Eyes rolling up
  • Falling down
  • Foot stomping
  • Hand waving
  • Inability to move
  • Incontinence
  • Lip smacking
  • Making sounds
  • Shaking
  • Staring
  • Stiffening
  • Swallowing
  • Sweating
  • Teeth clenching/grinding
  • Tongue biting
  • Tremors
  • Twitching movements
  • Breathing difficulty
  • Heart racing

After-seizure symptoms (post-ictal)
 

Thought: Emotional: Physical:
  • Memory loss
  • Writing difficulty
  • Confusion
  • Depression and sadness
  • Fear
  • Frustration
  • Shame/Embarrassment
  • Bruising
  • Difficulty talking
  • Injuries
  • Sleeping
  • Exhaustion
  • Headache
  • Nausea
  • Pain
  • Thirst
  • Weakness
  • Urge to urinate/defecate
If you or someone you know has the symptoms listed above -- you are not alone. Below are personal stories by people who have either experienced or witnessed seizure symptoms.
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Who gets epilepsy?

Epilepsy can develop in any person at any age. 0.5% to 2% of people will develop epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeduring their lifetime. People with certain conditions may be at greater risk. (See "What causes epilepsy?")

About 2.7 million Americans have been treated for epilepsy in the past 5 years. That's 8 or 9 out of every 1,000 people. In other words, out of 60,000 people filling a big stadium, about 500 have epilepsy. More men than women have epilepsy.

When are people most likely to get epilepsy?
New cases of epilepsy are most common among children, especially during the first year of life. The rate of new cases gradually declines until about age 10, and then becomes stable. After age 55 or 60, the rate starts to increase, as people develop strokes, brain tumors, or Alzheimer's disease. (All of these disorders can cause epilepsy.)

Facts About Epilepsy
  • Up to 5% of the world’s population may have a single seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeat some time in their lives.
  • It is likely that around 60 million people in the world have epilepsy at any one time.
  • Children and adolescents are more likely to have epilepsy of unknown or genetic origin than adults.
  • Epilepsy can start at any age.
  • Recent studies show that seizures in up to 70% of children and adults with newly diagnosed epilepsy can be controlled with medications; however, many of these people experience treatment-related side effects.
  • Seizures in up to 30% of people with epilepsy do not respond to available medications.

What causes epilepsy?

Brain There is a fine balance in the brain between factors that begin electrical activity and factors that restrict it, and there are also systems that limit the spread of electrical activity. During a seizure, SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Close these limits break down, and abnormal electrical discharges can occur and spread to whole groups of neighboring cells at once. This linkage of electrical discharges creates a "storm" of electrical activity in the brain. This is a seizure. When a person has had at least two of these seizures, that's called epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close

How does epilepsy begin?
The reasons why epilepsy begins are different for people of different ages. But what's true for every age is that the cause is unknown for about half of everyone with epilepsy.

Children may be born with a defect in the structure of their brain, or they may suffer a head injury or infection that causes their epilepsy. Severe head injury is the most common known cause in young adults. In middle age, strokes, tumors, and injuries are more frequent. In people over 65, stroke is the most common known cause, followed by degenerative conditions such as Alzheimer's disease.

Why does it sometimes take years before someone with a brain injury experiences a seizure?
Often seizures do not begin immediately after a person has an injury to the brain. Instead, a seizure may happen many months later. We do not have a good explanation for this common observation, but scientists are actively researching this subject.

What are the risk factors?

Risk factors for epilepsy include:

  • Babies who are small for their gestational age
  • Babies who have seizures in the first month of life
  • Babies who are born with abnormal brain structures
  • Bleeding into the brain
  • Abnormal blood vessels in the brain
  • Serious brain injury or lack of oxygen to the brain
  • Brain tumors
  • Infections of the brain: abscess, meningitis, MeningitisA bacterial infection of the membranes surrounding the brain; often diagnosed by a spinal tap (lumbar puncture).Close or encephalitis
  • Stroke resulting from blockage of arteries
  • Cerebral palsy
  • Mental handicap
  • Seizures occurring within days after head injury ("early posttraumatic seizures")
  • Family history of epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeor fever-related seizures
  • Alzheimer's disease (late in the illness)
  • Fever-related (febrile) seizures that are unusually long
  • Use of illegal drugs such as cocaine

Mild head injuries, such as a concussion with just a very brief loss of consciousness, ConsciousnessState of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell.Close do not cause epilepsy.00

I don't think any of those risk factors apply to me!
Although the disorders and injuries on these lists help to explain many cases of epilepsy, more people with epilepsy don't have any of these factors apparent in their medical history. Medical historyThe account of a patient's disorder.Close Often we just don't know how epilepsy gets started.

Even though you may not know the cause of your epilepsy, you can help yourself by looking for factors (often called "triggers") that seem to make your seizures more frequent or more severe and then avoid them altogether or atleast reduce their effects.

Seizure-Provoking Factors

 
  • Missed medication
  • Lack of sleep
  • Illness (both with and without fever)
  • Severe psychological stress
  • Heavy alcohol use
  • Use of cocaine and other recreational drugs such as Ecstasy
  • Over-the-counter or prescription medications or supplements that decrease the effectiveness of seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines
  • Nutritional deficiencies: vitamins and minerals
  • The menstrual cycle

Is epilepsy inherited?

It may seem obvious that heredity (genetics) plays an important role in many cases of epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closein very young children, but it can be a factor for people of any age. For instance, not everyone who has a serious head injury (a clear cause of seizures) will develop epilepsy. Those who do develop epilepsy are more likely to have a history of seizures in their family. This family history suggests that it is easier for them to develop epilepsy than for others with no genetic predisposition.

Epilepsy in which the seizures begin from both sides of the brain at the same time is called primary generalized epilepsy. Primary generalized epilepsy is more likely to involve genetic factors than partial epilepsy, in which the seizures arise from a limited area of the brain.

Brother and SisterAre the brothers and sisters of children with epilepsy more likely to develop it?
Their risk is slightly higher than usual, not because they will "catch" it (that can't happen) but because there may be a genetic tendency in the family that makes seizures and epilepsy more likely. Even so, most of them will not develop epilepsy. Epilepsy is more likely to occur in a brother or sister if the child with epilepsy has primary generalized seizures. Depending on the type of epilepsy and the number of family members who are affected, only about 4% to 10% of the other children in the family will have epilepsy.

If I have epilepsy, will my children also have it?
Less than 2 people out of every 100 (2%) develop epilepsy at some point during their lifetime. The risk for children whose father has epilepsy is only slightly higher. If the mother has epilepsy and the father does not, the risk is still less than 5%. If both parents have epilepsy, the risk is a bit higher. Most children will not inherit epilepsy from a parent, but the chance of inheriting epilepsy is higher for some types.

If you have epilepsy, it is normal for you to be afraid that your children will have epilepsy too. However, a fear that your children will have epilepsy is not enough reason to decide against having any. The risk is low, most children outgrow epilepsy, and most people who have it are able to control their seizures by taking one medicine.

Will I always have epilepsy?

About 80% of people with epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closetreated with seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines remain free of seizures for at least 2 years. Many never have any more seizures. The chances of becoming completely seizure-free are best if there is no known brain injury or abnormality, and if the person has a normal neurological examination and EEG.

Of adults, 50-60% will be seizure-free after using their first seizure medicine. Another 11-20% will gain seizure control using the second medication, leaving 20-30% who are still having seizures.

Among those who are young when their epilepsy is diagnosed, 20% start on medication and never have another seizure after medication is stopped, even when they reach adulthood. About 50-60% of children become seizure-free with the first medication used, but 30% never stop taking seizure medicines. About 10% have a really difficult time with “intractable IntractableDifficult to alleviate, remedy, or cure; for example, intractable seizures are difficult to control with the usual antiepileptic drug therapy.Closeseizures.”

The more time that passes without seizures, the greater is the chance of staying seizure-free. Over 50% of children outgrow their epilepsy. Twenty years after the diagnosis, three-quarters of people will have been seizure-free for at least 5 years, although some may still need to take daily medication.

Will I have to take seizure medicines for the rest of my life?
Many people who are seizure-free for 2 to 4 years can stop taking their medications, under their doctor's supervision, without having further seizures. However, about 30% of children and 30% to 65% of adults will have seizures again. You need to discuss this with your neurologist and, if the decision is made to go off medication, agree on a plan for stopping gradually over weeks or months, not all at once. Currently, most neurologists in the United States and Canada consider withdrawing seizure medicines after someone has been seizure-free for 1 to 2 years.

Whether it will be safe for you to stop taking your seizure medicine depends partly on whether you drive a car or engage in other activities that would be dangerous if you had another seizure. If your answer is "yes," you will need to be more cautious.

I've been taking seizure medicine but I'm still having seizures. Will I always have them?
Some people with seizures that cannot be controlled with tolerable doses of seizure medicine (who have what doctors call "intractable epilepsy") do eventually become seizure-free. The longer that you continue to have seizures after the diagnosis of epilepsy is made, however, the lower the chance that your seizures will stop.

Your doctor will want you to try different medications or combinations of them. The more medicines that are unable to control your seizures, however, the less likely it is that another medication regimen will fully succeed. Other kinds of treatments, such as vagus nerve stimulation or epilepsy surgery, may be very helpful for some people who continue to have seizures while taking seizure medicines.

How serious are seizures?

The overall life expectancy of people who have epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeis the same as for anybody else if they are otherwise pretty healthy. Some people whose epilepsy is caused by things like a stroke or a brain tumor may die sooner from those conditions, of course.

A long-lasting convulsive seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Close(called "tonic-clonic status epilepticus" Status epilepticusA prolonged seizure (usually defined as lasting longer than 30 minutes) or a series of repeated seizures; a continuous state of seizure activity; may occur in almost any seizure type. Status epilepticus is a medical emergency, and medical help should be obtained immediately.Close) is a medical emergency. If not stopped within about 30 minutes, it may cause permanent injury or death. In addition, people with epilepsy can also die from inhaling vomit during or just after a seizure. This can be prevented if someone will turn the person onto one side when the seizure begins and ensures that the vomit completely comes out of the mouth. In general, seizures are hardly ever fatal, even if the person loses consciousness. ConsciousnessState of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell.Close

People who are not seizure-free need to be careful about possible accidents during a seizure. Death from drowning is more common among people with epilepsy. It can even occur in a tub with only a few inches of water, so people who have seizures probably should stick to showers instead of baths. If you have epilepsy, your doctor—and the agency in your state or province responsible for licensing drivers—will help you decide whether it is safe and legal for you to drive. You should also be careful on train or subway platforms and when walking near busy streets. However,with some planning, you should be able to lead a life that is both active and safe.

What about Sudden Unexplained Death in Epilepsy (SUDEP)?
SUDEP is a rare condition in which people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy. It can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. SUDEP is extremely rare in children.

The person is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down.

No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

Safety Precautions

 
The best known way to lessen the risk of SUDEP is to control seizures. Therefore:
 
  • Take all seizure medicines regularly, as prescribed.
  • Avoid heavy alcohol use and recreational drugs.
  • Get regular sleep and avoid fatigue.

Facts & myths

Epilepsy has afflicted human beings since the dawn of our species and has been recognized since the earliest medical writings. We now understand that epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close(commonly called 'the epilepsies') is a group of disorders that occurs as a result of seizures that temporarily impair brain function. Epilepsy is not a 'one size fits all problem'. It can look, feel and act differently in different people. It is much more common than previously thought and is one of the more common neurological problems affecting people of all ages.. Few medical conditions have attracted so much attention and generated so much controversy. Throughout history, people with epilepsy and their families have suffered unfairly because of the ignorance of others. Fortunately, the stigma and fear generated by the words "seizures" and "epilepsy" have decreased during the past century, and most people with epilepsy now lead normal lives.

The Greek physician Hippocrates wrote the first book on epilepsy, titled On the Sacred Disease, around 400 BC. Hippocrates recognized that epilepsy was a brain disorder, and he spoke out against the ideas that seizures were a curse from the gods and that people with epilepsy held the power of prophecy.

Sadly, false ideas die slowly, and for centuries epilepsy was considered a curse of the gods, or worse. For example, a 1494 handbook on witch-hunting, Malleus Maleficarum, written by two Dominican friars under papal authority, said that one of the ways of identifying a witch was by the presence of seizures. This book guided a wave of persecution and torture, which caused the deaths of more than 200,000 women thought to be witches.

Misunderstanding continued for many more years. In the early 19th century, people who had severe epilepsy and people with psychiatric disorders were cared for in asylums, but the two groups were kept separated because seizures were thought to be contagious. In the early 1900s, some U.S. states had laws forbidding people with epilepsy to marry or become parents, and some states permitted sterilization.

The modern medical era of epilepsy began in the mid-1800s, under the leadership of three English neurologists: Russell Reynolds, John Hughlings Jackson, and Sir William Richard Gowers. Still standing today is Hughlings Jackson's definition of a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeas "an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles." Hughlings Jackson also pointed out that seizures could alter consciousness, ConsciousnessState of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell.Close sensation, and behavior.

The past century has brought an explosion of knowledge about the functions of the brain and about epilepsy. Epilepsy research continues at a vigorous pace, with investigations ranging from how microscopic particles and channels in the cell trigger seizures, to the development DevelopmentThe process of physical growth and the attainment of intelligence and problem-solving ability that begins in infancy; any interruption of this process by a disease or disorder is called developmental delay.Closeof new seizure medicines, and to a better understanding of how epilepsy affects social and intellectual development.

People with epilepsy are not "epileptics."
The word "epileptic" should not be used to descrbe someone who has epilepsy, as it defines a person by one trait or problem. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as "a person with epilepsy" or to a group of people as "people with epilepsy."

A seizure disorder is epilepsy.
Because some people fear the word "epilepsy," they use the term "seizure disorder" in an attempt to separate themselves from any association with it. However the term seizure disorder means the same thing as epilepsy. A person has epilepsy or a seizure disorder if he or she has had two or more seizures that "come out of the blue" and are not provoked—even if the problem first develops in adulthood or is known to be caused by something like a severe head injury or a tumor.

People with epilepsy are seldom brain-damaged.
Epilepsy is a disorder of brain and nerve-cell function that may or may not be associated with damage to brain structures. Brain function can be temporarily disturbed by many things, such as extreme fatigue; the use of sleeping pills, sedatives, or general anesthesia; or high fever or serious illness. "Brain damage" implies that something is permanently wrong with the brain's structure. This kind of damage may occur with severe head injury, cerebral palsy, Cerebral palsyA condition with various combinations of impaired muscle tone and strength, coordination, and intelligence.Close or stroke, or it may occur long before birth, with malformation or infection. Injuries to the brain are the cause of seizures in some people with epilepsy, but by no means all of them.

Brain injuries range from undetectable to disabling. Although brain cells usually do not regenerate, most people can make substantial recoveries. Brain damage, like epilepsy, carries a stigma, and some people may unjustly consider brain-injured patients "incompetent."

People with epilepsy are not usually cognitively challenged.
People with epilepsy usually are not intellectually challenged. Many people mistakenly believe that people with epilepsy are also intellectually or developmentally challenged. In the large majority of situations, this is not true. Like any other group of people, people with epilepsy have different intellectual abilities. Some are brilliant and some score below average on intelligence tests, but most are somewhere in the middle. They have normal intelligence and lead productive lives. Some people, however, may have epilepsy associated with brain injuries that may cause other neurological difficulties that affects their thinking, remembering, or other cognitive CognitivePertaining to the mental processes of perceiving, thinking, and remembering; used loosely to refer to intellectual functions as opposed to physical functions.Closeabilities. The cognitive problems may be the only problem in most people. Less frequently, some people have other developmental problems that can affect the way they function and live.

People with epilepsy are not violent or crazy.
The belief that people with epilepsy are violent is an unfortunate image that is both wrong and destructive. People with epilepsy have no greater tendency toward severe irritability and aggressive behaviors than do other people.

Many features of seizures and their immediate aftereffects can be easily misunderstood as "crazy" or "violent" behavior. Unfortunately, police officers and even medical personnel may confuse seizure-related behaviors with other problems. However, these behaviors merely represent semiconscious or confused actions resulting from the seizure. During seizures, some people may not respond to questions, may speak gibberish, undress, repeat a word or phrase, crumple important papers, or may appear frightened and scream. Some are confused immediately after a seizure, and if they are restrained or prevented from moving about, they can become agitated and combative. Some people are able to respond to questions and carry on a conversation fairly well, but several hours later they cannot remember the conversation at all.

People with epilepsy are mentally ill.
Epilepsy is not the same as mental illness and in fact, the majority of people with seizures do not develop mental health problems. Yet recent research is showing that problems with mood, such as anxiety and depression, may be seen more frequently than previously thought. The causes are not always known. In some people, the cause and location of the seizures may affect certain brain areas and contribute to mood problems. In others, side effects of treatments and the challenges of living with epilepsy may affect a person's feelings and behavior. If these problems occur, a variety of treatments are available.

Seizures do not cause brain damage.
Single tonic-clonic seizures lasting less than 5-10 minutes are not known to cause brain damage or injury. However, there is evidence that more frequent and more prolonged tonic-clonic seizures may in some patients injure the brain. Prolonged or repetitive complex partial seizures (a type of seizure that occurs in clusters without an intervening return of consciousness) also can potentially cause long-lasting impairment of brain function.

Some people have difficulty with memory and other intellectual functions after a seizure. These problems may be caused by the aftereffects of the seizure on the brain, by the effects of seizure medicines, or both. Usually, however, these problems do not mean that the brain has been damaged by the seizure. There may be a cumulative, negative effect of many tonic-clonic or complex partial seizures on brain function, but this effect appears to be rare.

Epilepsy is not necessarily inherited.
Most cases of epilepsy are not inherited, although some types are genetically transmitted (that is, passed on through the family). Most of these types are easily controlled with seizure medicines.

Epilepsy is not a life-long disorder.
Generally, people with epilepsy have seizures and require medication for only a small portion of their lives. About 60 % of people who develop seizures have epilepsy that can be easily controlled and is likely to remit or go away. However, about 25 % may develop difficult to control seizures and likely will require lifelong treatment. More than half of childhood forms of epilepsy are outgrown by adulthood. With many forms of epilepsy in children and adults, when the person has been free of seizures for 1 to 3 years, medications can often be slowly withdrawn and discontinued under a doctor's supervision.

Epilepsy is not a curse.
Epilepsy has nothing to do with curses, possession, or other supernatural processes, such as punishment for past sins. Like asthma, diabetes, and high blood pressure, epilepsy is a medical problem.

Epilepsy should not be a barrier to success.
Epilepsy is perfectly compatible with a normal, happy, and full life. The person's quality of life, however, may be affected by the frequency and severity of the seizures, the effects of medications, reactions of onlookers to seizures, and other disorders that are often associated with or caused by epilepsy.

Some types of epilepsy are harder to control than others. Living successfully with epilepsy requires a positive outlook, a supportive environment, and good medical care. Coping with the reaction of other people to the disorder can be the most difficult part of living with epilepsy.

Acquiring a positive outlook may be easier said than done, especially for those who have grown up with insecurity and fear. Instilling a strong sense of self-esteem in children is important. Many children with long-term, ongoingic illnesses—not only epilepsy but also disorders such as asthma or diabetes—have low self-esteem. This may be caused in part by the reactions of others and in part by parental concern that fosters dependence and insecurity. Children develop strong self-esteem and independence through praise for their accomplishments and emphasis on their potential abilities.

Diagnosis

Usually it is easy for a doctor to tell whether a patient has epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close But sometimes other disorders can cause sudden changes in behavior that may be confused with epilepsy. The patient's treatment depends on an accurate diagnosis: does the patient have epilepsy or some other disorder? If the diagnosis is epilepsy, the choice of treatment also depends on accurately identifying the specific type (or types) of seizure. SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Close Different types respond best to different seizure medicines. Some types can even be made worse by particular medicines.

The doctor seldom gets to see the patient have an actual spell, SpellA period, bout, or episode of illness or indisposition; refers to seizures or other disorders that produce brief episodes of behavioral change.Close so the information provided by the patient and family members or other witnesses is extremely important. No matter how accurate and complete the information, however, some episodes are difficult to diagnose correctly, even for experts. Every epilepsy specialist has had patients whose spells were so confusing that the first diagnosis was incorrect. This is one reason that follow-up care, and the additional information it can provide, is so important.

Diagnosis 101: The Basics

Anyone who may have had a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeneeds an accurate diagnosis. Correctly identifying what happened is essential. The exact type of seizure must be known so that the doctor can prescribe the best treatment to prevent more. And sometimes other events can be mistaken for seizures. The doctor must know what the problem is before it can be treated.

Sometimes making the diagnosis of epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closecan be difficult. In this section, we take you through each of the steps in the diagnostic process.

Why see a doctor?

DoctorIt is extremely important for anyone who has had a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeto see a doctor. Even people who have not had a big, obvious seizure should see a doctor if they suspect (or people tell them) that there are periods during which they are not aware of what they're doing.

The doctor will try to determine whether a seizure has occurred. If so, was it caused by some medical condition (diabetes, for instance) that may need treatment? Or is the problem epilepsy? EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close If it's epilepsy, more tests may be needed and usually medicines will be prescribed to prevent further seizures.

What kind of doctor is best?

A person who suspects a problem but doesn't know what it is should go to a primary care doctor (pediatrician, internist, or family physician) first for evaluation. The primary care doctor may run some tests. If the doctor suspects seizures, the person probably will be referred to a neurologist, a doctor with special training in disorders of the brain, including epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close Some neurologists have specific training in epilepsy and spend most of their time treating people with this disorder; they are called epileptologists. For routine treatment of epilepsy, it is usually not necessary to see an epileptologist. EpileptologistA neurologist with specialty training in epilepsy.Close A consultation may be beneficial in certain circumstances, such as counseling about pregnancy and childbirth.

A person who has a big seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeis often taken by ambulance to the Emergency Room. There they are seen by an emergency physician, or possibly a neurologist, and will be referred to a neurologist for follow-up.

What will the doctor do?

The first and most important part of a visit to the doctor is an interview, called taking a history. The doctor will ask for a complete description of what happened. Often it is important to bring along a family member or someone else who saw the seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeand can tell the doctor what happened, since the person who had the spell SpellA period, bout, or episode of illness or indisposition; refers to seizures or other disorders that produce brief episodes of behavioral change.Closemay have been unconscious. Even if the person thinks that he or she was aware, there may be important aspects of the spell that are not recalled. The doctor will want to hear not only a description of the seizure itself, but also the story of the events leading up to it and the after-effects that followed it.

The doctor then will thoroughly examine the person and probably will order several tests. The doctor may have enough information on the first visit for treatment to be recommended and started, but sometimes this will happen only after further test results are reviewed.

Questions your doctor may ask
  • Could the episode have been provoked by sleep deprivation, excessive use of alcohol or drugs, or some other factor?
  • What was the setting?
  • Did the episode occur shortly after standing?
  • Was there a warning?
  • Exactly what happened during the episode?
  • How long did it last?
  • Was the person tired or confused after the episode?
  • Has there been more than one episode? If so, were they all alike?
  • Has the person seen a doctor before about this kind of event?
  • If so, what tests were done?
  • Was any medication prescribed? What effect did it have?

What tests are needed?

The doctor usually orders a variety of tests to help make the diagnosis. These include:

  • a brain wave test, also called an EEG (electroencephalogram) Electroencephalogram (EEG)A diagnostic test of brain electrical activity; helpful in diagnosing epilepsy.Close, to look for changes in the brain's electrical patterns that are related to seizures
  • blood tests, to look for certain medical disorders
  • either a special x-ray of the brain, a CT scan (sometimes called a CAT scan), or an MRI scan (magnetic resonance imaging) Magnetic resonance imaging (MRI)A scanning technique that creates pictures of the inside of the body and the brain; uses a strong magnet (does not use x-rays); more sensitive than CT.Close, to look for abnormal areas such as a tumor or infection.

Depending on the urgency of the situation, other tests also might be recommended, such as a lumbar puncture (also called a spinal tap), EKG (electrocardiogram, to check the heart), or a sleep test.

The results of these tests often appear completely normal in people with epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close Normal test results do not mean that the seizures are not real or that epilepsy is not present.

What if it's not epilepsy?

After looking at the test results, the doctor (and perhaps some other specialists) may conclude that the person has a medical or psychological condition that causes events that look like epileptic seizures. In that case, treating that condition (instead of giving seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines) may prevent future incidents.

On the other hand, all the test results might be normal. Then the doctor has to determine whether treatment is needed. Some people have a single seizure and don't have any more. But others go on to have more seizures later, leading to the diagnosis of epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close

Medical History

Telling what happened
The medical history Medical historyThe account of a patient's disorder.Closeis the foundation of the diagnosis of epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close The doctor needs ALL the information about what happened before, during, and after your seizures. If you cannot give enough information, then others who have seen the seizures happen should contribute what they know. If some of the details are vague, the doctor needs to know that too.

What will the doctor ask?
To get a full picture of what the spell SpellA period, bout, or episode of illness or indisposition; refers to seizures or other disorders that produce brief episodes of behavioral change.Closewas like and what might have caused it, the doctor probably will ask about things that happened before and after it as well as during the incident itself.

Before the spell:

  • Did you experience lack of sleep or unusual stress?
  • Were you sick recently?
  • Did you take any kind of medication, including over-the-counter medicines, alcohol, or illegal drugs?
  • What were you doing immediately before the event (for instance, lying down, sitting, standing, getting up from a lying position, heavy exercise)?

During the spell:

  • What time of day was it?
  • Were you just waking up or falling asleep?
  • How did it begin?
  • Was there a warning?
  • Did your eyes, mouth, face, head, arms, or legs move abnormally?
  • Were you able to talk and respond appropriately?
  • Did you lose control of your bladder or bowels?
  • Did you bite your tongue or the inside of your cheeks?

After the spell:

  • Were you confused or tired?
  • Could you speak normally?
  • Did you have a headache?
  • Did your muscles ache?

How can my family and friends help?
One of the most valuable pieces of information a doctor can get is an accurate eyewitness description of a typical event. It is worthwhile for people who have seen your seizures to visit the doctor’s office with you. If that is not practical, perhaps the doctor or nurse can speak with them by telephone.

Ask them to write down a detailed description of what they saw soon after the event, because memories fade with time. Even after they talk to your doctor, save these notes, because they may be helpful to another doctor later. If the episodes occur often, it would be very helpful for the doctor if someone could film one or more of them on home video.

Your parents or other family members also may be able to help with some important questions about your medical history:

  • Was your birth difficult?
  • Did you have any seizures with high fevers when you were a baby or small child?
  • Did you ever have a head injury? If so, did you lose consciousness ConsciousnessState of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell.Closeafter the injury? How long were you unconscious? Were you taken to a hospital?
  • Did you ever have meningitis MeningitisA bacterial infection of the membranes surrounding the brain; often diagnosed by a spinal tap (lumbar puncture).Close(an infection of the membranes around the brain and spinal cord) or encephalitis EncephalitisAn inflammation of the brain, usually caused by a virus.Close(a serious viral infection of the brain)?
  • Has anyone else in the family had epilepsy, any other neurological disorder, or a disorder associated with loss of consciousness?

What else should I tell the doctor about?
If the incidents occur repeatedly, try to identify associated factors. For example, some women with epilepsy have more frequent episodes at certain times in their menstrual cycle, so you may want to track this kind of relationship on a calendar. Some people try to link their seizures with environmental factors such as stress, using an antibiotic, or eating too much sugar. Often these associations are just coincidences. Keep careful records of when the possible factor occurs in relation to the time and frequency of your seizures. And remember that even if the factor and your seizures turn out to be associated, that doesn't necessarily mean that the factor is causing the seizures.

Physical Exam

Looking for other disorders
Medical disorders involving other systems of the body can cause seizures, so your doctor will perform a general medical examination as an important part of your first visit for seizures. An examination and some laboratory tests can tell the doctor whether your liver, kidneys, and other organ systems are working properly.

Some people have both epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeand a medical disorder such as kidney disease or an overactive thyroid gland. If you have a disorder of this kind, both your neurologist and your primary doctor should know about it. Your medical disorder may be involved in causing your seizures. Even if it is not, the presence of another disorder may affect the seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines that are prescribed for you. Either the disorder itself may affect the way the medicine works in your body, or the medicine prescribed to treat it may interact with your seizure medicine.

Neurological Exam

Assessing thinking, function, and senses
A neurological examination looks at how well your brain and the rest of your nervous system are functioning. Every time your doctor taps your knee with a hammer to see if your foot jumps, that's part of a neurological exam.

If you have spells that may be seizures, your primary doctor probably will send you to see a neurologist, a doctor who specializes in the brain and nervous system. The neurologist will perform a complete neurological exam to find out whether an area of your brain is functioning abnormally.

Usually the neurologist will first ask you about problems you may have experienced that could be a sign of a brain disorder. The neurologist also will test the functioning of your muscles, your senses, and your reflexes, and will look for any problems with your walking or coordination. Another part of the exam is a test of your mental functions, such as the ability to remember words, do arithmetic, and name objects.

During follow-up visits, the neurologist often will perform a brief version of the exam again to see if anything has changed. If the dosage of your seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicine is too high, for instance, this exam may reveal unwanted side effects, such as

  • slurred speech
  • trouble concentrating
  • difficulty walking a straight line
  • jerking eye movements when you look to one side
  • trembling when your arms are outstretched

If the neurologist finds signs like these, the dosage of medicine may need to be reduced.

The neurologist may be examining you even while you are just talking. The doctor can assess your mood, thinking, language, eye and facial movements, strength, coordination, and many other features just by carefully listening and observing you.

EEG

Checking brain waves
EEG is the name commonly used for electroencephalography (e-LEK-tro-en-SEF-uh-LOG-rah-fee). EEG is the most important test for diagnosing epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closebecause it records the electrical activity of the brain. It is safe and painless. Electrodes (small, metal, cup-shaped disks) are attached to your scalp and connected by wires to an electrical box. (The wires can only record electrical activity; they do not deliver any electrical current to your scalp.) The box in turn is connected to an EEG machine.

The EEG machine records your brain's electrical activity as a series of squiggles called traces. Each trace corresponds to a different region of the brain. EEGs always used to be recorded on paper, but computerized, paperless EEGs are now used more often.

What can the EEG show?
The EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, not just seizures. For example, certain types of waves may be seen after head trauma, TraumaAn injury or wound caused by external force or violence.Close stroke, brain tumor, or seizures. A common example of this type is called "slowing, SlowingA term used to describe a group of brain waves on the EEG that have a lower frequency than expected for the subject’s age and level of alertness and the area of the brain recorded. Slow waves can result from drowsiness or sleep, drugs, or brain injuries and occur during or after seizures.Close" in which the rhythm of the brain waves is slower than would be expected for the patient's age and level of alertness.

Certain other patterns indicate a tendency toward seizures. Your doctor may refer to these waves as "epileptiform EpileptiformResembling epilepsy or its manifestations; may refer to a pattern on the EEG associated with an increased risk of seizures.Closeabnormalities" or "epilepsy waves." These include spikes, sharp waves, and spike-and-wave discharges. Spikes and sharp waves in a local area of the brain, such as the left temporal lobe, indicate that partial seizures are beginning in that area. Primary generalized epilepsy, on the other hand, is suggested by spike-and-wave discharges that are widely spread over both hemispheres of the brain, especially if they begin in both hemispheres at the same time.

Procedure

Usually your brain waves will be recorded for about 20 to 40 minutes. It takes about the same amount of time to prepare for the recording, so the entire procedure usually takes 1 to 1˝ hours. You can help by washing your hair the night before or the day of the test. Don't use any conditioners, hair creams, sprays, or styling gels.

Electrodes are held in place by paste during EEGThe test is performed by an EEG technologist. First the technologist will measure your head so that the electrodes can be placed in the correct position. A wax crayon, which can be easily washed off later, is used to mark the points on your scalp where the electrodes should be placed.

Usually the electrodes are held in place by a paste that can be washed off easily when the test is over. The technologist will probably scrub each position on your scalp with a mildly abrasive cream before applying the electrodes. This will help improve the quality of the recording.

The EEG is recorded in a quiet room, which often is dimly lit. The technologist may ask you to open and close your eyes several times, may shine flashing lights into your eyes, or may ask you to breath rapidly or deeply. If you have any symptoms of a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeduring the test, tell the technologist.

Electrodes being applied during EEG If you fall asleep briefly during the session, that's fine. It may even be helpful, because an EEG obtained during while you are asleep may provide extra information. Sometimes doctors ask patients to stay up the entire night before an EEG is performed because sleep deprivation can increase the likelihood that waves indicating epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closewill be recorded.

After the EEG recording is done, the technologist will remove the electrodes from your scalp, and you can go home and wash the paste out of your hair. The doctor usually reads the EEG after you have left and will tell you the results later.

What can the EEG show?
EEG The EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, not just seizures. For example, certain types of waves may be seen after head trauma, TraumaAn injury or wound caused by external force or violence.Close stroke, brain tumor, or seizures. A common example of this type is called "slowing, SlowingA term used to describe a group of brain waves on the EEG that have a lower frequency than expected for the subject’s age and level of alertness and the area of the brain recorded. Slow waves can result from drowsiness or sleep, drugs, or brain injuries and occur during or after seizures.Close" in which the rhythm of the brain waves is slower than would be expected for the patient's age and level of alertness.

Certain other patterns indicate a tendency toward seizures. Your doctor may refer to these waves as "epileptiform EpileptiformResembling epilepsy or its manifestations; may refer to a pattern on the EEG associated with an increased risk of seizures.Closeabnormalities" or "epilepsy waves." These include spikes, sharp waves, and spike-and-wave discharges. Spikes and sharp waves in a local area of the brain, such as the left temporal lobe, indicate that partial seizures are beginning in that area. Primary generalized epilepsy, on the other hand, is suggested by spike-and-wave discharges that are widely spread over both hemispheres of the brain, especially if they begin in both hemispheres at the same time.

Where it's performed

The EEG is the principal test for confirming a diagnosis of seizures and gathering information about their type and location. It can be performed in a neurologist’s office but sometimes patients are sent to a hospital to have the EEG performed in the neurology or epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closedepartment. Whichever situation you are in, you may wonder whether your EEG will be of the same quality as an EEG performed in a different setting.

All else being equal, the location of the EEG equipment should not make any difference in itself. There are standard procedures for the placement of the EEG electrodes and for the way the test is performed and interpreted. Differences may arise, however, if one site has newer equipment or more experienced professionals to perform and interpret the test.

What are the advantages of the newest equipment?
You have probably seen pictures of basic EEG machines that draw the brain waves on long paper strips. New computerized (digital) EEG machines do not produce paper strips. Instead, they offer more options for viewing brain waves than the basic paper EEG machine.

One of the most important differences is that they allow the neurologist to look at more channels in searching for abnormal brain waves. The basic paper EEG machine provides from 8 to 21 channels, but many digital EEG machines offer 32 channels or even more. (Some have fewer than 32.) Viewing more channels increases the possibility of finding the "epilepsy waves" and helps confirm the diagnosis of either partial or generalized epilepsy.

Another advantage of the newer equipment is that with computerized recording, the neurologist can reformat the brain waves and view the same period of recording from a different perspective. With paper recording, such reformatting is not possible.

How important is the skill of the person interpreting my EEG?
EEG interpretation is an acquired skill. Neurologists with extensive experience in reading EEGs can provide more accurate interpretations than those with limited experience. Neurologists who specialize in reading EEGs (neurophysiologists) read hundreds of them during their training so they can become skilled at interpreting them.

They learn, for instance, to recognize the many things besides seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeactivity that can alter an EEG recording. Opening the eyes, mental concentration, breathing fast, or looking at flickering lights all alter brain-wave patterns. If you move (by closing your mouth, for example), that creates changes in the EEG called artifact.

Experienced neurologists also learn to recognize the slight differences between what is normal for one patient versus what is normal for someone else. Subtle changes in brain waves may be interpreted as abnormal when the actual change is this kind of normal variant.

Interpreting EEGs also involves some subjectivity and judgment. (This is why the machine doesn't just spit out the interpretation along with the strip!) What one interpreter reads as sharp waves may be read as spikes by another. Both may be considered correct, depending on the criteria they apply. Experienced neurologists also learn to interpret the EEG in light of the patient's medical history, Medical historyThe account of a patient's disorder.Close physical examination, and other laboratory studies.

What are other advantages of having my EEG performed in a hospital?
Epilepsy centers in hospitals generally use state-of-the-art equipment. The neurologists who work there have gone through special training in diagnosing and treating epilepsy. They may also have special qualifications in interpreting EEGs.

If your EEG is performed in a hospital or a large office practice, more than one neurologist may be able to review it. Such second opinions can decrease subjectivity and bias. Additional interpreters also can apply a wider range of experience to questions that may arise.

Even with the best technology and the most highly trained neurologists, however, your first EEG may turn out to be normal or inconclusive. You may need to have another EEG performed after sleep deprivation, or have ambulatory or video-EEG monitoring to record the epilepsy waves that are associated with your seizure activity.

What if it's normal?

The neurologist has just informed you that your EEG is normal even though you recently experienced your first tonic-clonic seizure. SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Close This test result puzzles you. Does a normal EEG mean that you didn’t have a seizure and the headache and muscle aches you felt were related to some other illness? No, your normal EEG does not mean that you did not have a seizure. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even many individuals who experience weekly or monthly seizures have some EEGs that are read as normal. Why is the EEG normal when you definitely experienced a tonic-clonic seizure? Tonic-clonic seizureA convulsion; newer term for grand mal or major motor seizure; characterized by loss of consciousness, falling, stiffening, and jerking; electrical discharge involves all or most of the brain.Close

The EEG records the electrical activity of the brain. During a seizure, the electrical activity is abnormal. Once the seizure is over, the brain rapidly returns to normal in most individuals. When an EEG is done several hours or even days later, it misses the changes in electrical activity that occurred during the actual seizure.

The likelihood of recording a seizure during the EEG is small. The EEG generally records brain waves between seizures, called interictal InterictalReferring to the period between seizures.Closebrain waves. These waves may or may not show evidence of seizure activity. The neurologist looks for spikes or sharp waves ("epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closewaves") to confirm the diagnosis, but the absence of these abnormal brain waves does not eliminate seizures as a possibility.

Specific techniques, like flashing lights or 2 to 5 minutes of deep breathing (hyperventilation) HyperventilationIncreased rate and depth of breathing; may be done during the EEG to increase the chances of finding epileptiform or other abnormal activity.Close, often are used to provoke abnormal brain waves so they can be recorded. Recording the "epilepsy waves" is helpful because it confirms the diagnosis and may identify the type of seizure disorder, but it is not necessary for diagnosis and treatment.

Making a diagnosis of seizures does not depend only on the results of the EEG. The neurologist also considers several other types of information. One of the most important is the way you and other witnesses describe the event. Does it sound like a complex partial seizure Complex partial seizureAn epileptic seizure that involves only part of the brain and impairs consciousness; often preceded by a simple partial seizure (aura, or warning).Closeor a fainting spell? SpellA period, bout, or episode of illness or indisposition; refers to seizures or other disorders that produce brief episodes of behavioral change.Close The results of a physical examination and perhaps an MRI scan of your brain will be evaluated for relevant abnormalities. The neurologist also will review your past medical history Medical historyThe account of a patient's disorder.Closeto see whether it includes injuries or illnesses that would make you more likely to experience seizures. For example, if you've had meningitis, MeningitisA bacterial infection of the membranes surrounding the brain; often diagnosed by a spinal tap (lumbar puncture).Close your risk of seizures is three times greater. Based on all of this information, your neurologist may diagnose seizures with confidence even though the result of your EEG was normal.

Your normal EEG does not mean that the neurologist was wrong in saying that you had a seizure. Keep taking the seizure medicine that was prescribed. If you have a normal EEG and stay free of seizures for two years or more, the neurologist may suggest that you can stop taking it!

Special electrodes

If a routine EEG does not give all the information the doctor needs for the diagnosis and treatment of your epilepsy, EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close occasionally special types of electrodes are used to get more information:

  • Sphenoidal (sfee-NOY-dle) electrodes can record electrical activity from deep parts of the temporal and frontal lobes. They are used most often used during video-EEG monitoring studies. The technologist or doctor will swab your cheek just below your jaw hinge with rubbing alcohol, and may apply an anesthetic. Then a thin needle, carrying a thin wire, is inserted into the cheek. The needle is removed, and the wire is taped to your skin. You should experience little discomfort.
     
  • Nasopharyngeal (NAY-zo-fa-RIN-je-al) electrodes are used occasionally to record electrical activity deep in the brain. They are now being used less often, however, because they involve some discomfort and doctors have found that regular electrodes often can provide the same information. These electrodes are plastic tubes with a wire inside, ending with a blunt metal tip. The electrodes are inserted through the nose until the metal tip is located in the upper back part of the nose (the nasopharynx). There may be some discomfort while the electrodes are being inserted. They are left in place for about 20 or 30 minutes during the study.

Ambulatory EEG

Why do I need one?
The brain’s electrical activity fluctuates from second to second, but routine EEGs provide only a 20- to 40-minute sample of this activity. If epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closewaves occur in your brain only once every 3 or 4 hours, or if they happen only after an hour of sleep, for instance, a routine EEG will usually be normal. Then the doctor may want to see a longer recording that includes prolonged periods when you are both awake and asleep. This kind of recording is called an ambulatory EEG. ("Ambulatory" [AM-byew-lah-TOR-ee] means able to walk around.)

An ambulatory EEG may be performed to confirm the diagnosis of epilepsy if you've continued to have seizures despite trying various seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines. It would generally be performed at a specialized epilepsy center.

What's the procedure like?
This kind of recording is made by using a special recorder that is slightly larger than a portable cassette player. You can wear it on your waist, with the wires running either under your shirt or outside of it. Then you can go about your normal routine for up to 24 hours. The electrodes are pretty well covered if you have a full head of hair, but most people prefer not to go to school or work while wearing them.

Because the electrodes must stay on your head longer than for a regular EEG, the technologist will probably use a special glue called "collodion" to keep them in place. Acetone or a similar solution is used to remove them easily at the end of the test.

You will usually be asked to keep a diary of your actions during the day to help the doctor identify the cause of abnormal activity on the recording. For instance, the electrodes may make your head itchy, and if you scratch it, that may appear as abnormal activity on the EEG.

What are the special features of ambulatory EEG recorders?
Most recorders have an "event" button for you to press if you experience any of the symptoms for which you are being tested, such as feeling "spacey" or confused. If you are unable to press the button during a seizure, someone else can do it for you.

Newer recorders have built-in programs to identify epilepsy waves and seizures. Some even have video recording capability.

Video EEG

In video-EEG, you are videotaped at the same time as your EEG is recorded. The recording is carried out for a long period of time, often several days. The doctor usually views the video and EEG images side by side on a split screen. In this way the doctor can see precisely how your behavior during seizures is related to the electrical activity in your brain.

Video-EEG can be done on outpatients but it is often done in the hospital. If you are in the hospital under close supervision, it is safe to allow you to have some seizures, which the doctor can study. The doctor may reduce or even stop your seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicines to make seizures more likely. Other techniques include sleep deprivation, hyperventilation HyperventilationIncreased rate and depth of breathing; may be done during the EEG to increase the chances of finding epileptiform or other abnormal activity.Close(very rapid or deep breathing), and exercise.

Video-EEG is most helpful in determining whether seizures with unusual features are actually epilepsy, EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close identifying the type of seizures, and pinpointing the region of the brain where seizures begin. Locating the region precisely is essential if epilepsy surgery is being considered.

Video-EEG tips
A lot of patients say it's boring, just sitting around the hospital day after day. So bring things to read or something else to keep you busy.

Another tip is that the clothing you bring should be things that you don't have to pull over your head. The electrodes will be glued to your scalp with collodion, the same extra-strong glue that is used for ambulatory EEG, so your head will be connected to the EEG machine for long stretches of time.

How to read an EEG

How are the electrodes arranged?
The electrodes are placed on the scalp by an EEG technician according to internationally agreed-upon criteria. In order to locate the exact electrode ElectrodeA conductor through which electrical current enters or leaves. When used to record the electroencephalogram, a small metal disc attached to a wire is usually used.Closeposition, this system uses four anatomical landmarks from which measurements can be made. The nasion is the indentation between the forehead and the nose, the inion is a ridge that can be felt at the midline of the back of the skull, over the occipital area, and the preauricular points are defined as the indentations just above the cartilage that covers the external ear openings. The electrode locations and distances between the electrodes are then defined as 10% or 20% of these anatomical distances. Occasionally, additional electrodes (sphenoidal and suboccipital, for instance) are placed to enhance the likelihood of detecting and determining the location of EEG waves that may be too small or too deep in the brain to be detected by routinely placed electrodes.

What do the letters and numbers mean?
The names of the electrode sites use alphabetical abbreviations that identify the lobe or area of the brain to which each electrode refers:

F = frontal
Fp = frontopolar
T = temporal
C = central
P = parietal
O = occipital
A = auricular (ear electrode).

The localization of the brain waves within the brain regions or lobes is further narrowed by adding electrodes, which are given numbers such as T3, T4, P3, P4. Even numbers identify electrode positions on the right side of the head, and odd numbers refer to the left side. The label "z" points to electrode sites in the midline of the head. For example, Cz refers to the midline central region of the head.

Often an EKG (electrocardiogram), a record of the heartbeat, also appears on the EEG printout.

How are the electrodes related to each other?
The EEG records brain waves from different amplifiers using various combinations of electrodes called montages. In bipolar montages, consecutive pairs of electrodes are linked by connecting the electrode input 2 of one channel to input 1 of the subsequent channel, so that adjacent channels have one electrode in common. The bipolar chains of electrodes may be connected going from front to back (longitudinal) or from left to right (transverse).

Another type of montage is the referential montage. In this type, various electrodes are connected to input 1 of each amplifier and a reference electrode is connected to input 2 of each amplifier. Ideally, inactive electrodes (ones that are uninvolved in the electrical field being studied) are chosen as references.

What does the doctor learn from looking at the EEG?
Being able to locate the origin of electrical activity ("localization") is critical to being able to interpret the EEG tracings meaningfully. Localization of normal or abnormal brain waves in bipolar montages is usually accomplished by identifying "phase reversal," a deflection of the two channels within a chain pointing to opposite directions. (See sample.) In a referential montage, all channels may show deflections in the same direction. If the electrical activity at the active electrodes is positive when compared to the activity at the reference electrode, the deflection will be downward. Electrodes where the electrical activity is the same as at the reference electrode will not show any deflection. In general, the electrode with the largest upward deflection represents the maximum negative activity in a referential montage.

Looking at the Brain

What is neuroimaging?
Sometimes epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeis caused by abnormalities in the structure of the brain. These can be such things as too much spinal fluid (hydrocephalus) HydrocephalusA condition associated with obstruction of the cerebrospinal fluid pathways in the brain and accumulation of excess cerebrospinal fluid within the skull.Close, scar tissue, or a tangle of blood vessels (vascular malformation). Tests that can take pictures of the brain, called "neuroimaging," can tell doctors whether you have one of these conditions. These tests are performed to look for the cause of your seizures (which can be identified for about half of patients) or to make sure that you don't have some other medical condition.

The most common neuroimaging tests for epilepsy are computed tomography Computed tomography (CT)A scanning technique that uses x-rays and computers to create pictures of the inside of the body; shows the structure of the brain; not as sensitive as MRI.Close(CT or CAT scan) and magnetic resonance imaging Magnetic resonance imaging (MRI)A scanning technique that creates pictures of the inside of the body and the brain; uses a strong magnet (does not use x-rays); more sensitive than CT.Close(MRI). Both produce a picture of how the brain looks. MRI is preferred because it provides more information than CT. In fact, MRI is recommended as the imaging test of choice.

What neuroimaging studies do I need?
For some types of epilepsy, a neuroimaging study may not be necessary. For most people with newly diagnosed epilepsy, however, neuroimaging is important for the diagnosis.

Neuroimaging should always be considered if the cause of your seizures is something that is apt to change, such as a benign BenignFavorable for recovery.Closetumor, which may grow, or a vascular malformation, which could bleed. In these situations, your doctor may want you to have follow-up scans to keep an eye on the situation. MRI also can be helpful if the cause of your seizures is suspected but indefinite, such as a mild head injury.

Many doctors will not order a CT or MRI scan for patients with certain well-defined epilepsy syndromes that are often genetic, such as absence seizures, juvenile myoclonic epilepsy, Juvenile myoclonic epilepsy (JME)A primary generalized epilepsy syndrome, usually beginning between ages 5 to 17 years, characterized by myoclonic (muscle-jerk) seizures and possibly also absence and tonic-clonic seizures; responds well to valproate.Close or benign rolandic epilepsy, Benign rolandic epilepsyAn epilepsy syndrome Epilepsy syndromeA disorder defined by seizure type, age of onset, clinical and EEG findings, family history, response to therapy, and prognosis.Closeof childhood characterized by partial seizures occuring at night and often involving the face and tongue; the seizures may progress to tonic-clonic seizures, have a characteristic EEG pattern, are easily controlled with medications but may not require treatment, and are outgrown by age 16 years.Close because the results are almost always normal or unrelated to epilepsy.

What are less common forms of neuroimaging?
CT and MRI show the brain’s structure, or how it looks. Other neuroimaging methods show its function, or how it works. They are generally used to evaluate patients before epilepsy surgery or as research tools. These methods include:

  • Single-photon emission computed tomography (SPECT), which shows a map of blood flow through different parts of the brain.
  • Positron emission tomography (PET), which shows how much sugar (glucose) or oxygen is metabolized (used up) by various areas of the brain.
  • Magnetoencephalography (MEG), which measures tiny magnetic fields to study the brain's electrical patterns with less interference from the skull and other tissues than on an EEG.
  • Magnetic resonance spectroscopy (MRS), which examines signals generated by elements such as phosphorus. MRS uses technology similar to that of MRI, which studies hydrogen atoms. MRS data can be used, for example, to learn about metabolism MetabolismThe physical and chemical processses by which substances are produced or transformed (broken down) into energy or products for the uses of the body.Closein the brain.
  • Ultrasound, which can look at fluid or blood in the brain of a newborn baby

Computed tomography (CT)

Computed tomography (CT or CAT scan) was introduced in the United States in the early 1970s. It revolutionized the practice of neurology and neurosurgery by letting doctors see inside the brain without surgery for the first time. The CT scan is normal in most people with epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close Abnormalities that might be seen are atrophy (shrinking of the brain), scar tissue, strokes, tumors, or abnormal blood vessels.

Like ordinary x-rays, CT scans expose the patient to radiation. However, the amount is low and the procedure is safe even if it needs to be repeated several times. The scanner is a large machine, but less confining for patients than the machine used for MRI.

The advantages of CT scanning include speed and easy availability in most places. It has lower resolution than MRI for showing brain structures, however, and it is not as good at discriminating between the brain's gray matter and white matter.

MRI

MRI (magnetic resonance imaging) Magnetic resonance imaging (MRI)A scanning technique that creates pictures of the inside of the body and the brain; uses a strong magnet (does not use x-rays); more sensitive than CT.Close was first introduced in the United States in the early 1980s. It is the most important neuroimaging test in epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closebecause it shows more details of the brain's structure than does the cat scan. MRI does not use x-rays. Instead, it uses a powerful magnet to change the spin on atomic particles in the body. Then it measures the changes in the magnetic field as the particles resume their previous course. This is safe and you will not feel anything while it is happening. (See photos of the MRI procedure.)

MRI produces a remarkably accurate representation of the brain's structure. The images are extremely helpful for identifying scar tissue, areas of abnormal brain development DevelopmentThe process of physical growth and the attainment of intelligence and problem-solving ability that begins in infancy; any interruption of this process by a disease or disorder is called developmental delay.Close(dysplasia), small brain tumors, blood vessel abnormalities, and changes in the brain's white matter.

SPECT

SPECT image SPECT (single-photon emission computed tomography) Computed tomography (CT)A scanning technique that uses x-rays and computers to create pictures of the inside of the body; shows the structure of the brain; not as sensitive as MRI.Close shows the blood flow in the brain. A safe, very low-level radioactive compound is injected into your arm, and the particles it emits are measured. The more blood that flows through a certain area, the more particles are emitted. The result is displayed as a picture with different colors representing different levels of blood flow.

This test is readily available in most hospitals, but it is seldom needed routinely in epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close SPECT scans obtained during or immediately after a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemay show increased blood flow in the area where seizures arise. Scans performed between seizures can be misleading, however.

New computer techniques allow doctors to measure the differences between SPECT scans taken during and between seizures to obtain "subtraction" SPECT images. These can be superimposed onto the patient's MRI in an effort to pinpoint the seizure focus. FocusThe center or region of the brain from which seizures begin; used in reference to partial seizures.Close This technique may be most helpful when seizures begin outside the temporal lobe and MRI scans do not show a structural abnormality.

PET

PET image PET (positron emission tomography) shows the brain's use of oxygen or sugar (glucose). As with SPECT, a very low, safe dose of a radioactive substance is injected into your arm and the scanner records its circulation. Not all types of PET scans look alike, but often different colors are used to show areas of higher or lower use of oxygen or sugar.

This test can help to identify the area of the brain from which partial seizures arise. It may be performed in the period between seizures, the interictal InterictalReferring to the period between seizures.Closeperiod. PET scans are expensive, and very few patients with epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeneed them. Many insurance companies will pay for PET scans for patients who are being evaluated for epilepsy surgery.

MEG (Magnetoencephalography)

MEG (magnetoencephalography) Magnetoencephalography (MEG)Recording the brain's magnetic activity, which is generated by its electrical activity.Close provides a new noninvasive tool to study epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closeand brain function. When it is combined with structural imaging, it is known as magnetic source imaging (MSI).

MEG measures small electrical currents arising inside the neurons of the brain. These currents produce small magnetic fields. MEG generates a remarkably accurate representation of the magnetic fields produced by the neurons.

To some degree, MEG is similar to EEG (electroencephalography). An important difference is that the skull and the tissue surrounding the brain affect the magnetic fields measured by MEG much less than they affect the electrical impulses measured by EEG. The advantage of MEG over EEG is therefore greater accuracy owing to the minimal distortion of the signal. This allows for more usable and reliable localization of brain function. When MEG is added to magnetic resonance imaging (MRI), which shows brain structure, the combination of the images is extremely helpful for identifying areas of the brain that may be generating a potential for seizures, as well as for localizing the electrical activity in normal brain function.

Why is an MEG performed?
In the evaluation of epilepsy, MEG is used to localize the source of epileptiform EpileptiformResembling epilepsy or its manifestations; may refer to a pattern on the EEG associated with an increased risk of seizures.Closebrain activity, which most likely is the source of seizures. It is usually performed with simultaneous EEG.

MEG may be helpful in the following situations:

  • It can improve the detection of potential sources of seizures by revealing the exact location of the abnormalities, which may then allow physicians to find the cause of the seizures.
  • It can help when MRI scans show a lesion but the EEG findings are not entirely consistent with the MRI information. An MEG may be able to confirm that the epileptiform discharges (the brain waves typical of epilepsy) are indeed arising from the lesion. Then a decision can be made regarding surgery.
  • In patients who have brain tumors or other lesions, the MEG may be able to map the exact location of the normally functioning areas near the lesion so that surgery can be planned to minimize postoperative weakness or loss of brain function.
  • In patients who have had past brain surgery, the electrical field measured by EEG may be distorted by the changes in the scalp and brain anatomy. If further surgery is needed, MEG may be able to provide necessary information without invasive EEG studies.

Preparing for the MEG procedure
No special preparations are needed for an MEG, unless sedation is planned. Then you (or your child) may be asked not to eat after midnight. Regular medicines should be taken with a little bit of water.

When you go for the MEG, wear loose, comfortable clothing. Do not wear jewelry, hair spray, make-up, hearing aids, or removable dental work.

If you have a vagus nerve stimulator Vagus nerve stimulator (VNS): A pacemaker-like device, implanted in the upper chest, which stimulates a nerve in the left neck and can reduce seizure activity. Close(VNS) or pacemaker, you may not be able to have MEG. Ask your doctor.

What will happen in the MEG lab?
You will be asked a series of medical questions to ensure that your body does not contain any metallic objects that may interfere with the MEG. A videotape eraser will be moved over your head to erase magnetic activity from fillings in your teeth. You will also be asked about any previous surgeries.

You will need to remove all clothing that has metal (such as zippers, snaps, or sparking paint) and change into a hospital gown or pants. Then EEG electrodes will be glued all around your head and one will be placed over your heart. Three small coils will be taped to your forehead and you will wear two other coils attached to earplugs. You will be asked to lie down on an MEG bed, where a small metal coil will touch all the different dots around your head to record its shape, and this information will go into the computer. During this time you will be asked to lie perfectly still. After your head shape has been recorded in the computer, you will get ready for the MEG study itself. You may be given pillows to put under your knees and elbows, and blankets to keep you warm, so you will be comfortable. The sensors will be put over your head but will not cover your face. (See photo) The coils and EEG electrodes will be plugged into the sensors. When you are comfortable, your family and the technologist will leave the room and the door will be closed. Closing the door can be a little scary, but you will have a small microphone so you can talk to the technologist, who can come into the room at any time.

The MEG test will take between 1 hour and 2 1/2 hours. During this time, you will need to remain as still as possible, not moving your head. This is very important. If you need a break, tell the technologist.

Sometimes stimulation tests are performed. If you have this kind of test, little plastic sensors may be placed on your fingers, or you will be shown a video with different colors. By doing this test, the doctors will know which part of your brain controls your hands, feet, and vision.

After this information is acquired, you will be removed from the MEG room. You can change back into your regular clothes and go home. Technicians and doctors will later review the information and report the results to your referring doctor.

MEG (Magnetoencephalography)
MEG unit. The individual's head rests inside
the MEG unit during the study.

 

 

Ultrasound

Most people think of ultrasound (also called ultrasonography) as a way of looking at babies before they're born. It also is used to diagnose medical and neurological disorders. It is especially useful for identifying brain abnormalities in newborn babies. It uses only sound waves, so it is very safe. The sound waves get access to the brain through areas of the infant's skull where the bones have not yet come together. (These are called fontanelles.)

If a baby has seizures or other signs of a neurological disorder, the doctor may use ultrasound to look for excessive spinal fluid (hydrocephalus) HydrocephalusA condition associated with obstruction of the cerebrospinal fluid pathways in the brain and accumulation of excess cerebrospinal fluid within the skull.Close or blood (hemorrhage) in the brain. The test can be performed easily in either the newborn intensive care unit or an outpatient clinic. Sometimes a CT scan or MRI will be performed later to get more information. These other techniques also can be used to search for abnormalities if the results from ultrasound (called a sonogram) are normal.

Treatment

First aid for a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closeas it's occurring is certainly an important part of treating epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close But taking a longer view, we see that the real objective of treatment for epilepsy is not to extend life or relieve pain. Instead, the goal is to enable people with epilepsy to lead full and unrestricted lives according to their own wishes.

"No seizures, no side effects" is the motto for epilepsy treatment. Not every person with epilepsy is able to reach that goal right now, but with research, more achieve it every year. Doctors keep working with the others to help them achieve the best possible quality of life—measured not by the number of seizures but by how close they come to achieving their own individual aims.

For some people, the treatment of epilepsy consists of taking a pill once or twice a day for a few years. No seizures, no side effects.

Others take many pills year after year. Lots of seizures, plenty of side effects. They may move on to other kinds of treatment. Sometimes they work well and sometimes they do not. People in this situation can get help from a team of health professionals who not only will help them find the most effective treatment to stop seizures, but also will help them to live as well as they can while the search continues.

Dietary Therapies

Dietary therapy is an approach to helping control seizures, usually in conjunction with seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedications. The ketogenic diet, Ketogenic dietA high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are difficult to control with medications.Close a special high-fat, low-carbohydrate diet, prescribed and monitored by a physician and nutritionist can help control seizures in some people. Additionally, the modified Atkins diet, which has some similar components to the traditional ketogenic diet, can be effective. This section presents information and monthly updates about these dietary therapies and others and how they might be helpful to people with epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close

Monthly Feature: Our articles, menus, and recipes on epilepsy.com focusing on the ketogenic diet as a method for controlling seizures have been an exciting addition to our site. Now readers can look forward to new information and thought provoking articles written by neurologists, dietitians, parents, and patients who are experts in the ketogenic, Atkins, and low glycemic index diets. Beginning January 2007, we are providing a new feature on dietary therapies each month. We welcome your feedback.

Ketogenic News and Physicians

A New Dietary Therapies Feature

With today’s renewed interest in diet and health, we are pleased to announce the creation of an exciting new feature on epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closecom, a recurring monthly section highlighting new advances in the use of dietary therapies for epilepsy. This feature will be edited by Eric Kossoff, MD, Johns Hopkins Hospital, who is also a member of the epilepsy.com editorial board. This section will include new information helpful for patients, parents, and caregivers who receive or provide diets for the treatment of epilepsy. Cutting edge research, as well as helpful hints, will be presented.

There have been several articles already on epilepsy.com ranging from research to recipes and menus for holiday celebrations. However, this marks the creation of a permanent feature. Readers can look forward to new information and thought provoking articles written by neurologists, dietitians, parents, and patients who are experts in the ketogenic, Atkins, and low glycemic index diets.

This monthly feature will also include stories from the Charlie Foundation and Matthew’s Friends, a parent support group in the United Kingdom.

If there are specific topics you would like to see covered, please contact Dr. Eric Kossoff at ekossoff@jhmi.edu or epilepsy.com senior editor, Rita Watson, rita@epilepsytdp.org. We welcome your input. We look forward to hearing from you.

To read more about the ketogenic diet, Ketogenic dietA high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are difficult to control with medications.Close please see the following links:

The Ketogenic Diet defined:
epilepsy.com/epilepsy/treatment_ketogenic_diet.html
Ketogenic diet information: epilepsy.com/epilepsy/ketogenic_links.html
Modification of the ketogenic diet – the Atkins diet: epilepsy.com/epilepsy/treatment_atkins_diet.html

Holiday recipes: epilepsy.com/epilepsy/keto_diet_holiday.html

Physicians with Expertise in the Ketogenic Diet

Dr. Kossoff compiled a list of physicians who were involved in working with patients on the ketogenic diet. We present here the list alphabetically by country within regional areas.

NORTH AMERICA
Drs. Peter and Carol Camfield
Dalhousie University and the IWK Health Centre
PO Box 9700
Halifax, Nova Scotia
Canada, B3K 6R8
Phone: 902-470-8479
Fax: 902-470-8486
Dr. Elizabeth J. Donner
Division of Neurology
The Hospital for Sick Children
Dept of Neurology
555 University Avev Toronto, ON M5G 1X8v Canada
Phone: 416 813-7037v Fax: 416 813-6334
Email: elizabeth.donner@sickkids.ca
Dr. Kevin Farrell
British Columbia Children's Hospital
4480 Oak Street
Room A303, Neurology
Vancouver, BC V6H 3V4
Canada
Phone: (604) 875-2121v Fax: (604) 875-2285
Email: kevin_farrell@telus.net
Drs. Daniel Keene and Sharon Whiting
Children's Hospital of Eastern Ontario
401 Smyth Rd
Ottawa, ON K1H 5L7
Canada
Phone: (613) 523-5140
Fax: (613) 523-2256
Email: dkeene@exchange.cheo.on.ca
Dr. Jeff Kobayashi
The Bloorview Macillan Children's Centre
25 Buchan Court
Toronto ON M2J 4S9
Canada
Phone: (416) 425-6220 ext 6276
Fax: (416) 753-6046
Email: jkobayashi@bloorviewmacmillan.on.ca
Dr. Anne Lortie
Hospital St. Justine
3175 Cote-Ste-Catherine
Montreal, PQ H3T 1C5
Canada
Phone: (514) 345-4931
Fax: (514) 345-4787
Email: lortie.a@sympatico.ca
Dr. Elaine Wirrell
Alberta Children's Hospital
Division of Neurology
1820 Richmond Rd SW
Calgary, AB T2T 5C7
Canada
Phone: (403) 943-7306
Fax: (403) 943-7609
Email: elaine.wirrell@calgaryhealthregion.ca
Dr. Chais Calańa Gonzalez
Espec. Nutrition
Pediatric Hospital
Havana City
Cuba
Email: chaiscala@infomed.sld.cu
SOUTH AMERICA
Dr. Luis R. Panico
Mendoza 3373
(3000) Santa Fe
Argentina
Phone/fax: +54 342 4558768
Email: dietasur@hotmail.com
http://usuarios.arnet.com.ar/mdemartini/index.htm
Dr. Maria Joaquina Marques-Dias
Professor of Neurology
University of Săo Paulo
Av Dr Eneas C Aguiar 647
05403-900 Săo Paulo, SP
Brazil
Phone: (11) 3069 8673
Fax:(11) 3069 8503
Email: majomadi@usp.br
Dr. Marcio M Vasconcelos
Av. das Americas, 700 sl 229 bl 6
Universidad Federal Fluminese
22640-100 Rio de Janeiro - RJ
Brazil
Phone: (55-21) 2132-8080
Email: mmvascon@centroin.com.br
Dr. Andrea Avellanal
Hospital Británico
Benito Nardone 2217
11.300 Montevideo
Uruguay
Phone: 5982-711 91 86
Email: cinacina@adinet.com.uy
Dr. Luis Carlos Núńez López
Pediatric Neurologist Carrera 29 # 47-108
Edificio Somes. Consultorio 20.
Bucaramanga
Colombia
Phone: 577 6475723
Fax: 577 6436124 extension 136
Email: lcnl007@intercable.net.co
 
EUROPE
Dr. Martha Feucht
Universitatsklinik fur Neuropsychiatrie des Kindes- und Jugendalters
Wahringer Gurtel 18-20
1090 Wien
Vienna
Austria
Phone: +43-40400-3012
Fax: +43-40400-2793
Email: martha.feucht@univie.ac.at
Dr. Barbara Plecko
University Klinik für Kinder-und Jugendheilkunde Graz
Auenbruggerplatz 30
A-8036 Graz
Austria
Phone: +43 316 385 82813
Fax: +43 316 385 2657
Email: barbara.plecko@meduni-graz.at
Dr. Lieven Lagae
Kinderneurologie - Epilepsie
Klinische Neurofysiologie
University Hospitals of Gasthuisberg
Herestraat 49
B-3000 Leuven
Belgium
Phone: +32 16 34 38 45
Fax: +32 16 34 38 42
Email: Lieven.Lagae@uz.kuleuven.ac.be
Nina Barisic, MD PhD
Professor of Pediatrics and Child Neurology
Department of Pediatrics
Division of Pediatric Neurology
Clinical Medical Center Zagreb
Zagreb medical school
Rebro,Kispaticeva 12
Zagreb, Croatia
Phone 00 385-1-23-88-531
Fax 00 385 1 24 21 894
Email: nina.barisic@zg.htnet.hr
Dr. Vladimir Komarek
Charles University Prague
2nd Medical School
Vuvalu 84, 150 06 Praha 5
Czech Republic
Phone: +420 2 2443 3302
Fax: +420 2 2443 3322
Email: Vladimir.komarek@lfmotol.cuni.cz
Dr. Marina Nikanorova
Danish Epilepsy Centre, Dianalund
Kolonivej 1
4293 Dianalund
Denmark
Phone: (+45) 58271062
Dr. Peter Uldall
University Hospital of Copenhagen
Copenhagen
Denmark
phone +4535455096
fax +4535456717
Email: peter.uldall@rh.hosp.dk
Dr. Elina Liukkonen
Helsinki and Vusimaa Hospital
Hospital for Children and Adolescents
PO Box 280
Finland
Phone: 011-358-9-4711-4711
Fax: 011-358-9-471-80-413
Email: elina.liukkone@hus.fi
Dr. Anne de Saint-Martin
Neuropédiatre
Service de Pédiatrie 1
CHU de Hautepierre
67098 Strasbourg Cedex
France
Phone: 33(0)388127734
Fax: 33(0)388128156
Email: anne.desaintmartin@chru-strasbourg.fr
Dr. Olivier Dulac
Hopital Saint Vincent de Paul
and Nadia Bahi-Buisson, MD, PhD
Service de Neuropédiatrie et Maladies Métaboliques
Hopital Necker Enfants Malades
149 Rue di Sevres
Paris 75743
France
Phone: 33 140 488111
Email: o.dulac@nck.ap-hop-paris.fr
Email: nadia.bahi-buisson@nck.ap-hop-paris.fr
Dr. Laurence Lion Francois
Centre hospitalier Lyon Sud
Département de Neurologie pédiatrique
165 chemin du grand Revoyet
69 495 Pierre Bénite Cédex
France
Phone: 04 78 86 14 95
Fax: 04 78 86 57 16
Email: laurence.lion@chu-lyon.fr
Dr. Birgit Walther
Teaching Hospital of the Charite
Humboldt University
Herzbergstrasse 79
D-10362 Berlin
Germany
Phone: 49 030 54723539
Fax: 49 0 30 54723502
Email: b.walther@keh-berlin.de
Dr. R. Madeleyn
Dr. T. Reckert
Filderklinik - Kinderabteilung
Im Haberschlai 7
D-70794 Filderstadt
Germany
Phone: +49-711-7703-0
Fax: +49-711-7703-1380
Email: t.reckert@filderklinik.de
www.filderklinik.de
Dr. F.A.M. Baumeister
Child Neurology
Kinderklinik und Poliklinik der Technischen Universität München,
Kinderklinik Schwabing,
Kölner Platz 1,
80804 München
Germany
Phone: 089-3068-3352
Fax: 089-3068-3887
Email: FAM.Baumeister@lrz.uni-muenchen.de
Dr. Joerg Klepper
Aschaffenburg Children's Hospital
Am Hasenkopf
63739 Aschaffenburg
GERMANY
Phone: ++49/6021/32-3601
Fax: ++49/6021/32-3699
Email: joerg.klepper@klinikum-aschaffenburg.de
Dr. Dietz Rating
Dep. Pediatric Neurology
Children´s Hospital
University of Heidelberg
Im Neuenheimer Feld 153
69120 Heidelberg
Germany
Phone: 49.6221.56-2334, -2311
Fax: 49.6221.56 5744
Email: Dietz.Rating@med.uni-heidelberg.de
Dr. Thanos Covanis
Neurology Department
The Childrens Hospital "Agia Sophia"
Thivon and Levadis
11527, Athens
Greece
Phone: +302107751637
Email: graaepil@otenet.gr
Dr. A. Evangeliou
Papageorgiou Hospital
Thessaloniki
Greece
Phone 30 2310895100
Email: evangeli@med.uoc.gr
Dr. Viktor Farkas
University Children’s Hospital,
Semmelweis Medical School, Budapest
Bókay 53.
H-1083 Budapest
Hungary
Email: klissz@yahoo.de
Dr. Yr Sigurdardottir
Icelandic diagnostic center
Digranesvegi 5
200 Kopavogur
Iceland
Phone: (354) 510-8400
Fax: (354) 510-8401
Email: yr@greining.is
Drs. Bryan Lynch and Aisling Myers
The Childrens University Hospital
Temple Street
Dublin 1
Ireland
Phone: 00-353-86-8197831
E-mail: aislingmyers@hotmail.com
Dr. Giangennaro Coppola
Clinic of Child Neuropsychiatry
Second University of Naples
Italy
Phone: 0039-81-5666695
Fax: 0039-81-5666694
Email: giangennaro.coppola@unina2.it
Dr. Federico Vigevano
Department of Neurology
Bambino Gesů Children's Hospital 00165 Rome
Italy
Phone: 0039-06-68592262
Fax: 0039-06-68592463
Email: vigevano@opbg.net
Prof. Pierangelo Veggiotti
Dipartimento di Clinica Neurologica e Psichiatrica dell'Etŕ Evolutiva
Laboratorio EEG dell'etŕ evolutiva
Fondazione "Istituto Neurologico Casimiro Mondino"
Via Ferrata 6 - 27100 – Pavia
Italy
Phone: +39-0382-380.344
Fax: +39-0382-380.286
Email: pveggiot@unipv.it
Dr. Paul Augustijn
Observatie Kliniek voor Kinderen "Primula"
S.E.I.N.
Postbus 540
2130 AM Heemstede
The Netherlands
Phone: 31(0)23-558800
Fax: 31(0) 23-558229
Email: paugustijn@sein.nl
Elles van der Louw (dietitian)
Erasmus MC- Sophia
UMC Utrecht Wilhelmina's Childrenshospital
PO Box 2060
Room sp2434
3000 CB Rotterdam
The Netherlandds
Phone: 003110-4636290
Dr. Björn Bjurulf
Spesialsykehuset for epilepsi
Postboks 53
1306 Bćrum postterminal
Sandvika
Norway
Phone: 47-6755 4000
Fax: 47-6754 5321
Email: bjorn.bjurulf@epilepsy.no
Dr. Maria Zubiel
Dept. of Child Neurology
Institute of Polish Mother Memory Hospital
93-338 Lodz, Rzgowska 281/289
Poland
Phone: 004842 2712080
Fax: 004842 2711412
Email: mzubiel@op.pl
Dr. Sergiusz Jozwiak
Professor and Head, Pediatric Neurology
The Children's Memorial Health Institute
Al.DZieci Polskich 20
04-736 Warszawa
Poland
Phone: 4822-8153417
Fax. 4822- 8157402
Email: jozwiak@czd.waw.pl
Dr. Sergey Aivazyan
Head of Child Neurology
The Child Moscow Research Hospital
Aviatorov Street, 38
SoIntsevo
Moscow
Russia
Phone: (095) 4521022, +79166204051
Email: abc1231961@mail.ru
Dr. Lesley Nairn
Consultant Paediatrician
Royal Alexandra Hospital
Paisley
Scotland
Phone: 0141 580 4460
Email: Lesley.Nairn@rah.scot.nhs.uk
Dr. Nebojsa J. Jovic
Clinic of Neurology and Psychiatry for Children and Youth
Dr Subotica 6a Street
11 000 Belgrade
Serbia and Montenegro
Phone: +381 11 2658 355
Fax: +381 11 64 50 64
Email: njjovic@eunet.yu
Dr. David Neubauer
Department of Child, Adolescent & Developmental Neurology
University Childrens' Hospital
Vrazov trg 1
1525 Ljubljana
Slovenia
Phone: +386.1.5229.273
Fax: +386.1.5229.357
Email: david.neubauer@mf.uni-lj.si
Dr. J.Campistol
Cap Servei de Neurologia
Hospital Sant Joan de Déu
Passeig Sant Joan de Déu, 2
08950-Esplugues (Barcelona).
Spain
Phone: 93 2532153
Fax: 93 2033959
Email: campistol@hsjdbcn.org
Dr. Antonio Gil-Nagel
Servicio de Neurología
Programa de Epilepsia
Hospital Ruber Internacional
La Masó 38, Mirasierra
28034 Madrid
Spain
Phone: 0034-913875250
Fax: 0034-913875333
Email: agnagel@ya.com
Dr. Per Amark
Astrid Lindgrens Childrens Hospital
Karolinska Hospital
S-171 76 Stockholm
Sweden
Phone: +46 8 5177 7026
Fax: +46 8 5177 7608
Email: per.amark@ks.se
Dr. Oswald Hasselmann
Neuropediatrics
Ostschweizer Kinderspital
Claudiusstrasse 6
CH-9006 St. Gallen
Switzerland
Phone: +41 (0) 71 243 -7 -363 bzw. -111
E-Mail: oswald.hasselmann@gd-kispi.sg.ch
Dr. Gabriela Wohlrab
University Children's Hospital,
Neurophysiological Department, Steinwiesstrasse 24,
CH-8032 Zürich
Switzerland
Phone: 0041 1 266 77 01
Email: Gabriele.Wohlrab@kispi.unizh
Dr. Meral Topcu
Prof. of Pediatrics and Pediatric Neurologist
Hacettepe Children's Hospital
Dept. of Child Neurology
06100 Ankara
Turkey
Phone: 90-312-3051165
Fax: 90-312-4266764
Email: mtopcu@hacettepe.edu.tr
Dr. Helen Cross
Reader and Honorary Consultant in Paediatric Neurology
Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust
The Wolfson Centre
Mecklenburgh Square
London WC1N 2AP
UK
Phone: 44-207-813-8488
Fax: 44-207-829-8627
Email: h.cross@ich.ucl.ac.uk
Dr. Colin Ferrie
Department of Paediatric Neurology
Clarendon Wing
Leeds General Infirmary
Leeds LS2 9NS
UK
Phone: 0113 392 2188
Fax: 0113 392 5731
Email: Collin.Ferrie@leedsth.nhs.uk
Dr. Frances Gibbon
Department of Child Health
University Hospital of Wales
Cardiff
UK
Phone: 44 29 2074 3542
Email: Frances.Gibbon@cardiffandvale.wales.nhs.uk
Dr. Jayaprakash A Gosalakkal
Consultant Paediatric Neurologist
University Hospitals of Leicester
CDC/Windsor LRI
Leicester LE1 5WW
UK
Phone: 011441162585564
Fax: 011442587637
Email: Jay2world@aol.com
Dr. Sunny George Philip
Consultant Paediatric Neurologist
Birmingham Childrens Hospital
Birmingham
UK
B4 6NH
Phone: 011441213338149
Fax: 011441213338151
Email: SUNNY.PHILIP@bch.nhs.uk
Dr. Timothy Martland
Consultant Paediatric Neurologist
The David Lewis Centre
Mill House, Warford
Near Alderley Edge
Cheshire SK9 7UD
UK
Phone: +44 161 727 2346
Email: Timothy.Martland@CMMC.nhs.uk
Dr. Ruby Schwartz
Central Middlesex Hospital
Acton Lane
London NW10 7NS
UK
Phone: 020 8453 2121
Fax: 020 8453 2096
Email: Ruby.Schwartz@nwlh.nhs.uk
Dr. Neil H. Thomas
Consultant Paediatric Neurologist
Southampton University Hospitals NHS Trust
Southampton General Hospital
Mailpoint 021
Tremona Road
Southampton SO16 6YD
UK
Phone: +44 23 8079 4457
Fax: +44 23 8079 4962
Email: neil.thomas@suht.swest.nhs.uk
 

MIDDLE EAST
Dr. Mohammad Ghofrani
Professor of Paediatric Neurology
Shaheed Beheshti University of Medical Sciences and Health Services:
Mofid Hospital
Shariati St.
Tehran
Iran
Phone: 98 21 22200041
Dr. Bruria Ben’Zeev
Safra Children's Hospital
Sheba Medical Center
Ramat Gan
Israel 52621
Phone: 97235302577
Email: benzeev4@netvision.net.il
Dr. Tally Lerman-Sagie
Director of Pediatric Neurology Unit
Wolfson Medical Center
Holon
Israel
Phone: 97235028458
Fax: 97235028141
Email: asagie@post.tau.ac.il
Dr. Generoso G. Gascon
Dept. of Neuroscience, MBC J-76
King Faisal Specialist Hospital & Research Center
P.O. Box 40047 Jeddah 21499
Saudi Arabia
Phone: +(966-2) 667-7777, Ext. 5813
Fax: +(966-2) 667-7777, Ext. 5819
Email: generoso_gascon@hotmail.com

AFRICA
Dr. Simon Strachan
Bedford gardens Hospital
Paediatric Centre
Bradford Road
Bedford gardens
Gauteng
South Africa
Phone: (011) 493 2613/ (011) 622 2771
Email: sstracha@mweb.co.za
Email: megawlk@absamail.co.za
Dr. Jo M Wilmshurst
Head of Paed Neurology
5th Floor ICH
Department of Paediatrics
Red Cross Children's Hospital
Rondebosch
Cape Town 7700
South Africa
Fax: 027 21 689 2187
Email: wilmshur@ich.uct.ac.za
ASIA
Liao Jian Xiang, MD, PhD
Shenzhen Children's Hospital
China Medical University
7019 Yi Tian Road
Shenzhen, Guangdong Province
P R China 518026
Phone:+86-755-83936150
Fax:+86-755-83936148
Email: epilepsycenter@medmail.com.cn
Drs. Ada Yung and Virginia Wong
Department of Paediatrics and Adolescence Medicine
University of Hong Kong
Queen Mary Hospital
Hong Kong SAR
Phone: (852)-2855-4485
Fax: (852)-2855-1523
Email: vcnwong@hkucc.hku.hk
Email: ayung@hkucc.hku.hk
Dr. Janak Nathan
Shushrusha Hospital
Ranade Road, Dadar W
Mumbai 400028
India
Phone: 091-22-24446615
Email: jsvpnat@hotmail.com
http://www.ketodietindia.org
Dr. Yukio Fukuyama
Child Neurology Institute
6-12-17-201 Minami-Shinagawa, Shinagawa-ku
Tokyo 140-0004
Japan
Phone: 81-3-5781-7680
Fax: 81-3-3740-0874
E-mail: yfukuyam@sc4.so-net.ne.jp
Dr. Hirokazu Oguni
Dept of Pediatrics
Tokyo Women's Medical University
8-1 Kawada-cho, Shinjuku-ku
Tokyo 162-8666
Japan
Phone: +81 3 3353 8111
Fax: +81 3 5269 7338
Email: hoguni@ped.twmu.ac.jp
Dr. Benilda Sanchez
Head of the Epilepsy Monitoring Program of St.Luke's
Manila
Philippines
Phone: (632)723-0301 ext.5452
Fax: (632)727-5452
Email: beni779@hotmail.com
Dr. Hian-Tat Ong
Consultant, Paediatric Neurology and Developmental Paediatrics
Children's Medical Institute
National University Hospital
Singapore
Phone: 065-67724391
Fax: 065-67797486
Email: OngHT@nuh.com.sg
Dr. Yong Seung Hwang
Professor, Pediatrics, Pediatric Neurology
Seoul National University Children’s Hospital
28 Yon Gun Dong, Jong Ro Gu
Seoul, 110-744
South Korea
Phone: 82-2-760-3629
Fax: 82-2-743-3455
E-mail: childnr@plaza.snu.ac.kr
Dr. Heung Dong Kim
Associate Professor
Dept. of Pediatrics, Director in Child Neurology
Yonsei University College of Medicine, Severance Hospital
134, Shinchondong, Seodaemun-gu,
Seoul, 120-752
South Korea
Phone: 82-2-361-5511
Fax: 82-2-393-9118
E-mail: hdkimmd@yumc.yonsei.ac.kr
Dr. Huei-Shyong Wang
Division of Pediatric Neurology
Chang Gung Children's Hospital
Chang Gung University
Taiwan
Phone: 886 (0)968 110264
Fax: 886 3 3277295
Email: wanghs444@cgmh.org.tw
Dr. Pipop Jirapinyo
Professor of Pediatrics, Pediatric Nutritionist
Nutrition Unit
Department of Pediatrics
Faculty of Medicine Siriraj Hospital
Mahidol University
2 Prannok Road
Bangkoknoi, Bangkok 10700
Thailand
Phone: (662) 411-2535
Email: sipjr@mahidol.ac.th
Dr. Pongkiat Kankirawatana
Director, Clinical Neurophysiology Lab
Pediatric Neurology, CHB-314
The Children's Hospital of Alabama
1600 7th Ave S.
Birmingham, AL 35233-1711
(information regarding Thailand experience)
Phone: 205-996-7850
Fax : 205-996-7867
Email: PKankirawatana@peds.uab.edu
AUSTRALIA / NEW ZEALAND
Dr. Deepak Gill
Paediatric Neurologist
Children's Hospital at Westmead
Cnr Hawkesbury Rd & Hainsworth St
Westmead
Sydney NSW 2145
Australia
Phone: 02 9845 2694
Fax: 02 9845 3905
Email: DeepakG@chw.edu.au
Dr. John Lawson
Child Neurologist
Sydney Children's Hospital
Sydney
Australia
Phone: 61 2 93821658
Fax: 61 2 93821580
Email: Lawson@SESAHS.NSW.GOV.AU
Dr. Mark T. Mackay
Consultant Neurologist
Department of Neurology
Royal Children's Hospital
Flemington Road, Parkville
Victoria 3052
Australia
Phone: +613-9345-5641
Fax: +613-9345-5977
Email: mark.mackay@rch.org.au
Dr. Lakshmi Nagarajan
Princess Margaret Hospital for Children
GPO Box D184
Perth WA 6840
Australia
Phone: (08) 9340 8364
Fax: (08) 9340 7063
Email: Lakshmi.Nagarajan@health.wa.gov.au
Dr. Thorsten Stanley
Senior Lecturer in Paediatrics
Wellington School of Medicine and Health Sciences
University of Otago
PO Box 7343 Wellington South
Wellington
New Zealand
Phone: +64 4 3855 999
Fax: +64 4 3855 898
Email: paedtvs@wnmeds.ac.nz
 

This list was created via email and phone contact by Dr. Eric Kossoff and epilepsy.com. It does not necessarily represent all ketogenic diet centers available, but merely the author’s best attempts to find centers that have described an interest in offering the diet and who have internet access. We take no responsibility in the quality of care from these centers. If you have (or are aware of) a center not listed here, please contact Dr. Eric Kossoff at ekossoff@jhmi.edu. It first appeared in Epilepsia in 2005.

Ketogenic Diet

The ketogenic diet Ketogenic dietA high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are difficult to control with medications.Closeis a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close It is prescribed by a physician and carefully monitored by a dietitian. It is more strict, with calorie, fluid, and protein measurement and occasional restriction than the modified Atkins diet, which is also used today.

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 usually uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. Ketones are not dangerous. They 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 SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closecontrol. However, there are many other theories for why the diet will work.

Who will it help?

Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines. It is particularly recommended for children with the Lennox-Gastaut syndrome. SyndromeA group of signs and symptoms that collectively define or characterize a disease or disorder; signs are objective findings such as weakness, and symptoms are subjective findings such as a feeling of fear or tingling in a finger.Close

Doctors seldom recommend the ketogenic diet for adults. However, in the limited studies that have been done, the diet seems to work just as well, although it is very restrictive for most adults. Studies are underway to evaluate the modified Atkins diet in this population.

The ketogenic diet has been shown in case reports and case series to be particularly effective for some epilepsy conditions. These include infantile spasms, Rett syndrome, tuberous sclerosis Tuberous sclerosisA disease in which benign tumors affect the brain, eyes, skin, and internal organs; associated with mental retardation and seizures; inherited as an autosomal dominant trait. Closecomplex, Dravet syndrome, Doose syndrome, and GLUT-1 deficiency. Using a formula-only ketogenic diet for infants and gastrostomy-tube fed children may lead to better compliance and possibly even improved efficacy. EfficacyEffectivenessClose The diet works well for children with focal seizures, but may be less likely to lead to an immediate seizure-free result. In general, the diet can always be considered as long as there are no clear metabolic or mitochondrial reasons not to use it.

What is it like?

The typical ketogenic diet, called the "long-chain triglyceride diet," provides 3 to 4 grams of fat for every 1 gram of carbohydrate and protein. The dietician recommends a daily diet that contains 75 to 100 calories for every kilogram (2.2 pounds) of body weight and 1-2 grams of protein for every kilogram of body weight. If this sounds complicated, it is! That's why parents need a dietician's help.

A ketogenic diet “ratio” is the ratio of fat to carbohydrate and protein grams combined. A 4:1 ratio is more strict than a 3:1 ratio, and is typically used for most children. A 3:1 ratio is typically used for infants, adolescents, and children who require higher amounts of protein or carbohydrate for some other reason.

The kinds of foods that provide fat for the ketogenic diet are butter, heavy whipping cream, mayonnaise, and oils (e.g. canola or olive). Because the amount of carbohydrate and protein in the diet have to be restricted, it is very important that the meals be prepared carefully. No other sources of carbohydrates can be eaten. (Even toothpaste might have some sugar in it!). For this reason, the ketogenic diet is supervised by a dietician. The parents and the child become very familiar with what can and cannot be eaten.

What happens first?

Typically the diet is started in the hospital. The child usually begins by fasting (except for water) under close medical supervision for 24 hours. For instance, the child might go into the hospital on Monday, start fasting at 6 p.m. and continue to have only water until 6 a.m. on Tuesday. The diet is started at that point, either by slowly increasing the calories or the ratio. This is the typical Hopkins protocol. There is growing evidence that fasting is probably not necessary for long-term efficacy, although does lead to quicker onset of ketosis. The primary reason for admission in most centers is to monitor for any increase in seizures on the diet, ensure all medications are carbohydrate-free, and educate the families.

Does it work?

Several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications. Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. Some children, usually 10-15%, even become seizure-free.

Children who are on the ketogenic diet continue to take seizure medicines. Some are able to take smaller doses or fewer medicines than before they started the diet, however. The time when medications can be lowered depends on the child and the comfort level of the neurologist. Evidence suggests it can be done as early as the diet initiation period safely in many circumstances.

If the person goes off the diet for even one meal, it may lose its good effect. So it is very important to stick with the diet as prescribed. It can be especially hard to follow the diet 100% if there are other children at home who are on a normal diet. Small children who have free access to the refrigerator are tempted by "forbidden" foods. Parents need to work as closely as possible with a dietician.

Are there any side effects?

A person starting the ketogenic diet may feel sluggish for a few days after the diet is started. This can worsen if a child is sick at the same time as the diet is started. Make sure to encourage carbohydrate-free fluids during illnesses.

Other side effects that might occur if the person stays on the diet for a long time are:

  • kidney stones
  • high cholesterol levels in the blood
  • dehydration
  • constipation
  • slowed growth or weight gain
  • bone fractures

Because the diet does not provide all the vitamins and minerals found in a balanced diet, the dietician will recommend vitamin and mineral supplements. The most important of these are calcium and vitamin D (to prevent thinning of the bones), iron, and folic acid.

There are no anticonvulsants that should be stopped while on the diet. Topamax (topiramate) and Zonegran (zonisamide) do not have a higher risk of acidosis or kidney stones while on the diet. Depakote (valproic acid) does not lead to carnitine deficiency or other difficulties while on the diet either. Medication levels do not change while on the diet according to recent studies.

How is the patient monitored over time?

Early on, the doctor will usually see the child every 1-3 months. Blood and urine tests are performed to make sure there are no medical problems. The height and weight are measured to see if growth has slowed down. As the child gains weight, the diet may need to be adjusted by the dietician.

Can the diet ever be stopped?

If seizures have been well controlled for some time, usually 2 years, the doctor might suggest going off the diet. Usually, the patient is gradually taken off the diet over several months or even longer. Just as happens if seizure medicines are stopped suddenly, seizures may become much worse if the ketogenic diet is stopped all at once. Children usually continue to take seizure medicines after they go off the diet. In many situations, the diet has led to significant, but not total, seizure control. Families may choose to remain on the ketogenic diet for many years in these situations.

Where can I find out more information about the diet?

Other than the internet, there are several books about the ketogenic diet available.  One is The Ketogenic Diet: A Treatment for Children and Others with Epilepsy, by Drs. Freeman and Kossoff, which discusses the Johns Hopkins approach and experience.  The Charlie Foundation at www.charliefoundation.org and Matthew’s Friends at www.matthewsfriends.org are parent-run organizations for support. 

Modified Atkins Diet

What is the modified Atkins Diet?
The modified Atkins diet is a modification of the traditional ketogenic diet Ketogenic dietA high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are difficult to control with medications.Closethat had been used for several years by families mostly who had been using the ketogenic diet for many years and eventually stopped weighing and measuring foods. They had noticed ketones still remained high and seizures under control. It was first formally studied in children and adults who had never tried the ketogenic diet at Johns Hopkins Hospital by Dr. Eric Kossoff and colleagues in 2002, with the first paper published in 2003. A larger series of 20 children was published in December 2005.

How is it different from the ketogenic diet?
Although the foods are very similar, there are key differences between the modified Atkins diet and the ketogenic diet. First, with the Atkins diet there is no fluid or calorie restriction. Also, although fats are strongly encouraged, there are no restrictions on proteins. In addition, foods are not weighed and measured, but carbohydrate counts are monitored by patients and parents. It is started outside of the hospital, without a fast, as well. Lastly, foods can be eaten more freely in restaurants and outside the home, and families (and neurologists!) can do it as well. The diet is a "modified" Atkins diet as it allows for less carbohydrates than traditional Atkins (10-20g/day) and more strongly encourages fat intake. Please remember that no diet should be done without a neurologist and dietitian involved.

Who will it help?
At this time, research is underway to help answer this question. Preliminary results in a small number of patients suggests that the modified Atkins diet may help some children with intractable IntractableDifficult to alleviate, remedy, or cure; for example, intractable seizures are difficult to control with the usual antiepileptic drug therapy.Closeseizures.

What is it like?
Lots of high fat foods such as bacon, eggs, mayonnaise, butter,hamburger, heavy whipping, and oils are encouraged. Fluids such as Fruit2O and other flavored waters are favorites of patients. Unlike the ketogenic diet, however, children eat more foods and can cheat with some breads and cake products, as long as the total carbohydrates per day remain below the set amount prescribed by the neurologist. It's still not easy though and most families need help and support. A website by families involved in Dr. Kossoff's first study is at www.atkinsforseizures.com

What happens first?
You should talk with your neurologist and dietitian about how to start the diet and if it's the right decision. Once you do, lab work is usually obtained, and ketone strips are prescribed. Carbohydrates are limited and the foods change overnight (hard to transition).

Does it work?
In early studies so far, yes. About 2/3 had a 50% reduction in seizures after 6 months. Many were able to reduce medications.

Are there any side effects?
Some children and adults lose weight, although for the majority they were overweight to start and it's a good thing! Some children have had increases in cholesterol. Occasionally, the change to this diet and the resultant ketosis can make children feel ill and not want to drink. There is also a risk of kidney stones. For all these reasons, the modified Atkins diet should not be done without physician supervision.

How is the patient monitored over time?
A dietitian should keep track of weight and height periodically, as well as calorie intake in case there is a problem. Dr. Kossoff recommends blood and urine monitoring every three months, and checking urine ketones once or twice a week while on the diet.

Can the diet ever be stopped?
Yes, if a child is seizure-free for a period of time, the diet can sometimes be stopped successfully. Similarly to the ketogenic diet, if it's not helpful, it should be stopped, too.

What's first?

Writing a prescriptionThe first step toward getting treatment for seizures is to see a doctor! The doctor may make a diagnosis of epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close(the doctor might call it a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closedisorder). This step usually will involve some diagnostic tests.

Then comes the treatment. There are many seizure medicines. Each one tends to work better for certain kinds of seizures than for others. The doctor chooses one based on the type of seizure, the person's age, and whether the person has any other medical conditions. The doctor then will usually discuss how to take the medicine, what side effects to look for, and when to come back for a follow-up visit.
 
What you need to do

It's a good idea to find out as much as you can about epilepsy, EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close the treatment, and what you can do to help control the seizures.

Ask your doctor questions. There is no stupid question. Epilepsy.com is a great place to find answers, too!

If the doctor recommends a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicine, learn as much as you can about it, including when and how to take it. Then be sure to follow the doctor's directions. Seizure medicines must be taken each and every day as prescribed. If the right amount is not taken at the right time, the medicine may not be able to prevent seizures.

Ask you doctor about:

Before you visit your doctor
Before you go to the doctor, take some time to list your concerns. Write down any questions you may have in a notebook, even if you think they are silly or unimportant, and take it with you. Don’t be afraid to tell your doctor that there are some aspects of epilepsy that you don’t understand. Epilepsy can be complicated, especially when you are first diagnosed with the condition, so make sure you ask questions. And make sure you understand the answers. If the doctor is explaining something to you and using technical or medical terms you don’t understand, ask him or her to explain it again.

After you visit your doctor
After seeing your doctor, record the highlights of your visit into your notebook. Make notes about any questions you asked and the answers the doctor gave you. Pay special attention to any changes in your treatment or medication that were discussed. Do it as soon as possible, when the information is still fresh in your mind. Then later on, if you have a question about something, you can refer to your notes.

If the first treatment fails

The first seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemedicine that is prescribed may not prevent seizures for some people, even if they follow the doctor's directions completely. Keep a record of seizures and let the doctor know if they continue to happen. Then the doctor may prescribe a larger amount of the medicine.

If seizures still continue, the doctor might prescribe another medicine instead of the first one, or a combination of more than one medicine. No single combination of seizure medicines is best for everyone. It may be necessary to try a series of combinations to find which one works best.

The primary care doctor also may refer the person to a neurologist (a doctor who specializes in disorders of the nervous system, including the brain) or an epileptologist EpileptologistA neurologist with specialty training in epilepsy.Close(a neurologist who specializes in epilepsy) EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Close if the first medicine or two are unsuccessful.

Other possibilities

Doctors know that if the first few medicines fail to stop a person's seizures, the chances are not so good that a different medicine will be completely successful. Then it may be time to consider some other type of treatment.

In addition to medicines, other treatments include the ketogenic diet, Ketogenic dietA high-fat, low-carbohydrate diet used to control seizures in some children with seizures, that are difficult to control with medications.Close vagus nerve stimulation, brain surgery, and investigational treatments. Whether one of these is likely to succeed depends on factors like the person's age and the type of seizures, similar to the way a medicine is selected. They are not always successful, but some people do become seizure-free after several medicines have failed. These treatments are usually prescribed and carried out only by specialists.

People with epilepsy EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closewho have not yet found a successful treatment may read or hear news stories about devices and medicines that are supposed to be better. They wonder whether their doctor should prescribe them instead. It's almost certainly true that better treatments will be available in the future, but it takes years of careful testing to make sure that new things are really safe and effective before a lot of patients start using them.

The first step is to discuss this with your doctor, to understand the status of new treatments and clinical studies. Ask your doctor.

Ask your doctor about:

Seizure First Aid

Here are a few things you can do to help someone who is having a seizure of any kind:

When encountering someone having a seizure SeizureA sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.Closemany people feel ill-equipped in handling this circumstance. They forget that they already have within their possession one essential tool- common sense. The following tips below are simple, common-sense steps to take when responding to a person having a seizure. First-aid isn’t complicated, but it involves a sequence of actions and considerations which are beyond the scope of epilepsy. EpilepsyA disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior.Closecom. If you haven’t taken a course in first-aid and CPR (cardiopulmonary resuscitation) you can check within your community for classes being offered.

Many seizure types-such as generalized absence seizures or complex partial seizures, which involve relatively brief episodes of unresponsiveness- don’t require any specific first-aid measures.

  1. Stay calm
     
  2. Prevent injury
    During the seizure, you can exercise your common sense by insuring there is nothing within reach that could harm the person if she struck it.