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What is Epilepsy?
Epilepsy is a neurological condition which affects the brain.Epilepsy may also be called a ‘seizure disorder’.It is a tendency to have recurrent unprovoked seizures.It is not a mental illness.

What does it mean to the person with epilepsy and his caregivers?

  • Many people have little knowledge or experience of epilepsy. As a result the word `epilepsy’ often evokes feelings of fear, shame and guilt.
  • Accurate information can bring a greater sense of confidence and control and provide strategies to well manage a life with epilepsy.
  • Generally, people with epilepsy cope very well after the initial period of adjustment.
  • The majority of people achieves good seizure control with medication and can live a full and active life.
  • This brochure aims at providing information on Epilepsy to help people with epilepsy and caregivers understand it and cope with it.
  • Knowledge on epilepsy will remove the stigma associated with it and em-power persons with epilepsy (PWE).

What is a Seizure ?

Seizures have different names. Some of these are:

  • Fits
  • Convulsions
  • Turns
  • Our Brain:The human brain is a highly complex structure made up of millions of nerve cells called ‘neurons’. The function of these neurons in the brain is well –regulated. They are responsible for our consciousness, awareness, speech and body movement.
  • The brain , like the heart, has a normal electrical rhythm.
  • When neurons become irritable, the normal electrical rhythm is disturbed .
  • A seizure is caused by a temporary disturbance in the electrical and chem-ical activity of the brain. Abnormal electrical discharges are generated in the brain that cause brief changes in body function and mental function (behavior).
  • Epilepsy is called `mirgi’ in hindi, and `fefre’ in Marathi.

How can you recognize seizures ?

All seizures do not look alike.

How a person looks and what he does during a seizure depends on the part of the brain affected by the electrochemical disturbance.

Seizures can have many forms :

During a seizure, a person may have loss of consciousness, fall down and have uncontrollable jerky movements of both arms and legs . Seizures occur for a few seconds to up to 1-2 minutes. There may be tongue-bite. This is the common form that the public associates with fits. These are convulsions.In some seizures, the person may stop talking, become still and just stare. There is a short lapse in awareness and attention. The person may be aware but not able to respond to others.These seizures are brief and can last few seconds to few minutes.In some, brief jerky movements of one arm and one leg may occur with loss of awareness . Brief episodes of abnormal behavior such as repetitive hand movements or fidgeting may be seen.

When a person has a single seizure in an acute setting of high fever (due to malaria or encephalitis) , head injury or changes in blood chemical composition (metabolic causes) it is not called epilepsy. These seizures subside once the acute illness is treated.

When people get recurrent unprovoked seizures, the condition is called Epilepsy. Epilepsy is generally diagnosed after 2 or more unprovoked seizures.


Frequently asked questions:

Is epilepsy contagious ?

Of course not. It does not spread by any close contact such as shaking hands, kissing, living together or sharing food from the same plate.


Is epilepsy a mental or psychiatric illness ?

No! Epilepsy is not a psychiatric illness or a psychological illness. People with epilepsy are not mad or`psycho” or ` cursed by the spirits’. These are social stigmas attached with epilepsy, but they are misconceptions and are scientifically unfounded.

Epilepsy is a neurological disorder. Knowledge about epilepsy is necessary to overcome the social stigma.



Who gets Epilepsy?

Epilepsy can happen to anyone and at any age. Epilepsy is common.

Did you know?

  • 65 million people around the world have epilepsy. Anyone can develop epilepsy

  • Epilepsy occurs in all ages, races and social classes.

  • It tends to begin more often in children/ adolescents and later, the risk again increases after the age of 65.


What causes Epilepsy?

Some of the known causes are :

  • Brain damage from prenatal and perinatal injury (at the time of birth or just before birth) – due to lack of oxygen to the brain

  • Developmental abnormalities of the brain Brain infections

  • Brain tumours Stroke (brain attack)

  • Head injury /accidents

For many people, the cause of epilepsy is not determined (never found) – these are called idiopathic or cryptogenic epilepsies.



Is epilepsy hereditary? Will I pass it on to my children?

In vast majority of people, epilepsy is not a hereditary condition.Hered itary epilepsy is very rare. Sometimes a predisposition to seizures can be seen in some families where several members are affected. In few people there can be a family (genetic) predisposition.



Epilepsy and Seizure Triggers

Some people may find that seizures occur in a pattern or are more likely to oc-cur in certain situations.

Keeping track of any factors that may precipitate a seizure (also called seizure triggers) can help you recognize when a seizure may be coming.

You may notice one or two triggers very easily, for example if seizures occur only during sleep, or when you are just waking up or when under a lot of stress.Avoiding identified triggers can reduce seizure frequency.


Common triggers are :

  • Sleep deprivation – lack of sleep

  • Fevers associated with cough, cold or stomach upsets

  • Missed medications

  • Flashing bright lights or patterns

  •  Excessive Alcohol or drug abuse ( am-phetamines, ecstasy)

  •  Stress and extreme fatigue

  •  Associated with menstrual cycle (wom-en)

  •  Not eating well, low blood sugar


Are there any food restrictions in epilepsy ?

Absolutely Not. None of the food items vegetarian or non-vegetarian have any role to play in controlling or exaggerating epilepsy.



What are the types of Epilepsy?

There are 2 types of seizures that are most common

A person’s behavior & actions during the seizure will depend on which area of the brain is involved

A) Partial or focal seizures

  • During partial seizures the disturbance in brain activity involves one area of the brain.

  • The seizure may begin with a funny sensation or emotion often referred to as an `aura’.

  • Person may feel like s/he is in a daydream, may be confused and un aware of the surroundings.

  • Person may not respond to peo-ple’s questions and may just stare.

  • Twitching of one side of the body may or may not occur. Usually a person does not collapse.

  • Seizure may last few seconds or few minutes

  • After the seizure, person may be confused/drowsy for a few min-utes.

Person may do funny things like

  • Talk using phrases that make no sense

  • Make chewing movements

  • Fidget with clothes

  • Walk around in circles


 B) Generalised seizures

In these seizures the whole of the brain is involved and consciousness is lost. The most recognised type of seizure is the generalised tonic-clonic convulsive seizure, sometimes called a ‘grand mal’ seizure.

  • The body becomes stiff and person may fall.

  • Jerking of muscles of the arms and legs occur rhythmically

  • Eyeballs may turn upwards

  • There may be lots of saliva in the mouth and tongue may get bitten.

  • Person may make grunting noises and breathing may be labored

  • Person may get incontinent (urinate)

  • This type of seizure often frightens people around. They may think the person is dying or needs emergency care immediately.However most seizures usu-ally last 1 to 3 minutes. Once the seizure ends, person may feel tired and sleepy and may have a headache.

  • Absence seizures: This occurs commonly in children and is often referred to as ‘petit mal’. It can happen in adults too


  • Person suddenly stops what they are doing.Person does not fall down.

  • Person has a `blank’ look & stares straight ahead.

  • Sometimes eyes roll back & lids blink.

  • When seizure stops, person stops staring and goes back to what s/ he was doing.

  • Person may not be able to continue the conversation where you had stopped just before the seizure


Diagnosis of Epilepsy

History from an eye witness is most important. You may need some “special tests”

EEG – (Electroencephalogram)

It records electrical activity from the surface of the brain. It records `brain waves’ using a special machine. Small electrodes are placed all over the scalp and you are asked to lie down quietly and sleep for 15 to 20 minutes.The electrodes record the electrical activity from different areas of the brain. The entire test takes 30 to 40 minutes. It is pain-less and non-invasive. The EEG can help in diagnosis of the type of epilepsy ie whether it is a type of generalized epilepsy or a type of partial epilepsy.

Diagnosis of the type of epilepsy helps your doctor choose the appropriate anti-epileptic medication.


Brain Scan

It is called an MRI scan. The machine used is called a scanner. The test takes half an hour. It can be noisy but it does not hurt.The scanner takes lots of pictures of your brain. They are recorded on film. These pictures help to find out where you have the epilepsy.



Preventing and Managing Epilepsy

How can I prevent epilepsy?

Sometimes we can prevent epilepsy. These are some of the most common ways to reduce your risk of developing epilepsy:

Have a healthy pregnancy. Some problems during pregnancy and childbirth may lead to epilepsy. Follow a prenatal care plan with your health care provider to keep you and your baby healthy.

Prevent brain injuries.

Lower the chances of stroke and heart disease.

Be up-to-date on your vaccinations.

Wash your hands and prepare food safely to prevent infections such as cysticercosis.



How is epilepsy diagnosed?

A person who has a seizure for the first time should talk to a health care provider, such as a doctor or nurse practitioner. The provider will talk to the person about what happened, and look for the cause of the seizure. Many people who have seizures take tests such as brain scans for a closer look at what is going on. These tests do not hurt.


How is epilepsy treated?

There are many things a provider and person with epilepsy can do to stop or lessen seizures.

The most common treatments for epilepsy are:

Medicine.  Anti-seizure drugs are medicines that limit the spread of seizures in the brain. A health care provider will change the amount of the medicine or prescribe a new drug if needed to find the best treatment plan. Medicines work for about 2 in 3 people with epilepsy.

Surgery.  When seizures come from a single area of the brain (focal seizures), surgery to remove that area may stop future seizures or make them easier to control with medicine. Epilepsy surgery is mostly used when the seizure focus is located in the temporal lobe of the brain.

Other treatments. When medicines do not work and surgery is not possible, other treatments can help. These include vagus nerve stimulation, where an electrical device is placed, or implanted, under the skin on the upper chest to send signals to a large nerve in the neck. Another option is the ketogenic diet, a high fat, low carbohydrate diet with limited calories.


Who treats epilepsy?

Many kinds of health providers treat people with epilepsy. Primary care providers such as family physicians, pediatricians, and nurse practitioners are often the first people to see a person with epilepsy who has new seizures. These providers may make the diagnosis of epilepsy or they may talk with a neurologist or epileptologist.

A neurologist is a doctor who specializes in the brain and nervous system. An epileptologist is a neurologist who specializes in epilepsy. When problems occur such as seizures or side effects of medicine, the primary health provider may send the patient to a neurologist or epileptologists for specialized care.

People who have seizures that are difficult to control or who need advanced care for epilepsy may be referred to an epilepsy centers. Epilepsy centers are staffed by providers who specialize in epilepsy care, such as epileptologists and neurologists, nurses, psychologists, technicians and many epilepsy centers work with university hospitals and researchers.


How do I find an epilepsy specialist?

There are several ways you can find a neurologist or an epileptologist near you. Your primary care or family provider can tell you about types of specialists.  The American Academy of Neurologyexternal  and the American Epilepsy Societyexternal  provide a listing of its member neurologists and epilepsy specialists, including epileptologists.

The National Association of Epilepsy Centersexternal also provides a list of its member centers, organized by state.


What can I do to manage my epilepsy?

Self-management is what you do to take care of yourself. You can learn how to manage seizures and keep an active and full life. Begin with these tips:

Take your medicine.

Talk with your doctor or nurse when you have questions.

Recognize seizure triggers (such as flashing or bright lights).

Keep a record of your seizures.

Get enough sleep.

Lower stress.


Health and Safety Concerns

Are there special concerns for women who have epilepsy?

Women who have epilepsy face special challenges. Hormonal changes can cause some women with epilepsy to have more seizures during their period

For women with epilepsy, there are also special concerns about pregnancy, because having a seizure and taking certain drugs during pregnancy may increase the risk of harm to the baby. Women can take the following steps before and during pregnancy to lessen these risks.

If you are a woman with epilepsy who plans to get pregnant, talk with your health team about how to best care for yourself and your baby.


Can a person die from epilepsy?

Most people with epilepsy live a full life. However, the risk of early death is higher for some. We know that the best possible seizure control and living safely can reduce the risk of epilepsy-related death.

Factors that increase the risk of early death include:

More serious health problems, such as a stroke or a tumor. These conditions carry an increased risk of death and may cause seizures.

Falls or other injuries that happen because of seizures. These injuries can be life-threatening.

Seizures that last over 5 minutes. This is a condition called status epilepticus. Status epilepticus can sometimes happen when a person suddenly stops taking seizure medication.

Rarely, people with epilepsy can experience sudden unexpected death in epilepsy (SUDEP). SUDEP is not well understood and experts don’t know what causes it, but they suspect that it is sometimes due to a change in heart beats (rhythm) during a seizure. Sudden death due to heart rhythm changes also happens in people who do not have seizures.

The risk of sudden death is larger for people with major uncontrolled seizures.


If I have epilepsy, can I still drive a car?

Most states and the District of Columbia will not issue a driver’s license to someone with epilepsy unless that person provides documentation that he or she has not had a seizure for a specific amount of time. The seizure-free period ranges from a few months to over a year, depending on the state.

Some states need a letter from your health provider to issue a license when a person has seizures that:

Don’t distract the person from driving.

Happen only during sleep. These are called nocturnal seizures.

Have warning signs that alert the person that a seizure might happen. Sometimes a person feels strange before a seizure. This is called an aura.




If I have epilepsy, can I exercise and play sports?

Sometimes people with epilepsy worry that exercise or sports may worsen their seizures.

Exercise is rarely a “trigger” for seizure activity. In fact, regular exercise may improve seizure control. Safely playing sports can also be great for your physical, mental, and emotional well-being.

It is always important to avoid sports-related injuries that can increase the risk of seizures.



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