Epilepsy Guide: Understanding Epilepsy is Key to Controlling Seizures

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Understanding Epilepsy

Epilepsy is not a newly discovered condition but a well-known disorder of the brain, prevalent since ancient times. The symptoms and causes of epilepsy have been written about nearly 3,000 years ago. Then it was thought that epilepsy was caused by demons attacking the person. Today, we are aware that epilepsy is a well-known medical condition affecting around 50 million people worldwide.

Let us understand what epilepsy is about.

What is Epilepsy and What is a Seizure?

Our brain is a complex organ made up of many specialized brain cells. These brain cells perform electrical activities, which occur in a normal pattern and are responsible for the normal functioning of the brain and the body. Epilepsy is a disorder of the brain cells where in a recurrent, sudden and episodic burst of excess electrical activity results in a change in behaviour of the person.

End or After-seizure

However, a seizure is one single episode of such a change in electrical activity. One single episode of a seizure may or may not be a part of epilepsy. Instead, it can be a symptom of different conditions that can affect the brain, e.g. kidney failure, liver failure, excessive alcohol or illegal drug intake, some medications, change in blood glucose levels, fever etc. Seizures often do not recur in a person, if the above mentioned conditions are controlled. In epilepsy, seizures occur again and again and they are unpredictable.

What are the Different Types of Epilepsy?

Epilepsy is of different types depending upon the pattern of electrical abnormality in the brain. In some cases, the electrical abnormality can start in the small area of the brain, whereas, in some cases it can affect the whole brain.

What are the Symptoms or Behavioural Changes Experienced During Epileptic Attacks?

Different areas of the brain control different functions of the body. Depending upon which area of the brain is involved and the type of epilepsy; the behavioural changes happening during an epileptic seizure are different. The symptoms or behavioural changes are unique to every patient. Some important behavioural changes are listed below. It is not implied that every person with epilepsy will experience every symptom described below.

A person with epilepsy is active and normal in-between the seizures.

Seizures or epileptic attacks have a beginning, middle and an end.

Beginning: When an individual is aware of the beginning, it may be thought of as a warning or 'aura'. On the other hand, an individual may not be aware of the beginning and, therefore, have no warning. Below are some types of auras experienced by some patients:

  • Abnormal smell, sound or taste
  • Decreased clarity in seeing
  • Racing thoughts
  • Strange feelings
  • Fear/panic/anxiety
  • Headache
  • Lightheadedness
  • Need to vomit

Middle: The middle of the seizure may take several different forms depending on the type of epilepsy and the area of brain involved.

The symptoms can range from:

  • Confusion
  • Becoming unaware of the surrounding
  • Falling down
  • Jerking of body
  • Difficulty talking
  • Drooling of saliva
  • Eyes rolling up
  • Inability to move
  • Loss of control on urine and stool
  • Making abnormal sounds
  • Teeth clenching/grinding
  • Tongue biting
  • Twitching movements
  • Breathing difficulty
  • Heart racing
  • Sweating

Or the symptoms can range from:

  • Simple staring
  • Eyelids fluttering
  • Unresponsiveness
  • Abnormal movement of tongue and lips
  • Hand waving
  • Foot stomping
  • Aimlessly wandering

End or After-seizure: After the seizure stops, the person may/may not experience the following symptoms for a short while:

  • Memory loss and confusion
  • Depression and sadness
  • Injuries
  • Difficulty in talking
  • Exhaustion and weakness
  • Headache
  • Wanting to vomit
  • Thirst
  • Shame/embarrassment

Does a Person who Suffers a Single Seizure Have Epilepsy?

A single seizure in a person does not mean that he/she has epilepsy. It is estimated that the majority of people who have had an isolated, single seizure will never have another one. On the other hand, persons who are destined to develop epilepsy will have the second seizure after a variable interval, usually within one year of the first one.

What are the Causes for Epilepsy?

The reasons as to why epilepsy occurs are different for people of different ages. But what's true for every age is that the cause is unknown in about half of the people with epilepsy.

However, in some cases, the causes can be traced and could be one of the following:

  • Bleeding inside the brain
  • Abnormal blood vessels in the brain
  • Serious head injury or lack of oxygen to the brain
  • Brain tumours
  • Infections of the brain, e.g. brain abscess
  • HIV infection
  • Stroke
  • Abnormal brain development
  • Trauma to the newborn during childbirth
  • Family history of epilepsy
  • Alzheimer's disease (disease of old age affecting the memory) etc.

What is the Frequency of Attacks in Patients with Epilepsy?

Epileptic attacks can vary in frequency from less than one per year to several per day. This depends upon the type of epilepsy, various trigger factors and the success of the treatment.

What are the Trigger Factors for an Epileptic Attack?

Trigger factors are those events or conditions that are responsible for resulting in an epileptic attack. Some of them are noted below:

  • Forgetting to take medicines
  • Stress
  • Lack of sleep
  • Menstruation (Monthly hormonal cycle in women)
  • Illnesses both with/without fever
  • Heavy use of alcohol or other drugs which can result in a seizure

These triggers can be avoided to prevent epileptic seizures.

Some important tips in the 'Living with Epilepsy: Some DO's and DON'Ts' section will help you manage your condition better.

How is Epilepsy Diagnosed?

Epilepsy is diagnosed by a doctor with the help of information about the events that happened before the attack, during the attack and after the attack. The description of such events can be given to the doctor by the patient as well as witnesses of the epileptic attack. The doctor may ask the following questions:

  • At what age did the seizures begin?
  • What factors resulted in the seizures?
  • What is felt before, during and after the seizures?
  • How long do the seizures last?
  • How frequently do they occur?
  • Has there been previous treatment for epilepsy?
  • Which medicines have been prescribed and in what dosages?
  • Was the treatment effective?

Apart from interviewing and examining the patient, the doctor may order a few tests as per his/her discretion in order to confirm the diagnosis, find the cause of the seizures, and decide on further management and monitoring of treatment.

Some Important Tests

A. Electroencephalogram (EEG)

This is a test done to trace the electrical activity of the brain. During the test, many wires called electrodes are attached to the patient's scalp and they pick up the electrical activity of the brain. The information recorded is transferred onto a computer where it is analysed. In a patient with epilepsy, the electrical activities recorded are abnormal (as against the normal electrical activities of a normal brain). Thus, an EEG not only helps to diagnose a seizure, but also to locate from which part of the brain it is arising. Sometimes it helps to find the possible cause.

B. Brain Scans

Computerized tomography (CT) and magnetic resonance imaging (MRI) are scans that produce pictures of the brain and may reveal the structural abnormalities in the brain which may be the cause of epilepsy. These may or may not be used by the treating doctor, depending upon the requirement.

C. Blood Tests

There are certain blood tests that the doctor may ask for to confirm the diagnosis. Also, blood tests are important to check drug levels during the treatment, to correlate side effects with the drugs, to know the drug reactions in patients receiving more than one drug for control of their epilepsy and in certain conditions, such as pregnancy or in patients with liver/kidney failure, where the drug levels can change.

How is Epilepsy Treated?

Epilepsy is a manageable condition. Some important tips are discussed in the 'Living with Epilepsy: Some DOs and DON'Ts' section. The mainstay of treatment in epilepsy is medication. The drugs used for treating epilepsy are called anti-epileptic drugs.

The good news is that with any anti-epileptic medicine, 80% of people with epilepsy remain free of attacks at any point of time. There are a variety of anti-epileptic drugs available. The doctor will decide the appropriate medicine, depending upon the type of epilepsy, age and gender of the patient, and any related illnesses.

Depending upon the condition and the extent of control possible over the epileptic attacks, the doctor may prescribe one drug or multiple drugs. Generally, the drugs are started at lower doses and, gradually, the dose is increased till epilepsy control is achieved. While prescribing the drugs, the doctor will explain the side effects related to the medicines.

It is very essential to adhere to the treatment and avoid missing doses in order to achieve control over epileptic attacks.

As mentioned above, most cases of epilepsy can be controlled with medicines alone. However, in some cases, depending upon the cause of the epilepsy, and after thorough examination the doctor may recommend surgery as a treatment for epilepsy, if required. Surgery is attempted to remove the area of the brain which is responsible for the epileptic attacks. The success of the surgery is very variable and depends on various factors which should be discussed with your treating doctor.

Does Anti-Epileptic Treatment Have to be Continued for Life?

The anti-epileptic treatment may or may not be continued for life. The criterion for stopping the treatment is very variable. It depends on the type of epilepsy, the age of onset of symptoms, and the extent and duration of control over the epileptic attacks when under treatment. In few fortunate patients the treatment may be stopped if the patient remains seizure-free for a period of 2-5 years. This decision is made by the treating doctor who decides after analysing different aspects of the situation. However, there are chances that the seizure may occur again after stopping treatment and the treatment might have to be started again.

Never stop the treatment, unless the doctor advises to do so.

Can Epilepsy be Cured?

Epilepsy cannot be cured in the real sense of the term. Epilepsy is a disease like hypertension, asthma and diabetes. Seizures can be totally controlled in almost 75-80% of epilepsy cases. In some people, especially children, the seizures never recur after stopping their anti-epileptic treatment; these people can be considered to be cured of their epilepsy.

Dispelling Misconceptions About Epilepsy

Despite scientific advances, it is unfortunate that, even today, there are fears, misunderstandings, discrimination and social stigma surrounding a person with epilepsy. Lack of knowledge and information about the condition are the main culprits responsible for such misconceptions. Some of these are addressed below:

Is Epilepsy a Very Rare Disorder?

No. Epilepsy is not a very rare disorder. Epilepsy affects 50 million people worldwide. In India, epilepsy has been identified as a public health problem. It is found to be the second leading problem affecting the brain in both the urban and rural populations. It is estimated that in India (with a population of more than 1 billion), there are 6-10 million people with epilepsy.

Are People with Epilepsy Mentally Ill?

No. Epilepsy is not the same as mental illness and, in fact, the majority of people with seizures do not develop mental health problems. There may be associated mood problems like anxiety or depression in a patient with epilepsy on account of their disease and associated issues. Equating epilepsy with madness is wrong.

Are People with Epilepsy Violent or Crazy?

No. 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 behaviours than other people.

Many features of seizures and their immediate after effects can be easily misunderstood as "crazy" or "violent" behaviour. 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.

However, once the attack is over, they return to normalcy and usually display normal behaviour in between attacks.

Are Children with Epilepsy Dull?

Except for children who are born with obvious mental handicaps, children with epilepsy have normal intelligence and should be encouraged by parents and teachers to attend school and complete their education.

Is Epilepsy a Curse or Wrath of God?

No. It is unfortunate that, even today, we have to face such questions. 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 of the brain and can affect anyone irrespective of his/her deeds and character.

Does Epilepsy Spread Through Touching or Coughing?

No, epilepsy does not spread through touching or coughing. People suffering an attack need help and onlookers should not refrain from helping the person because of such irrational beliefs.

Does the Use of an Onion, Metal, Etc., Help in Terminating an Ongoing Epileptic Attack?

No. Some people think that an epileptic attack can be terminated by making the person smell onions or dirty shoes, or by placing a metal key in the person's hand. These are irrational beliefs. Relatives, friends and teachers of people with epilepsy should be aware of the measures to be taken during an epileptic attack. Some important measures are discussed under the section 'First Aid During a Seizure'.

Are Epilepsy Medications Ineffective?

No. Epilepsy medicines of are very essential for the control of epileptic attacks and should not be neglected. The complete treatment should be discussed with the treating doctor and the treatment should be adhered to.

Is Marriage a Cure for Epilepsy?

No. Marriage is an important aspect of life but not a cure for epilepsy.

Is Life of a Person with Epilepsy Miserable?

No. Life of a person with epilepsy can be very manageable and very similar to life of people without epilepsy provided you have a positive approach towards life. Very important aspect in managing the epilepsy is embracing the treatment as an integral part of your life. Daily intake of medicines can sometimes put you down. However, do not let this affect your life. Taking medicine daily can be equated with taking your food daily.

Is Epilepsy a Hindrance in Leading a Happy and Successful Life?

No. People with epilepsy can live a happy and successful life. With the advent of newer medicines, availability of medical care and increased awareness of the condition, it has become possible for a person with epilepsy to lead a good life. There are many famous poets, writers and sportsmen with epilepsy who have excelled in their respective fields. Positive approach towards the problems in life is a key for success and contentment. Our negative outlook towards the disease should be challenged and this will certainly help people lead a normal and happy life.

Living with Epilepsy: Some Do's and Don'ts

Do's

  • Do take your medicines at the prescribed times.
  • Do make it known to your family members, friends and people who work with you that you are seizure-prone. Tell them what should be done in case you get an attack in their presence (Check the section 'First Aid During a Seizure'). This is nothing to be ashamed of as epilepsy is a medical condition just like high blood pressure.
  • If your child has epilepsy, do inform the teacher and the school authorities about it.
  • Do tell your child's teacher what to do if your child has a seizure (Check the section 'First Aid During a Seizure').
  • Do keep an accurate record of your seizures and their frequency. Preferably, maintain a seizure diary which is provided in this Epilepsy Kit.
  • Do ask your doctor about medicines for other conditions before taking them. Some drugs do not mix too well.
  • Do follow a balanced diet.
  • Do exercise regularly but avoid over-exertion.
  • Do have good lighting in the room where you watch TV. TV picture flashes can trigger seizures. Good lighting can prevent such attacks.
  • Do tell someone if you are going for a swim; swim only if your seizures are under control. Moreover, whenever possible, go swimming with a friend.
  • Do talk to your doctor about the pros and cons of using contraceptive pills (medicines used by women to avoid unwanted pregnancy) along with your epilepsy medicines.
  • Do wear protective headgear when cycling.
  • Do tell your doctor about any ill effects that you experience.
  • Do get a good night's sleep daily.
  • Do make sure you have enough medicine so that you don't run short, even when you are travelling.
  • Do check-in with your doctor regularly.

Don'ts

  • Don't stop your treatment unless your doctor tells you to.
  • Don't consume caffeine or alcohol excessively.
  • Don't take other medicines without checking with your doctor.
  • Don't lock the bathroom/toilet door, if possible.
  • Don't smoke.
  • Don't give others your medicines and don't take anyone else's medicines.

First Aid During a Seizure

If you have epilepsy, you should instruct your family, friends and people working with you about what should be done when you suffer an attack. Also, if your child has epilepsy, you must impart the following information to the teacher about what is to be done when the child suffers an epileptic attack. Here's a checklist:

Learn to Recognize the Common Symptoms of Epilepsy

  • Staring and unresponsiveness.
  • Confusion.
  • Jerks and twitches.
  • Wandering.
  • Shaking or falling.
  • Abnormal tongue and lip movement.

Important First Aid Steps

  • Keep calm. Speak quietly and calmly to the person.
  • Explain to others what is happening.
  • Prevent the person from injuring himself/herself.
  • Block the fall of the person onto the ground. Gently put them on the ground if they are losing balance.

  • Loosen the person's belt, necktie or other tight clothing, especially around the neck, and remove the spectacles, if any.
  • Clear away any sharp or hard objects in the surroundings.
  • If possible, cushion the person's head.
  • Once the seizure subsides, place the person on one side to prevent choking with his/her own saliva.

  • Stay with the person until he/she regains complete consciousness.
  • Look for an 'Epilepsy Disorder Card' or 'Identity Card', if available with the patient, to help contact his/her family or relatives.

Important Don'ts During a Seizure

  • Don't panic and don't be afraid!!!
  • Don't speak loudly or make loud noises. Take control of the situation and ensure others around remain calm too. Over-reaction to a seizure should be avoided.
  • Don't try to move the person unless he/she is in an unsafe location such as the roadside, or in water, or near a fire, etc.
  • Don't try and physically hold the person to restrict the movement as this may injure both the person having seizure and also the helper.
  • Don't try to insert any object like a spoon or a piece of cloth into the mouth; it may cause difficulty in breathing and also hurt the helper's fingers. This is because the patient may involuntarily try to bite down.

  • Don't crowd around the person having a seizure.
  • Don't give water or any other liquid till he/she is fully conscious.
  • Don't try to wake up the person by shouting at, or shaking him/her.

Medical aid is usually not required except in case where the person is in water and/or drowning, or has other serious injuries. The duration of a seizure is usually not more than 2-5 minutes after which the person enters a state of deep sleep. If the seizure does not subside, immediately call for the nearest available medical help.

 

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