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About Epilepsy

An Overview

Epilepsy is one of the most common brain disorders affecting about 50 million people worldwide. Our brain sends electrical commands to our body which then acts accordingly. Disruption in this electrical activity leads to a change in a person’s physical and behavioural activities with alteration in level of awareness. This constitutes a seizure, the clinical symptomology of epilepsy.
Epilepsy occurs regardless of age, gender, cultural or socio-economic background. It can develop at any stage of life, but is commoner in children, adolescents, and elderly people.
Epilepsy is diagnosed by a medical specialist after a person experiences at least two unprovoked stereotyped seizures at least 24 hours apart. Epilepsy and seizures vary greatly between people. There are different types of seizures and a person may experience one or more seizure types. The seizure symptomology depends on the type of seizure and the area of the brain affected.
Not all people who have seizures are diagnosed with epilepsy. About 10% of the world population will experience a single seizure in their lifetime but all do not have epilepsy. One percent of the population in Pakistan has epilepsy; thus 2.2 million citizens are afflicted with this disorder.
Epileptic seizures in about 70% of people with epilepsy get controlled by taking anti-epileptic drugs (AEDs). Remaining are considered drug resistant and alternative treatment options if present are considered. Some childhood epilepsy syndromes are self-limiting.
In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. It mostly has a negative physical, psychological and social impact. Education, employment, marriage, social and family life can be affected due to the deep rooted stigma associated with it. A person with epilepsy can be identified only when one has a seizure in public. To avoid this, they are often confined to their homes or their social activity is markedly limited under strict vigil. The seizures are of a short duration but so dramatic that people fear them to be possessed by evil spirits, djinns etc. People usually stay away from an epileptic person thinking they might catch it too. Three quarters of people with epilepsy living in low-income countries do not get the treatment because of the associated myths and misconceptions, lack of awareness about its treatability and cost.

Epilepsy Caregiver

Epilepsy is usually treated by primary care / family physicians, psychiatrists, pediatricians, internists neurologists or epileptologists (neurologists specializing in epilepsy). Epileptologists have a major role to play when there is complexity in diagnosis or when seizures remain uncontrolled.

Diagnosis

The primary method of diagnosing epilepsy a detailed interview with description of the seizures from the witness and patient, along with present and past medical history. Some tests may be required to help give additional information about the type and cause of the epilepsy or rule out any other conditions that can seizures.

Treatment

Epilepsy is usually treated with medicines and most become seizure free with medicines. About 60% can go off medicines, however as per doctor’s advice. Sudden withdrawal of medicines can prove fatal. Those in which medicines don’t work alternative method and surgery may be considered but cannot be offered to all.

Myths & Misconceptions

Myths are just images to try make sense of something beyond one’s understanding.

Epilepsy-related false beliefs, erroneous or no knowledge exists worldwide, more so in poor countries. Lack of awareness about the disorder contributes to stigma and discrimination. The enacted and perceived stigma makes the person to hide the condition and suffer quietly and not talk about it even when they need to do so.

MYTH: Epilepsy occurs due to supernatural cause, evil eye, demonic possessions and likes

Epilepsy is a treatable neurological disorder. The epileptic seizures are very brief and so dramatic that observers panic and fear them to be possessed by evil spirits, djinns etc which is completely incorrect.

MYTH: All people with epilepsy lose consciousness and have convulsions

There are about 40 different types of seizures and in every seizure a person does not jerk or convulse or become unconscious. ‘Tonic-clonic seizures are the commonest seizure-type where a person falls to the ground, becomes unconscious and starts to jerk. This may be accompanied with frothing, tongue bite with bleed and urinary/faecal incontinence. However, in some seizures mere muscle twitches, brief or no loss of awareness, confusion or disorientation and automatism may occur.

MYTH: Epilepsy is a life-long illness

Epilepsy is not necessarily a life-long condition. Some childhood epilepsy syndromes are self-limiting and around 70% of people with epilepsy become seizure free with regular and punctual intake of anti-epileptic medications. Epilepsy is considered to be resolved in some people who have not had a seizure in 10 years and been able to stop medication for the last five of those years.

MYTH: Epilepsy is a mental illness

Epilepsy is not a mental illness. During a seizure the person may make unusual noises, utter strange words and behave oddly which is wrongly taken as mental affliction. However, due to chronicity of the illness, associated stigma and marginalization they can develop anxiety or depression.

MYTH: Epilepsy is contagious

Epilepsy is NOT contagious. One simply can’t catch epilepsy from another person.

MYTH: Restraining someone having a seizure is important

Never restraint. Restraining someone during a seizure can further agitate or harm that person. The seizure will run its course and one cannot stop it.

MYTH: First aid for an epileptic attack is making the person smell a shoe

This is just a misconception. The duration of a seizure is so brief that by the time the panic settles in the onlooker(s) and a shoe is removed and attempt to make him smell, it is time for the seizure to end and the person to recover. This makes people believe that the person has recovered because of smelling the shoe which is not so.

MYTH: Something must be put in a person’s mouth to stop them from swallowing their tongue during a seizure

It is physically impossible to swallow one’s tongue. The worst thing that can happen during a seizure is that a person can bite the tongue. DO NOT put anything in their mouth, as they may bite down on the object and break their teeth, or injure their mouth or jaw. The first aid giver can also get harmed in the process.

MYTH: If someone has a seizure, they must be rushed to hospital

Not all seizures require hospitalization. Most often, the person will just need time to rest and recover after a seizure. Seizures of more than 5 minutes or a series of seizures without regaining consciousness in between is a medical emergency and requires hospitalization.

MYTH: Epilepsy affects intelligence

People with epilepsy possess the same level of intelligence as a healthy human being. Epilepsy has little to no effect on a person’s ability to think, except for a mental fog lasting for a short period following some seizures. Sometimes this may occur as a side effect of certain anti-epileptic medications. Learning abilities of patients can be affected only if the frequency and intensity of seizures increase and with some anti-epileptic medicines.

MYTH: Children with epilepsy need to attend special education school

Most children with epilepsy as intelligent and competent as children without epilepsy and can attend regular schools. Inclusive policies of schools can help children with epilepsy grow into responsible contributing citizens of a country.

MYTH: People with epilepsy are disabled and can't work

People with epilepsy are as intelligent and able as the rest of us. Some have severe seizures and cannot work; others are successful and productive in their careers.

MYTH: People with epilepsy can perform any type of job

If one has the right qualifications or experience and their seizures don’t put them or other people at work at risk, then they can be hired for most jobs. However, if one continues to have seizures with adequate treatment then some do jobs are a risk to safety the person with epilepsy or other people. These include jobs that involve driving, flying, working at heights, near open water or fire, working with unguarded machinery, jobs requiring handling of ammunition, etc.

MYTH: People with epilepsy cannot drive

People with poorly controlled epilepsy pose a danger for themselves and others on the roads. However, people who are seizure free, taking anti-epileptic drugs and are under regular medical check-up can drive after a certain period of time which depends on the rules laid down by the country’s driving authorities. Generally, after one year of complete seizure freedom with continued medications the person is allowed to drive.

MYTH: An epileptic patient can never get married nor have children

Epileptic patients can marry and lead a healthy life. Epilepsy does not generally affect a woman’s ability to conceive and has a minimal effect on a child’s development. However, if women are taking anti-epileptic drugs, the risk of birth defects may increase which can be minimized by prescribing the safest AED in the minimal required dose and close collaborative care of the neurologist and obstetrician. Pre-conception counseling is very important.

MYTH: Children of people with epilepsy pass inherit the disorder

Children of parents with some forms of epilepsy can develop epilepsy, but that risk is very low.

MYTH: A person with epilepsy cannot lead a normal complete life

People with epilepsy can live a complete disciplined lifestyle. They need to follow a routine where medicines need to be taken regularly, avoid extreme situations and do away with things like that can precipitate a seizure. Before under-taking any activity, one must analyze personal risk in case of a seizure especially if they are not well-controlled. Such activities should be then avoided or undertaken under supervision with great caution.

MYTH: A seizure means one has epilepsy

Not all seizures can be attributed to Epilepsy. Seizures can happen for other reasons, like high temperature, low sugar levels, altered electrolyte levels, toxaemia of pregnancy, binge drinking etc. To be diagnosed as a case of epilepsy, the patient must have suffered at least two unprovoked stereotyped seizures 24 hours apart.

MYTH: A person with epilepsy cannot participate in any sports

Majority of sports are safe to participate with special attention to adequate seizure control, close monitoring of medications, and preparation of family, coaches, or trainers. Contact sports including football, hockey, and soccer have not been shown to induce seizures, and epileptics should not be disallowed from participation. Water sports and swimming in a pool are felt to be safe if seizures are well controlled and under direct supervision. Additional care must be taken in sports involving heights such as gymnastics, rock climbing, mountaineering, horseback riding and likes. Sports such as swimming in open seas, sky-diving, para-gliding, or scuba diving, are not recommended, given the risk of severe injury or death, if a seizure were to occur during the activity.

MYTH: The person must be given peroral prescribed medicine following a seizure; out of schedule?

Nothing per orally, liquids or medicines should be forced into the mouth of an unconscious person as the person can die due to choking. Out of schedule medicine is not required.

Seizures

Are like a lightning storm in the brain

Seizures are the clinical manifestation of epilepsy. They occur due to a sudden, temporary electrical storm occurring in the brain leading to a change a person’s level of consciousness/awareness, behaviour with unnatural physical activity. Every person’s experience of a seizure is different but stereotyped to the person. The frequency and pattern of seizures also vary.
Seizures can originate in the entire brain all at once or stay limited to one specific part of the brain or may then rapidly spread to affect the whole brain. Each part of the brain has a specific function to perform and the seizures appear with symptoms related to the function of the affected part of the brain.
It is important to note that all seizures do not occur because of epilepsy.

Brain Functions

The human brain is the command centre of the entire human body. It sends commands through electrical impulses carried by the nerves. An overview of the brain parts and their functions helps understand the different symptoms that occur in people during a seizure.

The brain is made up of two hemispheres; right hemisphere is more responsible for visio-spatial functioning (glossary) and visual memory whilst the left hemisphere is more responsible for language function and verbal memory.

Each hemisphere consists of six divisions.

  • Frontal lobes control thinking skills regulating emotional responses, impulse control, organization and planning of behaviour, concentration, memory retrieval and voluntary movements.
  • Temporal lobes organize sensory input, auditory perception, language and speech production, as well as memory formation and storage.
  • Occipital lobes help correctly understand what your eyes are seeing by making sense of visual information. 
  • Parietal lobes process and integrate sensory information, such as taste, temperature and touch. 
  • Cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain to regulate motor skills and movements.
  • Brain stem controls the flow of messages between the brain and the rest of the body. It also controls basic bodily functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and states of wakefulness and sleep. 

Seizure Phases

Seizures have three phases; an initial (prodrome and aura), middle (ictal) and end (post-ictal).

Initial Phase
Prodrome: Some people may notice some early signs hours or even days before the seizure starts. It is a warning of an oncoming seizure but not a part of the seizure.  Some common signs include mood changes, anxiety, difficulty staying focused, headaches and behaviour changes.

Aura: Auras are early part of the seizure. Sometimes a person may have an aura which doesn’t progress to become a more severe or prolonged seizure. Some people don’t experience an aura at all, and their seizure has no early warning signs. Symptoms may include odd smells, sounds or tastes, visual abnormalities, nausea, dizziness, headaches, rising sensation from abdomen, panic, feeling of fear, déjà vu, jamais vu and many others. 

Middle/ Ictal Phase
The middle active phase of a seizure is called ictal phase. It’s the time from the first symptom to the end of the seizure activity. It is during this time that intense electrical activity is occurring in the brain. Some common signs of this phase include loss of awareness, confusion, disconnection from surrounding unable to hear or see, lack of speech or vocalization, automatisms, and convulsions. 


Ending / Post-Ictal Phase
This is the recovery phase following an intense physical middle stage. It may last from a few minutes to a few hours and not considered a part of the actual seizure. Some common signs occurring during this phase includes confusion, lethargy and fatigue, headache, body ache, nausea, vomiting, drowsiness or sleep. Recall of the episode by the person experiencing it may be none, partial or complete.

Classification of Epileptic Seizures

Three important aspects are considered when describing a seizure.

  • The onset or beginning in the brain
  • Person’s level of awareness/consciousness during a seizure
  • Whether motor symptoms/movement occur during a seizure

On this basis the seizures are classified as:

GENERALIZED ONSET SEIZURES
The abnormal excessive electrical discharges occur on both sides of the brain at the same time. According to the level of awareness/consciousness and motor symptoms they are further sub-classified into tonic-clonic, tonic, clonic, atonic, absence and myoclonic. In most generalized seizures there is disturbance in awareness/consciousness however, in myoclonic seizures the person is fully aware. 

FOCAL ONSET SEIZURES
Focal seizures start in a group of cells in one side of the brain. They may be limited to that area only or then spread to the entire brain. 

Focal Onset Aware Seizures: When a person is aware and fully conscious during a seizure. These seizures may show motor activity such as involuntary, brief jerking of an arm or leg or a non-motor event like an unpleasant smell or taste, or sensations such as butterflies or nausea. These seizures were previously called simple partial seizures. 

In some cases, this type of seizure can precede another seizure type like tonic-clonic seizure. This feeling or movement indicating an oncoming major seizure with loss of awareness/consciousness is called an aura that is actually part of the seizure. 

Focal Onset Impaired Awareness: During these seizures the person may appear confused and dazed, and may do strange and repetitive actions such as fiddling with their clothes, making chewing, gulping, pouting or lip-smacking movements with their mouth or uttering unusual sounds or repetitive words. These seizures were previously called complex partial seizures.

Focal to bilateral tonic-clonic: As mentioned above sometimes focal onset seizures spread to become generalized. Previously they were called secondary generalized seizures.

UNKNOWN ONSET SEIZURES
When the beginning of a seizure is not known, it’s called an unknown onset seizure. People who experience these may have varied states of awareness.
A seizure could also be called an unknown onset if it’s not witnessed or seen by anyone like in a perso

Epilepsy Syndromes

Who lives alone or when seizures occur at night in deep sleep. Investigations may later help diagnosing it as focal or generalized seizure.

When a disorder is defined by a characteristic group of features that usually occur together, it is called a syndrome. Epilepsy syndromes are defined by a cluster of features and include.

  • Type or types of seizures
  • Age at which the seizures begin
  • Causes of the seizures
  • Whether the seizures are inherited
  • The part of the brain involved
  • Factors that provoke the seizures
  • How severe and how frequent the seizures are
  • A pattern of seizures by time of day
  • Certain patterns on the EEG, during and between seizures
  • Brain imaging findings; MRI or CT scan
  • Genetic information
  • Other disorders in addition to seizures
  • Not every syndrome will be defined by all these features, but most syndromes will be defined by a number of them. Classifying a person’s epilepsy as a syndrome often provides information on what medications or other treatments would be most helpful. It also may help the doctor predict the seizures prognosis i.e. will eventually lessen or disappear. 

Juvenile myoclonic epilepsy, benign epilepsy with centro-temporal spikes, West syndrome are some commonly occurring syndromes.

Status Epilepticus

Status epilepticus is a medical emergency requiring prompt medical attention and hospitalization. It is a condition in which a seizure is prolonged or when seizures occur in close succession without the person recovering between seizures. Prolonged seizures can prove dangerous causing long term brain damage or even death. Hence, it very important to identify and treat status epilepticus as promptly as possible. 


Convulsive status epilepticus

Convulsive status epilepticus occurs when:

  • a tonic-clonic seizure lasts for 5 minutes or longer
  • a person goes into a second seizure without regaining consciousness from the first one

It is possible for convulsive status epilepticus to progress to non-convulsive status epilepticus. 

Non-convulsive status epilepticus

Non-convulsive status epilepticus includes continuous absence seizures and focal impaired awareness seizures that are subtler and difficult to recognize. It can present in various ways, including automatisms, confusion, agitation and altered awareness. It is possible for non-convulsive status epilepticus to progress to convulsive status epilepticus. 

Seizure Triggers

Events and circumstances that can bring on a seizure are called seizure triggers. It does not occur in all. Avoidance of an identified trigger helps manage epilepsy better. Some common seizure triggers include missed medication, sleep deprivation, disturbed sleep, stress, anxiety, infection, puberty, menstruation, menopause, use of certain medications, bright, flashing or flickering lights and others.

Seizure First Aid

Keep Calm, Be Aware

Seizure first aid varies depending on the type of seizure the person is experiencing.

Tonic-Clonic Seizures

Do:
  • Stay calm. 
  • Loosen tight clothing especially around neck. 
  • Protect them from injury by moving any injury causing objects away from the area and placing something soft under their head. 
  • Time the seizure.
  • Gently roll the person on one side, clean the mouth with a tissue or cloth, tilt their chin upwards to assist breathing and protect airway.
  • Stay with the person until the seizure ends naturally and comforting the person until regains consciousness.
  • Reassure the person.
  • Keep onlookers away, as waking up to a crowd can be embarrassing or confusing for the person.
Do not:
  • Restrain the person’s movements or move them during the seizure unless they are in danger.
  • Put anything in the person’s mouth.
  • Give the person water, food or pills unless fully alert.
  • Give medicines following a seizure. They must be given as per schedule.  
Rush to the hospital if:
  • The seizure lasts more than 5 minutes or a second seizure quickly follows without regaining consciousness.
  • The person is severely injured or has swallowed water.
  • The person is pregnant.

Focal Impaired Awareness Seizures

Do:
  • Gently guide the person past obstacles and away from dangerous places.
  • Remove any harmful objects that could be nearby.
  • Calmly talk to the person as they regain awareness and ask if they are alright.
  • Reassure the person.
  Do not:
  • Restrain the person’s movements.
  • Put anything in the person’s mouth.
  • Give the person water, food or pills unless fully alert.
  • Give medicines following a seizure. They must be given as per schedule.  
 Rush to the hospital if:
  • If the seizure activity lasts for more than 5 minutes, as this may indicate the person is experiencing non-convulsive status epilepticus.
  • The person is injured or has swallowed water.
  • The person is pregnant.

Focal Aware Seizures

Generally, this type of seizure does not require first aid because the person maintains full awareness.

Do:
  • Assist the person to stop any activity they are doing.
  • Assist to sit down. 
If the seizure progresses into a focal impaired awareness seizure or a convulsive one then assist as described above.

Seizures occurring in water

People with epilepsy should not be around any water source unattended. A seizure in water (bath, water tank, pool, river, sea) is a life-threatening emergency and the person should be rushed to the hospital as may have inhaled water and be at significant risk.

Do:
  • Support the person’s head so that their face and head stays above the water surface.
  • Tilt the person’s head back to ensure a clear airway.
  • Remove the person from the water as soon as the active movements of the seizure have ceased.
  • Removing the person from water and roll the person onto one side as soon as possible and tilt the chin upwards to assist breathing and protect airway.
Even if the person appears to be fully recovered, they still require medical assessment as inhaling water can cause lung or heart damage.

Febrile Seizures

Seizure triggered by a high body temperature are called febrile seizure (FS). About 5% of under age 5 years can have a seizure precipitated by fever with a febrile. They are usually linked to a childhood illness, such as respiratory tract infections, tonsillitis, etc. Febrile seizure is not epilepsy. But children who have had febrile seizures have a higher chance of developing epilepsy when they are older, than children in general. There are of two types of FS with reference to its prognosis. Children with simple febrile seizures is very good as most children stop having these after the age of 5 years.

A. Simple Febrile Convulsions
Convulsions occurring with fever and fulfilling the following criteria:

  • Occurring only between the ages of six months and five years.
  • Cause of fever is a systemic infection without CNS involvement.
  • Seizures are primary generalized tonic-clonic (GTCS) of <15 minutes duration.
  • Fever is more than 38°C (100.4°F).
  • Single seizure during a single febrile illness.
  • Total number of such seizures in the child should not exceed six.

B. Complex Febrile Seizures
All other seizures which do not fulfill the above criteria are categorized as Complex Febrile seizures.

Seizures with Fever
Fever can precipitate seizures in people with epilepsy. Seizures precipitated with fever in adults are labeled seizures with fever. They are not febrile seizures.

First Aid

For GTCS same as above along with immediate focus on reducing the degree of fever and keeping it less than 37.8° C (100° F). This can be very quickly achieved by tap water (not cold water) sponging and antipyretics.
Most seizures terminate by the time any formal medical help is reached. However, if the convulsions are continuing (> 5 minutes), diazepam suppositories or intranasal midazolam can be given, however all as advised by treating pediatrician. Children with febrile seizures must be seen by a pediatrician to diagnose and treat the cause of fever.

Diagnosing Epilepsy

Do not pen down epilepsy as a diagnosis until you are very sure

Diagnosing epilepsy is not always easy. A detailed medical history followed by physical examination with some investigations, to assess the type of seizures and make a diagnosis.
The primary diagnosis of epilepsy is made by a doctor with a proper detailed patient and witness account and start of treatment as suitable. The accuracy of the diagnosis is based on pursue of the doctor to obtain maximum information about the seizure from the patient and importantly from the witness. A home video of the episode adds much information and is advised. In addition, medical details of the person since birth and about mother’s pregnancy. Family history is also important. The doctor may also order some diagnostics.
The doctor, if for any reason is unsure about the diagnosis, he must defer from labeling the person to be having epilepsy until definitely proven. For this investigations and clinical reassessment from a person who has seen more than one seizure should be done. Home video recordings can be very helpful. Diagnosis of epilepsy can have a social and emotional impact on the person as well as family members, and counselling is extremely important.

Requisites for proper diagnosis of epilepsy include:

  • Detailed patient and witness account.
  • Physical examination.
  • Electroencephalogram (EEG): An EEG examines electrical activity in the brain. Electrical changes are often only seen during a seizure and hence the EEG can be normal. This does not mean that the person does not have epilepsy. It simply means that the abnormal electrical activity was not occurring when the test was taken. An abnormal EEG can suggest that a person is more likely to have seizures and helps the doctor suggest the appropriate type and dose of AEDs. However, an EEG can be abnormal for a variety of reasons unrelated to seizures. Hence clinical correlation is extremely important.

    Types of EEG recordings
    • Routine EEG with or without video-recording called interictal EEG is a routine diagnostic test, if available.
    • Prolonged Video EEG or Telemetry is a continuous EEG with video monitoring performed in hospital over several days to capture a seizure on video and correlate it with simultaneously ongoing EEG. This is done to rule out suspicious seizure like events and is an important pre-surgical evaluation test for epilepsy surgery.
    • Ambulatory EEG (AEEG) is not commonly done and may take place in the person’s home or a medical setting not being confined to the recording chair or bed.
  • Neuroimaging: Computed tomography (CT) and Magnetic resonance imaging (MRI) help detect a cause for seizure activity like tumour which can be surgically removed or an infective brain lesion like a tuberculoma that can be treated with adequate drugs.
  • Laboratory tests like blood sugar levels, electrolytes etc. to rule out other cause of seizures.
  • Additional tests: SPECT (single-photon emission computed tomography) and PET (positron emission tomography) scans may be recommended. However, not everyone needs to undergo these tests. Usually they are used as part of pre-surgical evaluation for epilepsy surgery. A PET scan provides information about how an organ or system in the body is working, and a SPECT scan shows how blood flows to tissues and organs – both scan can assist helping to identify seizure onset zones in the brain.

Conditions Mimicking Epileptic Seizures

Appearances can be deceptive

There are many medical conditions that can cause events mimicking seizures and must be ruled out. Some common conditions include:

Psychogenic non-epileptic seizure (PNES)

PNES IS a condition in which people clinically may have symptoms somewhat similar to an epileptic seizure but diagnostically there is no unusual electrical activity in the brain. These events are suggestive of complex physical reactions to significant psychological stresses. It can occur at any age. About 25% of patients referred to epilepsy centres for uncontrolled seizures are diagnosed with PNES after diagnostic tests and ruling out conditions like heart disease, stroke, fainting and neuromuscular disorders. Psychological or psychiatric assessment helps diagnose PNES. For treatment of PNES, the person should be referred to a specialist for psychological therapy and/or medications.

Fainting attacks

Fainting happens when one loses consciousness for a short amount of time because the brain isn’t getting enough oxygen. Fainting or syncope, is commonly described as episode of ‘passing out’. A fainting spell generally lasts from a few seconds to a few minutes. Oxygen deprivation to the brain can be due to multiple causes including low blood pressure. Fainting is not usually serious.

Migraine

Migraine is a neurological condition that can present with multiple symptoms. It’s frequently characterized by intense, debilitating headaches. Symptoms may include nausea, vomiting, mind fog, difficulty in speaking, numbness or tingling, lethargy and sensitivity to light and sound. Migraines often runs in families and affect all ages. Migraine triggers can be physical, emotional and dietary. One must identify and avoid their triggers and evade precipitation of an attack.

Tantrum/Temper Attacks

A tantrum attack, temper tantrum is an emotional outburst, typically characterized by stubbornness, crying, screaming, violence, defiance, angry ranting, a resistance to pacification, and in some cases, physically violent behavior. Physical control may be lost; the person may be unable to remain still; and even if the goal of the person is met, they may not be calmed.

Breathe holding attacks

Breath-holding attacks are brief spells when a young child stops breathing for up to one minute. These spells often cause a child to lose consciousness. Breath-holding spells usually occur when a young child is angry, frustrated, in pain, or afraid.
There are two types of breath-holding spells; cyanotic caused by a change in the child’s usual breathing pattern, usually in response to feeling angry or frustrated. It’s the most common type and pallid caused by slowing of the child’s heart rate, usually in response to pain and fear. Some children may have both types of spells at one time or another. With time, they go away on their own.

Panic attacks

A panic attack is a sudden intense wave of fear characterized by its unexpectedness and incapacitating, immobilizing intensity. Palpitations, sweating, shaking, shortness of breath, numbness, a feeling that something bad is going to happen occurs. One may feel like they are dying. Panic attacks often strike out of the blue, without any warning, and sometimes with no clear trigger. They may even occur in a relaxed state or when asleep.

Conditions causing metabolic imbalance

Seizures can result due metabolic disturbance such as Low blood sugar levels, low or high sodium and potassium levels, low calcium levels and others.

Sleep disorders: Sleep disorder or parasomnia is a disorder characterized by abnormal or unusual behaviour of the nervous system during sleep like night terrors, sleep walking.

Stereotypic movement disorder It is a condition in which a person engages in repetitive, often rhythmic, but purposeless movements. In some cases, the movements may result in self-injury. This disorder most often affects children with autism, intellectual disabilities, or developmental disabilities. Symptoms include repetitive movements, rocking, banging the head, self-biting, nail biting, self-hitting, picking at the skin, handshaking or waving and others.

Treatment And Management

Mindset, habits, and routine are the building blocks for success towards wellness

Aim of epilepsy treatment is to stop or decrease seizure activity, with minimal drug side effects. Epilepsy is mainly treated with anti-epileptic drugs (AEDs), which successfully control seizures in up to 70% of people. Those who don’t gain seizure control through AEDs alone are sometimes offered surgery, diets or other therapies. Attending regular medical appointments and discussing concerns with proper counselling with the treating doctor is an important aspect of holistic epilepsy management.

Anti-Epileptic Drugs (AEDs)

AEDs are the first line treatment for epilepsy. About 70% of people respond well to AEDs and seizures get controlled. It needs to be remembered that AEDs do not cure epilepsy but help control or diminish seizure activity. There are many different types of AEDs available, and sometimes it takes time to determine the best one. If the use of one AED (monotherapy) doesn’t provide optimal outcome, the doctor may prescribe an alternative AED or a combination of different ones (polytherapy).

AED Treatment

AED treatment is prescribed only after a definite diagnosis of epilepsy has been made. Occasionally it may commence after just one seizure, if the doctor believes the person to be at a high risk of further seizures.
Choice of AED is based on seizure type(s), age (some AEDs can only be taken by adults, whilst others are suitable for children and adults), gender (woman with epilepsy of childbearing age need special considerations), medicine tolerability, other health conditions and prior intake of other medicines.
Some AEDs can affect an unborn baby, so doctors may change medications in women planning to start a family. Although, sometimes a change in a woman’s AEDs is not possible, as the risk of seizure activity is too great. More than 95% of pregnant women living with epilepsy deliver a healthy baby.
It needs to be remembered that no seizures with AEDs does not mean one is ‘cured’. Sudden stopping of medicines by self can be harmful resulting in more severe and prolonged seizures and even death. Do not discontinue medicines without your doctor’s advice.

List of AEDs available in Pakistan
AED intake

To attain good seizure control, it is important that AEDs must be taken as prescribed by the doctor, in the right dose regularly and punctually. Taking AEDs at the same time every day, helps maintain a steady level of drug in the body and good seizure control. If one happens to miss a dose it is advised to take it as soon as one remembers and must be discouraged for this

AED side-effects

Common side-effects
Drowsiness, irritability, mood change, weight gain or loss, dizziness, sleep disturbance, nausea, vomiting, blurred vision, hair loss, unwanted hair growth, swollen gums and tremors in fingers.

Serious side-effects
An allergic reaction (rash) to an AED requires immediate medical advice as this can turn very serious.

Cognitive and learning side-effects
Sometimes AEDs can affect a person’s attention and concentration. Some AEDs might also affect a person’s motivation, energy levels, or mood. Sometimes these side effects go away with AED dose adjustment. Do not self-adjust your dose. Immediately contact your doctor.
For minimal side-effects the doctor starts medicines in a low dose and gradually increases. Likewise, AEDs are slowly tapered off when required.

AED interactions

Drug interactions can happen between various AEDs, AEDs and other drugs or AEDs and alternative therapies like homeopathy, herbal treatment. To avoid this the treating doctor should be made aware of all medicines the patient is taking.

AED effect on daily activity

Some AEDs cause drowsiness, sleepiness and slowed reactionary response. The patient driving, using a machine, or any high-risk job must be counseled about this risk.

AEDS and bones

Some AEDs can cause to osteoporosis by decreasing the bone strength and increasing the risk of bone fractures. Calcium and Vitamin D supplement help bone health. For details ask your doctor.

Epilepsy Surgery

Only a small number of those whose seizures cannot be controlled by medications are deemed suitable candidates for surgery. The desired goal of neurosurgery is to improve person’s quality of life by reducing or eliminating seizures. It is only considered for people who have epilepsy with a focal cause, if adequately mapped to indicate the part of the brain where the seizures are arising, if surgical approach is safe and will not leave a permanent major neurological defect like loss of memory, speech and others.

The surgery can have positive results leading to reduced seizures and improved quality of life however, not without risks. Thorough pre-surgical assessment to weigh the risks vs. benefits is extremely important. Patient and family members must be clearly counseled about the risks, and chances of complete or partial control of seizures.


Tests required for pre-surgical assessment

  • A Proper Detailed History & Clinical Examination
  • Inter-ictal electroencephalogram (EEG)
  • Prolong Video EEG Monitoring
  • Magnetic Resonance Imaging (MRI) Scan
  • Single-Photon Emission Computed Tomography (SPECT) Scan
  • Positron Emission Tomography (PET) Scan
  • Depth or Grid Electrodes EEG
  • Neuropsychiatric Assessment
Risks of epilepsy surgery

Possible risks may include problems with memory, partial loss of sight, weakness on one side of the body, depression or other mood problems. Like any other surgery it also carries potential risks related to anesthesia or may result in unanticipated complications which arise during the procedure. The risks of unexpected complications are low, but still important to consider.
Risks will vary from person to person, Surgery is never recommended when the risks are likely to outweigh the benefits.

Vagus Nerve Stimulation (VNS)

Vagus nerve stimulation (VNS) can help reduce the frequency, length and severity of seizures. Some people implanted with a VNS may experience a reduction in the length or intensity of seizures, but it does not necessarily work for everyone. VNS therapy is unlikely to stop seizures altogether and it does not cure epilepsy. It is used in conjunction with AEDs and sometimes medications dose can be reduced if the person experiences fewer seizures with VNS therapy. It can take at least two years before the full benefit of a VNS is realized.

Cough, hoarseness or change in speech pattern, sensations, such as tightness or mild pain, in the throat or neck area, difficulty in swallowing, headache and difficulty in breathing are common side-effects of VNS. These may go away over time. However, if it persists and affects some daily or professional activities like public oration or exercising, the stimulator can be temporarily turned off. MRI and surgeries require special precautions

Diet

In some cases, special diet is prescribed as an adjunct therapy for people living with uncontrolled epilepsy. This are not recommended for everyone and needs to be taken under supervision of a doctor and dietician. Diet does not replace medications, which must be continued as per the doctor’s advice.

Ketogenic Diet

The ketogenic diet is an established treatment option for children with difficult to control epilepsy. However, adults may also benefit from this dietary regime. It is a special high fat, low carbohydrate, controlled protein diet that has been used for a long time as treatment of epilepsy. The diet is a medical treatment and is usually only considered when at least two suitable medications have been tried and not worked.

Modified Atkins Diet And Modified Ketogenic Diet

The Modified Atkins diet and modified ketogenic diet, sometimes called ‘modified ketogenic therapy’ use high proportion of fats and strict control of carbohydrates. These are often considered more flexible than the classical or MCT ketogenic diets, as more protein can be eaten, and approximate portion sizes may be used in place of weighed recipes.
The dietary treatments for epilepsy must only be followed with the support of an experienced epilepsy specialist and dietitian.

Medicinal Cannabis

Medicinal Cannabis is recommended for more effective therapies in severe, uncontrolled epilepsies. However, its availability varies from country to country. In Pakistan it is under process of being legally approved.

Visiting Your Doctor

The frequency of visits is usually determined by how one has responded to treatment and any related issues one may be experiencing. People living with uncontrolled epilepsy tend to see their doctor more frequently than those whose epilepsy is under control.
Living with epilepsy extends much beyond seizures and includes issues related to wellbeing, safety, lifestyle, stress, education, relationships and others. Depending on one’s ongoing in life the doctor may suggest and other specialists become involved in one’s care, such as psychologists or social workers.

Requirements for an effective medical review

Before visiting your doctor be prepared with the following as it helps you not to forget what you have asked and your doctor can quickly do your medical review and advice. This includes

  • Seizure diary – properly filled to monitor seizure activity, frequency, duration, triggers, and recovery.
  • Home video on mobile of seizures (if new onset events or there is a distinct change in seizure pattern)
  • Any AEDs side-effects.
  • Coping with daily life issues (domestic, social, employment, education)
  • Mood and emotions.
  • Safety concerns like cooking, driving, travelling by public transport etc.

Special Considerations

Women & Epilepsy

Women with epilepsy need extra considerations in epilepsy management due to effects of female hormones during puberty, reproductive age and menopause on seizures.

Female Hormones and Seizures

Seizure activity can be affected due to female hormonal changes, during puberty, menstrual cycle, ovulation and menopause. Oestrogen stimulates the brain cells resulting in a higher risk of seizures. Hence,

  • Some women are likely to have seizure onset at puberty due to hormonal shift.
  • Some may have seizures around or during menstrual cycles, termed catamenial epilepsy.
  • Some may experience an increase, decrease or no change in seizure activity during pregnancy, due to hormonal and/or medications.
  • Oestrogen levels decrease peri-and post-menopause. This does not necessitate a decrease in seizures. Rather occasionally they may experience worsening of seizures.
Contraception and Pregnancy

A woman with epilepsy can have a healthy normal baby. For a healthy pregnancy, it is strongly recommended that the pregnancy must be planned.
One must visit the neurologist for review of treatment as some AEDs like sodium valproate can cause foetal anomalies and thus switch to a safer drug is required. Likewise, oral contraceptives decrease the efficacy of lamotrigine and dose adjustment may be required.
Also, the gynaecologist should be consulted for contraception advise as the impact of hormonal contraception may vary among women. A number of AEDs decrease the efficacy of hormonal contraceptive methods and become less reliable increasing your risk of an unplanned pregnancy. Some hormonal contraceptives decrease the efficacy of some AEDs.
During pregnancy, women generally do not experience an increase in seizures. However, increase in body weight, alteration in hormonal levels, metabolism and sleeping habits, stress and poor absorption of medicines may lower the efficacy of AEDs and seizure threshold. It is very important to have the best possible seizure control, and be on the safest AED prior to becoming pregnant. Folic acid should be taken when planning and during pregnancy as this can reduce the risk of some congenital abnormalities.
It must be stressed that during pregnancy, it is very important not to stop taking or altering the dose of AEDs without the guidance of the treating specialist. To manage any risks associated with your pregnancy it is advised to:

  • Regular visits to one’s neurologist and obstetrician throughout your pregnancy
  • Continue taking folic acid as prescribed
  • Reporting any changes in seizure control
Elderly with Epilepsy

Clinical manifestations of epilepsy in the elderly and are different from those in younger patients. The diagnosis of epilepsy can be challenging because of, different entities that need to be considered in the differential diagnosis, psychosocial factors, comorbidities including cognitive dysfunction, and non-specific abnormalities on routine investigations. Treatment can also be more difficult due to unique pharmacokinetic and pharmacodynamic changes, increased sensitivity to side effects, presence of comorbidities and drug interactions.

Glossary

ABSENCE SEIZURES

A type of generalized seizure. These seizures typically cause a very brief lapse of awareness/ consciousness, so brief that they may go unnoticed, and are characterized by staring with arrest of movement. Often picked up by teachers as classroom day-dreaming.

ANTIEPILEPTIC DRUGS

Medication prescribed to minimize the frequency and severity of experienced by the person living with epilepsy. 

ATONIC SEIZURE 

A type of generalized seizure where there is a sudden loss of muscle tone. The person may fall to the ground like a wet towel. 

AURA

A type of focal seizure where the person can feel and remember the experience. It is a sensory event which only the patient can describe and cannot be seen. Per se an aura is a simple partial seizure.

AUTOMATISM

A repetitive, automatic random movement occurring during or after seizures like fiddling with clothes, or repeated swallowing, chewing, lip smacking, verbalization and others. 

CO-DIAGNOSIS or COMORBIDITY

When a person is diagnosed with more than one condition that have co-contributing impacts on the person.

COGNITIVE

Related to the thinking processes, and includes memory, problem solving, attention, concentration etc.

COGNITIVE DISABILITY 

A term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills.

DRUG RESISTANT EPILEPSY

Epilepsy uncontrolled with anti-epileptic drugs. 

DYSCOGNITIVE

A state where awareness of the surrounding environment is not maintained throughout an episode.

EEG WITH PROLONGED VIDEO MONITORING

An EEG performed over an extended period of time while a person is being monitored by a video camera. If an event occurs and is recorded, the doctor can then simultaneously view both the video recording and the EEG recording.

ELECTROENCEPHALOGRAM (EEG)

An EEG records small electrical signals from the brain onto a computer. Small discs, called electrodes, are placed on a person’s scalp using a non-irritant special paste. The electrodes pick up electrical signals and brain waves and pass them along wires to the EEG machine. The electrodes only pick up electrical activity and don’t give out electricity.

EXTERNAL STIMULI

Used for assessing the consciousness level of a person when not obvious (e.g. voice commands or gentle physical stimuli).

FOCAL SEIZURE

These seizures occur when the seizure activity occurs in only one part of the brain.

FUNCTIONAL/PSYCHOGENIC SEIZURE

Formerly called psychogenic seizure, clinically to the uninitiated may look like an epileptic seizure, but are very bizarre, not stereotyped, person does not experience any major injury or tongue bite, usually occurs in front of an audience and the duration may be in hours. Video EEG monitoring is of great assistance in identifying seizures of this kind. The EEG during this episode remains normal.

GENERALIZED SEIZURE

A seizure that affects the whole brain. Common generalized seizures include tonic-clonic seizures and absence seizures.

ICTAL

The period of time during a seizure. This differs from interictal which is the time between two seizures, and postictal being the time immediately after a seizure.

IDIOPATHIC

Describes a disease or disorder that has no known cause.

INFANTILE SPASMS

Also called Salam seizure it is characterized by brief, sudden flexion of the head, trunk and limbs. Occurs in infancy and early childhood. 

KETOGENIC DIET

A specialized diet sometimes used to control difficult to control seizures. The Modified Atkins Diet (MAD), a modified type of ketogenic diet is also sometimes used. 

MAGNETIC RESONANCE IMAGING (MRI) SCAN

A MRI scan looks at a person’s brain structure. A MRI uses magnetic fields and radio-waves which provide more detail than a CT scan. It produces very clear images of the brain without using x-rays.

MYOCLONIC SEIZURE

Involves a brief, sudden jerk (usually symmetric) of the muscles in the upper limbs and body. It is the only generalized type of epilepsy in which no loss of awareness or consciousness occurs.

NERVOUS SYSTEM

The network of nerve cells and nerve fibers that conveys sensations to the brain and motor impulses to organs and muscles.

NEURODEVELOPMENTAL

Growth and development of the brain or central nervous system.

POSITRON EMISSION TOMOGRAPHY (PET) SCAN

A PET scan is a nuclear imaging test which shows the metabolic activities (energy usage) of a person’s brain. The person is injected with a safe, short-lived radioactive substance into the bloodstream. Once it has been absorbed, a CT scan is performed soon afterwards.

PRODROMAL

A forewarning symptom indicating the onset of a disease, often before more diagnostically specific signs and symptoms develop.

PUBERTY

The period during which adolescents reach sexual maturity and are capable of reproduction.

REFLEX EPILEPSY

When seizures are triggered by sensory stimuli like touch, sudden loud noise etc.

SEIZURE

A temporary sudden change in the electrical activity in the brain which causes a change in behaviour, thoughts, sensation, and movements.

SEIZURE CLUSTERS

Continuous seizures occurring one after the other over a short period of time. There is a recovery period between each seizure, however the pattern and timing does not follow normal seizure activity.

SINGLE-PHOTON EMISSION COMPUTED TOMOGRAPHY (SPECT) SCAN

A SPECT scan is a nuclear radiology study that measures blood flow in the brain. A safe, short-lived radioactive substance is injected into the arm of a person while they are having a seizure and a CT scan is performed soon afterwards. A SPECT scan is only conducted during admission to an Epilepsy Monitoring Unit in a hospital, and is performed by specially trained healthcare staff, such as nurses.

STATUS EPILEPTICUS

When a seizure is prolonged or where seizures occur in close succession with the person not recovering between seizures the condition is called status epilepticus. It can occur with any type of seizure and can be convulsive or non-convulsive.

SYNDROME

Refers to a group of symptoms and features which usually occur together and can suggest a particular condition.

TEMPORAL LOBE EPILEPSY

Term for epilepsy arising in the temporal lobe of the brain.

TONIC SEIZURE

A generalized seizure in which the person falls to the ground like a log of wood. The whole body is stiffened without jerking

TONIC CLONIC SEIZURE

A generalized seizure in which the person falls, loses consciousness, stiffens and the body jerks.

TRIGGER

Situation or event that can bring on a seizure.

VERBAL MEMORY

This refers to the memory of words and other concepts involving language.

VISUAL MEMORY

This refers to the ability to recall visual information that has been seen (e.g. objects, places, animals or people).

VISUOSPATIAL

This refers to the thought processes that involves visual and spatial awareness.

WE NEED
YOUR SUPPORT
Lack of awareness, misconceptions, stigma & marginalization cause more misery than the condition itself. With medical, social & psychological treatment, public awareness to change the public mind-set is necessary. National Epilepsy Centre (NEC). Karachi, operational since 2012 is the only tertiary care centre in Pakistan exclusively for holistic epilepsy treatment, education, research and public awareness.
FLYER-POPUP
OUR WORK
ACKNOWLEDGED INTERNATIONALLY

Our landmark paper, Epilepsy treatment gap and stigma reduction in Pakistan: A tested public awareness model was published in a reputable medical journal in end Dec 2019. The paper was received with accolades from entire medical especially neurology community for its groundbreaking approach towards reduction of treatment gap in a poorly resourced country.