Living with Epilepsy
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).
- The brochure also provides information on the Epilepsy support group in Mumbai called SAMMAN.
What is a Seizure ?
Seizures have different names. Some of these are:
- 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.
2. 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.
Frequently asked questions:
- 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.
Treatment of Epilepsy
Tips for taking medication
- Take medication at a fixed time.
- Maintain supplies to avoid running out of medication.
- Do not miss doses. If a dose is missed it can generally be taken as soon as you remember.
- Remember not to take the missed dose close to the next one.
- Keep a record of doses that have been missed AND consult your doctor
- It is important to never stop or alter the dose of a drug without medical advice.
- Any withdrawal from antiepileptic medication should be done slowly. Suddenly stopping antiepileptic drugs can provoke seizures
Medication is the treatment of choice. Most people need to take medication (tablets) every day to control their seizures.Anti-epileptic drugs(AEDs)or anticonvulsants
About 70 % of people with epilepsy will have their epilepsy controlled with anti-epileptic drugs.
Medication may not cure epilepsy but in a majority of people it can prevent seizures with minimal side-effects.There are many AEDs. The doctor will choose the medication based upon the type of epilepsy, age, lifestyle and other health conditions the patient have.
- How do anti-epileptic drugs (AEDs) work?
AEDs treat the symptoms of epilepsy (that is, they try and stop the seizures), rather than cure epilepsy itself. The drugs act on the brain to prevent the seizures from getting started, by reducing the tendency of the brain cells to send excessive electrical signals.
- Do the drugs used for epilepsy cause brain damage?
Certainly not. Antiepileptic drugs do not cause brain damage.
2. What are the side effects of epilepsy medications?
As is true of all drugs, the medications used to treat epilepsy can have side effects.The occurrence of side effects depends on the dose, type of medication, and length of treatment. Side effects of epilepsy drugs can include blurry or double vision, fatigue, sleepiness, unsteadiness, stomach upset, skin rashes, low blood cell counts, liver problems, swell ing of the gums, hair loss, weight gain, and tremor.
3. What should I do if I get side effects from the medication?
If side effects happen, or if there is an allergic reaction to medica tion, for example a skin rash, it is important to see a doctor as soon as possible.The side effects tend to be less severe with time as the body adjusts to the medication. Anti-epileptic drugs are usually started at low er doses and increased gradually to make this adjustment easier.
4. If medicines aren’t working, what other treatment options do I have?
Epilepsy Surgery – About 20% of patients with epilepsy may not respond even to multiple drugs. These patients need to be worked up for epilepsy surgery. About 50% of these patients may benefit with specialized surgical treatment. This is only considered in people whose seizures can be shown to arise in one area of the brain. They can be offered surgery for the part of brain responsible for epilepsy if it is in an operable area
Ketogenic Diet – This is a special high fat diet and may benefit some, especially children. You must consult a neurologist and confirm if this treatment works for you.
Epilepsy in Adolescents
Puberty is a common time for epilepsy to start.
At this time changes might also be happening in other areas of life, such as school and friendships; having epilepsy as a teenager can be an added chal-lenge. Teenagers are under immense pressure to study and excel in school ex-ams. They tend to stay awake and study till late into the night.
Teenagers : KNOW YOUR TRIGGERS
- Avoid sleep deprivation
- Avoid excessive intake of alcohol
- Avoid substance abuse – do not succumb to peer pressure
Epilepsy in Women
The hormones oestrogen and progesterone are produced in a woman’s body from puberty. These hormones can lower or raise a person’s tendency to have seizures. When oestrogen levels are high and when progesterone levels are low, some women are more likely to have seizures.
Menstrual cycles and periods: One in three women with epilepsy find that their seizures often happen just before and during their periods. This might be due to the changes in the hormones. When women have seizures only during their periods , this is called catamenial epilepsy.
- Can women with epilepsy marry?
Women with epilepsy can marry and lead productive lives. Anti epileptic drugs (AEDs) should be continued.Inform your future part ner about this disorder and emphasize the need to continue AEDs.
Epilepsy and Pregnancy
In current times, women with epilepsy can have a normal pregnancy & children just like other women.
Women with Epilepsy should consult their doctor, (preferably a neurologist) before becoming pregnant.
- If a woman has frequent seizures when she is pregnant, there is a risk of damage to her and her unborn baby.
- It is important to control seizures in pregnancy and continue medication
- It is important to plan the pregnancy so that the anti-epileptic medication least harmful to the developing baby may be prescribed by the doctor.
- Close monitoring of pregnancy usually results in a happy outcome and healthy baby.
- What happens if the pregnancy was not planned?
This is a very common scenario in India. If a pregnancy is not planned, there is no opportunity to have preconception counseling. The couple should see a neurologist as soon as possible. It is recommended that the woman carries on taking her AEDs and starts taking folic acid tablets. This may help reduce the risk of birth defects especially spine defects.
If You See Someone Having a Seizure
- Keep calm. Do not panic.
- Stay with the person until the seizure stops
- Help the person lie down & loosen tight clothing like necktie or tight belt. If the person is wearing glasses, remove them
- Move chairs and sharp objects away so that they don’t hurt the person
- If you can, put something soft like a pillow or rolled-up dupatta or towel under the head
- Turn the person on the side so that no saliva collects in the throat At all stages, make sure breathing is unobstructed and easy
- Do not permit others to crowd around them. Allow free circulation of air. Open all windows
- When person wakes up ( when seizure stops) , reassure him/her.
- DO NOT try to stop the seizure and do not restrain jerking limbs.
- DO NOT force anything between the lips. Do not try to force a spoon be-tween clenched teeth.
- DO NOT offer anything to eat or drink until the person is fully conscious.
IF YOU SEE SOMEONE HAVING A SEIZURE
You should call for an ambulance or a doctor if…
- The convulsion lasts for a very long time, like 10 minutes
- The seizure stops and another seizure begins quickly They are injured
- They have difficulty in breathing even after convulsion is over Seizure occurs in water
You can also call 108
Living with Epilepsy
People with epilepsy can live a productive life and have a career just like everybody else. So just like everyone else, it is important to have a healthy way of life.
- Try to get enough sleep every night Eat healthy food
- Avoid excessive alcohol
- Try to exercise 4 days in a week Do Yoga & listen to music to relax Spend some time having fun
Epilepsy and Swimming
If you are having occasional seizures despite medications and have had seizures in the past 1 year, swimming unsupervised is not recommended.
Epilepsy and Driving
If you have had even one seizure in a year, you should not drive. As per current Motor Vehicle Act in India, people with epilepsy cannot get a driving license. However in the western countries if a person is free from seizures for six months to two years even while taking Anti Epileptic Drugs a driving license is issued to drive a personal vehicle.
Q .Is it safe for me to use a computer and watch television?
Most people with epilepsy can safely use a computer and watch television. Only a few percent of people with epilepsy are photo sensitive, which means that their seizures are triggered by flickering or flashing lights. Photosensitivity can usually be detected on an EEG.Such people especially teenagers should avoid video games and dance clubs that use flashing lights and strobes .
Looking after yourself:
To help the doctor understand more about your epilepsy, you may need some ` special tests’ at the hospital.
Persons with epilepsy and their care givers can contact the support group SAMMAN.
- Lots of people do not know about epilepsy and have misconceptions
- It is a good idea to tell your friends and the people you work with that you have epilepsy. You will be surprised to learn that most of them will understand
- This will remove your sense of shame and give you confidence .
- Make a seizure response plan with your family, friends and co-workers.
Q . I have just been diagnosed with epilepsy. Will I be able to get and keep a job?
Nearly all jobs are open to people with epilepsy and most people with epilepsy can work in any area they choose. The type of jobs someone can do will depend on the type and frequency of seizures. There are restrictions in the armed services Work involving unguard ed machinery, heights, open water or fires is not recommended.
Staying Safe with Epilepsy
Injuries can occur as a result of seizures. Fall during a seizure can lead to cuts and abrasions, broken teeth, burns (if near a flame in the kitchen), fractures or even drowning. Taking antiepileptic medications regularly, and avoiding circum-stances or identified triggers that increase seizure frequency will reduce potential risk factors. It is important to remember that the majority of people with epilepsy gain good seizure control and live full and active lives.
You can wear a Medic Alert bracelet or chain. Keep a Medic Alert badge or pin in your pocket
Staying safe at home :
- Move your bed away from sharp table corners and walls
- Padding of hard edges of tables with cloth can protect you from injury If seizures are not yet well-controlled, try not to cook alone.
Staying safe at work
- Talk with your co-workers and boss . Inform them about your epilepsy. You can make a card like this one and carry it with you in your bag:
IMPORTANT INFORMATION ABOUT MY EPILEPSY
My name is ……………………………………………………………………
Like many people I have epilepsy
My seizures are called …………………………………………………………
I take tablets for my epilepsy. My tablets are called………………………….
IN CASE I HAVE A SEIZURE, PLEASE CALL MY RELATIVE/ SPOUSE
Name : …………………………………………………………………………
Mobile phone number: …………………………………..
My doctor : ………………………………………………………
Doctor’s emergency contact number: …………………………
You can keep a small first-aid poster like this one in your bag or in your desk at work. This will guide the people at your workplace how to help you in case of a seizure .
Will I have Seizures Forever ?
About 60% of people who develop epilepsy may get control of their seizures easily with medicine. Some may be able to come off medicines eventually. Yet about 30 to 40% of people have difficulty with seizure control and other problems related to the epilepsy.You probably have a lot of other questions about epilepsy, too.
You don’t walk alone.
Remember, Samman and Indian Epilepsy Association is your unwav-ering ally in the fight against epilepsy and seizures.
Empowerment with SAMMAN
We will help, answer the most common questions, and help you find resourc-es and other information you may need. But information alone won’t help you manage your epilepsy and find a way to cope with the effects on your daily life. You’ll need to develop the skills to use the information and make it work for you.
Indian Epilepsy Association & Samman
Indian Epilepsy Association, Samman Association & Samman the Epilepsy Support Group
The Indian Epilepsy Association (IEA) was registered in December 1971 as a Public Charity Trust with a mission to raise epilepsy awareness, increase accep-tance of persons with epilepsy and provide relief and rehabilitation to patients and their families. The Bombay Chapter was formed soon after in 1972.
Samman the Epilepsy support group was formed in 1991 when Dr. Pravina Shah got together a group of her patients to celebrate National Epilepsy Day on 17th November 1991 – the first ever National Epilepsy Day. They enjoyed meeting each other so much that they decided to continue their association. Thus very informally began regular support group meetings with the following Mission: ‘To be a group that interacts with love and care, where each person is treated equally and with respect, and to work at improving their own quality of life and those of others living with epilepsy’. Support group meetings continue to date at various locations.
Samman Association registered as a Charitable Trust in August 2012. Its objectives are:
- To increase epilepsy awareness through various campaigns and education programs that pro mote acceptance of people with epilepsy and remove fear and stigma.
- To connect people with epilepsy and their families so that they may share ex periences and support each other with love, respect and care.
- To provide knowledge, resources and training to people with epilepsy and their caregivers to improve their quality of life.
- To work towards policy change that empowers people with epilepsy in society.
For more on Samman Association log on to: www.epilepsymumbai.org
Purple Day, National Epilepsy Day, International Epilepsy Day
When is National Epilepsy Day 2016?
The National Epilepsy Day is celebrated on the 17th of November every year in India.
People with Epilepsy have not been treated kindly by history. Should we repeat the mistakes of the past?
Change all that and proceed to the ways of the future : support the National Epilepsy Day.
Origins of National Epilepsy Day in India
The National Epilepsy Day in India started in 1991 with the proposal of doctors Eddie and Piloo Barucha of the Indian Epilepsy Association. Since then,it has been celebrated annually nationwide, providing the people of India accurate and up-to-date information on Epilepsy.
How to celebrate National Epilepsy Day
- On this day, various organizers hold seminars about Epilepsy. Why not join and learn new things?
- Know someone who has Epilepsy? Refer them to the various specialists pres-ent in the occasion!
- Volunteer to help out on the National Epilepsy Day programmes for your district ! They will appreciate the help!
- Use the power of social media! Bring to the forefront of cyberspace con-sciousness the National Epilepsy Day!
International Epilepsy Day
IED is the joint initiative of two international Epilepsy Organizations: the Inter-national Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE). The first International Epilepsy Day took place on Monday, 9th February 2015. Following this, the official IED will be the second Monday of February each year. This world day for epilepsy will be a major step in improving epi-lepsy awareness in every region of the world, and will also highlight the urgent need for increased research into epilepsy.