My head is dizzy, I am in a tizzy
Unsteady my walk, confused my talk,
Falling, falling into this abyss I sink
Out like a light before you can blink
What happened to me I do not know
This pain in my head, it seems to grow
A cut in my tongue is there to show
Something did happen – oh where can I go?
My limbs they jerked and I had a turn
A fit it was in alarm I learn
A week goes by, my tongue heals
Back to my life I go, but fate steals
My life once more, knocking me over
And over again
Making people around me hover
What is this curse whose cause is unknown
My control is gone and I am all alone
Like a leaf in the wind I am blown
Is there any hope for me, I moan
Step out into the light and know more
We are there to bring you ashore
Trust us for we really do care
Your pain and strain and burden to share
Hiding was I behind a cloak of fear
Not knowing I had friends from far & near
Proactive I was & my treatment worked
Looking full in the face at those who smirked
So “Out of the shadows” I emerged
Instead of being in sadness submerged------
Poem composed by Dr.Prithika Chary
Epilepsy impinges on all these areas to a significant if not major degree.
In addition, adolescents tend to be very body-conscious and do not like to be different from their peer group.
The stigmatising effect of a condition which implies loss of control and requires the regular taking of medication is liable to have a very negative effect on the adolescent unless the situation is managed well.
Adolescence is an exciting but uncertain period::
If epilepsy presents for the first time in adolescence, this adds greatly to complexities of this period.
Well-established epilepsy may vary over the course of adolescence, increasing the uncertainty when so many other changes are taking place.
In managing epilepsy in adolescence it is important to consider specific syndromes and causes because these may require very different styles of treatment or management.
It is also vital to consider the impact of epilepsy on the life of the adolescent, and to minimise the isolation and stigmatisation that the teenager may feel at a time when being part of an approving peer group is so important.
These factors, together with the issues such as alcohol, driving, sport, contraception, genetic implications and safety versus independence', imply that the management of epilepsy in adolescence requires skill and sensitivity.
Denying that the epilepsy exists means that the patient takes risks, such as refusing to take medication or other precautions.
There are some specific management dilemmas in adolescents with epilepsy.
The broad area of independence versus safety' is difficult for an individual who is trying to establish independence and a smooth transition to adulthood, but may need to rely on others to some extent to maintain safety
Listen, counsel, inform; avoid giving advice::
The dilemma of declaring epilepsy on job/college applications may need to be discussed
Adolescents do not like being told what to do.
The doctor should try to encourage questioning and provide information, emphasising that the individual is in control of his or her own life.
Caring for teens with epilepsy requires special patience and understanding.
For children entering their teens with good self-esteem and a sense of independence, the impact of epilepsy can be minimal.
But epilepsy can aggravate or create problems of low self-esteem, dependency, or behavioral difficulties in adolescents
Parents may be overprotective and hesitate to encourage their teens to take responsibility for their own care.
If the teen is to make a successful transition into adulthood, however, he or she must learn that the epilepsy is their own and does not belong to the parent or the doctor.
Teens need information about their epilepsy so they can make appropriate lifestyle choices and assume responsibility for their seizure medicines, with parental supervision.
About 40% of individuals with epilepsy between the ages of 4 and 15 have one or more additional neurological disorders.
The most common ones are mental retardation, speech-language disabilities, and specific learning disabilities.
In fact, learning disabilities are more prevalent in individuals with epilepsy (approaching 50%) than in the general population
One of the most notable effects of cognitive functioning in children with epilepsy is memory impairment.
This impairment can range from poor concentration and minor forgetfulness to gross clouding of consciousness and disorientation.
Epilepsy might impact on learning in other ways.
Daytime seizures can affect learning by reducing alertness and by interfering with short-term information storage and abstraction.
Frequent and uncontrolled seizures impair learning new information due to the amount of time that the individual is unaware of the environment.
Night-time seizures can disrupt the consolidation of memory and affect language functions.
Cognitive impairments can also be a side effect of the various anticonvulsant medications used to treat epilepsy.
Anticonvulsant medications have been associated with learning difficulty, behavior changes, and memory impairment.
The drug most commonly implicated with altered behavior is phenobarbital, which can cause hyperactivity and memory impairment.
Almost all anticonvulsant medications have some adverse effects on cognition, learning, and mood.
Seek information on the following::
High risk of the unsupervised bath/swimming
Effect of irregular sleep
Advantages/adverse effects of specific antiepileptic drugs (AEDs).
Some epilepsies of Adolescence::
Juvenile myoclonic epilepsy (JME).
Juvenile absence epilepsy (JAE).
Epilepsy with generalised tonic-clonic seizures on awakening.
Benign partial seizures in adolescence.
Subacute sclerosing panencephalitis.
Epilepsy from cortical brain tumours.
Possible Negative Effects of Epilepsy on the Adolescent::
There may be varying degrees of denial by the individual concerned which may lead to a lack of compliance with medical advice.
Overprotection by parents may cause some adolescents to become less socially skilled and therefore less confident.
Social restrictions may lead to social isolation which can increase feelings of anxiety or depression and have a detrimental effect on psychological well-being.
Teenagers with epilepsy may believe they have less control over their lives compared to their friends, and this may cause anxiety, depression and poor self-esteem.
GLOBAL CAMPAIGN AGAINST EPILEPSY
Out of the Shadows
Specific objectives of the Global campaign against epilepsy
reduce the treatment gap and the physical and social morbidity of people suffering from epilepsy through intervention at community level
Train and educate health professionals;
dispel stigma and promote a positive attitude to people with epilepsy in the community;
identify and assess the potential for prevention of epilepsy;
develop a model for promotion of epilepsy control worldwide and for its integration in the health systems of participating countries
Management of Epilepsy
Drugs are the mainstay of treatment in epilepsy
In recent times epilepsy can also be treated by surgery
In addition to this life style modifications are important in the management of epilepsy
Confirmation of epilepsy
Objectives of treatment are to control seizures with minimum side effects
To enable this the first step is to confirm whether the fit, faint or fall is indeed due to epilepsy.
Classification by the ILAE classification is mandatory prior to starting treatment
All fits, faints & falls may not be epilepsy.
Cardiac disorders like aortic and mitral stenosis, Stokes Adams attacks, cardiac arrhythmias may cause syncopal attacks.
Beware of pseudoseizures
To treat or not to treat
Once a diagnosis of epilepsy is made, the question of whether to treat or not arises.
Recurrence rates after a single seizure (GTCS) vary from 16-61%.
After two tonic clonic seizures, the risk of having a third seizure rises to about 85%..
Risk factors for seizure recurrence
prior brain injury
Abnormal neurological examination
Epileptiform abnormalities on the EEG
Occurrence of postictal or Todd paralysis
A family h/o seizures
And acute symptomatic seizures caused by head trauma.
An epileptic syndrome
localisation related epilepsy
nonepileptic attack disorder
Choice of drug according to seizure type is based on
the mechanism of action of the drug
traditionally established efficacy of some drugs in certain types of seizures.
Monotherapy vs Polytherapy
Having decided what drug to use, monotherapy with the first line drugs is preferred in most patients.
Polytherapy may have to resorted to in some patients
Drugs should be appropriately combined, taking into account drug interactions, side effects, mechanism of action,etc as rational polytherapy
Advantages of monotherapy
Equal or superior efficacy to many two or three drug regimens
Reduced frequency of adverse effects.
Lack of drug interactions between antiepileptic drugs.
Increased ability to correlate drug response, adverse effects, and laboratory values to a specific drug
Reduced risk of birth defects when used in women of child bearing age
Improved compliance – this is important as noncompliance is the most common cause of drug failure and breakthrough seizures
Age & Sex of the patient
The same drugs are used to treat both children and adults, but the pharmacokinetics and side effect profiles of the drugs can differ.
Many drugs such as phenytoin, need to be given in proportionately higher doses to achieve therapeutic levels in young children.
Also, drugs that cause one type of side effect in adults (sedation) may cause opposite effects (hyperactivity) in children
. Age & Sex + Other factors influencing drug choice
Phenytoin affects calcium metabolism and can interfere with growth, hence would not be a first choice in a young children.
In the elderly, one has to be alert to drug interactions between antiepileptic drugs and co medications such patients may often be taking for other illnesses.
In women, the teratogenic potential of a drug may influence the choice of drug.
Another precaution is to choose relatively nonsedating drugs in patients handling machinery, etc
Drug related factors
The mechanism of action of an AED
Its plasma half life
The range between peak and trough blood therapeutic levels can influence the daily level and timing of dose of the drug
Interactions during polytherapy
potential for teratogenicity, etc
Mechanisms of actions of anticonvulsants
Sodium pump – Phenytoin +++/ Carbamazepine +++/Phenobarbitone++/Valproate++
Calcium ion – Valproate +/ Ethosuximide +++
When sodium dependant ion channels are dampened, sustained high frequency neuronal firing is reduced and calcium uptake and excitatory neurotransmitter release is decreased
Some drugs directly facilitate GABA eg Benzodiazepines, Phenobarbitone, Valproate
Ethosuximide reduces slow rhythmic firing of thalamic neurons
The ultimate effect is to enhance the inhibitory GABA or reduce the excitatory glutamate
THE IMPACT OF EPILEPSY
EPICENTRE, Chennai, India
It is possible to spread light in many ways. One can be the candle or the mirror which reflects the candlelight
The need for voluntary organisations
Epilepsy is a chronic disorder
Epilepsy is associated with profound emotional & social changes
Voluntary organisations are necessary to bridge the gaps in care from the medical profession and the state
Public support & private donations are essential to help people with epilepsy
The need for volunteers
The public needs education about epilepsy to get rid of its negative image
Professionals like teachers, nurses, social workers, hospital administrative staff, etc have little formal training in the truths about epilepsy
People with epilepsy, their families, friends & employers need educating and few centres or doctors undertake this.
The role of voluntary organisations
People with newly diagnosed epilepsy or people struggling to cope with epilepsy need education & support
Counselling is necessary
People with epilepsy feel isolated & alone. Being able to talk to other people helps overcome emotional handicaps & stigma
Action groups willing to spread awareness are necessary
EPICENTRE is the Epilepsy Institute & Centre for Treatment, Research & Education
It was started in Chennai in 1994 on 9th March
Its vision was to provide comprehensive diagnostic and therapeutic services to people with epilepsy
Its mission is to enable people with epilepsy live a full life, with everyone, like everyone in spite of epilepsy
PSYCHOSOCIAL ASPECTS OF EPILEPSY
Epilepsy is more than a medical diagnosis
It can influence many aspects of one’s family & social life
These difficulties can impact the epileptic’s mental health & have a powerful impact on seizure control
Education, employment,family life, social networks, emotional adjustment are all issues to be dealt with.
EDUCATION - Problems
Early onset of seizures
Prolonged seizure history
Left hemisphere causes for epilepsy
Brief epileptic discharges
High dose of medication
Multiple drug effects (polypharmacy)
All of these can cause academic difficulties
The MOST important cause for poor school performance in children with epilepsy are:
Parental expectations & overprotection
Misconceptions about epilepsy
Absence from school
Low self esteem
Anxiety due to stresses at home
EDUCATION & EPILEPSY-Solutions
Establish good communication channels between the school,family & doctor
Educate teachers, pupils, family and the child with epilepsy
Encourage a positive self image by avoiding unnecessary restrictions, increasing chances of success, & by providing reliable career advice
Minimise time off from school for clinic appointments, seizure recovery
Ensure full education by encouraging tertiary education
Sensitive monitoring - detect difficulties early, neuropsychological & psychosocial evaluation and counselling
These measures maximise the academic & social development of a child with epilepsy
EMPLOYMENT - Problems
People with epilepsy face high levels of unemployment/underemployment
Work provides in addition to financial rewards, a way of structuring time, contributes to person’s identity & feeling of self worth
If paid employment is not available, jobs enabling meaningful contribution to society should be encouraged
EMPLOYMENT & EPILEPSY-Solutions
Encourage a structured daily activity during childhood, and after leaving school
Educate children & families about career options & choices
Provide a nurturing environment of job choices, both paid and unpaid
Emphasise the necessity to keep busy even (if there is no financial gain)to develop a feeling of self worth
FAMILY LIFE - Problems
People with epilepsy do not live in a vacuum
Attitudes of family greatly influence coping ability
Epilepsy impacts family relationships
Fear of adverse social reaction may isolate families
Misconceptions about epilepsy may make parents overprotective & feel inadequate
FAMILY LIFE & EPILEPSY-Solutions
Provide accurate information about epilepsy, its treatment, etc
The impact on the family of a parent with seizures is profound and such a parent requires a lot of psychosocial support. Children in such families may be overprotective & show behavioural difficulties,as refusal to sleep or attend school
SOCIAL NETWORKS- Problems
50% of young people with epilepsy spend most of their time at home in social isolation
They may be too frightened to go out
They may be too anxious about possible stigmatistion & marginalisation
Their anxiety may make them awkward or even rude in social situations
SOCIAL NETWORKS & EPILEPSY - Solution
Education about epilepsy to both the patient and those around him/society
Stress management programs
Social skill development programs
Providing a forum for self expression and mingling with others (support groups, self help groups,etc)
EMOTIONAL ADJUSTMENT - Problems
Lack of control
Unpredictability of timing, type and location where seizures may occur
Societal & family attitudes and degree of support available
Sz frequency & severity may not directly be related to an individual’s ability to cope
EMOTIONAL ADJUSTMENT - Solutions
Psychological interventions to encourage
Adaptive coping strategies
Treatment of anxiety & depression
Promoting positive life style
In those with neuropsychological deficits, such as memory or attention difficulties,additional support is needed & realistic educational & employment goals should be set and ADL coping strategies emphasised
THE PATIENT’S VIEW - When an attack occurs
When a seizure occurs, an onlooker may respond in many ways
They may recoil in horror
Make fun of the patient
Ignore the patient entirely
Call a doctor or an ambulance
THE PATIENT’S VIEW - Daily hassles
The person with epilepsy needs support to:
Overcome social slights and cruel remarks
Have confirmation of his/her self esteem
Adjust positively to the diagnosis with time
Pursue an active social & working life
Overprotection can lead to increased dependency, lack of motivation, and illness behaviour patterns
THE PATIENT’S VIEW
Epilepsy is associated with mental illness & mental handicap
Single seizures cause brain damage
Epilepsy is inherited, irrespective of cause
Epilepsy is always for life
These “taboo” concepts have to addressed & the best way to do this is by education
THE PATIENT’S VIEW - Disclosure vs concealment
Many people with epilepsy fear lack of understanding and fear rejection in these areas, hence say nothing about their epilepsy and live in fear of an attack
THE PATIENT’S VIEW
In addition to various psychosocial problems associated with the diagnosis of epilepsy,the person with epilepsy also faces the problems of treatment
Cost of treatment
Time off for clinic visits, rest periods, etc
Side effects of medication like chronic fatigue, memory loss, unsteady gait, concentration difficulties, etc
HOW MANY PEOPLE HAVE SEIZURES?
20-120 people per 100,000 population have epilepsy or 5-10 per 1000
The lifetime risk for anyone having a seizure is 2-5%
The risk of a febrile seizure before the age of 5 years is 5%
Half of those developing epilepsy do so below the age of 15 years
WHY DOES EPILEPSY OCCUR?
60-70% of all epilepsies have no clear cause
They are called cryptogenic epilepsy
Other causes include
Brain damage at birth,etc
Rare causes - birth defects, etc
Why treat epilepsy ?
More seizures before diagnosis, worse the prognosis
The first two years after onset of seizures is very important for treatment
If seizures persist for more than 2 yrs despite treatment, the chance of remission is halved thereafter
Majority become seizure free in the first 2 yrs of treatment
Even late introduction of treatment can give control in about 50% of patients
Why treat epilepsy - SUDEP Common causes of death :
Chest infections due to aspiration
Epilepsy related death (SUDEP)
SUDEP - sudden, unexpected death status epilepticus, seizure related death, accidents, drug overdose
Epilepsy - the facts
The risk of having a febrile fit before age 5 years is 5%
Half of those developing epilepsy do so by the age of 15 years
Major geographic differences of incidence are not reported
About 60-70% of epilepsy have no clear cause
At least half of these patients show abnormal tissue lesions on imaging
60% of epilepsy is complex partial seizure and secondarily generalised seizure
30% is primary generalised epilepsy
Absence & myoclonic constitutes less than 5%
Overall over 40% of patients do not receive treatment for epilepsy, and the treatment gap can increase to 90% in some underdeveloped countries
Why does epilepsy occur?
Epileptic neurons with unstable membranes (abnormal conductance of sodium, potassium, calcium)
Loss or recurrent inhibition due to genetic causes or brain injury and abnormalities in the GABA pathway
Excess activity or increased sensitivity to excitatory aminoacid neurotransmitters eg:glutamate
Prognosis of epilepsy – indicators for poor recovery
Partial or mixed seizure types
Presence of structural cerebral pathology
Presence of intellectual handicap, psychiatric illness, personality change or social problems
Older age of patient,positive family history,severe EEG abnormalities less certain indicators of poor prognosis
The ability to cope with daily activities
Difficulties with employment
Difficulties in sexual relationships
Referral for counselling is usually for anxiety,depression, need for emotional support and noncompliance of treatment
Areas to concentrate on
Family background - home life & relationship with family
Emotional adjustment - anxiety, ability to cope with stress, depression
Social life - Isolation, problems meeting people,forming & sustaining friendships
Daily life - Difficulties in eating, sleeping, alcohol, etc
Personal relationships - close loving and sexual relationships
Work/employment - Difficulties in obtaining or keeping work, attitude of employer or colleagues to epilepsy
Management of the condition - the patient’s adjustment to seizures and their management
Emphasize the need for equal effort from patient & counsellor to achieve success
The counsellor’s role
One hour sessions for at least 5 to 6 sessions are necessary
Issues such as fear, anger, denial and confusion have to be addressed
Offer coping strategies
Overcome blocks to change
Set & review agreed tasks
The counsellors role
Coping strategies are very important
Indicate that choices are available
This will enable the patient to deal with problems in a practical way
The intrusion of epilepsy into daily life can then be viewed in a more balanced way
Anxiety levels then come down
Quality of life is improved and the patient feels more in control
Employment Patients may seek guidance for the following:
Career guidance for a school leaver with epilepsy
Employment difficulties faced by people with active epilepsy
Employment difficulties faced by people with late onset epilepsy
Employee related factors
Age, motivation to work, aptitudes, skills,qualifications and work experience and job performance if already employed
Knowledge of own epilepsy
Seizure related factors - cognitive, sequelae , timing, frequency & pattern of seizures
Adverse effects of drugs
Other handicaps - cognitive, psychiatric,physical, social
Job & employer related factors
State of job market
Health and safety requirements
Availability of special employment provisions
Employer related - knowledge & attitudes towards epilepsy,recruitment & employment policies & practices, access to occupational health services
The physician’s role
Early, accurate identification of seizures
Achieving rapid control with appropriate therapy
Effective counselling on the nature & implication of epilepsy
Ensuring that the individual is fully knowledgeable of his/her epilepsy and is able to communicate this knowledge effectively
Providing accurate information about statutory & nonstatutory barriers to employment
Giving accurate information to employers & employment advisors as necessary
Giving medical support to the employee on a long term basis, particularly when job prospects are threatened
Health & Safety requirements in the workplace
Driving license regulations can be used as a standard for assessing risk in the workplace
Medical information should be kept separate from other details about the employee, and should only be considered after employment decisions have been taken & considered only by qualified personnel
Driving & transport
Seizure freedom for one year
Aura, seizures with retained consciousness, minor attacks with preserved consciousness, myoclonic jerks are all counted as seizures
Seizures due to noncompliance of drug intake, or due to change in medication are not exempt
Seizures occurring only in sleep & this pattern for 3 yrs or more can drive
Heavy vehicle licence can be held if no sz or treatment for sz for over 10 years, and no neurological evidence for continuing liability to seizures.
There are no laws, advocacy or support facilities with regard to driving and travel in India, except that epilepsy is taboo
When a crime is committed the following considerations could negate a guilty mind:
The person was under duress*
The person was provoked*
The person was innocent
The person was of diseased mind
The person was absent in mind during the act
Duress & provocation are not relevant
Automatism & Crime
Medical definition of epileptic automatism:
A state of clouding of consciousness which occurs during or immediately after a seizure, during which the individual retains control of posture & muscle tone, but performs simple or complex movements without being aware of what is happening. The impairment of awareness varies. A variety of initial phenomena before the interruption of consciousness & the onset of automatic behaviour may occur
Legal definition of automatism:
The state of a person who, though capable of action, is not conscious of what he is doing..it means unconscious, involuntary action and it is a defence because the mind does not go with what is being done.
Action without any knowledge of acting, or action with no consciousness of doing what was being done
Expert witness - checklist for epileptic automatism
The patient should be a known epileptic The act should be out of character & inappropriate to the circumstances There must be no evidence of premeditation or concealment If a witness is available,a disturbance in consciousness should be witnessed Loss of memory for the event is usual Epileptic automatism is a clinical diagnosis, though EEG/CT/MRI etc may offer support
Medicolegal aspects Role as expert witness:
Epilepsy & driving
Epilepsy & violence - does it occur?
Epilepsy & crime
In daily practice:
Confidentiality- legal & ethical problems
Legal aspects of advice to patients
What may go wrong - negligence relating to management of epilepsy
Genetic factors in epilepsy
Epilepsy is a major feature in over 160 single gene disorders, & in 2/3 of these mental retardation also occurs
These constitute only 1% of all cases of epilepsy
Epilepsy can be familial, and almost any cerebral disorder can lead to epilepsy
Risk of developing epilepsy
Overall sibling risk of seizure 2-5%
If EEG is done, 20-30% of siblings will show abnormality, even is seizure free clinically
Early age of onset increases chance of family member having epilepsy -7.5% if onset 0-3 yrs & 4% if onset 4-15 yrs
Risk of epilepsy if sib does not have epilepsy is 1.5%
Unprovoked sz in offspring of patients with epilepsy is about 6%
This is twice as high if the mother has epilepsy and if the seizures were of early onset
If idiopathic generalised epilepsy, risk is 9-12% and 3% if cryptogenic partial epilepsy
Risk higher if both parents have epilepsy
1/3 of patients with a single seizure have a second seizure within one month
Recurrence after 2-5 untreated seizures is 32% within the first month,51% within three months and 87% within one year
Early effective treatment may prevent development of chronic, drug resistant epilepsy
Management of Women’s Issues in Epilepsy
Dr. Prithika Chary
Consultant Neurologist & Neurosurgeon
Chief, Division of Epileptology
Apollo Hospitals, Chennai
Women with epilepsy - Life stages
Women with epilepsy face a number of problems unique to their gender.
These special concerns, relate to menses, birth control, conception, pregnancy, childbirth, child care, and menopause.
Care of women with epilepsy entails some special considerations as seizures are often linked to menarche, the menstrual cycle, and menopause
Sexual function and reproductive health are affected by seizures and antiepileptic drugs.
Some of these drugs are associated with an increased failure rate of hormonal contraceptives
Pregnancy in a woman with epilepsy carries an increased risk to both mother and child.
Seizures related to the menstrual cycle
An increase in seizure frequency around the time of menstruation (catamenial epilepsy) was first documented more than 100 years ago
It is variously reported in 10% to 72% of women
Seizures are linked to menses because sex hormones alter the excitability of neurons in the cerebral cortex
Estrogens can lower seizure threshold, resulting in an increase in the frequency of interictal spikes & seizures
Progestins have the opposite effect and may protect against seizures
Ovulation & Seizures
The presence or absence of ovulation in any single menstrual cycle affects the likelihood of seizure, and women may exhibit different patterns of seizure exacerbation
Ovulatory cycles display two distinct patterns.
First, seizures may increase a few days before menses and in the first 2 to 3 days of bleeding, perhaps precipitated by the rapid decline in progesterone levels.
Second, seizure frequency may increase at the time of ovulation as a result of the rise in estrogen levels.
Ovulatory cycles protect against seizures
In women with catamenial epilepsy there is a reduction in seizures during the luteal phase (days 17 to 24) of ovulatory cycles owing to the protection of increased progesterone levels.
With anovulatory cycles, the progesterone-secreting corpus luteum is not formed and estrogen levels remain high.
Anovulatory cycles are associated with a pattern of increased seizures during the entire second half of the menstrual cycle.
Diagnosis of Catamenial pattern
To determine if a catamenial pattern is present, patients should be instructed to chart menses along with basal body temperature and seizures for several months.
A record of basal body temperature is useful in determining ovulation.
Progesterone levels can be measured on day 22 of the menstrual cycle (day 1 being the onset of menses). A progesterone level lower than 5 mg/mL on day 22 indicates an anovulatory cycle.
Management of catamenial seizures
A supplemental daily dose of the maintenance antiepileptic drug at the expected time of seizure exacerbation
Acetazolamide (Diamox), a carbonic anhydrase inhibitor, has also been used but with limited success.
Hormonal manipulation is unconventional, but it may involve either increasing the level of progesterone or decreasing the level of estrogen
Any treatment with hormonal manipulation should be done in collaboration with a gynecologist and in the presence of effective contraception.
The choice of birth control for women with epilepsy must take into account the high failure rate of hormonal contraception in women taking hepatic enzyme-inducing antiepileptic drugs
The hepatic P-450 system also metabolizes sex steroids, and the enhanced metabolism induced by some antiepileptic drugs leads to lower hormonal levels and reduced contraceptive efficacy
Hepatic induction & Contraception
Oral contraceptives may still be used, but higher doses are needed (ie, 50 micrograms of estrogen rather than the typical 35 micrograms
Hepatic enzyme inducing antiepileptic drugs are Carbamazepine (Tegretol), Felbamate, Phenobarbitone Sodium, Phenytoin sodium (Dilantin), Primidone (Mysoline), Topiramate (weak)
Long acting contraceptives
Contraceptive failure has also been reported with the use of fixed subdermal levonorgestrel (Norplant System) in women taking carbamazepine or phenytoin sodium because of a similar mechanism
Medroxyprogesterone acetate (Depo-Provera) may provide a useful alternative . The currently recommended dose is 150 mg administered intramuscularly every 3 months.
Contraceptive failure does not occur with
Valproic acid ,
Benzodiazepines because they do not induce hepatic metabolism.
Sexual and reproductive health
Complex partial seizures, are associated with overall hyposexuality and reduced libido
Many studies have shown decreased libido or impotence in up to two thirds of men with epilepsy
In women, dysfunctional sexual behavior was present in up to 50% Sexual Dysfunction
Important causes of sexual dysfunction include
social and psychological influences,
disruption of normal limbic function by epileptic discharges,
altered pituitary or gonadal hormones,
secondary effects of antiepileptic drugs.
Reproduction in both men and women with epilepsy is lower than in the general population
Social factors such as fear of having a child with epilepsy or a congenital malformation may significantly influence reproduction
Women with epilepsy have fewer children than women in the general population.
Their fertility rate is 25 to 33 % lower than average.
Social pressures on women with epilepsy to refrain from having children may be a factor in their lower rate of childbearing.
Women with epilepsy are at higher risk for
Reproductive endocrine disorders, such as polycystic ovarian syndrome and hypogonadotropic or hypergonadotropic hypogonadism
Menstrual cycle disturbances that entail a higher incidence of anovulatory cycles .10% of menstrual cycles are anovulatory in healthy women,while 35% are anovulatory in women with temporal lobe epilepsy.
Infertility in a couple requires careful evaluation in both partners.For women with epilepsy,
pelvic ultrasound to rule out PCOD
Serum luteinizing hormone (LH) and follicle-stimulating hormone (FSH) concentrations
Midluteal-phase progesterone levels may help identify a treatment focus
Epilepsy & Pregnancy
Epilepsy is the most common neurologic disorder in pregnant women
Prevalence of epilepsy in women of child bearing age is 0.3-1.0%
Most pregnancies are routine, and most of the children delivered are healthy
However, both seizures and antiepileptic drugs can adversely affect the foetus
Most women with epilepsy can conceive and deliver healthy children.
However, their pregnancies are considered to be high risk because many of these women experience more complications than women who do not have epilepsy.
During pregnancy, 1/4 to1/3 of women with epilepsy have an increase in seizure frequency.
This is not related to type of seizure, how long the woman has had seizure, or how often she had seizures during previous pregnancies.
The increase in seizure frequency seen during pregnancy is strongly associated with the changing blood levels of AEDs during pregnancy.
Seizures, particularly GTCS (grand mal) seizures, can be hazardous in pregnancy.
They can cause miscarriages.
Trauma from falling is a major cause of obstetrical injury.
GTCS place both mother and fetus at risk for hypoxia and acidosis, both of which can affect the mother's and baby's central nervous systems.
Although rare, stillbirths have occurred following a single generalized convulsion or series of seizures.
Status epilepticus carries a high mortality rate for mother and fetus.
Also, generalized seizures occurring during labor can affect the baby's heart rate.
All women have a 2-3% risk of having a child with a birth defect.
This risk is higher in women with epilepsy, estimated at 4-6%.
Genetic factors and taking antiepileptic medications may both play a role in this risk.
While pregnancy presents special concerns for women with epilepsy, more than 90% of those who become pregnant give birth to normal, healthy infants.
Problems Associated with Epilepsy in Pregnancy
CHANGES IN DRUG METABOLISM
INCREASE IN SEIZURE FREQUENCY
DECREASE IN FETAL VIABILITY
INCREASED RISK OF FETAL BLEEDING
DECREASE IN FETAL GROWTH
DECREASE IN CHILDHOOD INTELLIGENCE
Problems Associated with Antiepileptic Drugs
Characteristic potential fetal/neonatal effects
Carbamazepine (Tegretol) Drowsiness, leukopenia, ataxia, mild hepatotoxicity/ Facial dysmorphisms, neural tube defects, hypoplasia of distal phalanges
Phenytoin (Dilantin) Nystagmus, ataxia, hirsutism, gingival hyerplasia, megaloblastic anemia / Facial clefting, hypoplasia of distal phalanges, hypertelorism, neonatal coagulopathy
Phenobarbital Drowsiness, ataxia / Neonatal withdrawal, neonatal coagulopathy
Primidone (Mysoline) Drowsiness, ataxia, nausea / Neonatal withdrawal, neonatal coagulopathy
Valproic acid (Depakene) Ataxia, drowsiness, alopecia, hepatotoxicity, thrombocytopenia / Facial dysmorphisms, neural tube defects
Guidelines for Counseling Women with Epilepsy Who Are Planning Pregnancy
The risk of major malformations, minor anomalies and dysmorphic features is 2 - 3 fold higher in infants born to women who take AEDs while they are pregnant than the risk in infants born to women who do not take these drugs.
Some of this risk is caused by a genetic predisposition for birth defects inherent in certain families. Maternal and paternal family medical histories should be reviewed for birth defects.
Re-assess & confirm the diagnosis of epilepsy
Re-evaluate the continued need for AED
Transfer to single drug therapy if possible
Treat with the lowest individual effective daily dose
Change of AED if necessary
Folic acid supplementation
Reassurance on the altogether benign course of pregnancy, delivery and good outcome in over 90% of the cases, and on the benign prognosis of epilepsy, provided good drug compliance is maintained
Management during pregnancy
Counsel on value of good drug compliance
Monthly neuro check with drug monitoring
Increase AED dose SOS, preferably based on clinical criteria I.e. sz control & side effects
Reassure on good course & outcome of pregnancy
Individualised obstetric monitoring, including determination of serum AFP & US
Counsel on continued drug compliance during delivery & on breast feeding ( recommended)
Pregnancy +Epilepsy - Risks to mother
Usually no dramatic change in course of epilepsy
Risks of GTCS/status epilepticus to be avoided
Importance of good drug compliance to be emphasised
Pregnancy+Epilepsy - Risks to foetus
Lower postnatal APGAR scores
Increased risk for asphyxia
Lower incidence of physiological icterus
Lower Vit K - replacement required 1mg/Kg
Postnatal sedation vs hyperexcitability
Breast feeding is recommended despite associated risks
Management during peurperium
Lower daily dose of AED in case of side effects
Maintain a good night’s sleep despite breast feeding during the day
Paediatric monitoring as necessary
Epilepsy & Pregnancy
Women should undergo evaluation by their neurologist regularly during pregnancy.
Serum AED levels should be monitored closely and adjusted if seizures occur.
Both free and total levels of PHT & CBZ should be checked.
Investigations during pregnancy AED levels
6-10 wks AED levels (free and total), serum folate level
15-16 wks Maternal serum AFP, amniocentesis, AED levels,Triple screen MOM
28 wks AED levels
34-36 wks AED levels, maternal vitamin K
18-19 wks A high-level ultrasound predicts a neural-tube defect with an accuracy of more than 95%
22-24 wks Ultrasound for oral clefts and heart anomalies
Management during pregnancy
Women need to obtain adequate sleep because sleep deprivation might increase seizure frequency.
Vitamin K, 20 mg a day orally, should be administered for the 2 weeks before delivery to decrease the risk of maternal and neonatal bleeding .
Delivery should take place in a clinic with facilities for providing specialized care to epileptic patients and with an associated neonatal intensive care unit.
AED administration should be continued during labor.
Parenteral medication or additional oral doses may be necessary because of decreased absorption during a prolonged labor.
Monitoring of maternal antiepileptic drug levels should continue postpartum.
Levels gradually return to baseline by 12 weeks after delivery.
Mothers should be advised to avoid sleep deprivation.
Breast-feeding and child-care issues should be discussed.
Serum concentrations of AEDs in breast milk
Commission on Genetics, Pregnancy & the Child 1993
Many women with epilepsy can breast-feed.
Phenytoin sodium 18%-30%
Valproic acid 5%-10%
Gabapentin , Lamotrigine , Topiramate Not known
Little is known about menopause and epilepsy.
During menopause, ovarian follicles involute and levels of both estrogen and progesterone decline dramatically.
Steroid hormones are derived from the adrenal cortex. In response to the lack of feedback inhibition, LH and FSH concentrations rise.
Seizures become more unpredictable. Control improves in some women and worsens in others.
One systematic study concluded that seizures are more likely to decrease if they exhibit a catamenial pattern and if they began in adult life.
Poorly controlled seizures are likely to worsen.
In a recent report 51% of women experienced a change in seizure frequency during menopause; increases and decreases in frequency were reported equally.
Additional prospective studies are needed.
Menopause & HRT
The use of supplemental estrogen raises concern because of the possibility of increased seizures
This may be a rare occurrence, so the risks and benefits of its use need to be assessed on an individual basis
TRAVEL & EPILEPSY
COMMON SENSE A FEW PRECAUTIONS
HAPPY & SAFE JOURNEYS
TRAVEL AND EPILEPSY
Plan on traveling with a companion as far as possible
Travel during the cooler months of the year
Be honest about informing others about your epilepsy
Take out travel medical insurance
Take enough medication to last the entire holiday and carry a prescription for the same
Airlines will at request remind you about medication
For customs purposes carry medications in clearly marked original containers
Adjust medication for changes in time zones.
Preferably stick to the usual time interval as at home
Sleeping - long journeys and early departure times can disrupt sleep. Ensure 6 hrs sleep per day Drinking - Drinking large amounts of fluids or too little fluid in hot climates can provoke seizures. Avoid alcohol. Eating - Eat regularly to avoid low blood sugar
If cycling, wear a helmet
When walking, stay to the outside edge of the road.
Avoid walking close to water and always cross the road through a subway or marked crossing
Avoid traveling upstairs in a bus, stay clear of doors and stay away from the edge of platforms
Driving - avoid if possible
Accommodation- Avoid balconies, stairs.
Check room for sharp objects which might hurt you during a seizure.
Take usual precautions during bathing and cooking.
Do not bolt bathroom doors on the inside while bathing
Discos can hold some risk if you have photosensitive epilepsy, when they are best avoided
Water sports are safe if accompanied by someone who can swim
Alfred Nobel, Swedish Chemist (1833 - 1896)
'Nobel was subject to migraine, and to convulsions from infancy.'
The great 20th century American epileptologist William Gordon Lennox thought so
Gaius Julius Caesar
The assumption that Caesar suffered from epilepsy is backed by several sources dating back to Roman times
The Roman authors already link Caesar's epilepsy to cerebral sclerosis, while others attribute it to alcohol.
This would suggest that in ancient Rome a distinction was already being made between the 'genuine falling sickness' and a symptomatic type of epilepsy.
Napoleon Bonaparte, French Emperor (1769 - 1821)
The following anecdote is taken from one of Napoleon's biographies which was published as early as 1838: 'From his youth, he had epileptic fits. When he was at school in Paris, he had to eat on his knees as a punishment for insubordination, but he had such a huge seizure that they had to let him off.' Gaius Julius Caesar – Roman statesman.
Lord Byron-English poet
In his aphorism Self-flight, Nietzsche writes: 'Consider that four of the men who were most thirsty for action in all history were epileptics (namely Alexander, Caesar, Mohammed and Napoleon), and that Byron was also subject to this infliction.
Vincent van Gogh – Dutch painter
There is every reason to believe that van Gogh suffered from a focal epilepsy accompanied by simple focal and complex focal seizures Van Gogh did not suffer from epileptic seizures until the last two years of his life, in what was remarkably his most artistically creative phase
Fyodor Mikhaylovich Dostoyevsky, Russian Writer (1821 - 1881)
Fyodor Mikhaylovich Dostoyevsky is without doubt the most well-known of all famous people who had epilepsy
Dostoyevsky used his own illness and the suffering that went with it as a theme in his writing.
Prince Myshkin in the novel 'The Idiot'. This character also reveals most about Dostoyevsky's own illness.
Gustave Flaubert, French Writer (1821 - 1880)
Flaubert's first epileptic seizures are reported to have taken place in the years 1843/44, when Flaubert was 22
Pious IX., Pope (1792 - 1878)
In his youth, Pious IX had a sickly constitution and suffered epileptic seizures Saint Paul-Apostle
In old Ireland, epilepsy was known as 'Saint Paul's disease'. The name points to the centuries-old assumption that the apostle suffered from epilepsy.
20th Century celebrities with epilepsy
Modern writers who had epilepsy include: Dame Agatha Christie, the leading British writer of mystery novels, and Truman Capote, American author of In Cold Blood and Breakfast at Tiffany's
Modern Actors with Epilepsy include Richard Burton, Michael Wilding, Margaux Hemingway and Danny Glover.
Former Captain of the Socceroos, Media Commentator and currently runs the Paul Wade National Soccer School.
Paul has epilepsy
Talented young artist will be displaying her multimedia and sound installation Electrical Discharge inspired by her experiences of tonic clonic seizures.
Jonty Rhodes - cricketer
Jonty made international headlines when he dived to hit the stumps and run out Pakistan batsman Inzamam Ul-Haq in the 1992 World Cup.
Following his heroic feat he revealed in an interview that he had epilepsy.
Since then he has worked closely with Epilepsy South Africa in promoting and publicizing the plight of people with epilepsy.
According to Epilepsy South Africa's National Director, Kathryn Pahl, "Jonty is one of the most prominent figures world wide who openly acknowledges his epilepsy. He has helped us tremendously by creating a public profile for epilepsy, as well as by acting as a role model to which youngsters with epilepsy can aspire."
Television, Computers & Epilepsy
DR. PRITHIKA CHARY, EPICENTRE, CHENNAI
Seizures brought on by flickering light
TV, Discos, Flashing VDU graphics,
Sunlight flickering through leaves,
Striped patterns on grill, gratings, clothes, furnishing fabrics
4% of patients with photosensitive epilepsy
TELEVISION & SEIZURES
Refresh rate is 50 to 60/second
In colour TV it is a row of dots rather than lines
At a time only half the lines are seen ie. 25 lines per second
Obvious when sitting very close to TV with a large screen
Newer TVs with 100Hz refresh rate are safer
SEIZURE INDUCING PATTERNS
Stripes of 1/8 “ three feet from the eye
Stripes of 1/4” six feet from the eye
Moving striped or trellis patterns
Rarely reading can provoke seizures as the stripes formed by printed text form a troublesome pattern
Flashing graphics and lights eg car headlights
TIPS FOR SAFE TV/VDU USAGE
Small screen ideal 12 to 14 inches for playing video games & computer usage
TV should produce a stable picture
Colour & Black & White do not differ
Viewing distance should be four times the width of the screen while playing video games or watching TV
. Moderately lit room with dim picture preferable
TIPS FOR SAFE TV/VDU USAGE
Moving graphics as in video games provoke seizures
Colour content of the picture may be important eg: red is worse than blue
Striped patterns have high potential to cause seizures especially if the pattern is moving
The picture should be stable and not roll or zig zag
EEG & PHOTOSENSITIVE EPILEPSY
EEG can diagnose photosensitive epilepsy when photic stimulation at varying frequencies of flashes are given.
Response may be photoparoxysmal, photoconvulsive, etc.
This type of epilepsy can be controlled with Sodium Valproate and sensible viewing of TV/VDU, etc.