EPILEPSY MEDICAL & SOCIAL ASPECTS

Item

Title: EPILEPSY
MEDICAL & SOCIAL ASPECTS
extracted text: EPILEPSY
MEDICAL & SOCIAL ASPECTS
Second edition, Oct. 1991

Published by :
Indian Epilepsy Association (Bangalore Chapter)
No. 1, Old Veterinary Hospital Road
Basavanagudi, Bangalore-560 004.

Courtesy :
Vijayam Bharani Trust, Bangalore-560 080

Price : Rs. 10/-

FOREWORD

This revised edition of a booklet on "Medical and Social Aspects of
Epilepsy" is meant primarily for the general public, especially
patients and their relatives. The best way to handle a disease is to
try and know as much about it as possible. Enough information
has been given so that either the patient or the relative should be
able to know the type of epilepsy which the patient has, the drug
treatment required along with it’s duration and potential for side ef
fects. The reader will also get to know about the probability of full
control, the risks of a relapse when drug treatment is withdrawn
and the role of surgery in epilepsy. Emergency treatment at home
for continuing seizures is also emphasized. The understanding of
information given may not be easy but going through it more than
once is worth the effort.
The' Indian Epilepsy Association consists mainly of non-medical
people, patients, parents and those interested in our objectives viz.
to dispel the myths about epilepsy and make life worth living
for these pateints. Chapters of this association are in existence in
most state capitals in our country. Do join them and strengthen our
hands.

Our thanks are due to Dr. K.S.Mani, retired Professor and Head of
Departmnet of Neurology, National Institute of Mental Health and
Neurosciences (NIMHANS), Bangalore for writing of this booklet.
We are indebted to Vijayam Bharani Trust for their continuing sup
port in publishing this booklet.

We earnestly hope you will find it useful.
Bangalore - 560 004.
1st October, 1991

N.Nagendra,Hon. Secretary
Indian Epilepsy Association
Bangalore Chapter

EPILEPSY : MEDICAL & SOCIAL ASPECTS

MEDICAL ASPECTS
1.

GENERAL

1.1

Epilepsy is an extremely common illness occurring in about 1 in 200
of the general population in Western countries and as per studies in
the sixties perhaps 1 in 100 in our country. This higher figure in India
may be because of a combination of poverty, poor nutrition, large
families and infections, particularly during childhood. However,
recent epidemiological studies in the eighties in India have chal
lenged the previously held view of a greater prevalance of epilepsy in
our country. Figures ranging from 4 to 6 per thousand (ap
proximately 1 in 200) of the general population have been obtained.
An epidemiological study on the prevalence of epilepsy carried out
in Yelandur Taluk, Mysore District by us, with help from the Indian
Epilepsy Association (Bangalore Chapter) and Karuna Trust, Yelan
dur through a door-to-door survey of a population of 61,801 has
given a figure of 4.3 per thousand in addition to one of 1.93 per
thousand for Hot Water epilepsy. This drop in the figures could well
be due to improved maternal and child welfare, childhood nutrition
and universal immunization measures in the country.

1.2

Epilepsy is not caused by devils or evil spirits. It is due to a mild
disturbance in the working of the brain and no more. Provided it
is treated early/and properly it hardly interferes with the activities of
the individual. Famous people in history like Alexander, Julius
Caeser and Napoleon were all epileptics, yet they were brilliant.
There are very prominent, active and intelligent people in present
day society who have epilepsy, eg. Tony Greig, the Test Cricketer
and Richard Burton, the actor. It is very unfair to think that these
patients are cursed by evil influences or punished for sins in their
previous births.

2.

MEDICAL

2.1

Ordinarily epilepsy is considered as a condition wherein there are
violent convulsions in the body. This is not always so. All move
ments are not epileptic and in certain types of epielpsy there may be
no movement at all.

E- LEPSY : MEDICAL & SOCIAL ASPECTS

2—

If a patient develops an attack, observe the details. Do not get
panicky. What are the types of movements ? Where do they start ?
How do they spreaa ? What happens to the eyes ? Are they rolled
up or are the eyelids closed ? is there froth ? Did the patient pass
urine or stools during an attack ? Pinch tne nose tight for ruil 30 - 40
seconos ana observe the reaction. How long do tne convulsions or
unconsciousness last ? How is he ( or she) on recovering con
sciousness ?
"here are extremeiv imoonant data which helo the doctor to diag
nose not cniv wnetner n is epiiepsy at ail out aiso if it is so. its type.
The single most important aio in the oiagnosis or epileosy ana its
tvoe is an accurate description. Nearly 15% of cases atagnosea
as epiiepsy qo not suffer from ft ana this state of affairs is oecause oi poor nistory. .mitate the anacK it you can. but do it ac
curately.

2.3

It is completely wrong to say that epilepsy is a mental illness. It is al
most always due to a structural disease in (he brain. The com
monest such structursal abnormality is a scar formed at or after birth
or during childhood with resultant epileptic attacks years later.
Other causes include tumours, head injury, infections, diseases of
blood vesseis etc. In 85% of patients the intellect remains normal.
However, when the underiying structural disease is very extensive,
generally starting at or after birth during childhood, there may be as
sociated menial retarcation (MR). This is seen in 15% of all epilep
sies. Thus both epiiepsy and mental backwardness are due to some
other common cause and it is seldom epiiepsy by itself which leads
to mental dulling. Excessive doses oi drugs and too many restric
tions can cause mental and emotional dulling and these should
be avoided. Likewise unrecognized small attacks, especially ab
sence or complex partial seizures, can be mistaken for mental dull
ness.

Epilepsy is thus a symptom like headache, stomachache or
fever.

2.4

2

To repeat epilepsy is just a symptom, like fever and associated with
an electrical disturbance in the brain. There are different types of
fever and from different causes - e.g., malaria, pneumonia, typhoid,

EPILEPSY : MEDICAL 8 SOCIAL ASPECTS

tuberculosis, etc; so also in epilepsy. Epilepsy consists of recurrent
episodic phenomena known as seizures. These are of different
types and for any one patient they are stereotyped - i.e. they have a
constancy of pattern, which repeats itself in the seizures and this is
of great practical significance with respect to the choice of orug
treatment.
How to recognize the seizure types or patterns ? This is where we
need help, help from the family, friend, teacher, colleague, etc. Cne
cannot diagnose epilepsy much less its type, by examining the
patient even for hours at a stretch. It is seldom that a doctor has an
opportunity to witness an attack and in between attacks most
patients are absolutely normal. Hence, the need for an accurate
history, description of an attack and if possible, an actual imitation
or demonstration of an attack as accurately as possible.
Broadly speaking epilepsy can be divided into 2 groups - focal or
partial and generalized. In partial seizures, the electrical distur
bance arises from the outer aspect of the brain known as the
cerebral cortex. This disturbance is strictly localized, limited to a
small area of the brain, on the outer surface. Partial seizures are
subdivided into simple and complex partial seizures, depending on
whether consciousness or alertness is retained (simple partial
seizures -°SPS) or disturbed (complex partial seizures - CPS).

2.5

In SP-a the patient is fully alert. He knows what is happening or
what he is experiencing. An onlooker may not be able to make out
an SPS unless the patient were to tell him. There is one exception to
this rule - the so called partial or focal motor seizures. Here both the
patient and the onlooker know about it and the patient is fully alert.
The angle of the mouth can get pulled to one side with rhythmic
twitchings of that corner of the mouth, eye lids, thumb, or other
fingers or toes - all on the same side. The head and eyes may also
jerk to the same side. The patient is fully alert.
Other types of SPS are only experiential phenomena, obvious to the
patient only and not to the onlooker. He may feel repetitive numb
ness or tingling on one side of the face, fingers or toes. He may find
that objects tend to appear bigger or smaller or come forwards or
recede backwards. External sounds may appear lound or faint. Or
3

EPILEPSY : MEDICAL & SOCIAL ASPECTS

he may have a funny smell - smell of rotten vegetables or fish when
no such thing is nearby. Or it may be a pleasant smell. There may
be peculiar sensations of taste - bitter or sweet with nothing in the
mouth to provoke it. A common manifestation is a funny, churning
feeling in the pit of the stomach and an ascending sensation like a
ball of gas coming up from the stomach. During these the patient
is fully alert and is puzzled, if not disturbed, by these strange ex
periences. By and large SPS phenomena last for few seconds or 2
or 3 minutes only. Any consistent symptom which warns a patient
that he is going to get a big attack within the next few minutes, can
be taken as an SPS. SPS alone occurs in about 3% and SPS +
generalized tonic clonic seizures (GTCS) in 17% of all epilepsies.

2.6

When the limited electrical disturbance has a limited speed to the
same or opposite side of the brain, consciousness or alertness is impared, but not totally lost. This resuls in the phenomenon or seizure
type known as complex partial seizures (CPS). Here the subject is
not fully alert. He may not be fully aware of the content of an attack,
but an onlooker is. There is an initial vacant, unblinking stare, then
the eyes move hither and thither in a puzzling manner. This is often
associated with what is known as automatism or automatic be
haviour. The patient may champ or chew his lips or mouth, make
swallowing movements or make purposeless coordinated move
ments of the hands and / or legs - e.g., repetitive tapping, rubbing,
moving the legs on the ground to and fro and so on. In fact one of
my patients removed her saree during an attack in a church and she
was totally unaware of it. Generally, there is no loss of posture or
fall; no injury or tongue bite. The limbs move but are not stiff nor do
they shake rhythmically. If you talk to the patient during this attack,
either he won’t respond at all or at best, it is a delayed and only a
partial or fragmentary response. These episodes last from a few
seconds to 2 or 3 minutes and in the latter followed by sleep, tired
ness, headache, etc., but seldom severe. The patient has no or only
a fragmentary recollection of what happened during an episode.
CPS can arise on its own or may follow a SPS. Both SPS and CPS
can be followed by a secondary generalized tonic clonic seizures
(GTCS) - the so called major epilepsy but of the secondary type. In
these cases the electrical discharge spreads rapidly to all over the

4

EPILEPSY : MEDICAL & SOCIAL ASPECTS

brain with resultant total unconsciousness, fall, stiffness, convul
sions, froth, tongue bite, passage of urine and/or motion, followed by
severe headache, bodyache, tiredness, etc. Thus focal or partial
seizures can either remain purely focal, partial or restricted OR, as is
more common, result in secondary generalization. CPS alone is
seen in 11% and CPS + GTCS in 26% of all epilepsies. Thus 37% of
all epilepsies are CPS with or without GTCS. This is the commonest
of all seizure types and difficult to control fully. Secondary GTCS
(SPS + GTCS and CPS + GTCS) is more common 43% than
primary GTCS - 28%. It is important to recognize the partial seizure
component in these patients, failing which if the GTCS has ceased
the drugs may be stopped without realizing that partial seizures con
tinue leading to a high risk of relapse. SPS and CPS with or without
secondary GTCS respond best to phenytoin (PHT) or car
bamazepine (CBZ) and perhaps less to phenobarbitone (PB). These
should be given preferably as monotherapy (single drug) and not in
combination.

In primary generalized seizures, the electrical disturbance starts
from the depths of the brain and spreads very quickly to cover the
entire brain. Hence there is no warning. There are 3 subtypes primary generalised tonic-clonic seizures (or major epilepsy), ab
sence seizures and myoclonic seizures. There are also difficult and
rarer types - so called astatic or atonic seizures and atypical ab
sence seizures..
2.7

Primary generalized tonic clonic seizure (GTCS) is the same in its ex
pression as secondary GTCS, except that there is no preceding SPS
or CPS. There is no warning. The first symptom is loss of con
sciousness and loss of posture which is gradual taking seconds and
never sudden. There is first a shrill cry - common, but not constant.
The limbs become stiff - so called tonic phase and they rise slowly.
Repetitive rhythmic, twitches or convulsions - clonic phase - follow
with the eyes rolled up and froth coming out. They have a sequence
or a pattern. The limbs on the two sides have a synchronous rhyth
mic and in-phase jerky move ments - ie, the movement on one side
is the mirror image of the other. These last about 1 - 2 or at best 3
minutes and seldom beyond. Time is a relative phenomenon. To
the worried relatives it may appear very prolonged. Every minute
5

EPILEPSY : MEDICAL & SOCIAL ASPECTS

consists of 60 seconds. Towards the end of the seizure, the rhyth
mic jerks - clonic phase - subside slowly and the patient breathes
heavily and noisily gurgling as it were, because of the saliva in the
mouth. After the seizure the patient goes to sleep for few minutes or
hours and wakes up with a whacking headache, bodyache, tired
ness, etc. Primary generalized tonic clonic seizure (GTCS) is less
common than secondarily GTCS (28% as against 43%) - a point of
importance when we try to reduce or withdraw antiepileptic drugs.
This highlights the necessity for specific enquiry for partial seizures SPS from the patient and CPS from the relatives. Primary GTCS
responds best to PHT, PB, CBZ or Sodium Valproate (SV).

2.8

6

Another type of primary generalized epilepsy is what is known as ab
sence seizures, (old term petit mal). This generally starts in school
going children. There is no warning. The duration is brief, measured
in seconds - 5, 10, occasionally 15 and exceptionally beyond. The
central theme of the attack is unconsciousness, seldom associated
with a fall. The child then does not see, hear, or feel, nor can he
talk. The eyes look dull and vacant. All ongoing activities come to a
stop or freeze as it were. Immediately after an attack the child is
back to normal, resuming whatever he was doing. He was uncon
scious - absent from the world, temporarily, during those five
seconds. There are often accompaniments to this unconsciousness
- complex absence seizures - eg., eyelid flutter, stiffness or droop
ing of neck on chest, stiffness of limbs or mild twitchings of fingers,
lip smacking, swallowing or even automatism. In that respect ab
sence may mimic CPS, but unlike in the latter the patient becomes
normal and resumes whatever he was doing before immediately
after an attack. Abrupt onset and an equally abrupt termination is
the rule. Moreover absence attacks tend to occur daily and several
times a day - even 30 - 50 per day, a very rare occurence in CPS.
Absence attacks are often missed and the children are labeled
as absent minded or backward at school. Because of repeated
periods of unconsciousness, the attention span of the child is inter
fered with and naturally he cannot take in what the teacher says.
Absence seizures must really be demonstrated to and discussed
repeatedly with school teachers and parents for more cases to come
to light. It is very common for brief CPS to be misdiagnosed as ab
sence seizures. The latter respond very well to SV.

EPILEPSY : MEDICAL & SOCIAL ASPECTS

2.9

A third type of primary generalized epilepsy is known as myoclonic
seizures. Myo means muscle and clonus is movement. This can in
volve a limb or part of a limb or, as is far more common, both upper
limbs or lower limbs or even the neck or trunk. It is a single brief
momentary jerk which may be mild or explosive, something like a
startle reaction. It is all over in a flash. Sometimes in infants they are
spasms lasting 2 or 3 seconds rather then jerks. Bodily jerks are
very common during sleep or as one goes to sleep and are then
a normal phenomenon. They do not connote epilepsy and should
not be treated as such. Hence, myoclonic jerks occuring while
awake are the things to worry about. Objects may be dropped - a
coffee cup, tooth brush, or a new born child in the case of a young
mother. Consciousness is probably retained. If this involves the
trunk or lower limbs, the child will fall down and there may be scars
from injury on his forehead or knee-caps. These occur repetitively
and may go up to even 50 - 100 per day. Myoclonic epilepsy is
more frequent in children and generally associated with tell-tale
signs of brain damage like mental retardation and / or extreme rest
lessness. They are difficult to abolish totally. The best drug(s) for
myoclonic epilepsy is SV with or without clonzepam.

2.10

To sum up there are several seizure types; learn to recognise
them, describe (or imitate) them accurately. Maintain a diary of
the daily attacks - the time, type and duration. Share this vital in
formation with your doctor. Please help him to help you.

3.

Epileptic Syndromes

A collection of symptoms constitute a syndrome and these have
been described recently in epilepsy as well. It is important to recog
nize them since the age group involved, seizure type, associated
brain damage, type of drug required, response to treatment and
long-term outlook vary from one to the other.
3.1

West Syndrome
The age at onset is 3 months to 1 year. The seizure type is a
myoclonic spasm rather than a jerk, occuring soon after waking up
and several times - even hundreds - a day. The neck bends for
wards, eyes roll up, the arms bend upwards and inwards at the
7

EPILEPSY : MEDICAL & SOCIAL ASPECTS

shoulder and the legs bend at the hips. Associated developmental
delay is very common but often missed in the early stages. Treat
ment with ACTH or steroids early in the course of the illness is the
only hope, failing which the child remains mentally retarded
throughout its life. This accounts for 1 % of all epilepsies.
3.2.

Lennox- Gastaut Syndrome

The age at onset is 1 year to 7 or 8 years. Associated mental retar
dation and overactivity is almost always present and indicate brain
damage. The seizure type(s) consist of (i) myoclonic jerks, (ii) atypi
cal absence - stiffness of limbs, with eyelids elevated and non
responsiveness for 15 or 20 seconds, (iii) astatic seizures - sudden
loss of tone with the result the head may sag at the neck, sudden
slumping of trunk or fall lasting hardly a second; and (iv) GTCS,
especially at night. Because of myoclonic jerks or astatic seizures
the children fall down frequently with injury and resultant scars on
forehead and / or knee-caps. LG Syndrome is an extremely difficult
condition to treat, full control of all seizure types occuring hardly in
10% of subjects. The best drug is sodium valproate (SV) with or
without clonazepam or carbamazepine. Mothers of these patients
deserve to be worshipped for their patience and forbearance. LG
syndrome has been seen by us in 2.4% of all epilepsies.
3.3.

Benign Rolandic Epilepsy

Occuring in 1.9% of all epilepsies, the age at onset is 3 - 5 years.
The seizure type consists of SPS - focal motor or focal sensory in
volving sometimes both sides of the face or tongue. These occur
especially during sleep waking up the child, who may just point to
his mouth or tongue indicating his inability to talk. Rare GTCS
occur, again mostly during sleep. There is no associated mental
retardation or neurological handicap. The outlook is excellent, the
seizures showing a spontaneous tendency to clear up by the time
the child reaches puberty - ie. around 12-14 years. PHT or CBZ as
monotherapy is useful.
3.4.

Childhood Absence Epilepsy

Accounting for 2.5% of all epilepsies, the age at onset is 4 -10 years.
The seizure type consists or typical complex absence attacks occure

EPILEPSY : MEDICAL & SOCIAL ASPECTS

ing generally soon after waking up and may be several times daily.
Associated GTCS may occur, but is rare. There is no brain damage.
Response to sodium valproate as a single drug is excellent, full con
trol being met with in 90 - 95% of patients.

3.5.

Juvenile Absence Epilepsy

This is the same as childhood absence epilepsy, except that the age
at onset is around 12-16 years and it accounts for 1% of all epilep
sies. The absence seizures are much less frequent - once or twice a
week and associated GTCS more common. There is no brain
damage and response to SV monotherapy excellent.
3.6.

Juvenile Myoclonic Epilepsy (JME)

This accounted for 5.2% of all epilepsies in our experience. It is also
known as Impulsive petit mal or Benign Myoclonic Epilepsy of
childhood and adolescence. This was described nearly 40 years
ago in German literature by Prof. Janz. But the English speaking
fraternity have learnt to recognize it only recently. This is eminently
treatable. The patient’s intelligence is normal and there is no brain
damage or neurological handicap. The jerks are more common
soon after waking up. Tooth brush or coffee cup may fall down. The
jerks occur usually in clusters of 4 or 5, even once or twice a week.
One day the jerks increase to 15 or 20 over a period of half - 2 hours
and these lead to a GTCS. Unless specificallyy asked for, the story
of the jerks do not come out.
Many think it is a normal
phenomenon. "Oh, I thought everybody got it I" We make it a prac
tice to ask for a history of jerks in all patients with epilepsy. Both the
jerks and the tonic clonic seizures can be completely abolished in 75
- 80% of these patients with sodium valproate. Treatment should be
continued beyond the usual 5 years because relapses are common occuring in nearly 70% of patients. Attacks tend to be precipitated
by lack of and/or disturbed sleep as during an overnight bus journey
which, therefore is better avoided.
4.

INVESTIGATIONS IN EPILEPSY

4.1.

Certain minimum number of tests are required in every patient with
epilepsy. A detailed examination is necessary not for a diagnosis of
epilepsy, but to try and find out whether there is gross brain disease,
9

EPILEPSY : MEDICAL & SOCIAL ASPECTS

for eg. tumour. Depending on several factors, certain blood tests
and the recently introduced CT or MRI scan of the brain (which show
the underlying brain - not bones only as in x-rays - taken in the form
of sections at different levels) may be necessary to determine the
cause.

4.2

Epilepsy has to be diagnosed primarily from an accurate description
of the attack. Recording the electrical activity of the brain known
as EEG (just like ECG for the heart) is the only objective way avail
able for a diagnosis of epilepsy and its type. Unfortunately in the
tropics, if a single EEG is taken, it is likely to give positive confirma
tion for epilepsy in only 30% of all cases, though in certain types like
absence and myoclonic epilepsy this may go up to even 80%, if not
more.

More the number of EEGs, greater the chances of getting a confir
mation, which in some instances may help in determining the type of
epilepsy and the type of drug required.

4.3

It should be emphasized time and again that a normal EEG does
not mean the patient is not having epilepsy. Like all tests, EEG is
part of a total picture and must be interpreted along with all other
available data.

5.

DRUG TREATMENT

5.1

Not infrequently individuals with epileptic attacks are prescribed an
tiepileptic drugs for a few days only. This is of absolutely no use
and in fact can be dangerous. Epilepsy cannot be controlled by
giving drugs for short periods unlike in common cold, cough or
fever. Drug treatment has to be a prolonged affair not for days or
weeks but months, or years.
The attacks are due to an increased excitability of groups of nerve
cells. Most of the drugs used in this disease do not act on the ab
normal nerve cell itself. They only prevent the abnormality from
spreading, hence the need for prolonged drug treatment. During
this period when the abnormality is prevented from spreading, the
abnormal cells tend to become quiet and it is this which takes a very
long time. Unfortunately, the type of drugs and the dosage vary
considerably from patient to patient and thus it may take several

io

EPILEPSY : MEDICAL & SOCIAL ASPECTS

weeks or months before complete control is achieved in a
patient.

5.2

Many people are afraid that these drugs make the patient dull or lose
his memory. Time and again it has been shown that provided a
proper dosage is given, such is not the case. The effects of uncon
trolled seizures are far more serious than the so called side effects of
drugs. In the control of attacks, drugs alone are not the only answer.
The attitude of the patient, the family and society with special refer
ence to ridicule, taboos and unnecessary restrictions are far more
important. God can only help those who are willing to help themsel
ves.

6.0

ANTIEPILEPIC DRUGS (AEDs)

6.1

There are several drugs available, but none of them are of benefit in
all types of epilepsy. The choice of the drug depends on the seizure
type and /'or syndrome which in turn means an accurate diagnosis.

6.2

In olden days the practice was to give the antiepileptic drugs in
gradually increasing dosage till the desired response (control of at
tacks) was obtained OR undesirable side effects made their ap
pearance. However, in the last 20 years considerable knowledge
has accumulated on the rate of absorption of the drugs from the
stomach and intestines, their distribution in various parts of the body
including the brain and the rate of their elimination. Accurate
methods are available in Western countries and in few places in
India, for determining the blood levels of antiepileptic drugs.

It is based on this knowledge and studies on several patients that the
so called effective or therapeutic levels in the blood of anticonvulsant
drugs have been determined. Likewise knowledge has also ac
cumulated on the duration of action of a single dose of these drugs
which varies from one to the other.

6.3

Though absorption of a drug from the stomach and/or intestine may
be rapid it takes time for effective levels to be built up in the blood
from which the drug has to build up its own steady level in the brain
which is the ultimate site of action. When drug treatment is by
mouth, effective blood levels could be achieved in very many cases
over a period not less than 3 - 4 days and effective levels in the brain

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COMMUNITY health CELL11

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EPILEPSY : MEDICAL & SOCIAL ASPECTS

are reached over a period of 2 - 4 weeks. Hence addition of an
extra dose by mouth after one seizure is going to be of no use.
Likewise when drug treatment is started one must give sufficient
time for steady levels to build up in the brain which may take
even 2 or 4 weeks. Failure to understand this leads to frequent
change of drugs or doctors or both, by which time more attacks
may occur.

6.4

Table 1 gives a list of currently available antiepileptic drugs with
some of the brand names in the market. The list of brand names is
by no means complete. However, it is always better, as far as pos
sible to stick to one brand. Change over to another brand from an
equally reputable firm can be resorted to only if the previous one is
not available in the market. It is always a sound practice in medicine
to opt for quality rather than go by cost factor alone.
TABLE 1

Sl.No.

Drugs

Some brand names
in alphabetical order

1.

Phenobarbitone

Emgard; Gardenal; Luminal; Phenobarbitone

2.

Phenytoin

Dilantin;Epsolin;Eptoin;M-toin

3.

Primidone

Mysoline

4.

Carbamazepine

Carbatol; Carmaz; Mazetol; Tegretol

5.

Ethosuximide

Zarontin

6.

Nitrazepam

Hypnotex; Nitravert; Sedamon

7.

Clonazepam

Clonopin; Rivotril

8.

Sodium Valproate

Epilex;Epival;Valparin

6.5

12

Most anticonvulsant drugs, eg: phenobarbitone, phenytoin,
primidone and carbamazepine make the liver cells work very fast.
On the other hand ethosuximide, nitrazepam, clonazepam, and lastly
sodium valproate do not have this action. The liver by working very
fast causes a rapid elimination of other drugs including other an
tiepileptic drugs with the result that effective blood levels in respect

EPILEPSY : MEDICAL & SOCIAL ASPECTS

of dosage given by mouth fall short of what they ought to be. Oral
contraceptives, for example, get eliminated fast and become ineffec
tive and a lady on such of those antiepileptic drugs which make the
liver cells work very fast has a high risk of pregnancy in spite of
taking oral contraceptive drugs. This type of drug interaction result
ing in reduced effectiveness is giving rise to treatment of epilepsy as
far as possible with one drug at a time, rather than two or three as
used to be done in the past - in other words monotherapy rather
than polytherapy. Ultimately what we want is effective concentra
tion in the brain and this is unlikely to be achieved if more than one
drug is given. With two or more drugs which make the liver cells
work fast, it is as good as the drugs fighting amongst themselves in
the blood and not reaching the brain in adequate amounts. How
ever, as pointed out by Porter, monotherapy is like motherhood; it is
not for everyone. In 10 - 15% of patients with epilepsy, if adequate
trial with monotherapy has failed, one may have to resort to
polytherapy, but seldom with more than 2 or at best 3 drugs.
Response to this polytherapy is often poor, but a lucky few may get
away with it and hence it is worth a trial.
6.6

Phenobarbitone (PB) available as 30, 60 and 100 mg. tablets, has
been one of the earliest antiepileptic drugs. It is of benefit in primary
and secondary GTCS and possibly certain types of partial seizures.
Once taken, the blood levels are maintained well beyond 24
hours even when the drug is taken once a day. There is no point
in giving this drug 2 or 3 times daily. This is totally unnecessary,
cumbersome and often leads to missing a dose. Though generally
free from side effects it can certainly cause learning difficulties, par
ticularly in children, who, if already brain damaged, can become
more restless. Moreover in high doses patients feel dull and drowsy
and hence it is generally not advisable to give more than 45 - 60 mg
for a child and 90 - 120 mg for an adult. The usual dose is 30 mg for
a child and 60 mg for an adult. The cost of PB per day works out
about 10-20 paise.

6.7

Phenytoin (PHT) This is available as 50 mg and 100 mg. tablets,
capsules or syrup. It is generally given in primary and secondary
GTCS and partial seizures. As in the case of phenobarbitone the
blood levels are maintained beyond 24 hours and it is enough if the
13

EPILEPSY : MEDICAL & SOCIAL ASPECTS

whole dose is taken once or at best twice in 24 hours. This drug
is excreted through saliva and can cause swelling of the gum mar
gins. Unusually this can also cause excessive growth of hair on the
face and limbs - not acceptable in women. As mentioned earlier,
phenytoin like phenobarbitons is a drug which makes the liver work
faster than normal and thus causes a rapid elimination of any other
drug given concurrently. One peculiari ty about phenytoin is the fact
that as the daily dose is slowly increased, at a particular stage which
varies from one individual to another, the blood levels shoot up
beyond the expected range resulting in overdosage and toxic
symptoms. Overdosage produces instability while walking (like a
drunken person), double vision or drowsiness. Long term side ef
fects, some of them serious are known to occur but are extremely
rare and include glandular enlargement, liver damage and softening
of bones. The usual daily dose for a child is 100 - 200 mg and for an
adult 300 - 400 mg. The daily cost of treatment with PHT cofnes ap
proximately to 20 - 30 paise.

6.8

Primidone (PHT) is available as 250mg. tablets. This is a powerful
antiepileptic drug used in primary and secondary GTCS and partial
seizures. Blood levels are maintained for only 4 to 6 hours and
hence the drug has to be given 3 or 4 times a day which is a
great disadvantage. Moreover it makes patients extremely sleepy or
giddy and increasing or reducing the dosage must be done very
very slowly - over a period of weeks. The use of this drug has come
down considerably.

6.9

Carbamazepine (CBZ) available in the form of 100 mg, 200 mg. and
400 mg.tablets, is a very powerful antiepilept c drug and is perhaps
- the drug of choice in CPS. It is also used in GTCS as a second line
drug. Blood levels after a single dose by mouth are maintained for
10-12 hours and hence this drug must be taken atleast twice a
day. Generally it is remarkably free from minor or major side ef
fects, though liver damage can occur exceptional ly. The usual daily
dose for a child is 400 mg and for an adult 800 - 1200 mg. CBZ is a
very expensive drug, the cost per day coming to about Rs.7/-.

6.10

14

Ethosuximide (ETHO) is available as a syrup and contains 250 mg.
per teaspoonful. Effective blood levels are maintained beyond 24
hours and a single daily dose will suffice, but a high single dose

EPILEPSY : MEDICAL & SOCIAL ASPECTS

can cause vomiting and hence two doses in 24 hours may be re
quired. It is useful in absence seizures but can make associated
GTCS worse. Its use has come down considerably with the intro
duction of sodium valproate.
6.11

Nitrazepam (NZP) marketed in 5 mg, 10 mg tablets or capsules, is
given mainly in myoclonic epilepsy. Unfortunately, after an initial
period of cessation of attacks it tends to lose its potency and epilep
tic seizures te,nd to recur. It also has a disadvantage that it can
make any associated GTCS worse. The most common side effect is
drowsiness. Blood levels are maintained beyond 24 hours and once
daily dose is enough.

6.12

Clonazepam (CLZ) marketed in 0.5 mg, 1.0 mg. and 2.0 mg tablets
is not yet available in India. This is said to be helpful in certain types
of myoclonic epilepsy and possibly in some cases of absence at
tacks. It is chemically related to nitrazepam mentioned above and
likewise can make any associated GTCS worse. Side effects include
drowsiness especially in high doses. Blood levels are maintained
beyond 24 hours and once daily dose is enough.

6.13

Sodium Valproate (SV) is a remarkable anticonvulsant drug which
has revolutionised the management of absence seizures and to
lesser extent myoclonic epilepsy. It also has a great advantage in
that it does not make any associated GTCS worse (unlike etho
suximide, nitrazepam or clonazepam). Indeed it is also useful to
control primary GTCS.
It is marketed as 200 mg tablets. Blood levels are maintained for
about 10-12 hours and it is generally given in two doses in 24
hours. This drug is an irritant of the stomach and hence is better
given immediately after a meal. Though extremnely rare (1 in 2000
or 3000) serious and potentially fatal side effects can occur, espe
cially in children with brain damage and that too usually in the first
six months. As a warning signal the patient may have persistent
vomiting or is acutely ill or has severe abdominal pain or develops
jaundice. If any of these complications were to arise the doctor must
be contacted immediately without delay and possibly he may advise
stoppage of the drug. If this simple precaution is not taken the result
can be fatal. The daily dose of SV works out to 400 - 600 mg for a
15

EPILEPSY : MEDICAL & SOCIAL ASPECTS

child and 800 - 1200 mg for an adult, though exceptionally much
higher doses are given in children. SV is not an inexpensive drug.
The cost of daily treatment works out to about Rs.3/-.
6.14

Allergic reactions though rare can occur with any drug and cannot
be predicted before hand. If present, the drug must be with drawn.

6.15

While side and/or toxic effects do occur, one should not be blind to
the fact that no drug in the world can be free from side effects. In
fact any drug without side effects can be questioned about its ef
ficacy. It is for the doctor to assess the beneficial effects of any drug
against the frequency and/or severity of the side effects which must
be discussed frankly with the patient. If any of the side effects men
tioned above were to occur, do not stop the drugs but report to your
doctor immediately. Do not stop the drugs on your own because of
side effects. Inform the doctor and he will help you. Have faith in
him.

7.

GENERAL PRINCIPLES OF DRUG TREATMENT

7.1

The trend now-a-days, is to give a single anticonvulsant drug at a
time and not multiple drugs. Multiple drugs do not, in general,
produce any better response and only give rise to undesirable side
effects. The dosage required varies from one patient to another and
it takes considerable time, sometimes even months, before ef
fective dose in a patient can be achieved. Far too often, anxious
parents change their doctors each time the patient gets another at
tack or has a side effect: this only results in more expense and
frustration. Stick to one doctor and help him to help you.

7.2

It is the duty of every patient to maintain a daily chart of the at
tacks with the date, time, the type - SPS, CPS, GTCS, MJ, absence
- and the duration of the attacks. The doctor must be contacted at
frequent intervals (to be determined by mutual understanding) to ar
rive at the correct dosage for the patient without serious side effects.
If one drug is adequate dosage is not effective, the doctor will slowly
replace it with another, and if that is also ineffective he will try a third
drug. Polytherapy will be only as a last resort. All these take time.
The doctor will naturally try simple drugs first before going to more
expensive ones. Remember all cases need not and cannot go to the

16

EPILEPSY : MEDICAL & SOCIAL ASPECTS

Supreme Court straight away. Describe fully the type of attacks
which helps the doctor to choose the correct drug.

Even if a patient is free from attacks of fits the doctor must be
kept informed about the patient’s condition. Unfortunately, most
people neglect this very important aspect, which is, indeed a
tragedy. Remember he takes the responsibility for long term ad
ministration of drugs.

7.3

It must be noted that it is not very difficult to control epilepsy. Injec
tions of gardenal four times a day would stop all attacks but the
patient will be sleeping all the time. This is not what one wants.

7.4

The habit of prescribing drugs which have combined two or more
anticonvulsant preparations in one tablet must be condemned in no
uncertain manner. Such drug combinations are not more effective
and because of interaction of their components they may indeed be
less effective. Moreover side effects increase and of course they are
more expensive. Unnecessary waste of money with less response
and more side effects !

7.5

Whatever the drugs, they should be taken at a fixed time, at best
one or one and a half hours either way. In general they are best
taken immediately after breakfast and/or dinner in the night. Have
the tablets next to the plate so that at the end of the meal the
patient will take these tablets with a gulp of water in the
presence of others. This is much better than trying to take the
tablets before going to sleep. One may feel lazy to get up from bed
or forget all about it - human nature. Another method is to have a
transparent box with the day’s dosage packed in. Anyone looking at
the box will know whether the tablets have been taken or not.

7.6

A common mistake is to stop the drug whenever the patient has
fever or becomes pregnant. This is precisely the time when the
drugs should not be stopped. One does not stop breathing because
of some other illness, nor does a lady who is pregnant or is nursing a
child. These drugs are like breathing. They should not be stopped
on any account. If a patient vomits the drug within an hour or so of
taking it an extra dose must be given, since the drug has mostly
been thrown out. Likewise if a patient is having diarrhoea, absorp
tion of the drug will be interfered with and it is as good as not taking
17

EPILEPSY : MEDICAL & SOCIAL ASPECTS

the drug. Please contact your doctor immediately. The aim must be
to maintain adequate levels in the blood and thus in the brain. The
site of action of these drugs is in the brain and not in the stomach or
in the bottle I

7.7

Many parents become anxious when a lady with epilepsy becomes
pregnant. The question in their minds is whether antiepileptic drugs
can affect the developing child in the womb in any way. In general it
has been worked out that congenital abnormalities in children can
occur in about 1 in 100 of all pregnancies. When a pregnant mother
takes antiepileptic
drugs
(AEDs),
particularly
phenytoin,
phenobrbitone or sodium valproate, especially in the first 6-8
weeks of pregnancy the risk of congenital malforma tion in the new
born child becomnes roughly double - ie - 2 in 100 or 1 in 50.
Generally the type of abnormality is splitting of the upper lip or the
roof of the mouth (known as hare-lip or cleft palate). These are diag
nosed very easily and are amenable to surgical correction. On the
other hand, by stopping antiepi leptic drugs the risk of epilepsy is in
creased and epileptic attacks during pregnancy can damage the un
born child much more than drugs. It can even result in abortion or
miscarriage. Hence the risk from epilepsy is much more compared
to that from drugs. Sodium valproate can result in serious defects in
the brain or spinal cord of the developing child. These are seen
mainly with polytherapy. If a lady on sodium valproate becomes
pregnant, there is no point in stopping the drug once pregnancy is
confirmed. Whatever damage the drug can cause to the fetus is al
ready done. Repeated ultrasound examinations and estimation of
alpha feto-proteins in the fluid surrounding the fetus will unearth
cases with congenital defects of the brain / spinal cord referred to
earlier. If positive, therapeutic abortion has to be advised. If nega
tive, pregnancy is to be continued.

7.8

Another common doubt is whether a baby breast fed by a mother on
these drugs, can be affected. Studies have shown that while these
drugs do occur in breast milk it is so in extremely small amounts and
hardly pose a danger to the child. Drowsiness may occur in infants
breast-fed by a mother who is receiving more than 90 mg. of
phenobarbitone per day.

18

EPILEPSY : MEDICAL & SOCIAL ASPECTS

7.9

Under no circumstances should antiepileptic drugs be stopped
suddenly. Any change from one drug to another must be done
slowly - over a period of weeks or months. Sudden stoppage of
these drugs, even if it be for a day, causes an abrupt fall in the blood
and brain levels of the drug, whose controlling influence is no longer
present. This leads to continuous epileptic attacks - a condition
called status epilepticus which has a very high mortality and often
leaves behind severe brain damage in those that survive, especially
in children. Sodium Valproate, however, can be stopped suddenly if
potentially life-threatening symptoms mentioned earlier, were to
occur.

7.10

The traditional belief that epilepsy is a condition with frequent recur
rences requiring AEDs for several years is based on chronic patients
who attend hospitals or specialist clinics and is no longer valid.
Studies based on general population attending a family doctor give a
much more rosy picture. There are several patients with epilepsy
who need AEDs only for 2 - 3 years with the correct drug as
monotherapy taken regularly without even a single missed dose. If
epilepsy is treated early and properly, the cure rate is quite high.
If the life time total of GTCS exceeds 20 or 30, the chances of a full
control become less.

7.11

Drug treatment will have to be continued may be for life - in those
with long standing epilepsy, associated brain damage, as with MR,
CPS, as the seizure type and those with a mixed pattern of attacks
as for eg: GTCS and absence, or GTCS and myoclonic epilepsy. In
such cases two drugs may be required, but not before trying sodium
valproate as the sole medication.

7.12

Very often anticonvulsant drugs go out of stock in the market.
Hence it is always advisable to keep a sufficient stock of these drugs
at home. Get a new prescription atleast once in six months. Strict
regulations are being enforced to prevent sale of drugs without a
valid prescription. Please do not wait until the last minute and
search frantically for the drug. One does not wait to purchase
provisions for the house till the last grain of rice or wheat is over.
The same principle should be followed here as well.

19

EPILEPSY : MEDICAL & SOCIAL ASPECTS

7.13

The drugs which are prescribed for the patient must always be
kept under lock and key. Like all other drugs these also should be
beyond the reach of children. Looking at others taking the drugs,
children have a curious habit of imitating their elders and swallowing
drugs. This can result in serious complications if not death and
hence this note of caution.

7.14

One question frequently asked is why a patient should get an attack
at a particular time, may be inspite of regular drug intake or after a
long fit-free interval. This is an extremely difficult question to answer.
Often it is due to a combination of several factors - a physical illness,
fatigue, lack of sleep, skipped meals, emotional upset, lowering of
blood level of the drug due to may be change in brand name, quality
of the drug, defective absorption from the stomach or interaction
with other drugs used for some other illness or taken regularly for
some other purpose. Why do these factors not combine to produce
attacks more often ? One wishes the answers were known !

8.

FIRST AID DURING A GTCS

8.1

Whenever a patient has an attack, particularly a GTCS it tends to
frighten the relatives, bystanders and other interested persons. Con
vulsions can be dreadful to watch with froth in the mouth, loud
breathing and unconsciousness. It is not sufficiently realised that the
convulsive movements would last only for 2 - 3 minutes namely 120
to 180 seconds. The natural history is such that the convulsions
stop on their own though patients may be unconscious for minutes
or hours later. This panic has given rise to a plethora of the so-called
first- aid measures.

8.2

One popular belief in South India is that giving an iron piece in the
hands would stop the attacks. In Western India, particularly in
Maharashtra, the belief is to place an old shoe near the patient's
nose. By the time one searches for an iron piece or an old shoe the
convulsions have stopped on their own and unnecessarily the credit
goes to the false belief.

8.3

What is more dangerous, however, is to insert some objects-soft or
hard-between the teeth in an attempt to stop tongue bite. Even if by
chance the tongue gets bitten it will heal beautifully within a few

20

EPILEPSY : MEDICAL & SOCIAL ASPECTS

days. Monstrous attempts at trying to introduce something between
the teeth have resulted in broken teeth. A broken tooth can get into
the lungs and result in immediate death or serious complications.
Likewise attempts to hold the patient tight during the vigorous con
vulsive movements are dangerous. They can result in fracture of the
limbs or dislocation of the joints. A common habit is to pour some
thing down the throat of an unconscious patient thinking that it will
revive him. In an unconscious patient the swallowing reflex is
considerably reduced and any fluid will find its way into the
lungs choking the patient to death. Turning the neck of the patient
to one side to prevent the tongue from falling backwards is another
dangerous myth which can result in fracture or dislocation of the
neck and consequent total paralysis of all the 4 limbs, if not death.

8.4

The best first aid one can give a patient is to leave him severely
alone.
God will look after him. The so called first aid measures can be ex
tremely dangerous and may result in death or serious incapacity to
the patient. The habit of giving an extra dose of the drugs which
the patient is accustomed to, has already been condemned.
Likewise there is no need for the patient to be given any injec tion for
one attack or admitted in a hospital for one attack. He may sleep
for two or three hours, wake up with a headache for which any
simple pain killer would suffice and he would be normal the same
evening or the next morning.

8.5

But if the patient gets recurrent GTCS in quick succession (3 or
above in 24 hours), with or without recovering consciousness in be
tween, or one GTCS lasts not the usual just 2 - 3 minutes but is
prolonged - continuous convulsions beyond 10 minutes by the
watch - this is an emergency. The commonest cause for such
recurrent attacks in a patient who is on drugs is failure to observe
the golden rule - viz. ‘do not miss even a single dose, come what
may’.
This can be handled at home in its early stages and is known as
Home treatment of status epilepticus or cluster attacks. It should
not be used for single isolated seizures, however frightening it
may be. The drug to be used is diazepam solution meant for in-

OBITS'

COMMUNITY HEALTH CELL

326, V Main, I Block
Kotam.ngala
Bangalor4s-560034 /
India

21

EPILEPSY : MEDICAL & SOCIAL ASPECTS

travenous use. Diazepam is available in our country as calmpose or
valium, 2 ml. ampoule containing 10 mg. of the drug ie. 5 mg. per ml.
In children upto 5 years of age, the usual dose is 0.5 mg per
kilogram of body weight. In children aged 6-12 years, the usual
dose is 0.3 mg per kilogram and above 12 years 0.2 mg I kg. The
ampoule is first checked for date of expiry, broken at the neck and
the contents placed into a spoon which is then pourned into the
mouth taking care not to spill it. Adequate levels are reached in the
blood in 2 - 4 minutes, peak levels in 7 minutes and they stay in the
blood for about 7 hours. A second dose may be needed 3-10
hours later. Diazepam by mouth is much more convenient and easy
to administer than by rectum. However it must be resorted to with
considerable caution in an unconscious patient, for whom rectal
diazepam would be preferable. Intramuscular calmpose, the
most commonly resorted to emergency treatment in general
practice is useless because of erratic absorption. It appears to
work because the seizure would have stopped even without it. If this
home treatment fails the patient should be rushed to the nearest
hospital.
9.

RESULTS OF DRUG TREATMENT

9.1

In general, GTCS, primary or secondary is easier to control fully than
partial seizures - 70% - 80% of patients. Full (100%) control - zero
attacks of any type - in SPS is seen in 65% of subjects, but in CPS,
the commonest seizure type, the figure is only 40% all over the
world. If there is an associated mental retardation full control is seen
in hardly 15 - 20%, often due to the associated brain damage, high
frequency of partial seizures, especially CPS, and sometimes be
cause of mixed or atypical seizure patterns as in LG syndrome. In
childhood and juvenile absence epilepsy full control is seen in 90%
and in JME in 75%. In LG syndrome the figure drops to a depress
ingly low 10%. It is, however, heartening to note that more than 50%
reduction in the seizure count can be seen in about half of the
remaining subjects with epilepsy - a modest gain. Uncontrollable or
intractable epilepsy is seen in 15 - 20% of all patients.

9.2

Once full or 100% control of all seizure types has been achieved,
one may consider reducing the drug dosage and stopping it com
pletely after a seizure-free interval of 2 - 5 years. Life time total of

22

EPILEPSY : MEDICAL & SOCIAL ASPECTS

GTCS of less than 20, absence of associated mental retardation or
neurological handicap, seizure type mainly a primary GTCS and
quick control of seizures after starting AED - these are good features
encouraging drug withdrawal after 2 - 3 years. Absence seizures as
in childhood and juvenile absence epilepsy may require a seizurefree interval of 5 years. CPS is difficult to control fully anyway, and in
such an event, drug withdrawal may be contemplated after 5 - 7
years. JME is easy to control, but unfortunately has a very high
relapse rate of 70% even after a seizure-free period of 5 years
and possibly may require treatment for life. The risks of drug
withdrawal are more when there is an associated brain damage as in
MR or neurological handicap, possibly necessitating treatment for
life. This may also be necessary in CPS.

9.3

Drug withdrawal should never be sudden. It should be carried out
very slowly spread out over a period of 6 -18 months.

9.4

The risk of relapse is there in all seizure types and one cannot give a
100% guarantee against a relapse. In general, the risk of relapse is
low, may be 5 - 10% in primary GTCS, childhood and juvenile ab
sence epilepsy; higher - may be 15 - 20% in partial seizures, espe
cially CPS; and very high - 70% in JME. In case of a relapse, the
unfortunate patient has to go back to his AED for a longer period,
may be for life.

10.

INTRACTABLE OR CHRONIC EPILEPSY

10.1

As mentioned earlier, response to treatment is poor in 15 - 20% of all
epilepsies. This is more so in long standing epilepsy (lifetime total of
GTCS more than 20) associated brain damage as in MR, LG
syndrome, etc, multiple seizure patterns and CPS. The epilepsy is
said to have entered the chronic phase. To some extent this can be
prevented by early treatment of seizures with the appropriate AED as
monotherapy to be taken regularly without even a single missed
dose and attention to life-style compliance especially with regard to
adequate sleep.

11.

SURGERY FOR EPILEPSY

11.1

Patients with intractable epilepsy which has failed to respond to ade
quate medical treatment can be considered as potential candidates

.

23

EPILEPSY : MEDICAL & SOCIAL ASPECTS

for surgical treatment. This cannot be resorted to without repeated
and proper pre-operative evaluation and investigations. It is the lat
ter for which facilities do not exist in India today. The patient is
generally admitted to a hospital, and AEDs withdrawn slowly. The
habitual seizures which get precipitated are recorded simultaneously
on a video and an EEG recording of the seizure obtained repeatedly.
Preliminary EEG recordings with special electrodes and in between
seizures are also obtained. CT scan with special views for the tem
poral tobes - (unfortunately this is practically never resorted to in CT
studies of the brain in India I) and MRI scan of the brain are obtained
to detect small tumors, blood vessel abnormalities or areas of
atrophy of the brain with scar - provided they are large, which can
then be removed. If CT and MRI are normal and EEG recording
during a seizure shows consistently an area of the brain from where
the seizure activity originates, it is so identified and removed
provided it is feasible and does not lead to post-operative neurologi
cal / psychological deficit.

11.2

Provided cases are studied intensely preoperatively and chosen with
care, the results of surgery are rewarding. Seizure control or reduc
tion occurs in 60 - 70% of patients and maintained for 5 - 10 years.
The AEDs must be continued for at least 2 - 3 years after surgery
before being tapered off.

11.3

Video - EEG monitoring of the seizures in the pre-operative period
sometimes shows that the so-called intractable or chronic epilepsy is
really due to hysterical and not genuine seizures I Treatment is then
psychological.

12.

CERTAIN SPECIAL SITUATIONS

12.1

Patients with a single or first seizure - though not diagnosed as
having epilepsy, seek medical aid. Generally they are not pre
scribed AEDs, but are kept under observation. As time goes on,
over a period of 6 months to one year, an increasing proportion
develop a second seizure. Whether this can be prevented by start
ing AED is not clear. However, more number of patients opt for AED
therapy even after the first seizure to enable them to drive a vehicle.

12.2

Some subjects get seizures at very rare intervals of time - once an
year or two. Do they require AEDs? Probably not, provided they do

24

EPILEPSY : MEDICAL & SOCIAL ASPECTS

not have any additional seizure phenomena in the form of partial
seizures, absence or myoclonic seizures which should be specifical
ly asked for. This same rule also applies to the previous category seizure 1 or first seizure. If the seizures become more frequent,
AEDs cannot be withheld any longer.
13.

FEBRILE CONVULSIONS IN CHILDREN.

13.1

Children in the age group of 6 months to 6 years, especially 6
months to 2 years, are likely to get convulsions whenever they have
fever, whatever its cause. Unlike in older children and adults, these
convulsive movements may last far beyond the usual 2 or 3 minutes.
Known as febrile convulsions, when they occur frequently and/or are
prolonged, beyond 10 minutes by the clock, there is a 10 - 15% risk
of developing CPS in such instances, 15 or 20 years later. The over
all risk of future epilepsy is still small.

13.2

Whenever such children develop fever keep Crocin syrup ready.
You may have to give it to bring the temperature down and repeat it
every 6 hours. If the fever is high -101 degree or 38.3 degree C (at
the arm pit), take a thin sari or any other cloth, dip it in cold water,
remove the excess water and cover the child from neck downwards.
These measures will bring the temperature down rapidly and can be
used as a first aid measure before the arrival of the family doctor.
Please do not give a dose of gardenal by mouth. It will take days
to reach the brain.

13.3

Do children with febrile seizures require any prolonged drug treat
ment ? The general concensus is no drugs. The risk of subsequent
CPS has been over emphasized in the past a'nd drugs advised. The
only two drugs likely to be effective are phenobar bitone and sodium
valproate. The former can interfere with the learning capacity of the
child and make him restless, while the latter is not free from serious
toxic effects. It is held that febrile seizures are generally innocuous
and need not cause any panic. If the seizures are prolonged or
recurrent, home treat ment for status / cluster attacks referred to ear
lier in 8.5 can be resorted to. Some trials are being conducted on
oral diazepam tablets at the onset of fever for preventing febrile
seizures, but nothing clearcut has emerged as yet.

25

EPILEPSY : MEDICAL & SOCIAL ASPECTS

SOCIAL ASPECTS.
14.

RESTRICTIONS ON A PATIENT.

14.1

These are surprisingly very little. An epileptic patient should not fast
for prolonged periods and must avoio as far as possible going to
bed late so that his normal quota of sleep is not disturbed. Over
night travel in a bus is a very common precipitating factor for an at
tack and must be avoided as far as possible. Other common causes
are reading late in the night for examinations, watching video late in
the night, New Year parties, wedding at home, etc.

15.

EPILEPSY AND SCHOOLING.

15.1

There is an erroneous belief that children with epilepsy should not go
to school or college lest the other children be affected. Epilepsy is
not an infective or a contagious illness. Several teachers prevent
epileptic children from attending classes and the parents are told
that the illness has to be cured first before the child could be per
mitted to continue schooling. This is a fallacious belief and requires
a change in orientation on the part of the teacher. It has been shown
clearly that epilep tic children can continue and do well in studies as
well as other children. To bar schooling for these children is as un
fair as following such a policy for a child with recurrent headache or
stomachache.

16.

EPILEPSY AND WORK.

16.1

Epileptic subjects can take up any desk job or an intellectual oc
cupation like any other person. They can even work in factories. Ex
perience all over the world is that the accident rate of epileptics,
even while working with moving machinery, is mubh less compared
to their non-epileptic counterparts. This is due to several factors firstly, about 40% of patients with epilepsy get a warning signal
seconds or minutes before the attack which enables them to move
away from the machinery. Secondly, of the remainder, nearly 40%
get their attacks only during sleep and are not in danger at the
workspot. It has also been shown that during an attack of fits,
patients very often tend to fall back wards rather than forwards, thus
minimising their getting caught up with the machinery. The com
monest cause of accidents is the human factor of carelessness

26

EPILEPSY : MEDICAL & SOCIAL ASPECTS

which is perhaps manifest to a greater extent in a non-eoileotic than
in an epileptic.

16.2

Lastly, an eoileptic because of difficulty in getting a new job has a
greater motivation to work harder ano many turn out to be a better
worker in the long run.

17.

EPILEPSY AND MARRIAGE.

17.1

Eoileptics can certainly marry like any other oerson. Unfortunately
because of societal artituaes. many carenis aide the information
'rom the prospective partner. But this short-signted policy back-fires
wnen the other people come to know about the drug treatment or
ne illness itself. One cannot fcoi aii people ait the time. Tragedy
ensues :n that the oirl. as often is the case, is sent back to her
parents and a petition filed for divorce. Thus the parents owing to
iheir short-sightedness nave ruined the life of the patient for ever, it
is essential that the prospective in-iaws be told about the illness
and the doctor incharge of th® case has a moral right to discuss
this factor with the other party. It is really heartening that following
such a frank discussion most people accept the alliance and the mar
riage is successful, since neither party feels cheated or guilty.

17.2

According to Indian Law, a person wrih epilepsy cannot marry at
aii and if he (she) gets married, especially without disclosing the
information, :he marriage can resuit in a divorce. Parents and
relatives beware I Your Association is trying to amend this law by ap
pealing to those that matter; but nothing tangible has come out so
far.

18.

EPILEPSY AND SEX

13.1

Epilepsy does not in any way come in the way of a normal sexual
life. Many anxious relatives debar sex thinking that it will weaken the
individual and lead to fits. This is far from the truth, if sex were to be
prohibited after marriage the very purpose of marriage will get
defeated leading to frustration and more attacks.

18.2

Epilepsy may interfere with sex drive in certain individuals more from
psychological inhibitions than from epilepsy itself. It does not inter
fere with the fertility of the individual. Antiepileptic drugs are un
necessarily blamed for infertility in certain situations. This is a myth.
27

EPILEPSY : MEDICAL & SOCIAL ASPECTS

19.

EPILEPSY AND CHILDREN.

19.1

While there are undoubtedly some hereditary influences these are
probably extremely small. What we inherit is not epilepsy itself,
but a tendency to convulse. The hereditary factor in epilepsy is
much less compared to other illness like diabetes, asthma, or
headache of a particular variety. If one parent is an epileptic the
chance of a child developing an attack is around 3 - 4%. If both
parents are epileptics, the risk goes upto around 10 - 12%. Hence it
is always advisable that no epileptic should marry a person related
to him or her. As regards having children an epileptic lady has a per
fect liberty to give birth to a child 9 months after conception - i.e. at
any time.

20.

‘TONICS’ IN EPILEPSY.

20.1

Many anxious relatives erroneously believe that the patient with
epilepsy has "nervous weakness" and want a ’tonic." This is a fallacy
which has been handed down from generation to generation. Most
’tonics" contain vitamins and the so called essential minerals in high
doses and they have become extremely popular because of high
pressure salesmanship. The body needs very small doses of
vitamins and essential minerals which are adequately covered in a
balanced diet. Any extra dose given by mouth is excreted in the
stools; or if given by injection is thrown out in the urine.

They are a sheer waste of money and nothing else. Adequate
nutrious diet is all that is required not only for patients with
epilepsy but for all human beings. Generally the so called tonics
are consumed by people who can afford a good diet and who in
deed take them. In the section of under-privileged and very poor
people, what they need is not tonics but good nutritious diet. So
either way this is totally unnecesary except in very rare instances.

20.2

There are no dietary restrictions for an epileptic patient.
capable of digesting a stone he can have it.

21.

EPILEPSY AND SPORTS.

21.1

Children and adults with epilepsy can certainly participate in active
games and sports as any other individual. A living, retired, Test

28

If he is

EPILEPSY : MEDICAL & SOCIAL ASPECTS

Cricket Captain - Tony Greig was one. Chances of such participa
tion leading to attacks are very remote
21.2

One note of caution about swimming. In general it is better to avoid
swimming for atleast two to three years after the last seizure. Swim
ming alone or in a crowded place where an epileptic patient cannot
be watched every minute is potentially dangerous. If an expert were
by the side of the patient, and if he can observe the patient every
minute, then perhaps there is no harm. Even then the expert swim
mer being human cannot be expected to concentrate on the patient
all the time. Hence it is advisable to avoid swimming for 2 - 3 years.
Common sense would tell us that if a seizure were to occur while in
water and the patient becomes unconscious he will drown to death.
However, if the patient were free from seizure for 2 or 3 years, the
chances of a recurrence are very remote and swimming need not be
prohibited then.

22.

TELEVISION AND EPILEPSY.

22.1

In some patients with epilepsy viewing television in certain situa
tions can bring an attack of epilepsy. This is known as Photosensi
tive epilepsy. This does not occur because one views television but
attacks can be provoked in a small proportion of epileptics probably
due to rapid slipping of the image on the screen. This intermittent
stimulation of the eyes is likely to produce epilepsy, particularly
when the susceptible individuals sit very close to the TV screen.
Hence it is always a good advice that epileptic subjects particularly
children, while watching television observe certain precautions.

22.2

Television must be viewed from a distance of greater than 8 feet.

22.3

The room must be well illuminated with a small table lamp on the TV
set. In other words avoid watching the TV in a totally dark room.

22.4

Patients must avoid approaching the TV set to switch it off or adjust
it. If such an action is absolutely essential, one eye must be
covered with the palm of the hand. If these simple precautions are
observed the risk of getting epilepsy because of viewing television is
considerably reduced.

29

EPILEPSY : MEDICAL & SOCIAL ASPECTS

22.5

It is essential to repeat that viewing of television need not and
should not be banned for epileptic subjects. Please do not take
away a simple pleasure from these patients.

23.

EPILEPSY AND HOT WATER BATH.

23.1

It is true that in certain individuals hot water bath, especial ly on the
head, can provoke an epileptic seizure, often a CPS. This has been
described from Karnataka State for the first time in the world. But it
does not mean that all epileptic patients should deny themselves the
luxury of a hot water bath. Only those who get an attack during a
hot water bath need to be cautioned against it. The temperature of
the water used for bath should not exceed 28 degrees celsius.
Rapid pouring of the water on the head should be avoided.

24.

EPILEPSY AND ALCOHOL/TOBACCO

24.1

The belief that epilepsy and alcohol do not go together is not true.
Recent studies have shown that in general alcohol does not make
epilepsy worse, provided the intake is limited to one or two pegs
twice or thrice a week. This does not mean that one advocates the
use of alcohol in epilepsy. Social intake of alcohol is not harmful,
but addiction should be avoided.
Smoking has no relationship with epilepsy. But it is a definite life
hazard and hence better avoided.

25.

EPILEPSY AND DRIVING.

25.1

According to the regulations existing in our country, an epileptic is
totally barred for life from driving a two wheeler (not a cycle), three
wheeler or a car or any public transport vehicle. This rule is ob
served more in the breach with family members often in tow I

25.2

In Western countries studies have shown that the risk of epilepsy
while driving a car is very small. Hence in general if a patient is free
from attacks for atleast two years, he/she is allowed to possess a
driving licence but not as a professional driver. Some countries
give a driving licence even if the patient continues to take his an
tiepileptic drugs, whereas in some others licence is given only if the
patient is free from attacks after stopping the drugs. Epileptics can
certainly ride a bicycle.

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EPILEPSY : MEDICAL & SOCIAL ASPECTS

25.3

Nowhere in the world is an epileptic permitted to be a proles
sional driver - whether three wheeler, car, bus, lorry, railway engine
or an aircraft, unless the seizure had occured several years earlier.

26.

EPILEPSY AND EMOTIONS.

26.1

Emotional factors have a tremendous role to play in causing the at
tacks to persist inspite of absolutely regular drug treatment. It is
here that the family and society have an important role to play.

26.2

At one end are patients who are pampered and get whatever they
want because of the relatives’ fear that emotional upset would result
in a fit. This is the worst thing to do - to give into fear. Once fear
comes in common sense flies away. Some patients even learn to
fake an attack if they don’t get what they want. Don’t be afraid to
say NO to a person. Treat the patient as you would if he (or she)
did not have epilepsy. Societal responsibility is neither to treat
them as out castes nor pamper them. They are perfectly normal
people except during a seizure and require no more or less attention
than any other individual.

26.3

Far too often, rich or indulgent parents choke completely the social
and emotional contacts of these individuals by keeping them at
home and not allowing them to go out. Their schooling is stopped as
also their music classes, because the patient had a fit in the bus
stand I The patient cannot go out and meet friends or go and see
pictures. They ask - "Is it not a great calamity to the family if she gets
a fit in a public place ?" Thus the patient is virtually made a prisoner,
which she naturally resents. Recriminations, and fights or silent suf
fering build up tension and the attacks continue as merrily as before
inspite of drugs. The patient goes out sometimes to an under
standing relative and the attacks stop completely only to recur on
returning home. The parents place restrictions out of a genuine but
mistaken notion, with disastrous consequences. It is not a crime to
have a fit, just as it is not a crime to suffer from fever, headache,
asthma or stomach ache. Such a short sighted policy denies long
term benefits. To this can be added the jibes and taunts of ‘‘wellmeaning’' relatives, friends, teachers and what not. What then is the
motivation for this unfortunate patient to survive in "crzilised society"
? What they need is not pity or sympathy, but understanding.
31

EPILEPSY : MEDICAL & SOCIAL ASPECTS

They have as much pride as any one else but let us show them un
derstanding and this benefits not only the patient but also society.

27.

SUMMARY & CONCLUSIONS.

27.1

Epilepsy is a symptom of a disease in the brain and can be of
several types. In a vast majority it is not associated with mental retar
dation. It can be due to a simple cause like a scar in the brain or
rarely part of a disease like brain tumour.

27.2

A diagnosis can be made only from a detailed description of the at
tack. Detailed examination and investigations help to determine the
cause, as far as possible.

27.3

Epilepsy can be controlled in most patients by proper administra tion
of the correct drug. The present trend is to use a single rather than
multiple drugs.

27.4

The prescribed drugs must be taken at the correct time and with out
even a single missed dose, come what may.

27.5

Maintain an accurate chart of the attacks and keep in touch with
your doctor at frequent intervals, even if the patient is free from at
tacks. This help on your part is of extreme value to the doctor in
determining the drug and its dosage to control the attacks and help
you in return.

27.6

The attacks can be controlled by continuous, regular drug intake for
months or years - not days or weeks.

27.7

Epileptics can go to school, college, work, marry and have chil dren.
They are quite capable of leading a perfectly normal life. Help them
towards this goal by treating them like any other person. Do not be
over-protective and restrict their life nor be too lenient and allow
them to get away with whatever they like.

27.8

Spread this message amongst your friends and relatives. This will
be a small step towards strides to remove misconceptions, supersti
tions and fear about this extremely common illness.

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