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Anti-epileptic drugs: how they treat
seizures and their unwanted side-effects
AEDs for treating these different seizures or syndromes:
Approximately 65-75% of people with tuberous sclerosis
The specialist doctors (called paediatric or adult
(TS) will have epilepsy. Most epilepsy starts in children
neurologists) who treat people with TS and epilepsy will
and there are many different types of epilepsy (see:
prescribe the AED that is best for the type of epilepsy
'Tuberous sclerosis and epilepsy'). The vast majority of
syndrome or type of seizure(s) that your child has. The
people who have epilepsy will take antiepileptic drugs
specialist will also take into account the possible
(AEDs) - also called anticonvulsants - to try and control the
unwanted side-effects of these medications as well as how
seizures. The epilepsy that occurs in people with TS is
the medications come. Anti-epileptic drugs may come as
often difficult to control. This is particularly true if the
tablets, capsules, flavoured liquids or powders that can be
epilepsy starts in early childhood or the person had
dissolved in water or juice. The specialist epilepsy doctor
moderate or severe learning difficulties.
or nurse will explain how to give the medicine(s).
It may take a while to find the right medicine or amount
It is important that people always receive the same brand
(dose) of a medicine that works best for the person,
of the antiepileptic medicine because different brands are
whether a child or adult. Sometimes children and even
not always the same. It is important for parents and
some adults will need to take a combination of two AEDs -
patients to keep a note of which brand(s) they take and to
and this is called polytherapy. It is very rare for anyone to
show this to the local chemist or pharmacy when
need treatment with more than two AEDs at the same time.
collecting the next supply so that they receive the same
There is no good scientific evidence that three AEDs will
control seizures better than two. Also, people taking three
AEDs are far more likely to have unwanted side-effects
Some medicines that you may get on prescription or buy
from the combinations of the different medications.
from a pharmacy do not work properly if taken with anti-
epileptic drugs. Also, some medicines for epilepsy work
Which anti-epileptic drug (AED)
less well if taken with other drugs. It is therefore important
The choice of AED depends on the type of seizure or the
to check with a pharmacist or doctor before giving other
type of epilepsy (the epilepsy syndrome) the person has.
medicines to your child.
The simple guide below shows the most commonly used
Seizure type (epilepsy syndrome)
First choice AED
Other AEDs that are used
Infantile spasms (West syndrome)
Focal (partial seizures)
Generalised tonic-clonic
Sodium valproate
Sodium valproate
Clobazam / clonazepam
Sodium valproate
Lennox-Gastaut syndrome
Sodium valproate
Anti-epileptic drugs: how they treat
seizures and their unwanted side-effects
Some medications such as the oral contraceptive pill may
with TS. One of the main side-effects of clobazam and
also interact with some of the AEDs. This could mean that
clonazepam is something called 'tolerance'. This means
the oral contraceptive may not be as effective. The AEDs
that over many weeks, sometimes months, these AEDs do
that are known to reduce the effect of the oral
not work as well. When the dose is increased seizure
contraceptive pill include:
control might improve a little but the person is more likely
to become very sleepy. If this happens, the clobazam or
clonazepam will usually be slowly discontinued.
Corticosteroids (prednisolone, ACTH, tetracosatide,
hydrocortisone) these are not proper anti-epileptic
drugs. Doctors are not sure why these medications work in
some types of seizure - but they can do! They are used in
only two situations. The most common reason for using a
corticosteroid is to treat infants and young children with
Many medicines used to treat epilepsy have some
infantile spasms (West syndrome). The other situation is in
unwanted sideeffects for the first few days or weeks. To
the rare type of epilepsy called 'non-convulsive status
keep this to a minimum the person will usually start by
epilepticus'. Prednisolone and hydrocortisone are given
taking a small amount (dose) of the AED and then the dose
by mouth. ACTH and tetracosactide are given by
will be gradually increased. The medication may be taken
intramuscular injection which can be painful for the infant.
once a day to begin with but after a week or so it is usually
Corticosteroids are usually given for a very short time and
given twice a day. This means that the person may
usually for no more than 4 or 6 weeks, sometimes less.
continue to have some seizures for a week or two until the
This is because of side-effects associated with these
AED is at the right dose. Some AEDs have to be started
medications some of which can be very serious. These
and increased very slowly and this is particularly the case
include the following: irritability, hyperactivity, increased
for lamotrigine and carbamazepine.
appetite and weight gain, disturbed sleep, high blood
Fortunately most unwanted side-effects are mild and do
pressure and a lowered resistance to fight severe
not last long. The most common ones include sleepiness
infections (called 'immunosuppression').
or drowsiness and occasionally nausea or vomiting
Diazepam (Diazemuls; Diazepam Rectubes, Stesolid)
(feeling or being sick). Rarely, some people may also
This is another type of benzodiazepine (like clobazam). Its
complain of feeling rather bad-tempered. These side-
only use in the treatment of epilepsy is an emergency
effects usually wear off after a week or two.
situation. It is used to try and stop a tonic-clonic seizure
More serious side-effects include a rash and this is
that has been lasting for more than 5 minutes or to stop
particularly likely with the AEDs lamotrigine (the brand
repeated seizures that have been happening for 30
name of which is Lamictal), carbamazepine (the brand
minutes. It can be given out of hospital and also in
name is Tegretol), oxcarbazepin(the brand name is
hospital. It comes in a tube (called a Diazepam Rectube or
Trileptal) and phenytoin (the brand name is Epanutin - but
Stesolid) and is squirted up the back passage (the
this AED is used only very rarely now). It is important to
rectum). In hospital it can be given this way but it can also
understand that this rash will only occur in 5 to 8 out of
be given by intravenous injection. Diazepam causes
every 100 people who take these AEDs. It is also important
sleepiness and most people will fall asleep after they have
to stop taking the AED and to seek urgent medical advice
been given it. Midazolam has largely replaced diazepam
if a rash does occur within the first few weeks of taking
to try and stop seizures out of hospital (midazolam is
one of these medications.
described a bit later).
The following outlines the most commonly-used
Ethosuximide (Zarontin; Emeside)
antiepileptic drugs and their most common side-effects
This medication is used only to treat absence seizures and
this seizure type is very unlikely to occur in TS. It has no
Carbamazepine (Tegretol and Tegretol Retard)
effect on focal or tonic-clonic seizures and is only really
The main unwanted side-effects are caused by starting the
prescribed to children. The main side-effects are nausea
drug in too high a dose and can be prevented if it is
and diarrhoea and also a constant, but mild headache.
started slowly and increased over at least 3 to 4 weeks.
These side-effects go away when the medication is slowly
The most common is a rash which affects the whole body
but goes away once the drug is discontinued. Other quite
common unwanted side-effects include drowsiness,
feeling sick (nausea), seeing double (diplopia), poor co-
This is not felt to be a particularly powerful AED, but it can
ordination and headaches. A very rare side-effect is a
be effective in treating focal (partial) seizures. It does have
lowered immunity to fight infection because the
very few side-effects and the main ones are behavioural
medication can lower the white cells in the blood which
changes (which occur in about 10 in every 100 people
fight infections.
treated with this medication) and occasionally some
abnormal movements. The other main problem with this
Clobazam (Frisium) and clonazepam (Rivotril)
medication is that it often has to be taken three times a
These belong to a group of AEDs called the
day. Nearly all the other AEDs can be taken twice, or
'benzodiazepines'. Diazepam, lorazepam, midazolam and
sometimes, just once a day.
nitrazepam are also benzodiazepines (these AEDs are
described a bit later). The benzodiazepines can be very
effective AEDs in treating different types of seizures
This one of the newer AEDs and is effective in treating
including myoclonic, atonic, focal (partial) and tonic-
focal (partial) and generalised tonic-clonic seizures. There
clonic seizures. Clobazam is used more frequently than
is not enough information about whether it might be
clonazepam because it is better at controlling focal and
effective in the treatment of other types of seizure. The
tonic-clonic seizures. The main side-effects of clobazam
main sideeffects of lacosamide are dizziness and nausea
and clonazepam include sleepiness and unsteadiness
(feeling or being sick) which are more likely to occur if
which usually wear off after a couple of weeks.
the person is also taking carbamazepine or
Clonazepam can also cause excessive drooling,
oxcarbazepine at the same time. The dizziness is thought
excitement and hyperactivity, particularly in children.
to affect between 10 and 15 in every 100 people who take
Because of this clonazepam is used only rarely in children
Anti-epileptic drugs: how they treat
seizures and their unwanted side-effects
This has very few unwanted side-effects. The main one is a
This is one of the oldest AEDs and although it is quite a
rash which usually occurs within the first three weeks after
powerful medication it is used only very rarely in Great
starting the drug. This could be serious and if it does
Britain - and hardly ever in children with TS. The
occur, no more of the drug should be given until the
medication is associated with many unwanted side-
person has been seen urgently by their GP or in the local
effects. These include an allergic rash, unsteadiness,
Accident and Emergency Department. If used in high
abnormal movements, nausea (feeling sick) and double
doses it may cause headaches and difficulty sleeping. The
vision. When used for many months or years it can also
effect of lamotrigine is reduced if the person is pregnant
called thickening of the gums and unhealthy teeth,
or is taking the oral contraceptive. Lamotrigine may also
roughening of the skin of the face and vitamin D
interact with carbamazepine and sodium valproate, two of
deficiency which leads to weak bones (called
the most common AEDs that are often used to treat
'osteoporosis' or 'osteopaenia'). Phenytoin also affects the
developing baby during pregnancy and cause
malformations such as spina bifida, cleft lip and palate
This is quite a new AED and seems to have very few
and heart defects. Phenytoin also reduces the effect of the
unwanted side-effects. As with most AEDs, people may
oral contraceptive pill. Finally, people who take phenytoin
complain of some sleepiness when it is first started but
will usually need to have blood tests to measure the level
this wears off. The other main side-effect is behaviour
of the medication in the blood.
change causing irritability and bad-temperedness.
However, this only occurs in 8 or 10 out of every 100 who
This AED is very similar to gabapentin. An additional
take this medication.
unwanted side-effect is an increased appetite. Rufinamide
(Inovelon): this is a very new AED and is mainly used in
This is another type of benzodiazepine (like clobazam). It
children with the type of epilepsy called the Lennox-
is only used in epilepsy to treat a tonic-clonic seizure that
Gastaut syndrome. It is effective in stopping the 'drop
has lasted longer than 5 minutes and in hospital. It is given
attacks' in this epilepsy that are caused by atonic and tonic
by intravenous injection. In the future lorazepam may
seizures. However, rufinamide might also be effective in
become available as a very thin tablet or 'wafer' that is put
treating focal (partial) seizures. The main side-effects are
under the tongue and that melts rapidly to stop a tonic-
vomiting and diarrhoea and also sleepiness and
clonic seizure at home. Its main side-effect is sleepiness
behaviour changes. More information is still needed on
and many people will fall asleep after it has been given.
this AED because it has only been used in Great Britain for
the past few years.
Midazolam (Epistatus; Hypnovel)
This is another type of benzodiazepine (like clobazam,
Sodium valproate (Epilim; Epilim Chrono; Episenta)
diazepam and lorazepam). Its only use in the treatment of
This is one of the most effective and also the most
epilepsy is to try and stop a tonic-clonic seizure that has
commonly used AED in Europe. When used alone it
been lasting for more than 5 minutes or to stop repeated
causes very few unwanted side-effects. The main side
seizures that have been happening for 30 minutes. It can
effects are some sleepiness or irritability (mainly in
be given out of hospital and in hospital. It is given into the
children) as the medication is first started. It canfrequently
cheek cavity (called the buccal cavity) - which is the
increase a person's appetite leading to an increase in
space inside the cheek. It is not pout into the mouth. The
weight. This is more commonly seen in girls and young
main side-effect is sleepiness and most people will fall
women rather than in boys. The medication can also cause
asleep after it has been given.
some hair loss in the first six months after it has been
started. The hair always grows back and when it does it is
usually thinner and curlier. High doses of the medication
This is another type of benzodiazepine (like clobazam,
may also cause a tremor (shakiness). There is a very rare
lorazepam and midazolam). It is only really used to treat
side-effect of liver damage in young children aged less
the seizure type, infantile spasms. In infants less than 12
than 3 years who have a biochemical (metabolic) cause
months of age infantile spasms is the type of seizure that
for their epilepsy. This risk of liver damage does not seem
occurs in West syndrome. The medication can also be
to be a problem in young children with TS. The main
used sometimes to treat epileptic spasms that occur in
unwanted sideeffects are in older girls and young women.
older children. The main side-effects of this AED are
It may cause problems with the menstrual cycle (periods)
sleepiness and excessive drooling. Most children who
and might affect the developing baby during pregnancy
receive this medication do so for 6 to 12 months.
resulting in malformations. This is more likely if sodium
valproate is taken at the same time as other AEDs. These
are very important side-effects. Because of this, the use of
This is very similar to carbamazepine (Tegretol) that has
valproate must be carefully considered and discussed
been described earlier. Oxcarbazepine is considered to
with females of child-bearing age and potential.
have similar but less frequent fewer side-effects than
carbamazepine. However, oxcarbazepine does not come
as in a slow-release tablet and so it will always have to be
This is an old AED that is used a lot in Germany, Austria
given twice, or rarely, three times a day.
and other European countries. It is only rarely used in
Great Britain. It is useful in treating focal (partial) seizures
and some people with tonic-clonic and myoclonic
This is the oldest AED and although it may be effective in
seizures. There are only a few unwanted side-effects such
treating tonic-clonic, atonic and myoclonic seizures it is
as sedation and rarer side-effects including hyperpnoea
rarely used today. It is only really used as an anti-epileptic
(breathing more rapidly) and some mental slowing.
drug of last choice - when the other AEDs have not
worked. The main side-effects are an allergic rash,
sleepiness, hyperactivity and mental slowing (which can
This can be an effective medication in stopping seizures.
be a big problem for school children), and weak bones
Unfortunately, it may cause a number of unwanted side-
(called 'osteoporosis' or 'osteopaenia'). The medication
effects. The main ones are a reduction in appetite which, in
reduces the effect of the oral contraceptive pill and may
children can lead to some weight loss which might affect
cause malformations of the developing baby during
their growth. The other side-effects include mental
slowing which means that people may not be able to think
Anti-epileptic drugs: how they treat
seizures and their unwanted side-effects
or talk as well. This can affect up to 20 in every 100 people
who take the medication. The other side-effect is on
The main side-effect is dizziness and nausea. Rarely it my
behaviour making some people angry or very sad and
make some seizures worse - particularly myoclonic and
this happens in 5 or 10 out of every 100 people on this
absence seizures.
AED. All of these side-effects will go away when the
medication is slowly withdrawn. The last and least
New anti-epileptic drugs
common side-effects are kidney stones and pressure in
There are also some brand new AEDs that have recently
the eye (called 'glaucoma').
become available and there is not much information on
these medications.
This medication is mainly used in treating children who
have infantile spasms (West syndrome). Vigabatrin is
Eslicarbazepine (Zebinix): probably similar to
actually the medication of first choice in treating children
carbamazepine and oxcarbazepine in how it acts and its
with infantile spasms caused by TS. The main unwanted
side-effects. This AED may only need to be given once a
side-effects in treating infantile spasms are sleepiness and
irritability - but these usually wear off after a few days.
Retigabine (Trobalt): no information on this AED
Rarely, the medication may also increase the child's
appetite. It may also worsen some other seizure types -
Information about the practical aspects of giving anti-
particularly myoclonic seizures. Vigabatrin also used to be
epileptic drugs to children and all the likely side-effects
prescribed for focal (partial) seizures but because of one
that may occur with the different AEDs can be found at the
particular side-effect it is far less commonly used. This
following website:
side-effect is reduced peripheral vision so that a person
may have difficulty seeing things at the edge of their
vision. It is recommended that if a person is to take
Much more detailed, but sometimes difficult to read
vigabatrin then their peripheral vision (visual fields)
information, can be found with the information leaflet that
should be examined before starting the drug and every 4
comes with the medicine.
to 6 months whilst they remain on it. Children who have
learning difficulties are not usually able to have this test
because it requires concentration and co-operation.
Zonisamide (Zonegran)
This is quite a new AED to be used in Great Britain. It
seems to be effective in a wide range of different types of
seizure. It is quite similar to topiramate which has been
described earlier. However, zonisamide has fewer
unwanted sideeffects and particularly causes less mental
slowing and behaviour changes than topiramate.
Zonisamide may also cause kidney stones.
Other, less commonly used anti-epileptic
There are a number of other AEDs that may be used in
treating people with epilepsy and TS. They are only
prescribed in certain situations.
These are:
Acetazolamide (Diamox):
This is a very weak AED and is only used in conjunction
with either carbamazepine or oxcarbazepine. Side-effects
are uncommon and include nausea, reduced appetite and
Dr Richard E. Appleton
occasionally, tingling in the fingers and toes. Paraldehyde:
this is a very old anticonvulsant that is now only used very
Consultant Paediatric Neurologist
rarely and mainly in children. It is only ever used to try
The Roald Dahl EEG Unit
and stop a tonic-clonic seizure that has been lasting for
Paediatric Neurosciences Foundation
more than 5 minutes or to stop repeated seizures that have
Alder Hey Children's Hospital
been happening for 30 minutes. It comes as a ready-made
mixture with olive oil and is squirted up the back passage
(rectum). It has a very powerful smell and causes children
August 2011
to sleep after it has been given. It is far less commonly
used instead of a benzodiazepine (midazolam or
diazepam) as the child's emergency (also called 'rescue')
medication. It can also be used in hospital.
Stiripentol (Diacomit)
Further information on TSC and the work of the Tuberous
This medication is mostly used for a quite rare epilepsy
Sclerosis Association can be obtained from our website at:
syndrome called Dravet syndrome (also known as 'severe
myoclonic epilepsy of infancy'). However, it may
occasionally be used to treat myoclonic and tonic-clonic
While every effort is made to ensure that our publications are correct,
seizures in different epilepsy syndromes. It does have a
please note that some information may change after the date of printing.
few unwanted side effects including sleepiness during the
Information in this leaflet is not intended to be a substitute for medical
day but insomnia (difficulty falling asleep) at night. It can
advice from your own doctors, who know your individual circumstances.
also cause a loss of appetite and some behaviour
We strongly recommend you talk to your doctor, and share the above
problems. As will all the AEDs, these side-effects go when
information. The TSA cannot be held responsible for any actions taken as a
stiripentol is gradually discontinued.
result of using TSA information resources.
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