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Drug wallets may help
you to take the right doses at the right times. Drug wallets usually hold
seven small containers to keep medication in (one for each day of the
week). Each container is divided into sections for the morning, afternoon
and evening. Each container can be removed if you are going out and want
to take your medication with you.
Order
drug wallets from NSE online shop
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Side
effects and allergic reactions
All
medications can cause side effects, but whether or not someone has them
depends on their individual reaction to the medication. Side effects can
vary from person to person, and from drug to drug.
Some
people have an allergic reaction to their medication.
This is rare but can be serious. A skin rash is often the first sign of
an allergic reaction and usually happens soon after starting treatment
(regardless of the size of the dose). If you think you have an allergic
reaction, this should be reported to your doctor as soon as possible.
Dose-related
effects can happen if the dose is too high. Starting medication
at a low dose and increasing it slowly may avoid many side effects. Some
side effects occur when starting new AEDs, and these normally wear off
after a few days. If you have any ongoing side effects it is worth telling
your doctor about them.
If
drugs are taken for a long time (many years), long-term side effects
may happen. This does not always happen and keeping the drug treatment
as simple as possible may lower any risk of these effects.
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AEDs
and other medication
Some
AEDs may affect how other medications work and some other medications
can affect how AEDs work. It is important to tell your doctor about any
other medication you are taking. This helps to avoid any possible interactions
(when different drugs affect each other). It can also be helpful to check
with a pharmacist before taking over-the-counter medications, including
complementary therapies.
Information
on complementary treatments
AEDs
and alcohol
The decision to drink
alcohol when taking AEDs is a personal choice. How alcohol affects AEDs
depends on the individual, which AED they take and how much alcohol they
have had. Some people find that if they drink too much alcohol, it can
also trigger seizures in the hangover period. The patient information
leaflet that should come with your AEDs often has guidance on drinking
alcohol with the AED, or you can talk to your doctors about this.
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Monitoring
AEDs
Any
kind of drug treatment should be closely monitored. With AEDs, monitoring
involves checking how often a person has seizures and if they are having
side effects from the drugs. AED doses are altered as appropriate for
each person, in order to get the best control of seizures.
Before
starting AEDs you may be asked to have a blood test. The blood test looks
at a number of things, for example how well your liver is working. If
you have osteoporosis (where bones become fragile and are more likely
to break), or a family history of osteoporosis, you may be asked to have
a test to look at your bone density. These tests may be repeated every
one to two years, or more frequently if there is concern that a side effect
is happening.
When
someone is already taking AEDs there are times when having a blood test
may be useful:
- if
it is not clear whether they are taking the prescribed doses
- if
it is not clear if they are having dose-related side effects
- if
other drugs that could affect their AEDs are being started or stopped
- if
they are pregnant
- as
a guide to finding the correct dose of phenytoin. For
other AEDs, measuring drug levels is generally of little help in deciding
the best dose. It is more useful to see if the person is having any
seizures or any side effects from the drugs.
Some
other groups that may benefit from monitoring include older people, people
with poor liver or kidney function and people with learning disabilities
who find speech difficult.
For
some AEDs an alternative to blood level testing is testing saliva levels.
This can be particularly helpful for people with learning disabilities
because it may be easier and less painful than a blood test.
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Coming
off AEDs
Some
people may need to take AEDs for a long time, sometimes many years. However,
if someone has not had a seizure for two or more years they may be able
to withdraw (come off) their AEDs.
If
you are thinking about coming off your AEDs, this should be done with
advice from your GP or neurologist. This is because stopping treatment
can lead to seizures starting again, and sometimes seizures might last
longer than they did before.
When
thinking about coming off AEDs, it is also important to consider the impact
on your life if your seizures start again (for example the effect on work,
leisure interests and driving). For some people, if seizures do start
again, taking the same medication again straight away usually gives the
same seizure control as before. But in some rare instances the original
AED may not work as well as before.
Most
people do not have withdrawal symptoms if a drug is withdrawn slowly.
However, AEDs that might cause withdrawal symptoms include phenobarbitone,
diazepam, clonazepam, clobazam and phenytoin. These symptoms may include
feelings of anxiety, panic, restlessness or sweating.
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Contraception,
pregnancy and AEDs
Some
types of contraception might be less effective for women taking some AEDs.
This depends on the individual, which AEDs they take and the type of contraception
they use. Our epilepsy and women page has more information
about contraception and AEDs.
There is a chance that taking AEDs while pregnant may affect the developing
baby. However these risks need to be carefully considered for each individual
and balanced against the possibility of seizures happening during pregnancy.
More information about pregnancy and parenting.
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Drug
treatment for status epilepticus
When
a seizure continues for more than 30 minutes or when one seizure follows
another without recovery in between, it is known as status epilepticus
(or ‘status’). When status epilepticus happens during a tonic clonic (convulsive)
seizure it is a medical emergency and needs urgent treatment. Seizures
that last longer than usual, or an increased number of seizures, often
happen before status. In some cases, missing doses of AEDs can trigger
status.
The
drug diazepam is often used to help stop status epilepticus from happening.
It is usually given rectally and is only used in an emergency. Diazepam
can cause sedation and breathing difficulties so the person must be closely
watched until they have fully recovered.
For
people who go into status, their doctor may prescribe diazepam so that
a carer can give it to them. Carers will need to be trained in giving
rectal diazepam; this can be from a health care professional or the NSE.
It is important that every individual who is prescribed diazepam has a
written protocol for their carers to follow.
Midazolam,
a liquid medicine given into the side of the mouth, is sometimes used
as an alternative to diazepam. However, midazolam is not licensed for
this use and is not widely available. Like diazepam, specialist training
and a protocol are needed to be able to give midazolam.
More
information about status epilepticus on our page about seizures.
Information about NSE training
services.
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Epilepsy
reviews
Epilepsy
is a very individual condition and people respond differently to their
treatment. The National Institute for Health and Clinical Excellence (NICE)
recommends that adults with epilepsy should have a review of their epilepsy
at least once a year, with either their GP or neurologist.
Glossary
Anti-epileptic
drug (AED) - medication taken for epilepsy.
Generic
and brand names - the generic name is the name of the type of drug or
it’s chemical or “active” ingredient, and the brand name of a drug is
the name given by it’s manufacturer (e.g. Nurofen is a brand name of the
generic drug ibuprofen).
Dose
- the amount of medication that is taken.
First
line - Drugs that are prescribed and taken on their own.
Monotherapy
- when a drug is taken on its own.
Neurologist
- a doctor who specialises in conditions that affect the brain (also called
a specialist).
NICE
- National Institute for Health and Clinical Excellence, an independent
organisation that provides guidance on promoting good health.
Parallel
imports - when a version of a drug is made outside of the UK and is then
imported into the UK. However, some AEDs are only made outside the UK
(and not inside the UK).
Patient
information leaflet - the small information leaflet that comes with each
prescription of medication.
Polytherapy
- when more than one drug is taken.
Protocol
- written instructions about when and how to give a drug.
Second
line - drugs that are usually taken in addition to first line drugs (and
are not usually used on their own).
Seizure
control - this is when all seizures stop happening (usually by taking
medication). Also called seizure-free.
Withdrawal
- slowly coming off (stopping) medication.
Further
information
People
with epilepsy are entitled to free prescriptions for their anti-epileptic
drugs and also for any other prescribed medication. To apply for free
prescriptions fill in a FP92A form (or EC92A in Scotland, FP92W in Wales
or HC11B in Northern Ireland). These are available from GP surgeries or
pharmacies.
To
donate blood, people with epilepsy must be seizure-free and off AEDs for
two years.
Further
information about AEDs is available on
Medicine Guides (opens in new window) and
British National Formulary (opens in new window).
Table
of currently available drugs for adults
UK
Epilepsy Helpline: 01494 601400
Monday - Friday 10am - 4pm
©
The National Society for Epilepsy
February 2007
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