Primary Disease Name: Epilepsy
What is Epilepsy?
Those of us with epilepsy are just like everyone else, except we
are prone to recurrent seizures. A seizure is caused by a temporary
change in the way our brain cells work. (The old name for a seizure
was a 'fit').
The brain is like a computer which consists of a vast network of
nerve cells called neurons. Throughout our lives literally billions
of electrical messages are fired between these cells, controlling
every single thing we think, feel or do.
The body has its own inbuilt balancing mechanisms. These ensure
that messages usually travel between nerve cells in an orderly way.
However sometimes - quite without warning - an upset in brain chemistry
causes the messages to become scrambled. When this happens the neurons
fire off faster than usual and in bursts. It's this disturbed activity
that triggers off a seizure.
During a seizure we may black out or experience a number of unusual
sensations or movements. The whole thing usually only lasts a matter
of seconds or minutes, after which our brain cells return to normal.
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Types Of Epileptic Seizures
Generalised seizures
Tonic-clonic The most common sort of generalised seizure - used
to be known as ‘Grand mal’.
You lose consciousness.
Tonic phase
The muscles contract, the body stiffens
and then - Clonic phase - jerks uncontrollably. You may let out
a cry as air is forced out of the lungs and the lips may go blue
due to lack of oxygen.
When you come round you cannot remember anything. You will need
time to recover - from minutes to, in some, hours.
Do not try to restrain the person. Clear away possible risks - sharp
edged furniture etc.
Cushion the person’s head when they fall and, when the limbs
stop jerking, put the person in the recovery position.
Do not put anything in the person’s mouth.
Do not try to give the person anything to drink until they have
regained consciousness.
Be quietly reassuring and stay with them until they have recovered.
Do not call for medical help unless the seizure lasts more than
5 minutes or they are injured.
Absence
This generalised seizure is literally an
absence - a momentary lapse in awareness - used to be called "Petit
Mal’.
More common in children and teenagers.
You stop what you are doing, stare, blink or look vague for a few
seconds before carrying on with what you were doing. Onlookers may
think you were just daydreaming or may not notice.
Do not try to ‘wake up’ the person.
Tell them what has happened while their seizure was happening -
particularly important for children during lessons.
Other Generalised Seizures
These include atonic seizures (drop attacks)
and myoclonic seizures which cause brief forceful jerks. Atonic
seizures can cause injury - an increased awareness of safety is
vital if this type of seizure occurs regularly.
In some instances protective headgear may be appropriate.
Partial seizures
Simple partial Occurs in just part of the brain - type of symptoms
depend on the area of the brain involved.
Symptoms include one or more of the following: twitching, numbness,
sweating, dizziness, nausea, disturbances to hearing, vision, smell
or taste, strong déja vu etc.
These symptoms last for several seconds and then go away. You remain
fully aware.
These seizures often progress to other types of seizure and can
therefore act as a warning or ‘aura’.
Do not try to restrain the person.
Stay with the person and be reassuring until the symptoms go away.
Be aware that the person may go on to have a complex partial or
tonic-clonic seizure - be ready to move any sharp objects, furniture
etc, to prevent injury.
Complex partial This common form of seizure includes
temporal lobe epilepsy.
You may appear to behave strangely - plucking at your clothes, smacking
lips, swallowing repeatedly or wandering around as if drunk - these
actions are called automatisms. Other symptoms are similar to simple
partial seizures but you will not remember them afterwards.
You are not aware of your surroundings or of what you are doing.
Do not try to restrain the person but gently try to steer them away
from any unsafe situations.
Do not try to ‘wake’ them.
Stay with the person, being gently reassuring, until the person
has recovered.
The person may need to rest for a while.
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Who has Epilepsy ?
Epilepsy can affect any of us, at any age and from any walk of
life. Boys and men tend to be slightly more prone than girls and
women - though no one really knows why. Many of those who develop
epilepsy start having seizures during childhood, but it can develop
at any age.
Sometimes the reason epilepsy develops is obvious: brain damage
caused by a difficult birth; a severe blow to the head; a stroke
which starves the brain of oxygen; or an infection of the brain
such as meningitis. In some people the tendency to have seizures
runs in the family. It's not epilepsy itself which is inherited
but a low trigger point or 'seizure threshold'. This leads our brain
cells to change their behaviour in circumstances which wouldn't
cause a seizure in other people. Very occasionally the cause is
a brain tumour. But for most of us - six out of 10, in fact - the
exact cause is a mystery.
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Causes of Epileptic Seizures - the Triggers
Most seizures strike completely out of the blue. However some of
us can pinpoint certain factors which spark them off. These include:
Alcohol Seizure Trigger- excess alcohol can trigger
a seizure - even in people without epilepsy.
Stress Seizure Trigger - some of us experience
more seizures during periods of anxiety or stress. This may be partly
because sleep patterns can be upset at such times. Some stress is
part of everyday life - it's best to find ways to manage it, rather
than trying to avoid it altogether.
Patterns of light Seizure Trigger - many people
believe that watching TV or playing video games can trigger a seizure.
This is true in a few people who are photosensitive (sensitive to
flickering light), though it's far less common than most people
imagine. In fact only about five per cent of people with epilepsy
are affected in this way.
Late nights & lack of sleep Seizure Trigger - too many late
nights or going without sleep (e.g. if you work shifts or travel
across time zones) can trigger seizures. The odd late night shouldn't
matter much, but it is best to try to keep regular hours. Experience
will teach you what best suits you.
Illness Seizure Trigger - a high temperature (fever) can bring
on a seizure in young children if they are ill. This is less likely
in adults, however having a minor ailment can reduce a person's
seizure threshold, making seizures more likely.
Hormones Seizure Trigger - many women report that their seizures
are linked to their menstrual cycle - though no one really knows
why. They tend to happen in the week before or first few days of
your your period. Ask your doctor or medical specialist for advice
if you are affected in this way.
Food Seizure Trigger - some people
with epilepsy claim that certain foods trigger seizures. There is
no evidence to suggest that people with epilepsy should avoid certain
foods. However, skipping meals and eating an unbalanced diet may
be a factor.
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Diagnosis of Epilepsy
It can be difficult for doctors to diagnose epilepsy. This is because
there is not one certain test and there are many other possible
reasons for the loss of or impairment of consciousness. Most of
us don' t recall what happens during our seizures, and in between
seizures our brain cells behave as normal. Since epilepsy is the
tendency to have recurrent seizures the doctor may not be able to
diagnose you if you've only had one seizure. About one in 20 people
has an epileptic seizure at some time in their lives but not all
develop epilepsy. For this reason some doctors prefer to 'wait and
see' after a single attack.
You can help your doctor decide on a diagnosis by giving him/her
as full a picture as possible of what happens when you have a seizure.
Many of us forget what we want to say the minute we walk into the
doctor's office, so it may help to write it down. As most of us
don't remember everything that happens during our seizures, you
should take someone along with you who has witnessed the seizure.
Questions the doctor may ask you
How did you feel before you had the seizure e.g. hot, cold, hungry,
tired etc.
Did you experience any unusual symptoms beforehand e.g. nausea,
dizziness, chest pain? (This is to rule out medical problems that
could be confused with epilepsy such as heart problems, migraine,
panic attacks or fainting.)
Had you drunk any alcohol or taken any drugs of any kind?
Did you have any warning beforehand? If so, what?
Do you remember anything about the seizure? If not, what happened
when you came round?
Did you fall over and/or injure yourself?
Were there any symptoms after the attack e.g. numbness or weakness?
How many seizures have you had?
Are there any other factors which could suggest epilepsy e.g. head
injury, previous seizures, other people in your family with epilepsy?
Questions the doctor may ask your companion -
What was X doing when the seizure(s) started?
What exactly happened when X had the seizure(s)?
How long did the seizure(s) last?
Was there a period of confusion?
10 questions to ask your doctor regarding Epilepsy
1. What sort of epilepsy do I have?
2. Why do you think I have developed it now?
3. Will I always have it?
4. What tests are you recommending and what are you looking for?
5. How will you treat my epilepsy?
6. Is there anything I can do to reduce the side effects of any
treatment?
7. What will happen if my treatment doesn't work?
8. Is there anything I can't/shouldn't do?
9. What can I do to prevent my seizures?
10. Where can I get more information about epilepsy?
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Epilepsy Tests?
If your doctor suspects epilepsy she/he should refer you to a doctor
who specialises in brain disorders or in epilepsy itself. This specialist
may order a number of painless tests to help decide whether you
have epilepsy and identify what type it is. Such tests aren't always
conclusive. However, together with your signs and symptoms they
can give the doctor a fairly clear idea of whether it is likely.
EEG
EEG stands for electroencephalogram. This test involves placing
around 20 pads on your head while you sit or lie down. These pick
up the electrical activity of your brain cells and transmits it
to an instrument which produces a printout of your brain waves.
The test is performed while you open and close your eyes, breathe
deeply and during exposure to a flashing light. The whole thing
usually takes less than half an hour. The specialist may ask for
more specialised types of EEG to help diagnose attacks of uncertain
cause.
Brain Scans
These are to look for any areas of damage to your brain that could
account for the seizures. The most common type of scan is CT (computed
tomography). You lie on a mobile couch which slides your head into
the scanner, which looks like the drum of a washing machine. X-rays
are taken of the brain at different angles and passed through a
computer to produce a picture of 'slices' of your brain.
A more sophisticated technique is MRI (magnetic resonance
imaging). This provides a high-quality image of your brain
- without using X-rays or other radiation. The drum-like scanner
contains a powerful; magnet that picks up signals from your brain.
These are fed into a computer which creates a 3-D image of the area
being scanned and displays it on a screen. This test is very noisy.
Blood tests
The doctor will usually take a blood
sample to check your overall health and to look for any other conditions
that could be responsible for your seizures.
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Treating Epilepsy
An important part of managing epilepsy is the carefully planned
use of drugs designed to control our seizures. Taking the medicine
prescribed by the doctor on a daily basis helps most of us to get
on with what we want to do - without epilepsy getting in the way
too much.
There is a wide choice of effective anti-epilepsy drugs available
in the UK today. They act in several ways and usually come in tablet
or capsule form, or as a syrup for children. For four out of five
of us seizures can be controlled by taking the right dose of the
right drug.
Which drug?
Once you've been diagnosed as having epilepsy the doctor will try
to find the drug that controls your seizures, at a low dose and
with few side effects.
In the past several drugs were often used together. This tended
to create more risk of distressing side effects. Today, most doctors
prefer to prescribe just one drug - this is known as monotherapy.
If this doesn't control your seizures you may need to take another
one as well. On the whole, though, doctors try to avoid prescribing
more than two drugs.
The doctor will introduce the drug she/he chooses gradually until
the best control of your seizures is achieved. During this time
you'll have regular check-ups and the doctor may take blood samples
to check on the levels of the drug in your blood.
Some trial and error may be involved before the right treatment
is found. Once it is, you will need to consult your doctor or hospital
from time to time. However, always seek advice from your doctor
if any of the following occur:
You suddenly start experiencing more seizures than usual.
You can't take your medicine for any reason e.g. stomach upset.
Other aspects of your health change.
You are thinking about starting a family or become pregnant.
It is vital to take your medicine correctly, as prescribed by the
doctor. Anti-epileptic drugs work by establishing a constant balance
of the drug in your system - missing doses or taking the drugs at
irregular times may prevent them having a positive effect on your
seizures.
Once your treatment plan has been worked out you'll be referred
back to your own doctor. Some areas in the UK have a special Epilepsy
Liaison Nurse who acts as a 'go-between' between the specialist
and your doctor. She/he can also answer any questions you may have
and help explain the effects of epilepsy to employers, teachers
and so on.
In the UK, if you have epilepsy and require medication you do not
have to pay prescription charges, however, you will need an exemption
certificate. NHS Direct, your GP or pharmacist can advise you further.
Side effects
All medicines have potential side effects as well as benefits.
Balancing the two can be a fine art. Some of us are lucky and don't
experience any side effects - especially with some of the newer
drugs. Even if you do get them they may be fairly minor, occur at
the start of treatment and settle down after a few weeks.
Short-term effects
The most common effect you may experience is sleepiness. Luckily
this often passes as your body adjusts to the drug. Sometimes the
drugs may make you feel unsteady and 'woozy'; this is usually a
sign that the dose is too high and needs to be altered. Some people
are allergic to certain drugs and develop an itchy skin rash or
other symptoms. In this case the doctor may take you off the offending
drug and try you on something else.
Long-term effects
More troublesome side effects can occur when certain drugs - usually
the older types used to treat epilepsy - are taken for a long time.
They may include poor memory and concentration, irritability and
overactivity in children, swollen gums, acne and weight gain.
If you experience mild side effects be sure to mention them to
doctor on your next visit. If they are more severe, contact your
doctor immediately. Never just stop taking a drug without medical
advice as you could have a seizure. The range of safe, reliable
drugs available means that if you do suffer unacceptable effects
with one medicine, the doctor can usually switch you to another
that may suit you better.
Even so, you may be faced with a tricky choice between having no
seizures but some side effects, or having side effects but no seizures.
At the end of the day it's your decision - but it's one that is
best discussed with the doctor so that you can be aware of all the
options.
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