Epilepsy:
know me, support me
Learning about Epilepsy
An easy English booklet
Information for your support person or family is at the back of this booklet.
Seizures
1
2
What is epilepsy?
• The messages in your brain get all mixed up for a short time.
This is called a seizure. They used to be called fits.
• Your body does strange things or feels strange.
3
4
What seizures could I have?
People have different seizures. For example, you might:
Walk around and talk to yourself
Feel scared, sick or worried in your stomach
Chew or lip-smack
Play with your clothes
Your body might go stiff
You may fall over and you shake. This is called
a tonic-clonic seizure.
You may stare
5
6
Some people have seizures when:
• awake
• asleep
Some people have seizures every day.
Some people only have a seizure sometimes.
Can I stop my seizure?
No.
Will I know the seizure is coming?
Some people know. For example they might:
• have a strange taste
• have a strange smell
• feel sick
• feel worried
7
8
Why do I feel funny after a seizure?
The messages in your brain get all mixed up for a short time. You may feel:
• tired and sleepy
• confused
• angry
After a rest you feel better.
How do I feel?
Some people with epilepsy can get sad or worried.
This can be part of having epilepsy.
Always talk to your doctor about how you feel.
9
10
How can I look after my epilepsy?
If you know a seizure is coming, tell people.
Make notes about your seizures. For example, use:
• a diary
• mobile phone and iPad apps
Name of person
living with
Date to review
epilepsy:
Date plan
written:
Date of birth:
al inform
1. Gener
ation
Medication
records locate
Seizure record
d:
s located:
General suppo
rt needs docum
ent locate
d:
(if known):
No
Yes
d*, if you
ed and followe
prescribed?
be attach
ation been
plan must
sy medic
medication
ency epilep
or emergency
2. Has emerg
authority
medication
If yes, the
d:
ents are locate
These docum
triggers)
no known
k wn write
Epilepsy
diagnosis
Have an Epilepsy Management Plan.
You can say how you want help in this Plan.
Visit your doctor about your epilepsy 1 time every year,
or sooner if you have more seizures.
Use the My Epilepsy Medical Review document to get ready
for your visit.
The doctor will:
• check your health
• say what medication to take
11
12
Medication
13
14
Do I have to take medication?
Yes. Take your medication every day. Most people take medication
in the morning and at night. Do not forget.
If you forget talk to your chemist or doctor.
You may need emergency medication to stop a seizure.
Your doctor can talk to you about this.
15
16
What side effects might I feel from my medication?
• stomach ache
• tired
• feeling sad
• angry
• staying awake at night
• put on or lose weight
• If you get a rash on your skin from new medication, you must
tell your doctor quickly.
Tell your doctor about how your medication makes you feel.
17
18
Seizure triggers
19
20
A trigger is something that might bring on a seizure.
What might trigger a seizure?
If you:
• miss your seizure medication
• are sick or hot
• drink too much alcohol
21
22
If you:
• don’t get enough sleep
• get angry
• see flashing lights or flickering television screens
For women it may be before or during your period.
Safety
23
24
How can I be safe in the bathroom?
• Have showers not baths
• Tell someone before
you shower
• Fit a temperature control
for your hot water
• Have a shower door
that opens out, not in
• Use a shower chair if your
seizures make you fall
25
26
How can I be safe at home and in the community?
You can do the things you like. To stay safe you can:
• Wear a helmet when you ride a bike AND ride with another person
• Swim with another person AND tell the lifeguard you have epilepsy
• Ask someone to help you with safe cooking ideas. For example,
keep the pan handle over the stove
• Wait for a train behind the yellow line
• Check with your doctor if you can drink alcohol
• Keep your personal emergency information on you
27
28
Can I die from epilepsy?
A very small number of people can die from a seizure.
Look after yourself:
• Visit your doctor regularly
• Take your medication
• Do not miss medication
• Make notes about your seizures. Give your notes to the doctor
• Be safe. Refer to the Safety section in this booklet
Can I get a job?
Yes.
If you do not get a job because of your epilepsy it is against the law.
All people in the workplace need to be safe.
Some jobs may not be safe for you to do.
There are support services that can help you get or keep your job.
Call the Epilepsy Helpline on 1300 852 853 for more information.
29
30
Epilepsy Management Plan
EMP
31
32
Name of
person livi
Date of bir
ng with ep
Date to rev
ilepsy:
Date plan
Epilepsy:
Know me,
Support me.
iew:
written:
th:
informa
1. General
tion
Medication
records loc
Seizure rec
Ge
ated:
ords locate
d:
ort need
neral supp
s docume
nt located:
(if known):
ally tra
No
are specific
Yes
ed*, if you
cribed?
and follow
attached
been pres
dication
n must be
me
pla
y
on
ps
ati
epile
cy medic
ergency
or emergen
2. Has em
authority
medication
If yes, the
ated:
loc
are
cuments
These do
triggers)
no known
own, write
: (if not kn
ggered by
tri
are
res
3. My seizu
Epilepsy
diagnosis
ined..
occur:
g quietly)
izure could
t now sittin
icate a se
mobile bu
t may ind
ually very
viour tha
petite, us
my beha
ap
in
or
s
po
ge
,
ility
4. Chan
sad, irritab
ple pacing,
(For exam
type.)
ch seizure
e
scribe ea
bulance
age to de
t needs:
call an am ergen
ncyy
re suppor
ncise langu
When to
em
and seizu
e brief, co
cy
n
us
en
–
tio
trained in
re
erg
rip
er
reffer
Is em
re desc
If you are
e of seizu
tration* ref
cy
typ
nis
en
ch
mi
qu
on
ea
ad
5. My seizu
fre
ati
pllan
on pla
medic
dication
Usual
ation
rate row for
dic
me
pa
me
al
se
y
cy
a
d
pic
Ty
emergen
riity
rity
(Complete
prescribe
of seizure
the
tho
to
au
on
ion
ion
durat
s type
in terms
medicati
thi
of seizure what the
ate
the
n
for
(st
d
tio
an
rip
Desc
scribe
of seizure of seizures per
of seizure?
re you de
g
(Make su
fore, durin
r year
(seconds/
cur
ks like be
month, pe
d in
ned
ine
person loo d if they typically oc
untrain
minutes)
If you are
or per day)
an
diccatiion,
medic
and after
emergency ce
r)
en::
en
Yes
whe
nce wh
in a cluste
lan
ula
bu
mb
call am
No
Page 1 of
1
Developing an
A resource for
Epilepsy Manag
ement Plan
support worke
rs and families
What is an Epilepsy Management Plan?
It has information about:
• a person’s seizures
• how to help the person
• when to call an ambulance
Your support person can use the booklet Developing an Epilepsy Management Plan
to help you have your say in your Plan.
33
34
Help
35
36
Where can I get more help?
Your doctor
A support group
Epilepsy Helpline. Phone 1300 852 853
37
38
Other resources you can get from www.epinet.org.au:
Seizure fir
st aid
C SEIZURE
usness, muscle
TONIC CLONI
loss of conscio
ents.
seizure with d by jerking movem
S
Convulsive
falling, followe
TIMEUNTILITEND
stiffening,
URESTARTEDAND
CUSHION
ETIMETHESEIZ
USEAPILLOWOR
s .OTETH
ADnIFAVAILABLE
NJURY
TCOULDCAUSEI
s 0ROTECTTHEHE
ING
ARDOBJECTSTHA
ORSTOPTHEJERK
s 2EMOVEANYH
TRAINTHEPERSON
ATTEMPTTORES MOUTH
s $ONOT
INTHEIR
IRSIDEn
ORPUTANYTHING
ERSONONTOTHE ENTSHAVE
MOVEM
SSIBLEROLLTHEP
s !SSOONASPO TOWAITUNTILTHESEIZURE
YOUMAYNEEDCTURES
REGAINEDFULL
CEASEDSEEPI
URETHEYHAVE
SONTOMAKES
THEPER
s 4ALKTO
HAVERECO
CONSCIOUSNESS
ERSONUNTILTHEY
REASSURETHEP
s 3TAYWITHAND
SEIZURE
confus
PARTIAL
d signs of
COMPLEX
Can b
with outwar
e seizure
behaviour.
Non-convulsiv ess or inappropriate tion.
unresponsivenl hol or drug intoxica
TIL IT EN
:
epsy
Epil
me,
w
Kno
e.
tm
por
Sup
• First Aid Poster
• Developing an Epilepsy Management Plan for Support Workers
• My Epilepsy Medical Review Appointment document
Name of
person living
with epilepsy
Date to review:
:
Date plan
written:
Date of birth:
1.
General informa
tion
Medication
records located:
Seizure records
located:
General support
needs docume
nt located:
• Epilepsy Management Plan and Emergency Medication Plan
(midazolam or rectal valium)
trained.
(if known):
No
specifically
diagnosis
Yes
*, if you are
and followed
prescribed?
be attached
tion been
y medica
ion plan must
ncy epileps
ncy medicat
2. Has emerge ion authority or emerge
medicat
If yes, the
nts are located:
These docume
Epilepsy
• Epilepsy Wellbeing Map
This booklet has been designed to provide basic information about epilepsy. It is not intended
to answer every question that a person may have about epilepsy. You are encouraged to talk
to your doctor or telephone the Epilepsy Helpline on 1300 852 853 with any questions that
you might have.
This booklet can also be accessed via electronic talking book (DAISY) or audio formats via
www.epinet.org.au
If you are supporting a person to read this booklet here are some tips:
• read the booklet first so if you want to seek additional information prior to supporting the
person you can do so
• choose a time when the person is relaxed and interested in reading the booklet
• consider reading the booklet over several occasions so that the information is not
overwhelming
• if questions arise whilst reading the booklet, support the person to list these questions and
talk to the doctor or telephone the Epilepsy Helpline on 1300 852 853
39
40
Thank you for the contributions and expertise of:
Funded by the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs,
DisabilityCare Australia, the national disability insurance scheme.
The opinions, comments and/or analysis expressed in this document are those of the author or authors and do not
necessarily represent the views of the Minister for Disability Reform and cannot be taken in any way as expressions of
government policy.
© Epilepsy Foundation 2013
587 Canterbury Road, Surrey Hills, Victoria 3127 Australia
Telephone: (03) 8809 0600
The contents of this publication including all text, graphics, logos and images are protected by Australian copyright laws.
Copyright of the Epilepsy Foundation’s materials belongs to the Epilepsy Foundation. Other than for the purposes of and subject
to the conditions prescribed under the Copyright Act 1968, no part of this publication may, in any form or by any means, be
reproduced, stored in a retrieved system or transmitted without the prior written permission of the Epilepsy Foundation.
The information contained in this publication provides general information about epilepsy. It does not provide specific advice.
Specific health and medical advice should always be obtained from a qualified health professional.