Still having seizures despite taking your medication?

Transcription

seize
control
What is the
best treatment?
Epilepsy
treatments
“My son inspired
me to seek seizure
freedom”
Treatment
Q&A
Real stories
• Lisa • Scott • George
• Gillian • Richard
• Matthew • Geoff
• Torie
Your treatment
review
Eight steps to
better treatment
Still having seizures
despite taking your
medication?
epilepsy.org.uk/seizecontrol 1
The brand new
Epilepsy Action
app is here!
Epilepsy Action’s seizure app is available
on iPhone and Android. In one app, your
patients can record and track their
seizures. Data can be recorded by
seizure type(s), frequency, symptoms
and triggers. Medication reminders can
be set. This app will enable your patients
to give you accurate information so you
can better monitor their progress.
epilepsy.org.uk/app
With the app patients can:
• Record their seizures in a ‘digital seizure diary’
• Keep a track of the details of their seizure such as type, trigger and duration
• Set multiple medication reminders and enter details about their medication
• Give precise details of their epilepsy with ease
• Identify trends in their epilepsy to aid diagnosis
• Find out more about epilepsy, seizures and medication
Download the app or find out more at
epilepsy.org.uk/app
“Using the Epilepsy Action app, I can
make sure that my epilepsy specialist
and midwife get the whole story of
my epilepsy. And it’s easy to use.”
2 epilepsy.org.uk/seizecontrol
FREE
June 2014
welcome
Sub-editor:
Louise Cousins
[email protected]
Design:
Suzanne Horvath
Photography: Photos
contributed by, and belonging
to the contributors
Publisher Epilepsy Action
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epilepsy.org.uk
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Epilepsy Action is a working name
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© 2014 Epilepsy Action
Nicole (editor)
Editor:
Nicole Crosby-McKenna
[email protected]
Still having seizures?
Unfortunately, you’re not
alone. Almost half of the
600,000 people with
epilepsy living in the UK
still have seizures. For
many, this is despite
taking epilepsy medicines.
Maybe past epilepsy treatments failed to improve your
situation. But we estimate that with better treatment
for their epilepsy, 108,000 more people could become
seizure free. Others might find a treatment that
reduces the number or severity of their seizures, or
the side-effects they experience. This is why we believe
that it’s the right time to seize control and ask: ‘Is there
a better treatment for my epilepsy?’
In Seize Control, Lisa, Scott, George (with help from
his mum Corrin), Gillian, Richard, Matthew, Geoff and
Torie chat about the difference their epilepsy
treatments have made to their lives. We also bring
together information about different treatment options,
and advice from Dr Greg Rogers on how you can
improve your epilepsy care and treatment.
Remember, Epilepsy Action is here to help you on
your treatment journey. We wish you the very best on
your journey to the right treatment, so please keep in
touch.
Best wishes,
Nicole (editor) and Dr Greg Rogers (epilepsy clinical
champion at Royal College of GPs).
contents
05 What is the best treatment
for epilepsy?
07 Epilepsy treatments 10 Determined not to give up
12 Treatment questions and answers
14 Life changing surgery 16 Finding a treatment for George
21 My last seizure
22 Not cured yet – but better
24 How do I ask about other treatments?
25 Eight steps to better treatment 27 My son inspired me to seek seizure freedom
30 VNS allowed me to get on with life
33 Epilepsy in numbers
34 I’m achieving so many firsts 4 epilepsy.org.uk/seizecontrol
What is the best treatment for epilepsy?
B
eing free of seizures and unwanted
side-effects is the ultimate goal of
epilepsy treatment. Realistically
with current treatment, it’s not possible
for everyone to become seizure free but
you have the right to expect that this
will be the aim of your treatment.
In the case of epilepsy, there isn’t one
single treatment that is ‘better’ than
another. The epilepsy treatment
prescribed to someone will depend on
many factors. This includes their epilepsy
syndrome and seizure type. Epilepsy
medicines (for example lamotrigine,
carbamazepine, sodium valproate) are
used to treat the majority of people
with the epilepsy.
If you are still having seizures, despite
taking medication correctly for a
reasonable amount of time, your GP or
family doctor might refer you to an
epilepsy specialist. There are many types
of epilepsy specialists, for example a GP
with a special interest in epilepsy, a
neurologist with expertise in epilepsy, or
an epilepsy specialist nurse.
Your epilepsy specialist will want to
know more about your epilepsy and
your seizures. To do this they might ask
“I’m often asked which
treatment is best?’ or
how do I know that
there isn’t a better
treatment available?”
Dr Greg Rogers
What is the best treatment for epilepsy?
“My epilepsy looks like it
is getting better! I look
to the future with a
whole new positive
outlook, as each month
passes by.”
to see your seizure diary, or order some
tests such as an electroencephalogram
(EEG) or a brain scan.
Your specialist might suggest making
changes to your epilepsy medicine. But
getting your medicine right is not easy.
Different doses of a medicine might
need to be tried to find the dose that
works for you. Sometimes a person
might be prescribed a different medicine
or a second medicine to take..
If medicines have failed to control
your seizures – the next step might be
to refer you for further tests and
treatment at a tertiary centre. This is a
specialist centre where you will be cared
for by a team of epilepsy professionals.
Your doctor or specialist might
suggest using another treatment
alongside your medicine. For example
the ketogenic diet, brain surgery, or
vagus nerve stimulation (VNS). Again,
choosing which treatment might be
suitable is not straight forward. Your
doctor or specialist will have to carefully
consider your epilepsy syndrome,
seizure type and where about in your
brain the seizure activity happens.
A ‘better treatment’ for a person’s
epilepsy is one that allows them to have
as few seizures and side-effects as
possible.
If your current treatment is not
reaching this aim, you could ask for a
treatment review. For more support,
read our eight steps to better treatment
on page 21.
epilepsy
treatments
In the UK there are a number of different treatments
available to treat epilepsy. These include epilepsy
medicines, special diets and different surgical options.
Here’s a quick introduction to the different treatment types
Epilepsy treatments
Epilepsy medicines (also known as antiepileptic drugs) (AEDs)
The most common way epilepsy is treated is with
epilepsy medicines. They do not cure epilepsy, but aim
to try and stop seizures happening. Generally, they do
this by changing the levels of chemicals in your brain
that control the electrical impulses.
The majority of people featured in our real-life
stories are taking epilepsy medicines.
Brain surgery
A small number of people with epilepsy can have brain
surgery to try and stop their seizures. Doctors will
usually only consider surgery for you if there is an
obvious cause in your brain for your epilepsy, such as
scar tissue. You normally have to have tried a few
different epilepsy medicines, but still be having seizures.
You and your doctor will need to weigh up the benefits
and risks of having brain surgery.
Matthew and Torie share their experiences of brain
surgery later in this magazine.
Deep brain stimulation (DBS)
Deep brain stimulation is a treatment where a part of
your brain is stimulated, to stop you having symptoms
of a particular medical condition. It is only considered
for people who can’t have their seizures controlled by
epilepsy medicines or other types of surgery.
Lisa has shared her story of DBS in this magazine.
The ketogenic diet
The ketogenic diet is sometimes used to try and help
people whose seizures cannot be reduced or stopped
with epilepsy medicine. The diet is higher in fats and
lower in carbohydrates than a typical diet.
The ketogenic diet should only be used under the
supervision of a dietician who is an expert in the diet.
This is because the balance of the diet
needs to be carefully worked out for
each person. Some people find the diet
unpleasant and difficult to follow. Others
manage the diet very well.
Don’t forget to read how George’s
family have pulled together to help
George follow his diet.
Trigeminal nerve
stimulation
Trigeminal nerve stimulation is one of a
variety of types of neurostimulation
being explored at the moment. At the
time we went to print, it was not yet
available for people in the UK. You can
find updates on this and other types of
treatment at epilepsy.org.uk
Vagus nerve stimulation
(VNS)
Vagus nerve stimulation is a treatment
for epilepsy where a small device is
implanted under the skin below the left
collar bone. This device, similar to a
pace-maker, is called a generator. The
generator is connected to a thin wire,
which stimulates the vagus nerve in the
person’s neck at regular times
throughout the day. This sends
impulses to the brain, which helps to
prevent electrical activity that causes
seizures.
Geoff and Richard have shared their
stories of having a VNS implanted, after
finding out that brain surgery wasn’t a
safe option for them.
Forum4e is a free online
community for people with
epilepsy and carers of
people with epilepsy. You
just have to be over 16 and
have access to a computer.
The site is run by Epilepsy Action. You can
join from anywhere in the world. As well
as the forums, there is a chat room and
you get your own blog.
It’s a great way to talk to other people
who may be going through similar things
to you.
“Joining this special group of friends has
helped educate me, given me back my
self belief, even made me laugh, but
most of all helped me realise that I am
not alone”.
How do I join?,
Go to forum4e.com
Lisa’s
journey
Diagnosed with
epilepsy at the age of
seven, Lisa became the
third person in the UK
to receive deep brain
stimulation (DBS) to
treat epilepsy
M
y seizures have
always been
frequent and
unpredictable. In a seven-day
period, I’d have seizures on
at least five days. Some days
I might have a couple of
seizures. Other days I’d have
several seizures every few
minutes, or a prolonged
seizure. My husband Paul
has given me diazepam
countless times [an epilepsy
medicine used in an
emergency]. I’m also at a
higher risk of SUDEP, which
Paul and I talk openly about.
[To find out more about the
risk of sudden unexpected
death in epilepsy (SUDEP) –
call the Epilepsy Helpline on
Freephone 0808 800 5050]
I was
determined
not to give up
Lisa’s journey
My seizures are exhausting. Sometimes
I’m too poorly to get out of bed for a
few days. Over the years, I’ve had
periods of depression –probably due to
my medicines, my seizures and my
frustration.
Willing to try anything my doctors
recommended, I’ve tried every dose,
type and combination of epilepsy
medicine. Some simply didn’t work,
some made me drowsy and others
changed my personality.
Don’t give up
On my 21st birthday (1993) I had
epilepsy brain surgery. Unfortunately,
due to the risk posed to my
communication skills, the surgeons were
unable to go deep enough to remove all
of the scar tissue [causing my seizures].
My seizures continued and in 2003,
I was reassessed for brain surgery. Sadly,
the results confirmed that surgery
wasn’t an option. Eventually (in 2005),
I had an operation to implant a vagus
nerve stimulation (VNS) device. VNS
didn’t help me and I was devastated
when my specialist said that there wasn’t
anything else to try.
I was referred to The Walton Centre
[a specialist neurology centre in
Liverpool] in 2011. My specialist told me
that a very new treatment – deep brain
stimulation (DBS) – might help me.
In 2013 I had two operations to
implant my DBS device. In the first
operation two electrodes were implanted
into my brain. Then three days later,
surgeons implanted a battery into my
chest and connected it to the electrodes.
My life with DBS
I have a scar and I temporarily lost my
hair – but none of that bothers me.
The medical team will continue to
monitor my progress over the next
couple of years. At my next appointment
my neurosurgeon plans to increase the
pulse rate and strength of the
stimulation.
The largest improvement is in my
quality of life. I recently had five hours of
tests which showed that my cognitive
[thinking] and communication skills have
improved. I can think more clearly and
feel emotionally stronger. People
comment that I’m now brighter and
happier – I’m more positive about our
future.
My seizures are less frequent.
Sometimes I can go three or four days
without a seizure. I’ve also noticed that I
recover more quickly after a seizure and
I haven’t had any cluster seizures.
Appearing on TV
I’m glad that I took the opportunity to
share my experience (through my
appearance on the Channel 5
programme Brain Hospital: Saving Lives
and in this magazine). Paul and I want to
make sure that other families like ours,
who could benefit from treatments such
as DBS, have access to them.
treatment
questions
and answers
Q:
Why has my doctor
suggested I change my
epilepsy medicine?
A:
Your GP (family doctor) or
epilepsy specialist might
suggest that you try taking a
different epilepsy medicine if you
have been taking an epilepsy
medicine for a while, and are still
having seizures or side-effects.
Q:
Will I still need to take my
current medicine for a while
alongside my new one?
A:
The usual way to change
epilepsy medicine is to start
taking the new one at a low dose,
alongside your existing one.The
dose is gradually increased until
you reach the maintenance dose.
Then, the old epilepsy medicine is
gradually reduced.This can take
weeks or months to do.
Treatment questions and answers
If you change your epilepsy
medicine, you are at risk of
having more seizures than usual. You
could have withdrawal seizures from
stopping the old medicine, or the new
medicine might not work well for you.
Because of this, your doctor might
advise you to stop driving for a period
of time. You may also decide to avoid
activities such as some sports, until you
and your doctor feel sure that you have
got good seizure control.
Our web page epilepsy.org.uk/
safety provides more advice and tips
about maintaining personal safety.
dizziness, drowsiness and mood changes.
The risk that you will have sideeffects from your epilepsy medicine
depends on a number of things, including
which one(s) you take and any other
medicines you take.
When you collect your prescription,
there should, by law, be a patientinformation leaflet (PIL) which lists the
possible side-effects. You could get any
of those listed, but most people get few
or mild side-effects. Some people do not
get any side-effects at all.
There is more risk that you will get
side-effects in the early days of taking an
epilepsy medicine. Once your body has
had a few days or weeks to get used to
taking it, they should lessen or disappear
completely. If they don’t, talk to your
family doctor or epilepsy specialist. They
might make changes to your epilepsy
medicine to lessen the side-effects.
You can find information about
side-effects of individual epilepsy
medicines on the Medicine Guides
website (medicines.org.uk).
Q:
Q:
A:
A:
Q:
A:
Would changing my medication cause my seizures to return?
I’m worried that a newer epilepsy medicine might have
side-effects. How can I find out more?
All medicines can cause sideeffects. These are effects that a
medicine has on your body, in addition
to the job they are supposed to do. Sideeffects are usually unwanted and common
ones include headaches, feeling sick,
If I use another treatment such as vagus nerve stimulation,
ketogenic diet or deep brain stimulation
will I still need to take epilepsy medicines?
Your doctor is likely to
recommend that you take your
epilepsy medicines as usual for several
months. They will then talk to you about
any possible changes to them.
Scott’s
journey
Scott’s seizures were
frequent. In any threemonth period, he
would have 20 to 30
tonic-clonic seizures
and many absences
M
y journey started
on 20 February
2012 with tests to
find out more about my
epilepsy. My cubs (I’m a cub
scout leader) were fully
aware of my epilepsy, but
were more afraid of my
surgery than I was. To help
them, I sat down and
discussed their worries.
These included ‘how do I
know that they won’t take
all my brains away’ and ‘what
will happen if I lose too
much blood’. I easily put
their minds at ease.
Scott’s life
changing brain
surgery
Scott’s journey
My friends couldn’t believe that I
was excited about having my ‘head cut
open’. But brain surgery was an
opportunity that I might finally be free
of seizures.
On 22 February I had an operation
to implant two electrodes into my
brain. I was then ‘connected’ to a
computer that recorded all the
epileptic activity that happened over
the next few days.
During this period I had a few
seizures. These were unpleasant, but
instead of being upset, I was pleased that
the medical team could gather the
information they needed.
What the doctor saw
My neurologist discussed the results of
my assessments. I expected to be told
more about my seizures. I expected to
be told what my operation would
involve. I didn’t expect to be told that I
needed a pacemaker!
My heart showed signs of distress
during my seizures, so I was referred to
a cardiac (heart) doctor for an
operation to fit a pacemaker. This
probably saved my life.
No time to ponder my
surgery
Before my brain surgery, I had to be
monitored again. This time seizure
activity was monitored while I was sleep
deprived and not taking my epilepsy
medicines.
Unfortunately after a period of
assessment, I went into status epilepticus.
[Status epilepticus is a prolonged seizure.
It is a medical emergency because the
longer a seizure lasts, the less likely it is
to stop on its own. It’s also less likely to
stop with emergency medicines. Status
epilepticus can lead to brain damage, or
even death.]
I was rushed to intensive care and
put into a medically induced coma. This
was the only action that stopped my
seizures. Each time the doctors tried to
bring me around, I started seizing again.
My medical team decided to operate
immediately and I was taken into theatre
for epilepsy brain surgery. The team
knew that surgery wouldn’t cure my
epilepsy – but it would reduce my
seizure frequency and severity.
Life after brain surgery
I recovered in hospital for three months,
followed by another two months at
home. Thankfully the support of my
family, friends and church kept me going
and helped me remain positive.
I’m still taking my epilepsy medicines
but the good news is that I’ve only had
six seizures in the last two years. My life
now is far better than before.
I had a tough time but the surgery
was more than worth it. I feel better
and my friends and family have told me
they have noticed a significant
difference in my health, outlook and
quality of life.
George’s
journey
George has Doose
syndrome, a difficult
to treat form of
epilepsy. Mum Corrin
tells us how George
(aged six) is supported
by Dad Mark, Ruth
(aged ten), James
(aged three) and
Matthew (aged one) to
manage his ketogenic
diet. They also share
the hope that
George’s newest
treatment, a vagus
nerve stimulator
(VNS), will further
help control George’s
seizures
Finding a
treatment
for George –
a family affair
George’s journey
scan and a magnetic resonance imaging
(MRI) scan. All the test results were
normal. A few weeks later George had
an electroencephalogram (EEG), which
diagnosed epilepsy.
Our beautiful, healthy, above average,
clever child was suddenly presenting a
most scary symptom of something going
wrong in his brain. He was having
seizures for no known reason, with no
pattern, at any time. We were grateful to
discover that it was most likely that
George wasn’t experiencing any pain or
awareness during these seizures.
I
n November 2011, George had his
first tonic-clonic seizure. He was just
three years and 10 months old, and I
(Mummy) was 14 weeks pregnant with
our fourth child.
It was 7.15am on a Monday morning.
George was playing with his toys. It
happened totally out of the blue [a
prolonged seizure]. From that moment
all our lives were to change significantly.
Over the next few days George had
more seizures. He also had an
electrocardiogram (ECG), a
computerised (axial) tomography (CT)
A diagnosis of an epilepsy
syndrome
George was eventually diagnosed with
Doose syndrome. There were days
when George had hundreds of seizures.
We tried about a dozen drugs [epilepsy
medicines]. Each brought their own sideeffects. These included loss of speech,
loss of mobility, lack of concentration,
loss of appetite, nausea, sickness,
hyperactivity and aggressive behaviour.
As seizure types changed – the
medicine had to as well. As each drug
was introduced we had to decide
whether the seizure control (if any)
outweighed the side-effects. It was hard
to work out what was epilepsy and what
was the medicine. At one stage George
was on five anti-epileptic drugs and still
the seizures continued.
From the start of our epilepsy
journey our paediatric epilepsy nurse
George’s journey
specialist has closely worked alongside
us. Helping us understand epilepsy.
Helping us manage George. Explaining
the various treatment options available.
Helping us make informed decisions.
George’s new diet
In January 2012 George started the
modified Atkins ketogenic diet. It is a
very strict diet. Everything is weighed to
ensure the correct balance of carbs and
fat are achieved. The ‘modified Atkins’
part has allowed some flexibility with his
protein intake.
The ketogenic dieticians at Royal
Belfast Hospital for Sick Children
carefully studied George’s history. They
took into consideration his current diet
and set food targets and planned menus
to get us started.
This was a very anxious time –
learning a whole new regime. George
has four meals, eaten at around the same
times each day. Each meal has a specific
amount of carbs and fat. Three of the
meals also include a portion of protein.
Each night, at around 11pm, George
receives his final meal and we check the
ketone levels in George’s blood.
As a whole family, we have had to
embrace the diet. At the beginning we
had to be very strict with all the kids.
This was to make sure no mistakes were
made with George’s eating and drinking.
The fruit bowl had to be removed from
the kitchen table. No snacking between
meals. Everyone drinks the same carb
and sugar free juice. No sharing of food.
No commenting on how George’s food
is different to everyone else’s.
In school, the canteen staff provide
his ketogenic lunch. His classroom
assistant and teacher provide keto ice
lollies and distractions when birthday
cakes or food topics are in the
classroom. It is through these extra
efforts of the staff at his school, that
George copes so well socially. Over time
George has accepted that eating
anything outside what is given to him by
George’s journey
Mummy, Daddy, Granny or Mrs Lacey
will make him ill. We can now trust him
not to eat food that isn’t his. The diet
has not given George seizure freedom
but he is much brighter, alert and more
energetic. It has been challenging to the
family to achieve this dietary treatment
for George, but so worth it to see some
improvement.
Another big step for George
In December 2013 George had a vagus
nerve stimulator (VNS) fitted. This is set
to be on for 30 seconds and off for five
minutes all the time. It will take many
months to see if this will help George,
but his learning has already improved.
We are also noticing fewer seizures. We
are hopeful that this progress will
continue, and that in time we can stop
or reduce his medicines, under the
direction of the neurology team.
It has been a stressful few years
getting to know and understand
epilepsy. As well as learning to deal with
George’s condition, we have welcomed
baby Matthew and moved to a house
more suitable for George’s needs.
We have met many professionals
along the way and have a broad
understanding of many different
departments within the health service.
We are very thankful for all the care
we have received. George has good
days and bad days. He wears his
helmet every day, and uses a
wheelchair for long distances and
when he is post-ictal [recovering after
a seizure]. At the moment George is
on three epilepsy medicines, the
ketogenic diet and has a VNS implant.
We hope that in the future, George
will improve to such an extent that his
medical team can start to reduce the
number and dose of his epilepsy
medicines.
As a family we cannot change
George’s condition. We hope through
sharing George’s story we will change
the perception others have of epilepsy.
Epilepsy and your wellbeing
is a free, short, online course
for people with epilepsy.
Packed with simple and
practical steps including:
•
•
•
•
•
•
Seizure diaries and
setting goals
Your wellbeing
Seizure triggers
Taking epilepsy medicines
Stress and epilepsy
Memory and epilepsy
epilepsy.org.uk/wellbeing
can help you achieve balance in
your life and help you to live
better with epilepsy
epilepsy.org.uk/wellbeing
Want to learn
more about
epilepsy and
your wellbeing?
Photo posed by model
Gillian’s journey
My last seizure
Diagnosed with epilepsy as a baby, Gillian
experienced more than 13,900 absence
seizures in her life time. She spoke to
Morgan Mitchell about her last seizure.
One night I was supposed to meet
my friends. When I didn’t show up, they
became concerned and called the police.
The police broke into my house and
found me lying on the floor. I’d had a
seizure and been unconscious on the
floor for three days.
I decided that it was time to discuss
other treatments with an epilepsy
specialist. The specialist gave me two
options: try a different epilepsy medicine
or, consider surgery. I chose surgery.
In preparation for surgery I had a CT
scan [computerised (axial) tomography
scan]. This showed a calcium clot in my
left temporal lobe. This was the cause of
my seizures and would be removed
during surgery. However, the surgery
carried a small but real risk that I could
lose part of my vision.
The dose of my epilepsy medicines
was carefully reduced and I had an IQ
test. I always believed that I was less
intelligent than my friends and I thought
I couldn’t get a ‘proper’ job because of
my epilepsy. But I was pleasantly surprised.
The IQ tests revealed that I have above
average intelligence. I think that my
ability to perform and concentrate was
effected by the combination of epilepsy
medicines that I took.
I was in surgery for seven hours.
They cut from the front of my head, to
the back of my ear. In an attempt to
cover the healing incision [scar] I would
wear thick Alice bands. I still associate
Alice bands with my surgery. Whenever
I see someone wearing one, it makes me
cringe!
Once I had successfully recovered
from my surgery, my doctors started to
take me off my epilepsy medicines. First
my pills were halved, then quartered and
then stopped completely. Since the
surgery in 1992, I have been completely
seizure free.
I was really, really lucky, if you’re
suitable, I would recommend it. It freed
me. Now I’m not on any medication. I
wish I had done it years ago, it’s been a
cure for me.
Richard’s
journey
Photos posed by model
Richard was diagnosed
with epilepsy as a
baby. Unfortunately he
has never been seizure
free despite taking
many different
epilepsy medicines. In
this feature, Richard
talks openly about his
treatment with a
vagus nerve stimulator
(VNS). He also shares
his frustration at
waiting so long to be
told about other
possible treatments
My VNS isn’t
yet a cure, but
life is definitely
better
Richard’s journey
M
y journey to a new treatment
started with my epilepsy specialist
nurse. Over the years, she went
through (prescribed) every drug available
for my seizure type. Sadly, none of them
ever controlled my seizures. Finally, she
asked my neurologist to organise a long
video electroencephalogram (EEG) for me.
Not long after my EEG started – I had a
seizure. Thankfully, the doctors and nurses
collected all the evidence they needed
during my seizure. So I went home and
waited for my next appointment with
my neurologist.
At this point, we finally considered
other possible treatment options.
Unfortunately I was told that brain surgery
wasn’t an option. I was really upset at this
news. I expected to have brain surgery
and – in a way – I had got myself ready for
it. However, I was found suitable for VNS.
My consultant and surgeon described
the VNS and how it worked. But the way
they spoke about it terrified me. I thought
that it would be implanted in my brain –
which I didn’t like the sound of. Despite
being worried I decided that I wanted the
operation – anything to reduce my seizures.
When the day of my operation finally
arrived I was scared but determined. After
the operation, as I came out of the
anaesthetic, I had a seizure. This resulted in
a bit of damage to the top of my throat. As
a result, I wasn’t discharged until a few days
later when I could eat and drink properly.
My surgery wasn’t a cure – but a
definite improvement. Currently, instead of
having around two or three tonic-clonic
seizures a week, I have two or three a
month. (I might have a few partial [focal]
seizures too – but I can’t be sure exactly
how many). My seizures are now much
shorter in length, and I also recover faster
without a 24 hour headache afterwards.
At first I felt a tingling, whenever my VNS
‘worked’. Now I don’t really feel it at all.
Due to my improvement, my drug
[epilepsy medicine] doses have been
reduced. I think that this has improved my
memory. All in all, I feel a lot better in
myself. It’s really hard to put into words.
I just feel more aware, less tired and
generally better.
There’s just one question that I can’t
shake. Why did I go on, having seizure
after seizure, for so long without trying
other treatment options? I worked hard
in my thirties, to gain qualifications in IT.
However my epilepsy has stopped me
from working or developing a career. So
it’s not just the seizures – it’s the whole
impact of my uncontrolled epilepsy that
has lasted years.
I want to be clear – my epilepsy
specialist nurses have always been
wonderful. They really listened, and knew
how bad my epilepsy was. But I just don’t
understand why I wasn’t referred for other
treatments sooner. The fewer drugs I take,
fewer ambulance trips to hospital, less time
in A&E and fewer appointments with my
specialist, all save the NHS money in the
long run. And a better treatment helps
me to feel better and get on with my life.
Dr Greg Rogers
GP and Clinical lead for epilepsy at
Royal College of General Practitioners
How do I ask my doctor about other treatments?
How do I ask my doctor about
other potential treatments?
If you take epilepsy medicines, but are
still having seizures or side-effects, you
could ask for a review by your epilepsy
specialist. If you are not currently in the
care of an epilepsy specialist, you could
ask your GP (family doctor) to refer you
to one. There are many types of epilepsy
specialist, for example a GP with a
special interest in epilepsy, a neurologist
with expertise in epilepsy or an epilepsy
specialist nurse.
It is likely the epilepsy specialist will
review your seizures and treatment, to
make sure your diagnosis and treatment
are correct. This is important, as some
epilepsy medicines only work for some
types of seizures, and can make other
types worse.
If the epilepsy specialist can’t find the
right treatment for you, they may refer
you to an epilepsy specialist centre
(sometimes referred to as a tertiary
centre). You may also be referred to an
epilepsy specialist centre if:
• Your doctors are not sure about your seizure type, or epilepsy syndrome (a syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition)
• Your seizures haven’t been controlled with epilepsy medicine within two years of starting them
• You have tried at least two different epilepsy medicines, but are still having seizures
• You have, or are at risk of having, severe side-effects from your epilepsy medicine
• You have a psychological or psychiatric condition
• You have another problem with your brain, such as a tumour
• Your epilepsy is not difficult to control, but you are considering becoming pregnant
The Seize Control campaign can help you
to work more closely with your
healthcare professional such as your GP
or epilepsy specialist. Read our eight
steps to better treatment on the next
pages, before your appointment. Asking
a few specific questions could help you
make the right decisions about your
epilepsy treatment.
eight steps to
better treatment
1
2
3
Complete our free, short, online course, Epilepsy and your wellbeing. This course will help you to learn more about your epilepsy, how to get the most from your seizure diary and help you to set goals to improve your wellbeing. Seize control of your wellbeing at epilepsy.org.uk/wellbeing
Keep a seizure diary. Every time you have a seizure, make a note of the type, how long it lasted, what you were doing, and how you felt beforehand. In this way, you and your healthcare professionals will be able to see how many seizures you have had, and try to recognise any seizure triggers.
Keep a diary about how your epilepsy affects you. Make a note of tasks and activities that your epilepsy has stopped you from doing. For example, taking a day off work or school following a seizure. Side-effects from epilepsy medicines can also limit activities, so make a note of these too.
Eight steps to better treatment
4
5
6
7
8
Make a note of the time you take your medicines. This can help you and your healthcare professionals see if missed medicines, or taking them at different times, could be triggering your seizures. Also, make a note of any medicines you take for other conditions. The Epilepsy app can help you do this (epilepsy.org.uk/app).
Keep a note of your seizure and treatment history. This can show you and your healthcare professionals which treatments you have tried so far, and which have been most effective.
Make sure you always have an annual review. If you are not regularly seen by an epilepsy specialist make sure you always have an annual review with your GP, practice nurse, or specialist nurse. They will usually arrange a review with you, but if not, you can request one, using our template letter.
Go to your review with all the information you have collected about your epilepsy and treatment. Talk to your GP or nurse about your treatment and epilepsy care. Ask them to update your care plan and treatment goals. If you don’t have a care plan, you can get one from Epilepsy Action.
If needs be, ask to be referred to an epilepsy specialist. If you are still having seizures, side-effects
from your epilepsy medicines, or have any concerns about your epilepsy, ask your GP to refer you for advice. However, your GP doesn’t have to refer you, unless they feel it is in your best interests.
“After finding
the right (most
patient and
understanding)
man and the
right medication,
I’ve been seizure
free for 15
months and I’m
back behind the
wheel – so right
now, this is what
epilepsy looks
like to me!!”
You can access the template letter, seizure
diary and care plan template at
epilepsy.org.uk/seizecontrol or call the
campaigns team on 0808 800 5050
Matthew’s
journey
Many of us have to
make lots of decisions
when preparing for a
new arrival in the
family. Where should
our baby sleep? How
many size 0 babygrows
are too many? Which
pram? Thankfully, very
few of us have to
re-consider whether
or not to have brain
surgery. Matthew
shares his story
My son
inspired me to
seek seizure
freedom
Matthew’s journey
I
was diagnosed with epilepsy at 16
(while still at school). My seizures
didn’t feel severe. It wasn’t the physical
effects of my seizures that caused an
issue. It was the number of seizures I
was having. On average I’d have five or
six seizures every day, each lasting about
two minutes. It was inconvenient as I’d
lose track of what I was doing. But also,
the seizures left me feeling really drained.
Considering brain surgery –
are you kidding?
My neuropsychologist told me a few
times that I’d probably be suitable for
brain surgery. My meds [epilepsy
medicines] just didn’t stop my seizures.
I was reluctant to even consider it. I had a
job and didn’t want, and couldn’t afford,
time off. My employers have always been
really good and supportive – but still – I
didn’t want to take time off. As a result the
specialist said to me ‘just give us a nod when
you’re ready and we’ll take it from there’.
A couple of years later my
son was born and my outlook
changed
Like most new dads, I thought about
looking after my son. And how I wanted
to be able to do everything and go
everywhere with him, as he grows. I knew
then that I had to do something about
my seizures. I just decided to go for it.
Matthew’s journey
Brain surgery is a waiting
game
The process [to find out whether brain
surgery is a safe and suitable option]
takes much longer than you think. I made
an appointment with my specialist. He
then referred me to another doctor for
various tests. These tests were to show
the surgeons where the ‘problem’ was.
Pinpointing exactly where my seizures
happen. They also allowed the surgeons
to look at whether part of my brain
could be safely removed. And of course
to judge the likelihood of success,
whether the surgery would lead to
fewer seizures.
As the date for my surgery came
closer, I found things to help me feel
better. My op was at Salford Royal. I
normally receive my epilepsy care at
Salford. So I knew that the team had
done this type of surgery before, on
other people. I was also given help to
deal with my nerves and anxiety.
My brain surgery operation was in
2011. The surgery went pretty well – but
not perfect. They knew which bit of my
brain they needed to remove, but weren’t
able to remove the whole piece – so a
little bit was left behind.
After the surgery
I recovered really quickly. I was told that
I’d need about three months off work –
but I recovered well enough to return
to work after just three weeks. The
scars weren’t too bad either. If I kept my
hair longer you’d not notice them but I
like to keep it shorter. As a result you
can see them – if you look – but they’re
really not that bad. (Although when I’m
out in a bar with my mates, some
people see the scars and presume I’m a
bit of a thug). Honestly – they’re not
too bad.
So was my surgery a cure?
I knew it wasn’t 100 per cent foolproof
[there was a risk the seizures could
continue]. But I was seizure free for six
months after the surgery! I was amazed,
and despite myself, I thought I might be
seizure free.
But then I had my first seizure since
the surgery. When my seizure came on
16 October 2011 – I felt crushed – it
was awful. I knew that I wasn’t ‘cured’.
This was followed by my first bad
seizure in November 2013. Not only did
I have a seizure – but my seizure type
changed. I smashed my face as I fell to
the floor. As a result of this seizure, my
specialist readjusted my medication and
I’ve not had another seizure yet. [Note
from editor – this was Matthew’s first
ever tonic-clonic seizure].
Considering brain surgery?
My advice for anyone else preparing for
surgery is that you need to be positive.
But you can’t go into it thinking it’s a
100 per cent cure – because nothing is
100 per cent. I would definitely advise
someone in my situation to consider it.
Geoff ’s
journey
Geoff shares his story
of life before and ten
years after vagus
nerve stimulation
(VNS)
Vagus nerve
stimulation has
allowed me to
get on with life
Geoff ’s journey
M
y first seizure came out of the
blue, at the age of 16. I was in
the house, when my cousin
noticed that my lips had turned blue and
that I was completely still. Recognising
that I was having a prolonged absence
seizure, he phoned for an ambulance.
Five days later, I returned to the
hospital for a series of tests. The doctor
asked me about my medical and family
history. I was now 16, but as a 10 year
old, I fell from a moving bus. I hit my
head on a kerb and was rushed to
intensive care. We also spoke about two
of my relatives who have epilepsy.
My scariest ever seizure
My experience gets better eventually,
but I really want to share the story of
this seizure... I was 23, fit and had just
played in a five-a-side football match.
After the match, I went into the
changing rooms. Apparently, I was acting
odd and yelling all sorts of random
things, when I suddenly collapsed onto
the tiled floor and had a seizure.
My jaw took the full brunt of the fall,
which knocked my teeth out of
alignment. I came to, terrified and
covered in blood. I was rushed to
hospital as a medical emergency, and
admitted to a ward where I spend five
days drinking through a straw. I should
have been sitting my final university
exams with my course mates.
That seizure marked the start of a
struggle to control my seizures. I was
terrified of having another accident
during a seizure. My doctors started me
on many different epilepsy medicines
and different combinations of medicines.
But the seizures just continued for years.
Many days, I had around nine seizures. It
was a time of unemployment, neverending seizures and low self-esteem.
Is brain surgery a suitable
option?
I was referred to a hospital in London
(2004). Here, I had a number of tests to
look at whether brain surgery might
reduce or stop my seizures.
Unfortunately, the results showed that
brain surgery wasn’t a suitable option. The
piece of my brain causing my epilepsy was in
the area responsible for my communication
skills. Any attempts to remove this piece of
my brain carried a very high risk to my
speech and language skills.
Not the end but a different
journey
We chatted about vagus nerve
stimulation (VNS), which I was told was
a possible option. To be honest, I was
scared about VNS. I was worried about
having an operation and about scarring.
But I wanted seizure freedom.
The operation
In 2004 I had the operation to fit my
VNS. I remember a few seconds, just
before the op, when I was being put to
sleep. I remember them injecting me.
Geoff ’s journey
The next thing I remember was when
they removed my blanket, two hours
after the operation finished. So it was
done. I was the proud owner of a VNS.
I stayed in hospital for five days –
mainly due to exhaustion – but I
improved pretty quickly. My voice was
really hoarse, but the hoarseness quickly
faded, (although even now my voice goes
a little funny if I swipe the magnet across
my VNS). I was worried about scarring,
but the scar is minimal. The only real
thing I’m aware of is that I’ll need another
operation to fit a new battery in 2016.
So in the meantime I’ve stepped up the
effort to make sure I’m fit and healthy.
So what were the benefits?
I’m still not seizure free, but quickly
after having my VNS implanted, I saw a
massive improvement in the number and
length of my seizures. I no longer have
cluster (groups of) seizures or
prolonged seizures (I used to have nine
seizures in a few hours – leaving me
exhausted). I haven’t had a tonic-clonic
seizure since, and I recover much more
quickly after a seizure.
Now I tend to have one, quick
absence seizure a day. It lasts around
15 – 30 seconds. A huge improvement!
My family and friends no longer panic
when they see me have a seizure, and
ambulances are no longer called.
My VNS has allowed me to do many
things during the last ten years. I have
taken part in a ‘sleep out’ for a homeless
charity and joined a local theatre company.
I also spent five years teaching English in
Slovakia and the Czech Republic –
something which I really loved doing. My
epilepsy wasn’t a barrier at all, and my
teaching colleagues were very supportive.
I’m more positive since having
my VNS implanted
I’m much more positive about my
epilepsy. I can talk to people and
potential employers to show that my
seizures aren’t an issue. I hope that my
confidence and low seizure frequency
will lead to full employment in the
health and social care sector.
There were so many times that I was
depressed and anxious. I hope that I’ve
shown that – honestly – there is light at
the end of the tunnel. I’m still searching
for seizure freedom. My consultant and I
are now considering the use of the
epilepsy medicine, Vimpat, alongside my
VNS and other medicines.
My advice for other people
looking to seize control
Don’t be afraid to try new treatments –
the odds are so much in your favour. Just
go with it. If your tablets aren’t working,
then it’s time to speak to your consultant.
Don’t be put off by how busy they are,
or because you think that you take up too
much of their time. Go and talk to them.
Tell them about your seizures and their
impact, and ask them to help you find out
what can be done to help you.
Epilepsy in numbers
87 people
each day diagnosed
with epilepsy
Of those:
45 will become seizure free
16 could become seizure free with the right
medication and treatment
26 won’t become seizure free with current
medication and treatment
Epilepsy across the UK
England 1 in 105 people have epilepsy
Scotland 1 in 97 people have epilepsy
Wales 1 in 94 people have epilepsy
Northern Ireland 1 in 90 people have epilepsy
1 in 97
9 out of 10 people are unable
to give full and correct first aid
to a person having an epileptic
seizure
1 in 4 would try to put something in their
mouths – which is dangerous
1 in 90
1 in 105
1 in 94
Share video
epilepsy.org.uk/action
With the right advice and healthcare 61 of the 87 people diagnosed today could live their
lives seizure free. We can offer ongoing help and support to the 26 who aren’t seizure free.
You can make that difference.
Text FUTURE 87 to 70500 to donate £3 towards the cost of this life-changing support.
Texts cost £3 plus your standard network rate. Epilepsy Action (reg. charity number 234343) will receive 100 per cent
of your donation. UK only.
Torie’s
journey
Torie was diagnosed
with left temporal lobe
epilepsy at the age of 10.
Her frequent seizures
had a real impact on
her quality of life
W
hat is that odd
behaviour?
My parents
didn’t notice my behaviour
was different to any other
children until I was about 10.
I remember having ‘funny
feelings’ from the age of
about six, but my parents
hadn’t noticed. It turns out
these were absence seizures.
The older I got, the more
severe my epilepsy became.
The fact that my drugs
[epilepsy medicine] had
never controlled my
seizures was becoming a
real issue. During my 20s I
started to have generalised
tonic-clonic seizures, while
also continuing to have
absences. My seizures were
very unpredictable. In my
late 20s/early 30s I could
have six or seven a month
or absolutely none at all.
I’m achieving
so many firsts
Torie’s journey
Enough was enough!
The impact of the seizures was doing my
head in (excuse the pun). During these
newer seizures [tonic-clonic seizures]
I could stop breathing. I was also injured
a few times or found myself in
dangerous situations. I fell on a railway
line. I smashed my collarbone. Quite
honestly the epilepsy was taking over
my life and certainly contributed to me
developing depression. I felt that life
wasn’t worth living. I was in full time
work, I lived independently, but I was
constantly exhausted and wanted more
out of life. And seizure freedom was
desperately needed.
I told all of this to my neurologist.
I’d tried so many epilepsy medicines that
had not controlled my epilepsy. So he
brought up the option of brain surgery.
Although nervous, I was very
excited before my operation – a
temporal lobe resection [in 2013].
In fact I even took pictures of my
shaved head and shared this with my
friends on Facebook! This was my way
of coping, but my mates were more
nervous than I was!
Not quite straight forward,
but no regrets
I ended up having one major operation,
then two more to stop a cerebrospinal
fluid leak [this is when the fluid
surrounding the brain and spinal cord
leaks.] However, I was back home after
one and a half weeks.
Today I still take all my anticonvulsants
[epilepsy medicines] and I haven’t had
one seizure since the operation! I have
had a few auras – but I’m absolutely fine
with that.
After the age of 14, I couldn’t ride my
bike, after an absence seizure left me
lying in the road. But I’ve recently
started riding again. I want to go sky
diving again too! These are things I
didn’t dare consider before the
operation.
What I know now – but wish
I’d known before
Surgery was definitely the right option
for me. I wish that I’d had it sooner! It
was a very emotional time and still is in
some ways – a bit like starting your life
again. It has been so important to have
emotional support.
People who are considering surgery
must be aware of all the risks, including
the risk that they might experience
depression after the operation. I learned
that it would have been ideal to have
someone – a nurse – there to help me
in the house during the first week after
my operation. You must also take those
painkillers (you will need them!)
What I could do for the first few
weeks was limited. I’d say just give
yourself time and don’t put yourself
under too much pressure to do
everything until you’re ready.
Together
we’re stronger
Epilepsy Action is
the UK’s biggest
membership movement
for epilepsy.
Add your voice and be
part of a brighter future
for everyone affected by
epilepsy: Join today
from as little as £1 a
month.
epilepsy.org.uk/join
or call free on
0808 800 5050
© Copyright Epilepsy Action 2014
Supported by Cyberonics through an
educational grant. Cyberonics developed and
markets the Vagus Nerve Stimulation (VNS)
therapy system. Cyberonics has no editorial
control on the content.
Epilepsy Action
New Anstey House, Gate Way Drive,
Yeadon, Leeds LS19 7XY
tel. 0113 210 8800
email [email protected]
Epilepsy Action is a working name of
British Epilepsy Association.
A company limited by guarantee
(registered in England No. 797997)
Registered charity in England (No. 234343)
All of Epilepsy Action’s
information has been produced
under the terms of The
Information Standard. Further
information, and references for
the research and materials used
to put it together, is available from
the Epilepsy Helpline on
freephone 0808 800 5050
or at [email protected]

Still having seizures despite taking your medication?

Transcription

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