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Succeeding With Epilepsy
Being told that you have epilepsy can
be overwhelming. And learning about
epilepsy and its treatment can be
confusing—especially when you’re still
trying to come to terms with your
diagnosis. This guide will introduce
you to some basic information about
epilepsy and help you take your first
steps toward managing the challenges
of living with epilepsy.
What Is Epilepsy?
Epilepsy is a condition in which
brain cells produce and send abnormal
electrical signals to parts of the body
that control movements, thoughts and
feelings. These abnormal signals—which
are faster, stronger and more disorganized
than normal brain signals—cause seizures.
There are many types of epilepsy, each
with its own types of seizures.
In the United States, about 200,000
people are diagnosed with epilepsy
each year, and about 3 million people
are living with epilepsy. Epilepsy may be
caused by an illness, an injury to the
brain or abnormal brain development,
but for most people with epilepsy, there
is no identifiable cause. There is no cure
for epilepsy, although a large percentage
of people have their seizures controlled
by medication.
What Is a Seizure?
A seizure is a strange sensation, movement, behavior or feeling caused by
abnormal electrical signals from the brain.
The characteristics, duration and
severity of a seizure depend, in part, on
what part of the brain produces the
abnormal signals. Some people with
Epilepsy is a condition in
which brain cells produce
and send abnormal electrical
signals to parts of the body
that control movements,
thoughts and feelings.
epilepsy have just one type of seizure,
while others have more than one type.
There are many types of seizures, most
of which fall into two main categories:
partial and generalized.
• Partial seizures are caused by abnormal
electrical signals that come from a
specific part of the brain. More than
50 percent of people with epilepsy
have partial seizures. There are two
types of partial seizures:
– Simple partial seizures can cause
twitching, disturbances in the senses
(hearing, taste or vision, for example)
or sudden strong emotions. How a
simple partial seizure looks or feels
depends on what part of the brain is
producing abnormal signals. People
who have this type of seizure do not
lose consciousness or forget what
happened.
– Complex partial seizures impact parts
of the brain that affect alertness and
awareness. People who have complex
partial seizures have changes in consciousness and may make repetitive
movements such as blinking, picking
at their clothes or walking in circles.
• Generalized seizures are caused by
abnormal electrical activity throughout
both sides of the brain. In some cases,
partial seizures can spread to both
sides of the brain and become
generalized. There are several types
of generalized seizures, most of which
affect muscle function:
– Absence seizures involve a few seconds
of staring, sometimes accompanied by
twitching muscles. People who have
absence seizures are unaware of what
is happening but then are normal and
alert immediately afterward.
– Atonic seizures involve loss of muscle
tone, which causes a person to
suddenly slump over or collapse. They
are common in children or adults with
widespread brain injuries.
– Myoclonic seizures involve unsustained,
repeated jerking movements of the
muscles that are less organized than
the rhythmic jerks seen during a
generalized tonic-clonic seizure.
– Tonic-clonic seizures start with loss of
consciousness followed by stiffening
and then jerking of the muscles. They
generally last one to two minutes.
Questions to Ask Your
Health Care Professional
1. How will epilepsy affect my
normal activities, such as working
and driving?
2. How can I exercise and stay active
with epilepsy?
3. Should I see a specialist about my
epilepsy?
4. How should I prepare for future
appointments?
5. Are there any special instructions
for filling my prescription and
taking my prescription?
6. If I’m not happy with how my
medication is working, is there
another medication I can switch
to or try in combination with the
current medication?
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The person’s eyes will roll up at the
beginning of the seizure and the
person will typically emit a cry due
to the contraction of the respiratory
muscles. They used to be called
grand mal seizures.
– Tonic seizures involve stiffening of
the muscles and may cause loss of
consciousness. Arms or legs may
extend forward or up into the air, but
the clonic (jerking) phase is absent.
Controlling Seizures
It’s important to start treatment as
soon as possible after epilepsy is diagnosed, because the longer seizures go
untreated, the harder they may be to
control. Medications used to control
seizures are called antiepileptic drugs, or
AEDs for short. The AED your health
care provider prescribes will depend on
the type and frequency of your seizures.
Often, if the first AED your health care
provider prescribes does not control the
seizures, then they may add another
AED to your treatment. This is known as
combination therapy. For most people, a
single AED at the right dose will control
seizures; however, some people may
require more than one AED. Your age,
lifestyle and plans for pregnancy will
also factor into decisions about AEDs.
Like most medications, AEDs have side
effects, most of which are minor and may
get better over time. These include
fatigue, dizziness, sleepiness, weight gain
and problems with mood and thinking.
AEDs can also reduce the effectiveness of
some oral contraceptives.
Resources
Centers for Disease Control and PreventionEpilepsy
1-800-232-4636
www.cdc.gov/Epilepsy
Epilepsy Advocate
www.epilepsyadvocate.com
Epilepsy Foundation
1-800-332-1000
www.epilepsyfoundation.org
National Institute for Neurological Disorders
and Stroke
1-800-352-9424
www.ninds.nih.gov
AEDs can have serious or life-threatening side effects, which include severe
allergic reactions or depression and/or
suicidal thoughts. Be sure to notify your
health care provider if you develop a rash
while taking an AED or if you feel
depressed or are thinking about suicide.
Finding the right AED, or combination
of AEDs, for your type of epilepsy gives
you the best chance of controlling your
seizures. The goal of epilepsy treatment
is to be free of seizures with minimal side
effects, so it’s important that you work
with your doctor to find options that
work for you. You may be able to make
further improvements in your seizure
control by taking the following steps:
• Keep an “epilepsy diary”—on paper,
online or using your smart phone—to
keep track of:
– Seizures—when they occur, what
happens, what you’re doing, if you
experience strange sensations
before they occur, where you are in
your menstrual cycle—anything that
will help you and your health care
provider better understand your
unique “seizure profile.”
– Medications side effects—Does the
time you take your medications
impact your side effects? Are you
experiencing any new side effects or
changes in side effects?
– Changes in how you feel physically
and emotionally.
– Share your epilepsy diary with your
health care provider, and work with
him or her to make improvements in
your treatment. Speak up if you’re
experiencing seizures or medication
side effects.
• Take your AED as prescribed, and don’t
stop taking it without first talking with
your health care provider.
• Talk to your health care provider and
pharmacist about the difference
between brand name and generic
AEDs. Sometimes differences in how
drugs are prepared can affect how well
they control seizures.
• Get plenty of sleep on a regular
schedule. Sleep deprivation is a wellknown “trigger” for seizures, even
among people who otherwise have
good seizure control.
When Should I See a Specialist?
Primary care physicians often treat
patients with epilepsy, and working
with your regular health care
provider, whom you know and
trust, can have benefits. In certain
circumstances, when patients are
struggling to achieve the goal of
epilepsy treatment—seizure freedom
with minimal side effects—your
primary health care provider may
refer you to a doctor who specializes
in caring for people with epilepsy.
Here are a few examples:
• Neurologists specialize in the brain
and nervous system. Your primary
care doctor will probably refer you
to a neurologist for exams and
tests (a brain scan, for example) to
determine what type of epilepsy
you have and the best antiepileptic
drug to control your seizures.
• Epileptologists are neurologists who
specialize in epilepsy. They often
treat patients whose seizures are
not under control or who have a
type of epilepsy that requires
specialized treatment.
• Epilepsy nurses are nurses who work
with neurologists and epileptologists
and specialize in epilepsy. They
often have unique insight and
experience with epilepsy, including
advanced knowledge of the condition, information about treatment
options and medication side effects.
• Neurosurgeons treat brain and
nervous system disorders with
surgery. In some cases, seizures
that cannot be controlled with
medication can be treated with
surgery on the part of the brain
that causes seizures.
• Neuropsychologists and neuropsychiatrists work with patients who
have mental and emotional issues
related to seizures and/or epilepsy
treatment.
How Epilepsy May Affect Your Life
Even for people whose seizures are
well-controlled, living with epilepsy can
present some challenges. It’s important
to prepare for the unique challenges
by learning as much as you can and
developing strategies. Here are a few
of the issues you might face:
• Most people with epilepsy are able to
work most jobs, and their right to do
so is protected by the Americans with
Disabilities Act. However, you may be
prevented from doing certain jobs
because of safety considerations, and
uncontrolled seizures can sometimes
make it difficult for you to work at all.
You can learn about epilepsy and
employment at the Epilepsy Foundation
website at www.epilepsyfoundation.org.
• Epilepsy and its treatment pose unique
challenges to women:
– Epilepsy can affect a woman’s
menstrual cycle; and hormonal
changes associated with the
menstrual cycle, menopause and
hormone replacement can make
seizures worse.
– AEDs can decrease the effectiveness
of oral contraceptives.
– AEDs taken during pregnancy can
cause birth defects.
In spite of these issues, most women
with epilepsy have normal sexual
health, uneventful pregnancies,
healthy babies and the option to
breastfeed. If you’re considering
pregnancy, you will need to work
closely with your health care provider
to protect yourself and your unborn
baby from the effects of seizures
and AEDs.
• If you participate in sports, fitness or
other recreational activities, you may
need to make some changes in your
routine. Activities such as swimming or
rock climbing, for example, can be
potentially life-threatening for people
who have seizures. Talk with your
health care provider, teammates and
coaches about how you can safely
participate, and then get out there and
have fun!
• People with epilepsy may experience
low self-esteem, depression and
anxiety. These issues are related to
many aspects of epilepsy itself, the
treatments, fear of having a seizure,
social isolation and impacts on your
lifestyle that you cannot change (not
being allowed to drive, for example).
Talk to your health care provider about
your concerns.
• You might not be able to drive
until your seizures have been wellcontrolled for a certain time. This can
have a significant impact on your
ability to work and go to school, take
care of your family, socialize and travel.
States have various licensing requirements for people with epilepsy. You
can find driver information for your
state at the Epilepsy Foundation website at www.epilepsyfoundation.org.
Sources Consulted
Epilepsy Foundation. Epilepsy and Seizure Statistics. http://www.epilepsyfoundation.org/about/statistics.cfm.
Accessed June 2, 2011.
Seizures and Epilepsy: Hope Through Research. National Institute of Neurological Disorders and Stroke.
www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm. Accessed April 15, 2011.
Generalized tonic-clonic seizure. National Institutes of Health.
http://www.nlm.nih.gov/medlineplus/ency/article/000695.htm. Accessed June 1, 2011
Targeting Epilepsy: Improving the Lives of People with One of the Nation's Most Common Neurological Conditions:
At a Glance 2010. Centers for Disease Control and Prevention.
http://www.cdc.gov/chronicdisease/resources/publications/AAG/epilepsy.htm. Accessed April 15, 2011.
Fisher R and Saul M. Overview of Epilepsy. Epilepsy.com.
http://www.epilepsy.com/pdfs/Epilepsy-Handout.pdf. Accessed April 15, 2011.
Transportation. Epilepsy Foundation. www.epilepsyfoundation.org/living/wellness/transportation/. Accessed April 15, 2011.
Employment. Epilepsy Foundation. www.epilepsyfoundation.org/living/wellness/employment/. Accessed April 15, 2011.
Crawford P. Best practice guidelines for the management of women with epilepsy. Epilepsia. 2005; 46:117-124.
McCagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning. Epilepsy Research. 2009;86:1-14.
This program is sponsored by UCB, Inc.
Learn more on living well with epilepsy by visiting www.HealthyWomen.org/epilepsy
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