What is refractory epilepsy?
People with epilepsy have seizures. During a seizure, the nerve cells in the brain don't communicate like they should. The usual electrical activity in the brain changes. These seizures may last a few seconds or a few minutes.
Some people with epilepsy will have or will one day develop refractory epilepsy. This means that medicines don't work well, or at all, to control the seizures.
If you have refractory epilepsy, the type of seizures you have may affect your treatment. Seizures may be:
Primary (generalized) seizures. This means they involve both sides of your brain.
Partial (focal) seizures. This means seizure activity starts in a smaller part of your brain. It may later spread out to a wider area.
Refractory epilepsy can have a big effect on your life. People with this type of epilepsy may have trouble at work or school. They may worry a lot about when their next seizure will come. They may also have injuries that result from their seizures. If your healthcare provider thinks you have refractory epilepsy, he or she may suggest that you visit a medical center that specializes in epilepsy.
What causes refractory epilepsy?
Some seizures have known causes,
such as head injuries, infections, fevers, or brain tumors. But often the cause of
seizures in epilepsy is not known.
In the same way, it is not clear
why some people with epilepsy are not helped by antiepilepsy medicines. Or why these
medicines sometimes stop working. The electrical activity in the brain during a seizure
might get so high that medicines are no longer able to control it. But why this happens
is not known.
What are the symptoms of refractory epilepsy?
The symptoms of a seizure can
Convulsions, or shaking movements
Loss of consciousness
Loss of bowel or bladder control
Uncontrolled eye movements
Staring into space
Muscle rigidness, tremors, or
Odd behavior (such as screaming or
If you still have seizures while
you're taking medicine for them, you may have refractory epilepsy.
How is refractory epilepsy diagnosed?
Your healthcare provider will likely ask you many questions about your seizures. You will likely also have a test called an electroencephalogram (EEG). This involves placing electrodes on your scalp to measure your brain's activity. Sometimes, the EEG can be watched for long spans of time at home or in the hospital.
Your healthcare provider may also want you to have a CT or MRI scan of your brain. If you eventually need surgery to treat the problem, your healthcare provider may do more tests like these to find out where your seizures are starting.
You will need to work closely with your healthcare provider to find out whether your epilepsy is refractory. Your provider may need to watch you closely during more seizures to try several medicines before he or she feels your condition is refractory. Your healthcare provider may want you to check in often to report your symptoms as you try different medicine doses.
How is refractory epilepsy treated?
Your healthcare provider may
suggest that you take other antiepilepsy medicine. You may take it alone or with others
you are already taking. There are many different medicines in this class. Some that may
be tried are:
If medicines aren't helping with
your seizures, you may need:
Surgery. Surgery may be very helpful
if you have refractory partial epilepsy and the part of the brain where the seizures
start can be found and safely removed. Your healthcare provider may advise surgery if
you still have seizures after trying several antiepilepsy medicines. During the
procedure, the healthcare provider will take out the part of your brain that's
starting the seizures.
Electrical stimulation. If you can't
have or don't want brain surgery, your healthcare provider may suggest vagus nerve
stimulation (VNS) with an implantable device. The device is placed under your skin in
your chest. Wires connect it to the vagus nerve in your neck. It sends a current to
the nerve. With this device, you may have fewer seizures. It may also help lessen the
severity of a seizure that has already started.
Can refractory epilepsy be prevented?
It might not be possible to prevent
all of your seizures. But it is very important to use medicines exactly as your
healthcare provider directs. Using your medicines the right way may help them work
better to control your condition.
Living with refractory epilepsy
Living with refractory epilepsy can
be hard. People with this health problem may worry a lot about when their next seizure
will come. They may have trouble at work or school. They may no longer be allowed to
drive. They may also have injuries that result from their seizures. It is important to
do what you can to limit your chances of injury.
A special diet called a ketogenic
diet may help control your seizures. This type of diet is high in fats and low in
carbohydrates. If you follow this diet, you will need to work closely with your
healthcare provider and take supplements of certain nutrients as needed.
When should I call my healthcare provider?
Be sure to talk with your
healthcare providers about when you should call. They will likely tell you to call
You continue to have seizures.
Your seizures become worse in intensity or frequency.
You have new symptoms during or after your seizures.
Key points about refractory epilepsy
Refractory epilepsy occurs when your
antiepilepsy medicines are no longer controlling your seizures. Often the cause of
refractory epilepsy is not known.
Your healthcare provider will likely
give you other medicines to try to get your seizures under control. If this does not
work, other options may be surgery to remove the part of the brain where the seizures
start or electrical stimulation of a nerve leading to the brain.
Tips to help you get the most from
a visit to your healthcare provider:
Know the reason for your visit and
what you want to happen.
Before your visit, write down
questions you want answered.
Bring someone with you to help you ask
questions and remember what your provider tells you.
At the visit, write down the name of a
new diagnosis, and any new medicines, treatments, or tests. Also write down any new
instructions your provider gives you.
Know why a new medicine or treatment
is prescribed, and how it will help you. Also know what the side effects are.
Ask if your condition can be treated
in other ways.
Know why a test or procedure is
recommended and what the results could mean.
Know what to expect if you do not take
the medicine or have the test or procedure.
If you have a follow-up appointment,
write down the date, time, and purpose for that visit.
Know how you can contact your provider
if you have questions.