Pediatric neurologist Lily Wong-Kisiel, M.D., answers the most frequently asked questions about epilepsy.
Epilepsy is a syndrome diagnosis. It's a symptom that describes brainwave abnormalities. There are underlying causes that need to be evaluated. MRI of the brain to look for structural abnormality, EEG to look at characteristics of the brainwave activity so the physician can categorize which type or types of seizure the patient has. Then there are, in some children, genetic causes, neurometabolic causes or auto-immune causes that can be looked at.
A seizure action plan is a roadmap for nurses and teachers at school to help your child should a seizure happen at school. It includes information about what type of seizure, what your child's seizure looks like, and if there is any anti-seizure medication that should be used while the seizure is happening to shorten the seizures or how to contact the family should prolonged seizures happen.
So most seizures are brief. Depending on the patient, there are absence seizures that are five to six seconds. Other patients may have generalized tonic-clonic seizures, which last two to three minutes. Those short, brief seizures, although it may feel like a lifetime for parents, they do not cause negative impact on growth and development. However, we do have to worry about prolonged seizures that are greater than five minutes or multiple seizures, generalized tonic-clonic seizures, more than three in an hour, in which case, your doctor may talk to you about a seizure action plan.
This depends on the seizure type. For the absence seizures, which are subtle staring, this depends on your observation of how often this is happening to your child. For those patients where it's not possible or practical to monitor all the time, it is helpful to ask and talk to your physician about EEG monitoring with video ongoing. This could be helpful for those subtle seizures that are less detectable by visual inspection. For those patients who have nocturnal seizures, where it's not practical to monitor consistently when everyone is asleep, video EEG monitoring can also be quite helpful in determining the seizure frequency. For those patients who have generalized tonic-clonic seizures where there are convulsive movements, there are FDA-cleared devices, wearable devices, that can detect these generalized tonic-clonic seizures based on movements.
About a third of the patients with epilepsy can continue to have seizures despite appropriate treatment. In those patients, evaluation for surgery can be an option. Epilepsy surgery can be an option for those patients who have a focal epilepsy, where a focus can be identified and safely removed. Epilepsy surgery is also an option for certain types of generalized epilepsy, where disconnection surgery can be performed.
First of all, be prepared with your questions when you come to your clinic visits. Come with your observation of the different seizure type or types that you've observed, know what the duration of the seizures are and have a seizure calendar so that you and your physician and your care team can review the frequency of your seizures.
Diagnosing your condition
EEG brain activity
An EEG records the electrical activity of the brain via electrodes affixed to the scalp. EEG results show changes in brain activity that may be useful in diagnosing brain conditions, especially epilepsy and other seizure disorders.
A CT scan can be used to visualize nearly all parts of the body and is used to diagnose disease or injury as well as to plan medical, surgical or radiation treatment.
Pinpointing seizure location
This example shows SPECT scans taken during and between seizures. The differences represent areas where blood flow increased during the seizure. Once identified, that location is fitted onto an MRI image of the brain.
To diagnose your condition, your doctor will review your symptoms and medical history. Your doctor may order several tests to diagnose epilepsy and determine the cause of seizures. Your evaluation may include:
- A neurological exam. Your doctor may test your behavior, motor abilities, mental function and other areas to diagnose your condition and determine the type of epilepsy you may have.
- Blood tests. Your doctor may take a blood sample to check for signs of infections, genetic conditions or other conditions that may be associated with seizures.
Your doctor may also suggest tests to detect brain abnormalities, such as:
Electroencephalogram (EEG). This is the most common test used to diagnose epilepsy. In this test, electrodes are attached to your scalp with a paste-like substance or cap. The electrodes record the electrical activity of your brain.
If you have epilepsy, it's common to have changes in your normal pattern of brain waves, even when you're not having a seizure. Your doctor may monitor you on video when conducting an EEG while you're awake or asleep, to record any seizures you experience. Recording the seizures may help the doctor determine what kind of seizures you're having or rule out other conditions.
The test may be done in a doctor's office or the hospital. If appropriate, you may also have an ambulatory EEG, which you wear at home while the EEG records seizure activity over the course of a few days.
Your doctor may give you instructions to do something that will cause seizures, such as getting little sleep prior to the test.
- High-density EEG. In a variation of an EEG test, your doctor may recommend high-density EEG, which spaces electrodes more closely than conventional EEG — about a half a centimeter apart. High-density EEG may help your doctor more precisely determine which areas of your brain are affected by seizures.
- Computerized tomography (CT) scan. A CT scan uses X-rays to obtain cross-sectional images of your brain. CT scans can reveal abnormalities in the structure of your brain that might be causing your seizures, such as tumors, bleeding and cysts.
- Magnetic resonance imaging (MRI). An MRI uses powerful magnets and radio waves to create a detailed view of your brain. Your doctor may be able to detect lesions or abnormalities in your brain that could be causing your seizures.
- Functional MRI (fMRI). A functional MRI measures the changes in blood flow that occur when specific parts of your brain are working. Doctors may use an fMRI before surgery to identify the exact locations of critical functions, such as speech and movement, so that surgeons can avoid injuring those places while operating.
- Positron emission tomography (PET). PET scans use a small amount of low-dose radioactive material that's injected into a vein to help visualize metabolic activity of the brain and detect abnormalities. Areas of the brain with low metabolism may indicate where seizures occur.
Single-photon emission computerized tomography (SPECT). This type of test is used primarily if you've had an MRI and EEG that didn't pinpoint the location in your brain where the seizures are originating.
A SPECT test uses a small amount of low-dose radioactive material that's injected into a vein to create a detailed, 3D map of the blood flow activity in your brain during seizures. Areas of higher than normal blood flow during a seizure may indicate where seizures occur.
Doctors may also conduct a form of a SPECT test called subtraction ictal SPECT coregistered to MRI (SISCOM), which may provide even more-detailed results by overlapping the SPECT results with a patient's brain MRI.
- Neuropsychological tests. In these tests, doctors assess your thinking, memory and speech skills. The test results help doctors determine which areas of your brain are affected.
Along with your test results, your doctor may use a combination of analysis techniques to help pinpoint where in the brain seizures start:
- Statistical parametric mapping (SPM). SPM is a method of comparing areas of the brain that have increased blood flow during seizures to normal brains, which can give doctors an idea of where seizures begin.
- Electrical source imaging (ESI). ESI is a technique that takes EEG data and projects it onto an MRI of the brain to show doctors where seizures are occurring.
- Magnetoencephalography (MEG). MEG measures the magnetic fields produced by brain activity to identify potential areas of seizure onset.
Accurate diagnosis of your seizure type and where seizures begin gives you the best chance for finding an effective treatment.
Doctors generally begin by treating epilepsy with medication. If medications don't treat the condition, doctors may propose surgery or another type of treatment.
Most people with epilepsy can become seizure-free by taking one anti-seizure medication, which is also called anti-epileptic medication. Others may be able to decrease the frequency and intensity of their seizures by taking a combination of medications.
Many children with epilepsy who aren't experiencing epilepsy symptoms can eventually discontinue medications and live a seizure-free life. Many adults can discontinue medications after two or more years without seizures. Your doctor will advise you about the appropriate time to stop taking medications.
Finding the right medication and dosage can be complex. Your doctor will consider your condition, frequency of seizures, your age and other factors when choosing which medication to prescribe. Your doctor will also review any other medications you may be taking, to ensure the anti-epileptic medications won't interact with them.
Your doctor likely will first prescribe a single medication at a relatively low dosage and may increase the dosage gradually until your seizures are well controlled.
There are more than 20 different types of anti-seizure medications available. The medication that your doctor chooses to treat your epilepsy depends on the type of seizures you have, as well as other factors such as your age and other health conditions.
These medications may have some side effects. Mild side effects include:
- Weight gain
- Loss of bone density
- Skin rashes
- Loss of coordination
- Speech problems
- Memory and thinking problems
More-severe but rare side effects include:
- Suicidal thoughts and behaviors
- Severe rash
- Inflammation of certain organs, such as your liver
To achieve the best seizure control possible with medication, follow these steps:
- Take medications exactly as prescribed.
- Always call your doctor before switching to a generic version of your medication or taking other prescription medications, over-the-counter drugs or herbal remedies.
- Never stop taking your medication without talking to your doctor.
- Notify your doctor immediately if you notice new or increased feelings of depression, suicidal thoughts, or unusual changes in your mood or behaviors.
- Tell your doctor if you have migraines. Doctors may prescribe one of the anti-epileptic medications that can prevent your migraines and treat epilepsy.
At least half the people newly diagnosed with epilepsy will become seizure-free with their first medication. If anti-epileptic medications don't provide satisfactory results, your doctor may suggest surgery or other therapies. You'll have regular follow-up appointments with your doctor to evaluate your condition and medications.
When medications fail to provide adequate control over seizures, surgery may be an option. With epilepsy surgery, a surgeon removes the area of your brain that's causing seizures.
Doctors usually perform surgery when tests show that:
- Your seizures originate in a small, well-defined area of your brain
- The area in your brain to be operated on doesn't interfere with vital functions such as speech, language, motor function, vision or hearing
For some types of epilepsy, minimally invasive approaches such as MRI-guided stereotactic laser ablation may provide effective treatment when an open procedure may be too risky. In these procedures, doctors direct a thermal laser probe at the specific area in the brain causing seizures to destroy that tissue in an effort to better control the seizures.
Although many people continue to need some medication to help prevent seizures after successful surgery, you may be able to take fewer drugs and reduce your dosages.
In a small number of cases, surgery for epilepsy can cause complications such as permanently altering your thinking (cognitive) abilities. Talk to your surgeon about his or her experience, success rates, and complication rates with the procedure you're considering.
Vagus nerve stimulation
In vagus nerve stimulation, an implanted pulse generator and lead wire stimulate the vagus nerve, which leads to stabilization of abnormal electrical activity in the brain.
Deep brain stimulation
Deep brain stimulation involves implanting an electrode deep within the brain. The amount of stimulation delivered by the electrode is controlled by a pacemaker-like device placed under the skin in your chest. A wire that travels under your skin connects the device to the electrode.
MRI of deep brain stimulation
A magnetic resonance imaging (MRI) scan of deep brain stimulation shows the location of electrodes placed in the brain.
Apart from medications and surgery, these potential therapies offer an alternative for treating epilepsy:
Vagus nerve stimulation. In vagus nerve stimulation, doctors implant a device called a vagus nerve stimulator underneath the skin of your chest, similar to a heart pacemaker. Wires from the stimulator are connected to the vagus nerve in your neck.
The battery-powered device sends bursts of electrical energy through the vagus nerve and to your brain. It's not clear how this inhibits seizures, but the device can usually reduce seizures by 20-40%.
Most people still need to take anti-epileptic medication, although some people may be able to lower their medication dose. You may experience side effects from vagus nerve stimulation, such as throat pain, hoarse voice, shortness of breath or coughing.
Ketogenic diet. Some children with epilepsy have been able to reduce their seizures by following a strict diet that's high in fats and low in carbohydrates.
In this diet, called a ketogenic diet, the body breaks down fats instead of carbohydrates for energy. After a few years, some children may be able to stop the ketogenic diet — under close supervision of their doctors — and remain seizure-free.
Consult a doctor if you or your child is considering a ketogenic diet. It's important to make sure that your child doesn't become malnourished when following the diet.
Side effects of a ketogenic diet may include dehydration, constipation, slowed growth because of nutritional deficiencies and a buildup of uric acid in the blood, which can cause kidney stones. These side effects are uncommon if the diet is properly and medically supervised.
Following a ketogenic diet can be a challenge. Low-glycemic index and modified Atkins diets offer less restrictive alternatives that may still provide some benefit for seizure control.
- Deep brain stimulation. In deep brain stimulation, surgeons implant electrodes into a specific part of your brain, typically your thalamus. The electrodes are connected to a generator implanted in your chest. The generator regularly sends electrical pulses to your brain at timed intervals, and may reduce your seizures. Deep brain stimulation is often used for people whose seizures don't get better with medication.
- Responsive neurostimulation. These implantable, pacemaker-like devices can help significantly reduce how often seizures occur. These responsive stimulation devices analyze brain activity patterns to detect seizures as they start and deliver an electrical charge or drug to stop the seizure before it causes impairment. Research shows that this therapy has few side effects and can provide long-term seizure relief.
Potential future treatments
Researchers are studying many potential new treatments for epilepsy, including:
- Continuous stimulation of the seizure onset zone (subthreshold stimulation). Subthreshold stimulation — continuous stimulation to an area of your brain below a level that's physically noticeable — appears to improve seizure outcomes and quality of life for some people with seizures. Subthreshold stimulation helps stop a seizure before it happens. This treatment approach may work in people who have seizures that start in an area of the brain that can't be removed because it would affect speech and motor functions (eloquent area). Or it might benefit people whose seizure characteristics mean their chances of successful treatment with responsive neurostimulation are low.
- Minimally invasive surgery. New minimally invasive surgical techniques, such as MRI-guided focused ultrasound, show promise at treating seizures with fewer risks than traditional open-brain surgery for epilepsy.
- Transcranial magnetic stimulation (TMS). TMS applies focused magnetic fields on areas of the brain where seizures occur to treat seizures without the need for surgery. It may be used for patients whose seizures occur close to the surface of the brain and are not candidates for surgery.
- External trigeminal nerve stimulation. Similar to vagus nerve stimulation, this device would stimulate specific nerves to reduce frequency of seizures. But unlike vagus nerve stimulation, this device would be worn externally so that no surgery to implant the device is needed. In studies, external trigeminal nerve stimulation provided improvements in both seizure control and mood.
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Lifestyle and home remedies
Understanding your condition can help you take better control of it:
- Take your medication correctly. Don't adjust your dosage before talking to your doctor. If you feel your medication should be changed, discuss it with your doctor.
- Get enough sleep. Lack of sleep can trigger seizures. Be sure to get adequate rest every night.
- Wear a medical alert bracelet. This will help emergency personnel know how to treat you correctly.
- Exercise. Exercising may help keep you physically healthy and reduce depression. Make sure to drink enough water, and rest if you get tired during exercise.
In addition, make healthy life choices, such as managing stress, limiting alcoholic beverages and avoiding cigarettes.
Coping and support
Uncontrolled seizures and their effects on your life may at times feel overwhelming or lead to depression. It's important not to let epilepsy hold you back. You can still live an active, full life. To help cope:
- Educate yourself and your friends and family about epilepsy so that they understand the condition.
- Try to ignore negative reactions from people. It helps to learn about epilepsy so that you know the facts as opposed to misconceptions about the disease. And try to keep your sense of humor.
- Live as independently as possible. Continue to work, if possible. If you can't drive because of your seizures, investigate public transportation options near you. If you aren't allowed to drive, you might consider moving to a city with good public transportation options.
- Find a doctor you like and with whom you feel comfortable.
- Try not to constantly worry about having a seizure.
- Find an epilepsy support group to meet people who understand what you're going through.
If your seizures are so severe that you can't work outside your home, there are still ways to feel productive and connected to people. You may consider working from home.
Let people you work and live with know the correct way to handle a seizure in case they are with you when you have one. You may offer them suggestions, such as:
- Carefully roll the person onto one side to prevent choking.
- Place something soft under his or her head.
- Loosen tight neckwear.
- Don't try to put your fingers or anything else in the person's mouth. No one has ever "swallowed" his or her tongue during a seizure — it's physically impossible.
- Don't try to restrain someone having a seizure.
- If the person is moving, clear away dangerous objects.
- Stay with the person until medical personnel arrive.
- Observe the person closely so that you can provide details on what happened.
- Time the seizures.
- Be calm during the seizures.
Preparing for your appointment
You're likely to start by seeing your family doctor or a general practitioner. However, in some cases when you call to set up an appointment, you may be referred immediately to a specialist, such as a doctor trained in brain and nervous system conditions (neurologist) or a neurologist trained in epilepsy (epileptologist).
Because appointments can be brief, and because there's often a lot to talk about, it's a good idea to be well prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
Keep a detailed seizure calendar. Each time a seizure occurs, write down the time, the type of seizure you experienced and how long it lasted. Also make note of any circumstances, such as missed medications, sleep deprivation, increased stress, menstruation or other events that might trigger seizure activity.
Seek input from people who may observe your seizures, including family, friends and co-workers, so that you can record information you may not know.
- Be aware of any pre-appointment restrictions. At the time you make the appointment, ask if there's anything you need to do in advance, such as restrict your diet.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins or supplements that you're taking.
Take a family member or friend along. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
Also, because you may not be aware of everything that happens when you're having a seizure, your doctor may want to ask questions of someone who has witnessed them.
- Write down questions to ask your doctor. Preparing a list of questions will help you make the most of your time with your doctor.
For epilepsy, some basic questions to ask your doctor include:
- What is likely causing my seizures?
- What kinds of tests do I need?
- Is my epilepsy likely temporary or chronic?
- What treatment approach do you recommend?
- What are the alternatives to the primary approach that you're suggesting?
- How can I make sure that I don't hurt myself if I have another seizure?
- I have these other health conditions. How can I best manage them together?
- Are there any restrictions that I need to follow?
- Should I see a specialist? What will that cost, and will my insurance cover it?
- Is there a generic alternative to the medicine you're prescribing?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions, such as:
- When did you first begin experiencing seizures?
- Do your seizures seem to be triggered by certain events or conditions?
- Do you have similar sensations just before the onset of a seizure?
- Have your seizures been frequent or occasional?
- What symptoms do you have when you experience a seizure?
- What, if anything, seems to improve your seizures?
- What, if anything, appears to worsen your seizures?
What you can do in the meantime
Certain conditions and activities can trigger seizures, so it may be helpful to:
- Avoid drinking excessive amounts of alcohol
- Avoid using nicotine
- Get enough sleep
- Reduce stress
Also, it's important to start keeping a log of your seizures before you visit your doctor.
Oct. 07, 2021