Diagnosing epilepsy and treating seizures successfully requires a team effort between you, your family and your health care team. It is important to consult with a Neurologist if you have epilepsy or seizures because a Neurologist is trained to care for people with neurological disorders.
For some people it may be easy to diagnose and control seizures and epilepsy. For others diagnosing and treating epilepsy may be difficult. When seizures and epilepsy are difficult to diagnose or when the person is not responding to standard therapy (medication), it is recommended to consult with a neurologist who specializes in epilepsy who is called an Epileptologist.
The following treatments are the most studied and commonly used in western medicine. There are many alternative treatments that may be of benefit to individuals living with epilepsy but the options listed below are the most researched, common types of seizure control.
To find a Neurologist or Epileptologist near you in Northern California please visit the Doctors & Centers Page under our ‘Resources’ tab.
Managing your Epilepsy:
Participating in your treatment and being an advocate for yourself can impact your results. We encourage you to do a few simple things to effectively participate and advocate for yourself.
- Take your medicine on time, every day, exactly as prescribed by your doctor.
- See a specialist if your seizures are not controlled.
- Keep a health diary of seizures, test results, medications, and questions for your doctor.
- Track your seizures.
- Know your seizure triggers – For many people, sleep deprivation or stress can trigger seizure activity.
- Create and share your own seizure action plan – Get your doctor’s input and share this with your employer, school, family and friends.
You should ask for a referral to an epilepsy center if one of these statements is TRUE:
- I continue to have seizures despite treatment with two different seizure medications.
- I take multiple seizure medications daily and have unacceptable side effects.
- I need advanced testing to confirm the diagnosis of epilepsy or find another cause for symptoms.
- I need a team approach to epilepsy and other medical conditions such as depression, learning disabilities, anxiety, or problems with memory or thinking.
- I want to learn about non-medication treatments for seizures- Ketogenic Diet, Responsive Neurostimulation (RNS) System, Vagus Nerve Stimulator (VNS), epilepsy surgery, and other new therapies.
- I have seizures secondary to genetic disorders or other rare diseases.
- I am pregnant or want to learn more about the effects of epilepsy and seizure medications on pregnancy and the developing baby.
- I am interested in participating in clinical trials of new experimental medical or device treatments for seizures.
Adopted from the National Association of Epilepsy Care
Most epilepsy medicines are taken by mouth. The doctor’s choice of which drug to prescribe depends on what kind of seizure a person is having. People react to medicines in different ways. Some experience side effects while others may not. Some people’s seizures will respond well to a particular drug, while someone else will have seizures that continue. It may take some time to find exactly the right dose of the right drug for each person with epilepsy.
Whenever possible, doctors try to prevent seizures with a single medication. This is called monotherapy. However, some people may require polytherapy, the use of more than one medication to achieve seizure control.When selecting a drug, your doctor will consider the type of seizures you have. Not all medications work for all types of seizures.
Like all drugs, epilepsy medicines have side effects. Some are dose-related, and become more likely as the dose increases. For a comprehensive list of anti-epileptic drugs please click here.
The Epilepsy Foundation of Northern California’s official position regarding CBD Oil reflects that as stated by our National Office:
The Epilepsy Foundation supports the rights of patients and families living with seizures and epilepsy to access physician directed care, including medical marijuana.
We further recognize that extensive research has been focused on the benefits of CBD Oil for pediatric population and encourage further research to expand our knowledge of this new opportunity for therapeutic relief. We strongly caution people seeking relief through non-FDA approved medications to be cautious as the ingredients are not regulated, and we do not know how these new therapies will work with other medications or therapies. Further, many non-approved CBD products have been found with low or no CBD content so are of questionable value. Consultation with epilepsy trained medical provider is essential for best care.
When antiepileptic drugs fail to control or substantially reduce seizures, surgery on the brain may be considered. Although some of the techniques are recent, surgical removal of seizure-producing areas of the brain has been an accepted form of treatment for more than 50 years. Most surgical patients are adults who have fought long and unsuccessful battles for seizure control. However, children with severe seizures are also being treated with surgery.
Brain surgery can be a successful way of treating epilepsy. Surgery is most likely to be considered when someone with epilepsy:
- has documented epileptic seizures and not pseudoseizures
- has already tried the standard medicines without success (or has bad reactions to them)
- has seizures that always start in just one part of the brain
- has seizures in a part of the brain that can be removed without damaging important things like speech, memory or eyesight
People who are going to have epilepsy surgery may have several tests first. In some cases, electrodes have to be implanted in a separate operation to locate seizure sites deep in the brain. Sometimes these tests take days or even weeks to complete.
Types of surgeries:
- Laser Ablation
- Gamma knife
Afterwards some seizure medications may have to be continued usually for a year or two. Then if no further seizures occur the medicine may be slowly withdrawn. At this point, chances of living free of seizures and free of medication are good. However, many people will have to continue with medication and some do not benefit from surgery.
Vagas Nerve Stimulator (View Brochure Here)
Vagas nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures, by sending regular small pulses of electrical energy to the brain via the vagal nerve, a large nerve in the neck.
The energy is delivered by a flat round battery about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagal nerve in the neck. The battery is programmed by your health team to send a few seconds of electrical energy to the vagal nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.
Responsive Neurostimulation System (NeuroPace Website Here)
Responsive neurostimulation is a new approach to treating medically uncontrolled partial onset seizures. The RNS System is the first device to provide responsive neurostimulation, automatically monitoring brain signals and providing stimulation to abnormal electrical brain events when it is needed. It is approved by FDA as an adjunctive treatment for adults with medically refractory partial seizures that come from one or two seizure targets identified by your doctor. The RNS System is implanted within the skull by a surgeon. The battery lays under the scalp, while one or two leads are placed at the seizure target and connected to the neurostimulator. After the scalp heals, this should not be noticeable by others. It continuously monitors the brain’s activity and is programmed by the epilepsy doctor to detect and record specific patterns that could lead to a seizure. When these patterns are detected, the RNS System responds with brief pulses of stimulation intended to disrupt the abnormal brain activity before a seizure occurs. Detection and stimulation settings are individualized for each patient’s patterns and so that stimulation is not felt. After implantation, each patient is given a take-home laptop monitor with a wand to upload and transfer data to the epilepsy doctor between office visits. The RNS System is manufactured by NeuroPace, Inc.
Ketogenic Diet (View Brochure Here)
Normally our bodies run on energy from glucose which we get from food. We can’t store large amounts of glucose because we only have about a 24-hour supply. When a child has no food for 24 hours — which is the way the diet begins usually in a hospital — he or she uses up all the stored glucose. With no more glucose to provide energy, the child’s body begins to burn stored fat.
The ketogenic diet keeps this process going. It forces the child’s body to burn fat round the clock by keeping calories low and making fat products the primary food that the child is getting. In fact, the diet gets most (80 percent) of its calories from fat. The rest comes from carbohydrates and protein. Each meal has about four times as much fat as protein or carbohydrates. The amount of food and liquid at each meal have to be carefully worked out and weighed for each person.
Doctors don’t know precisely why a diet that mimics starvation by burning fat for energy should prevent seizures, although this is being studied. Nor do they know why the same diet works for some children and not for others.
Trying to put a child on the diet without medical guidance puts a child at risk of serious consequences. Every step of the ketogenic diet process must be managed by an experienced treatment team usually based at a specialized medical center.
Making the Decision
Most experts say the diet is worth trying, when two or more medications have failed to control seizures, or when medications cause side effects that are having a harmful effect on a child’s life. It also helps to have a child who is willing to try foods that he might otherwise not be enthusiastic about, and is tolerant and not fussy about eating.
The diet seems to work for more than one kind of seizure, and for children who have a lot of seizures or a few seizures. But most doctors say it shouldn’t be used instead of medications, if the drugs are working and the child is not having bad side effects. Parents generally decide to try the diet because they hope it will give their child a better chance for a normal life.
However, the diet can be a barrier to some normal life experiences for children, especially those that revolve around food and holidays. And, like other treatments for epilepsy, it also can have side effects that affect some children more than others. So, as with any kind of treatment, there’s a lot to think about before deciding to try the diet.
Going over all the possibilities with your doctor is the best way to make the decision. It may also be helpful to talk with other parents whose children have been on the diet.