Better epilepsy treatment than ever before
Deciding how to treat epilepsy is a personal decision made with your neurologist or epileptologist. Epilepsy treatment is different for each person, so it’s best to become as educated as possible.
The good news is there are excellent medications available now that can help patients strive for no seizures and limited side effects. Today, patients and their physicians are demanding excellence in epilepsy medications and treatment. It is okay to demand more from your epilepsy medication and to have the goal of achieving 100% seizure freedom.
Any tips for my first neurologist visit?
Your first step may be to see your primary care doctor and to get a referral to a neurologist or epileptologist who has the deepest knowledge in the field. Before your medical visit, write down any questions you have. If possible, write down everything you remember about what brings on your seizures, and also be prepared to discuss your medical history including any past injuries. Questions your neurologist may ask include:
- Did you have any complications at birth?
- Have you ever had any head injuries?
- Did you ever have any seizures with a high fever when you were a child?
- Does anyone else in your family have seizures?
Epilepsy can be a complicated condition, and you need to learn as much as you can to achieve seizure freedom; so make sure you ask questions. Together with your neurologist or epileptologist, you can make the best decision for your health.
What different kinds of epilepsy medications are available?
There are over a dozen medications currently available for epilepsy treatment. Epilepsy medications are either called first-generation or second-generation, depending on when they were first discovered and made available.
Some of the first-generation epilepsy drugs were introduced almost 100 years ago—around the same time that the modern zipper and the first pop-up toaster were invented. All were revolutionary innovations for their time.
While first-generation antiepileptic drugs are effective, and many people continue to use them, some people find there may be a tradeoff between safety and effectiveness with long-term use of these older drugs. Until about 15 years ago, people with epilepsy didn’t have any other options. But now they do. With the introduction of 9 new second-generation antiepileptic drugs, doctors and people with epilepsy have more choices when it comes to epilepsy treatment.
Many epilepsy drugs were often used for treating other disorders before their effectiveness in epilepsy was fully appreciated. Some newer drugs on the market are specifically for epilepsy treatment. Not all antiepilepsy drugs work in the same way. In fact, a few of these drugs may bind to specific sites in the brain that other epilepsy medications have not been shown to affect.
In addition, second-generation drugs were developed to help improve tolerability. Be sure to talk to your neurologist about what generation your epilepsy medication is in.
What is adjunct therapy?
Adjunct therapy or “add-on treatment” is when one epilepsy treatment or medication is combined with another medication. Its purpose is to assist the primary treatment in a kind of tag-team approach to epilepsy treatment. Some epilepsy medications are approved by the FDA as adjunct therapy in treating seizures because they are used in combination with another medication.
How do I keep my epilepsy treatment on track?
One way to stick to the treatment plan you and your doctor agreed to is to check your prescription every time you pick it up at the pharmacy.
Think of The Four Cs to help you stay on track and don't accept a substitutioneven if your pharmacist says what they've provided is the same thingunless you and your doctor discussed changing brands, dose, when, or how you take your medication. Why? Because staying on track with a medication that is working is important to maintaining seizure control.
The Four Cs of pharmacy visits:
- Compare the new pill bottle label with the label on your last prescription.
- Check that the pills look exactly the same (size, shape, color, and imprint).
- Confirm with the pharmacist (if anything looks different) that he or she is aware of any change and has discussed it with your doctor.
- Contact your doctor (or have your pharmacist call him or her) if your doctor did not request a change to your prescription.
Helpful tip: To help you and your pharmacist ensure you receive the same pills from the same manufacturer, the Epilepsy Foundation has developed a letter you can fill out with your doctor with your current medication information to keep on file at the pharmacy. Download a copy here .
How do I read my prescription bottle?
Staying on track with medication means staying informed. Here's how to read your prescription bottle and make sure what's inside matches the treatment you and your doctor have agreed to.
It can be scary to change epilepsy medications. Any advice for making a successful switch or addition to my current epilepsy treatment?
If you or your loved one is not achieving seizure control on their current medication(s), it is not unusual for a neurologist or epileptologist to make a change in epilepsy medication. But being nervous is natural. One of the biggest fears is that stopping one epilepsy medication and starting another will lead to more seizures if the new medication doesn’t work. Neurologists help guide their patients through the process. Many neurologists recommend gradually starting the new medication while the patient is still on the old
one for a gentle transition. Fortunately, excellent epilepsy medications are available. It is a matter of matching the right medication to the right person.
How long will I have to take epilepsy medication?
Each person with epilepsy is different. Some children may outgrow their epilepsy and will no longer need medication. Others will require lifelong epilepsy medication to control their seizures. It’s important to work with your neurologist or epileptologist to determine what’s best for you. Be sure to talk to your doctor before making any changes to your epilepsy medication.
Who is a candidate for surgery?
Surgical removal of seizure-producing areas of the brain is an alternative for some people whose seizures cannot be controlled by epilepsy medications. It can be performed on both children and adults. Epilepsy surgery may be especially beneficial for those who have seizures associated with structural brain abnormalities, such as a specific brain tumor, malformations of blood vessels, and strokes. Talk with your neurologist to find out more.
What epilepsy research is being done?
Scientists continue to develop new and better epilepsy medications and study how neurotransmitters (chemicals that transmit impulses from one neuron to another) interact with brain cells to control nerve firing and how cells in the brain contribute to seizures. Researchers are also working to identify genes that may influence epilepsy. This information could potentially allow doctors to prevent epilepsy or to predict which treatments will be most beneficial. Magnetic resonance imaging (MRI) and other brain scans are also being improved for even better, more accurate diagnosis.
Remember that current epilepsy treatment options offer the possibility of seizure control. Be sure to talk to your doctor about available treatments.
How can I better manage my epilepsy?
The more you take control, the better you can manage your epilepsy.
- Understand your epilepsy, including your seizure type
- Make sure to talk to your neurologist or epileptologist about all available epilepsy treatment options
- Fill out a medical history and seizure calendar, so you can become involved in your medical care
- Learn how to communicate well with your neurologist and his or her staff
- Bring your epilepsy medications to each neurologist visit
- Take your epilepsy medication regularly. Linking this to a routine may be helpful (when you brush your teeth, prepare for bed, etc). There are also devices that can help—like a watch that beeps when your dose is due
- Get enough sleep—lack of it can bring on seizures
- Keep following up with your neurologist. If you are having seizures or are having difficulty with side effects, you may need to change your epilepsy medicine or dose.
What are the benefits of keeping a seizure diary?
Keeping a daily seizure diary is one way to make living with epilepsy easier. By tracking your seizure activity and epilepsy medication routine, you can help provide valuable diagnosis information to your neurologist or epileptologist. Are you able to do your day-to-day activities? You need to assess your quality of life and tell your healthcare team how you are functioning and feeling. A seizure diary is a great way to track your progress as it relates to seizure activity and any side effects you may be experiencing.
What is the best way to let friends or colleagues know about my epilepsy?
Often, an open, honest, matter-of-fact approach works best. Explain that epilepsy is a medical condition and in most cases can be controlled with epilepsy medication. Let them know that the everyday lives of people with epilepsy aren’t necessarily different from theirs. As you spend time with them, they’ll understand this even better.
How do epilepsy medications work?
Most epilepsy medications work to control seizures by slowing down the rapid fire of electrical signals between brain cells that can cause a seizure. Different epilepsy medications accomplish this in different ways.
- Some epilepsy medications such as carbamazepine and phenytoin control seizures by blocking the channels that are used to transmit electrical impulses in the brain.
- Epilepsy medications such as topiramate and tiagabine are examples of medications that control seizures by increasing the action of a neurotransmitter called GABA (gamma-aminobutyric acid) in the brain. By increasing GABA, rapid fire electrical signals that can cause seizures are regulated and slowed down.
- Other epilepsy medications like levetiracetam work by binding to a unique protein to help slow down the rapid fire electrical signals that can cause seizures. By slowing down the electrical signals levetiracetam is able to better control seizures.
Could signing up for Medicare Part D help lower my prescription drug costs?
Medicare Part D offers prescription drug coverage for everyone with Medicare who chooses to participate in this program. This coverage may help lower your epilepsy prescription drug costs and help protect against higher costs in the future. Cost and prescription coverage vary plan by plan so it’s important that you research plans to find which ones cover your specific epilepsy medications and then pick the one that best fits your needs.
People who should consider signing up for Medicare Part D:
- First-time Medicare enrollees
- People who are currently enrolled in Medicare but would like to add prescription drug coverage including epilepsy medications
- People who have moved out of their current plan’s service area
- People who qualify for extra help because their resources are less than $11,500 (single) or $23,000 (married)
- People who enter, live in, or leave a nursing home