Epilepsy is a treatable condition, and in most cases, it can be well-managed with the proper medication. About half of people with epilepsy become seizure-free with the first medication they try. However, many people need to try more than one option to manage seizures.
If you’re using medication to treat your epilepsy and still having seizures, or if your medication is causing uncomfortable side effects, it might be time to talk to your doctor about a new treatment approach.
The following discussion guide is designed to prepare you for your doctor appointment and get the conversation started.
What are my triggers?
Part of managing your epilepsy is identifying triggers that may affect your treatment. It’s a good idea to talk to your doctor about whether any external or lifestyle factors could be playing a role in your seizures.
Some common triggers can include:
- forgetting to take your medication
- being sick with another illness
- not getting enough sleep
- feeling more stressed out than usual
- being exposed to flashing or flickering lights
- missing one or more meals
- being on your period
- drinking more than the recommended amount of alcohol
Keeping a journal is one of the best ways to spot triggers. When you have a seizure, make note of the time and date, how long it lasted, and any external or lifestyle factors present. Bring this journal with you to all of your appointments. It allows you to review your progress with your doctor and look for any potential patterns.
Should I increase my dose?
Usually when you begin taking a new seizure medication, your doctor will start you on a low dosage and then slowly increase it based on your response. If your current dose doesn’t seem to prevent seizures, ask about whether it might help to increase it.
Sometimes an increased dose can mean a different routine for how and when you take your medication. So, if your doctor does decide to boost your dose, make sure to note any changes to your treatment schedule.
If you’re already taking the highest recommended dose of your current medication, it might be time to explore different options.
Could my other medications be affecting my treatment?
Some of the medications you’re taking for other health conditions could interact with your epilepsy treatment. Talk to your doctor about whether this is a possibility. If there is a conflict between two or more of your medications, your doctor can advise you on the best way to help moderate your medication schedule.
It’s also useful to ask whether your epilepsy treatment may work better when taken with other medications. Sometimes it takes a combination of several different medications to best manage seizures. Talk to your doctor about whether adding a complementary medication might help.
If I start taking a new medication, what kind of side effects can I expect?
If your doctor starts you on a new medication, you should be aware of any potential side effects.
The typical side effects of anti-seizure medications can include:
- loss of energy
- mild skin irritation
- fluctuations in weight
- loss of coordination
- lowered bone density
- speech and memory issues
In certain cases, epilepsy medicines can cause more severe side effects, such as:
- inflammation of the organs
- severe skin irritation
- suicidal thoughts
If you start to experience any of these symptoms, you should contact your doctor immediately.
Are there any other treatment options that might help?
Research suggests that your chances of becoming seizure-free decrease with each successive epilepsy drug regimen. So, if you’ve already tried two or more different medications without success, you should talk to your doctor about non-drug alternatives.
Below are four of the most common treatment options for epilepsy when medication doesn’t seem to prevent seizures.
For some people with epilepsy, surgery to remove the part of the brain that’s causing seizures can help. If your seizures stem from a small area of your brain that doesn’t control vital functions like speech, vision, hearing, or mobility, surgery may be an option.
Many people who undergo surgery still continue to take medication to manage their seizures. You may be able to lower your dose and take medications less frequently.
However, it’s important to discuss the risks with your doctor before deciding whether it’s right for you. There’s a possibility that brain surgery may cause problems with your mood and memory.
Vagus nerve stimulation
Another alternative treatment for epilepsy is vagus nerve stimulation (VNS), in which a device similar to a pacemaker is implanted under the skin of your chest. The stimulator sends bursts of energy to your brain through the vagus nerve in your neck. VNS has the potential to reduce seizures by up to 40 percent.
Similar to after surgery, most people using VNS still need to take medication, but at a lower dose. Common side effects from VNS include throat pain and respiratory problems.
Another alternative treatment for epilepsy is responsive neurostimulation (RNS). In RNS, a stimulator is implanted in your brain at the source of your seizures. This device is programed to recognize the electrical pattern of the seizure and send stimulation when unusual patterns are detected. RNS may reduce seizures by 60 to 70 percent.
Most people using RNS will still need to take medications, but usually the dose of medication can be lowered. Most people with RNS do not have any side effects.
For certain people with epilepsy, a change in diet can help reduce the frequency of seizures. A ketogenic diet causes your body to create energy by breaking down fats rather than carbohydrates. It typically involves eating three or four grams of fat for every one gram of carbs, meaning that around 90 percent of your daily calories will come from fat.
There is a risk that adopting this diet can lead to malnourishment. It can also cause health problems like constipation and kidney stones. It’s important that you talk to your doctor before trying it.
Can I be part of a clinical trial?
If you’ve tried a number of different treatment options and are still not seizure-free, it may be worth looking at other options. Consider asking your doctor about participating in clinical trials and research studies. It’s possible that the drug or device being tested in the trial may not work for you. But your participation could help other people with epilepsy in the future.
Depending on where you are in your treatment, you may not qualify for certain trials or studies. Make sure to talk to your doctor about your eligibility first.
Remember that even if you’ve tried multiple epilepsy medications without success, there’s still hope. There are a wide variety of new treatments in development that use the latest technologies to help track and prevent seizures.
It’s still possible that one day you will be seizure-free. This guide is meant to be a useful starting point. If you have questions for your doctor about your epilepsy treatment, don’t be afraid to ask.