The first seizure medicine that is prescribed may not prevent seizures for some people, even if they follow the doctor's directions completely. What should you do next?
Studies have shown that most people (~60%) respond to the first 1 or 2 drugs used. After this, an additional drug or 2 drugs at once help in only 3% of people. And 36% do not respond to these early medicines used to treat seizures (NEJM, 2000; Neurology, 2012)
Despite this news, don’t give up! There is more than one medicine or treatment for seizures and sometimes it takes a while to find what’s best for you.
Here’s a few tips on what to do if the first treatment doesn’t work:
- Keep a record of seizures and let the doctor or other health care provider know how often you are having seizures.
- Write down if there’s anything that could be affecting or triggering your seizures. For example, are they happening at a certain time of day, if you are sick with another illness, if you miss a medicine, or during sleep? What about if you are not getting enough sleep, or if you’re under a lot of stress? There may be other lifestyle factors going on that you aren’t aware of, so try to keep track of how you are feeling and what you are doing when you have a seizure.
- Review the list of triggers with your doctor. There may be lifestyle changes you can make.
- Go over how you are taking the medicine and if you’ve missed any doses. There may be easier ways to take the medicine that will prevent missed doses.
- A higher dose of medicine may be needed. When a seizure medication is first started, usually it’s at a low dose and increased slowly. The dose will be increased over time as you and your doctor see how it works.
- If the dose of medicine is changed or the times you take it are different, make sure you know what the changes are. Write these changes down and the date you make the changes!
- If seizures still continue and you are on the highest amount of the first medicine that you can tolerate, your doctor might recommend changing medicines.
- A different medicine may be prescribed instead of the first – this means that you’ll start a second medicine and when you are at a certain amount, the first medicine may be lowered and stopped.
- A second medicine may be added to the first one you are taking. Some people do better on a combination of medicines than on just one medicine.
- Remember, no single medicine or combination of seizure medicines is best for everyone. You may need to try a series of medicines to find which one works best.
What do I do if the next medicine doesn’t work?
- The majority of people get a good response to the first one or two seizure medications tried, so if you are still having seizures it’s time to get more help. Generally it’s time to get another opinion from an epilepsy specialist if you continue to have seizures after trying two or more seizure medications (at doses high enough and for long enough to see if they would work).
- If you are seeing a primary care doctor, ask to see a neurologist (a doctor who specializes in disorders of the nervous system, including the brain) or an epileptologist (a neurologist who specializes in epilepsy).
- If you’ve been seeing a general neurologist, ask to see an epilepsy specialist.
- You may see an epilepsy specialist for a second opinion – to make sure the diagnosis is correct, find out what other seizure medications may be tried, or consider other treatments that may help.
- Some people have their general neurologist be the main doctor managing the seizures. In this case, the epilepsy specialist will talk to him or her about their recommendations for you.
- Some people may see the epilepsy specialist as their primary neurologist.
- In either case, it’s important that your primary care doctor knows what is going on and is talking to the epilepsy doctors involved in your care.