It’s hard to know for sure whether you’ll always have seizures, but this page will tell you what is known about how different people respond to seizure treatment.

Many people can start treatment and become seizure free within a few years. Some of these people will never have any more seizures. Some others will have occasional breakthrough seizures or side effects of medicines, and some will continue to have uncontrolled seizures. 

What is the chance I will keep having seizures?

In the first year after being diagnosed with seizures:

  • About 1 in 2 people will be seizure free using the first seizure medicine they try. 
  • For about 1 in 10 people, a second seizure medicine will help them become seizure free. Adding more drugs than that usually doesn’t help.
  • 1 in 4 adults won’t find medicines that help. This is called “uncontrolled or refractory epilepsy.  Some of these people may get control of seizures with surgery, devices or diet therapy together with seizure medications.

The statistics are different for children who have just been diagnosed with seizures.

  • About 3 in 4 children will become seizure free within 2 years.
  • About 1 in 10 children will develop uncontrolled epilepsy.

Eventually, up to 7 in 10 people will get control of their seizures. Ideally, control would mean no seizures and no side effects. But some people may consider their seizures controlled even if they have some side effects or breakthrough seizures.

For all people with seizures and epilepsy at any point in time:

  • 3 in 10 have uncontrolled seizures.
  • 1 in 2 say their seizure medicine has bad side effects.

What makes me more likely to become seizure free?

It’s more likely that you will become seizure free if you have:

  • A positive response to the first 1 or 2 seizure medicines you try (a positive response means that you don’t have any more seizures while taking the medicine)
  • No history of brain injury or abnormality
  • A normal neurological exam and EEG test 
  • No family history of epilepsy
  • No known cause of epilepsy

Will I have to stay on seizure medicine all my life?

Maybe.

Whether or not you can come off medicine depends on your risks for more seizures without medicine. These risks will depend on your type of epilepsy, how long you’ve been seizure free, other neurological problems, results of an EEG test and brain scan (CT or MRI). 

If tests show you are unlikely to have more seizures, medicines may be slowly taken away after you’ve been seizure free for 2 to 5 years on medicines. The longer you’ve been seizure free on medicine, the better your chance of staying seizure free off medicine.

What should I think about before coming off medicine?

There are a number of other issues to think about before coming off seizure medicine. For example:

  • Do you drive a car? What is the risk of driving if you have another seizure?
  • What type of work do you do? Would you risk getting hurt if you had a seizure at work?
  • Are you ready and willing to make changes in your medicines?  Medicines are never stopped quickly. They are usually lowered slowly over weeks or months. You may not be able to drive or be limited from some other activities during this time. 

 Some people may be seizure free for years but only if they stay on medicine.  If this happens, talk with your health care team to make sure you are taking a seizure medication with few if any long-term side effects. Sometimes medicines can be changed to lessen side effects and help you feel better.

People who have surgery will have the same concerns about coming off medicine. Some people do well and can come off medication after a few years. Others may have good seizure control after surgery only if they stay on medications. .

What if I still have seizures while taking seizure medicine?

If you keep having seizures while taking seizure medicine, talk to your health care team. Here are some questions to ask:

  • “Is my diagnosis correct?” Sometimes people are diagnosed with seizures, but their symptoms may not actually be caused by electrical activity in the brain. If your diagnosis isn’t clear, it’s time to find out what’s going on.
  • “What type of seizures do I have?” Some medicines work best for specific types of seizures. If you don’t know what type of seizures you have, ask about having a test called “Video EEG Telemetry.” The test will record you having a seizure and find out what type it is. Knowing the seizure type is important in choosing the best medicine for you.
  • “Does the seizure medication have bad side effects?” Sometimes side effects make it hard to take seizure medicine. You may feel sleepy or confused, have memory problems, or feel uncoordinated or unsteady when you take a dose that’s high enough to control seizures. Or you may have side effects at any dose of a certain medicine. Finding the right medicine to control seizures also means finding one that doesn’t cause bad side effects for you.
  • “Can I afford the medicine? Is it easily available?” It’s important to consider practical issues, like how much the medicine costs and whether it‘s available to you. A medicine won’t work if you can’t take it regularly.
  • “Am I taking the medicine the right way?” Medicines work only if you take them regularly and correctly. Make sure you understand how and when to take your medicine. If you have trouble with this, talk to your doctor, nurse, or pharmacist.
  • “Do I need to see an epilepsy specialist?” An epilepsy specialist can evaluate your seizures and treatment. You may want to see an epilepsy specialist if:
    • You have tried at least 2 seizure medicines that are the right kind for your seizure type, for a long enough time, at the right doses, and you took the medicines regularly, but you are still having seizures.
    • You are having trouble staying on your medicine because of side effects.
    • Seizures or medications are affecting your daily life.

 

1Kwan and Brodie, 2001Begley et al, 2000Del Felice et al, 2010
2Begley et al, 2000
3Berg et al, 2001
4Geerts et al, 2010
5Fisher et al, 2000

Authored By: 
Patty Obsorne Shafer RN, MN
N<
Authored Date: 
10/2014
Reviewed By: 
Joseph I. Sirven MD
on: 
Wednesday, October 15, 2014