Will You Always Have Seizures?
About 6 out of 10 people diagnosed with epilepsy can become seizure free within a few years with proper treatment. Many of these people will never have any more seizures. For the rest of the people, some will have occasional breakthrough seizures or side effects of medicines and others will have uncontrolled seizures.
Let’s consider an easier way to think about this.
Outlook in the First Year for People Newly Diagnosed with Seizures
- About 50 to 60% (5 to 6 out of every 10 people) will be seizure free after using the first seizure medication tried. (Kwan and Brodie, 2001, Begley et al, 2000, Del Felice et al 2010)
- A second seizure medication may help 11 to 20 out of every 100 people become seizure free. Adding more drugs usually doesn’t help the chance of seizure control.
- 25 out of every 100 adults will develop uncontrolled epilepsy. (Begley et al, 2000)
- Others will have continued seizures and side effects, but we don’t know if other treatments may help.
- In children with new-onset seizures, 74 out of 100 become seizure free within 2 years. (Berg et al 2001)
- Uncontrolled epilepsy may be seen in 9 out of 100 children followed for a number of years. (Geerts et al, 2010)
Outlook for People with Seizures and Epilepsy at Any Point in Time
- About 60 to 70 out of 100 people may get control of seizures after a number of years, but we don’t know if this means complete control of both seizures and side effects.
- At least 30 out of 100 people with epilepsy at any point in time have uncontrolled seizures.
- Up to 50 out of 100 people with epilepsy report bothersome side effects of seizure medications. (Fisher et al, 2000)
Factors that May Improve the Chance of Being Seizure Free
- Having a positive response to the first 1 or 2 seizure medications tried. A positive response means that seizures do not recur and the person is seizure free.
- No known history of brain injury or abnormality
- A normal neurological exam and EEG
- No family history of epilepsy
- Having an unknown cause of epilepsy
Will I have to stay on seizure medicine all my life?
If seizures go away, you may be able to come off seizure medicine, with your doctor’s advice, if you have been seizure free for 2 to 5 years. There are a number of issues to think about before slowly stopping your seizure medications. For example,
- Do you drive a car and what is the risk of driving if you have another seizure?
- What type of work do you do? Would you be at risk of injury coming off of medicine?
- Are you ready and willing to make changes in your medicines?
The length of time a person is seizure free before stopping medicine depends on many issues.
- The longer the time a person is seizure free on medications, the better chance of coming off medicines.
- More than 50 out of 100 children outgrow their epilepsy. Twenty years after the diagnosis, 75 out of 100 people will have been seizure free for at least 5 years, although some may still need to take daily medication.
- People who have surgery and become seizure free may be able to come off seizure medicine. However, some people may need to stay on their medication to prevent seizures from coming back, even after surgery.
What if I am still having seizures while taking seizure medications?
If you continue to have seizures while taking seizure medications, ask the following questions.
- Is your diagnosis correct? Sometimes people are diagnosed with seizures but they may not be caused by electrical discharges or storms in the brain. If your diagnosis isn’t clear, it’s time to find out what is going on.
- Do you know what type of seizures you have? Some medicines work best for specific types of seizures. If you and your doctor don’t know what type of seizures you have, testing — called Video EEG (electroencephalograph) — can record you having a seizure and determine its type. This information will help the doctor choose the best medicine to use.
- Can you tolerate the medicine’s side effects? Sometimes a medicine’s side effects make it hard to take a drug at the right dose. People may feel too sleepy, confused, have memory problems, or feel uncoordinated or unsteady walking when the dose is raised. Other side effects may occur that don’t agree with a person but are not related to the dose of the medicine. Finding the right medicine to control seizures means finding one that also doesn’t cause bothersome side effects.
- Can you afford the medicine? Is it available? Many practical issues, such as the cost of medicine and if it‘s available are the first things to consider before deciding if a drug works. A drug can’t work if you can’t take it regularly.
- Do you know how to take the medicine and can you take it on the schedule your doctor sets up? Medicines work only when they can be taken on a regular basis. Knowing if a person has had a good trial with a medicine depends on whether or not the person understood how to take it and was able to do it.
- You should see an epilepsy specialist to evaluate your seizures and treatment if
- You have tried at least 2 seizure medications that are the right kind for your seizure type.
- If the seizure medications were tried for a long enough time at the right doses.
- If you were able to take the medicines regularly.
- If bothersome side effects limit your ability to stay on the medicines.
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