‘Drug resistant epilepsy’ (DRE) is when a person has tried two or more appropriate epilepsy medications (or a combination), but they’re still having seizures. DRE, which is also known as refractory epilepsy, pharmacoresistant epilepsy, or ‘uncontrolled seizures' is relatively common.
Learn more about drug resistant epilepsy, why it might happen, and what alternative treatments are available.
What is drug resistant epilepsy?
The International League Against Epilepsy defines drug resistant epilepsy as: “failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom”.
A person can be said to have DRE if they’ve tried two or more seizure medications and taken them as instructed, but their seizures continue.
Is DRE common?
Among people with epilepsy, DRE is relatively common - about one in three experience it.
Imagine there were 100 people who were newly diagnosed with epilepsy. Research suggests that 47% of them would achieve seizure freedom after trying their first medication. If the first medication didn’t work, another 13% would find that a second treatment helps them reach seizure freedom. If the second medicine didn’t work, a further 4% may achieve seizure control when trying a third medicine. Sometimes, a fourth may work. But about a third of the 100 people would not achieve seizure freedom despite having tried a few different medications.
Why do seizure drugs work for some people and not others?
There are several reasons why seizure medication may work for one person and not another. These include:
- Side effects: The side effects of epilepsy medication can be very unpleasant for one person and prevent them from taking an adequate dose of a drug, whereas another person may not be affected in the same way.
- Wrong treatment: The ASM may not be appropriate for their type of seizures.
- Wrong dose: The dose may be too much or too little for some individuals - perhaps because of how their body processes medication, their size, or their lifestyle.
- Compliance: Sometimes, people forget to take their seizure medication on time.
- Lifestyle: Being sleep deprived or consuming alcohol may also reduce the effectiveness of ASMs
- Not epilepsy: People may be diagnosed with epilepsy, but may not actually be having epileptic seizures - so ASM’s won’t solve their health conditions.
If you find that your seizure medication doesn’t seem to be preventing your seizures, talk with your doctor.
Additional treatments are available
Because so many people experience drug resistant epilepsy, several alternative treatments are now available. The Epilepsy Foundation lists a variety of additional treatments. These include:
- Brain surgery: which removes the part of the brain causing seizures
- Deep Brain Stimulation: electrodes are implanted in your brain by a surgeon, and connected to a device implanted in your chest. The electrodes stimulate parts of your brain that are associated with seizure activity.
- Responsive neurostimulation: a device is implanted in your brain that monitors electrical activity and delivers stimulation when it appears you may be having a seizure or an aura.
- Special diets (Keto): they reduce or eliminate the amount of carbohydrates you eat which may lessen the amount of seizures you experience
- Vagus nerve stimulation: a device is implanted in your chest, just under the skin. It sends tiny electrical pulses that stimulate a nerve in your neck called the vagus nerve.
If you believe you might have drug resistant epilepsy, talk to your doctor about the treatment options available for you.
