What approaches can be used to treat intractable seizures?
When seizures are not controlled, despite best efforts, different therapies are available to people with epilepsy and their health care team.
- Talk to your doctor to reevaluate the diagnosis and medication therapy.
- Make sure you are doing everything you can to take the medicines consistently and manage or avoid seizure triggers.
- Consider a referral to an epilepsy specialist (called an epileptologist) and specialized epilepsy center. An Epilepsy Center takes a comprehensive approach to medical, psychological, and social problems associated with seizures. They should be capable of providing the full range of treatments for epilepsy, both medication and non-drug therapies.
- Link to Find a Doctor
- Link to Find an Epilepsy center
- Learn about non-drug therapies for epilepsy
- Epilepsy surgery
- Vagus nerve stimulation or other devices
- Dietary therapy
- Experimental trials
What is epilepsy surgery and how helpful is it?
Surgery is a reasonable option for people with refractory epilepsy, if seizures start in one are of the brain and that area can be removed safely.
- In this type of surgery, called a resection (usually in one of the temporal or frontal lobes), about 50 to 90% of people can be free of ‘disabling’ seizures. More accurate success rates depend on the cause of the epilepsy and location of seizures.
- Serious complications occur with about 1 in every 50 surgeries.
- Epilepsy surgery is elective surgery, meaning that it is a matter of personal choice, not necessity.
What is Vagus Nerve Stimulation?
VNS Therapy, or vagus nerve stimulation, is a way of controlling seizures in people who do not respond to medications and may not respond to surgery. The vagus nerve sends information from your neck down to the chest and stomach, and then back up again. The vagus nerve then sends information up to the brain. Stimulation of the vagus nerve can change the likelihood of the brain to have seizures.
- VNS Therapy consists of a device placed under the skin in the left side of the chest. An electrode attached to the generator is then placed under the skin and connects with the vagus nerve in the left side of the neck.
- Preprogrammed stimulation can be delivered from the generator in the chest to the vagus nerve. Settings can be adjusted by a nurse and doctor trained in the use of VNS Therapy.
- The stimulation doesn’t work right away, but after a few months of therapy, about 25 to 30% of people may see that seizures decrease by 50% or more. Usually seizure control improves over time, with up to about 45% of people having seizures decrease at least by 50% after 1 to 2 years of therapy.
- Complete seizure freedom by VNS happens in only small numbers of people. And in some people, it doesn’t work at all.
- VNS is not considered a substitute for seizure medications. People continue to take seizure medications while using VNS. However, if the VNS works, some people can lower the number or dose of medications and lessen side effects.
- Side effects of VNS are usually mild, including hoarseness and coughing, mostly while becoming use to the stimulation.
- VNS is also approved by the FDA for depression that does not respond to other treatments.
What dietary therapies are used for intractable epilepsy?
- Ketogenic Diet
- Modified Atkins Diet
- Low Glycemic Index Treatment
When should experimental trials be considered?
If other treatments don’t work or you are interested in exploring new therapies, taking part in an experimental trial should be considered. These trials may test a new medication, device, or surgical procedure that has not been approved by the FDA yet. Or there may be trials testing how well approved medications or therapies works compared to others.
Clinical research is also done to better understand the problems associated with uncontrolled epilepsy or how complementary therapies, such as diet, stress management, or safety devices may help.
While new therapies are developed by clinical trials, people need to be aware that they are participating in research. Supervision and safety controls are extensive, but there still is an element of risk and the unknown. If a trial is successful, you may get to use a new therapy years before it becomes available to the public. The Epilepsy Therapy Project of the Epilepsy Foundation supports annual conferences to review and accelerate the development of new antiepileptic drugs and devices.
What is the outlook for intractable seizures?
Intractable epilepsy does not always remain intractable. First, one of the treatments listed above may prove effective. Second, individuals may be able to modify precipitating factors or their lifestyle to help to control the seizures. But even in the absence of specific therapies or life changes, there is hope for improvement. Jacqueline French and associates studied 246 patients from their clinic who had at least one seizure per month and were taking at least two seizure medications. Over a three-year follow-up period, 5% of these patients each year became seizure-free for at least six months. Unfavorable predictors of control were chronic cognitive delay, long history of intractable seizures and previous status epilepticus.
Despite the hope that some people will get better over time, we must also remember that uncontrolled seizures bring a number of other problems. People living with active seizures have greater risks of accidents, injuries, cognitive problems, mood disorders, social problems, unemployment and more. Unfortunately, serious and life-threatening risks of seizures are real. Understanding the causes and seriousness of uncontrolled epilepsy may help people get the right help as early as possible.