Refractory (intractable) epilepsy
About 35% of people with epilepsy continue to have seizures despite trying different medications. When someone has tried at least 2-3 medications, his or her chance of becoming seizure-free with medication alone becomes unlikely. It is at that point that we consider other options for epilepsy treatment, in addition to medication.
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.
Learn about non-drug therapies for epilepsy
Epilepsy surgery: resection, corpus callsotomy, and laser ablation
Vagus nerve stimulation (VNS)
Dietary therapy
Experimental trials
Responsive neurostimulator (RNS or Neuropace)
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 80% of people can be free of ‘disabling’ seizures. More accurate success rates depend on the cause of the epilepsy and location of seizures.
Sometimes seizures begin in both halves of the brain almost simultaneously. In these cases, brain surgery to remove the seizure focus may not be possible. In selected cases, a procedure called corpus callosotomy may help eliminate the most severe types of seizures that cause injury. The surgeon does not remove brain tissue but cuts some of the fibers (the corpus callosom) connecting the two halves of the brain.
What is Vagus Nerve Stimulation? (http://www.livanova.cyberonics.com/)
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 is responsive neurostimulation? (Neuropace.com)
When there is more than one part of the brain that is causing seizures, or the part of the brain causing seizures cannot be removed safely, responsive neurostimulation can help reduce seizures in selected patients.This consists of a small device which is placed in a pocket formed in the skull. Wires connect the device to electrodes which are placed over the area of brain causing seizures. This device records the electrical activity of the brain and can detect when small seizures occur. It delivers a very small electrical current directly to the part of the brain causing seizures. This can stop many seizures and can reduce the overall number of seizures by at least 50% in approximately 60% of people after three years of treatment.
What dietary therapies are used for intractable epilepsy?
When medicines don’t work, dietary therapies have been found to help in a number of people. Like surgery or VNS, it doesn’t work in everyone. The diets used most often include:
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.
What are seizure alert devices?
For some individuals, seizure monitoring devices may be helpful in tracking seizures and alerting caregivers about seizures. Some devices are now available, including Embrace (empatica.com) and Smart watch (http://smart-monitor.com/).
Seizure tracking:
Accurate tracking of seizures is important in epilepsy care and may provide clues to you and your doctor about seizure triggers. SeizureTracker.com offers one app that can be useful in tracking seizures and taking medication.
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