Refractory Epilepsy
Refractory Epilepsy
Your Guide to
Refractory Epilepsy
Doctors aren't sure why the ketogenic diet works, but some studies show that children with epilepsy who stay on the diet have a better chance of reducing their seizures or their medications.
For some people, a modified Atkins diet may work, too. It's slightly different from the ketogenic diet. You don't have to restrict calories, protein, or fluids. Also, you don't weigh or measure foods. Instead, you track carbohydrates.
People with seizures that are hard to treat have also tried a low glycemic index diet. This diet focuses on the type of carbs, as well as the amount, that someone eats.
Electrical Stimulation: Your doctor might recommend vagus nerve stimulation (VNS) to treat refractory epilepsy. Doctors usually consider surgery or the ketogenic diet first.
The doctor puts a device that looks like a heartpacemaker under your left collarbone. It connects to the vagus nerve in your neck through a wire that runs under your skin. The device sends a current to the nerve, which may cut down on the number of seizures you get, or make them less intense.
The operation to implant the device takes 1 to 2 hours. You won't need to stay overnight in the hospital. Side effects may include cough, hoarseness, and deepening of your voice.
You may want to ask your doctor if you could take part in a clinical trial. These trials test new drugs to see if they're safe and if they work. They're often a way for people to try new medicine that isn't yet available to everyone.
Stress can sometimes trigger seizures. Talking to a counselor is a great way to find solutions to manage your stress.
Try going to a support group, too. You can talk with people who know what you're going through, and who give advice from their own experience.
Even though you have refractory epilepsy, it's still possible that there's a way to get your seizures under control. It may be a matter of switching to a different treatment.
Your doctor may find a different drug combination that helps. Getting electrical stimulation of the vagus nerve means fewer seizures for about 40% of people who try it. And if a brain surgeon can remove the part of the brain that's causing seizures, the seizures may stop, or at least happen less often and become less intense.
As you go through the process of finding out what works best, you'll need to a strong network of family and friends who can offer emotional support, especially if your seizures prove hard to control. Having a trusted person to listen can be a great comfort when you're going through something tough.
Treatment continued...
Your Guide to
Refractory Epilepsy
- What Is Refractory Epilepsy?
- Causes
- Symptoms
- Getting a Diagnosis
- Questions for Your Doctor
- Treatment
- Taking Care of Yourself
- What to Expect
- Getting Support
Doctors aren't sure why the ketogenic diet works, but some studies show that children with epilepsy who stay on the diet have a better chance of reducing their seizures or their medications.
For some people, a modified Atkins diet may work, too. It's slightly different from the ketogenic diet. You don't have to restrict calories, protein, or fluids. Also, you don't weigh or measure foods. Instead, you track carbohydrates.
People with seizures that are hard to treat have also tried a low glycemic index diet. This diet focuses on the type of carbs, as well as the amount, that someone eats.
Electrical Stimulation: Your doctor might recommend vagus nerve stimulation (VNS) to treat refractory epilepsy. Doctors usually consider surgery or the ketogenic diet first.
The doctor puts a device that looks like a heartpacemaker under your left collarbone. It connects to the vagus nerve in your neck through a wire that runs under your skin. The device sends a current to the nerve, which may cut down on the number of seizures you get, or make them less intense.
The operation to implant the device takes 1 to 2 hours. You won't need to stay overnight in the hospital. Side effects may include cough, hoarseness, and deepening of your voice.
You may want to ask your doctor if you could take part in a clinical trial. These trials test new drugs to see if they're safe and if they work. They're often a way for people to try new medicine that isn't yet available to everyone.
Taking Care of Yourself
Stress can sometimes trigger seizures. Talking to a counselor is a great way to find solutions to manage your stress.
Try going to a support group, too. You can talk with people who know what you're going through, and who give advice from their own experience.
What to Expect
Even though you have refractory epilepsy, it's still possible that there's a way to get your seizures under control. It may be a matter of switching to a different treatment.
Your doctor may find a different drug combination that helps. Getting electrical stimulation of the vagus nerve means fewer seizures for about 40% of people who try it. And if a brain surgeon can remove the part of the brain that's causing seizures, the seizures may stop, or at least happen less often and become less intense.
As you go through the process of finding out what works best, you'll need to a strong network of family and friends who can offer emotional support, especially if your seizures prove hard to control. Having a trusted person to listen can be a great comfort when you're going through something tough.
