If your doctor says you have refractory epilepsy, it means that medicine isn't bringing your seizures under control. You might hear the condition called by some other names, such as uncontrolled, intractable, or drug-resistant epilepsy.
You can have refractory epilepsy as an adult, or your child might have it. About 1 in 3 people with epilepsy will go on to develop it.
Epilepsy is the medical name for having seizures again and again, when there doesn't seem to be a clear cause. In an epilepsy seizure, your brain has a sudden burst of electrical activity. When that happens, you might start shaking without being able to control it. You could black out or simply stop moving and lose awareness of your surroundings. The seizures may last a few seconds or a few minutes.
Your doctor can try certain things to help keep your seizures under better control. For instance, he might try different combinations of drugs.
Your doctor may also put a device under your skin that sends electrical signals to one of your nerves, called the vagus nerve. This may cut the number of seizures you get.
Surgery that removes a part of the brain that causes your seizures may also be an option.
With any of these treatments, you may still need to take epilepsy medicine throughout your life.
It's natural to feel anxious when the doctor tells you your epilepsy isn't getting better with the medicine you're now taking. You don't have to go through it alone, though. It's important to reach out to family and friends to get the emotional support you need. You might also want to join a support group, so you can talk with other people who are going through the same things you are.
Epilepsy can start at any age, and it sometimes runs in families. In about half of all cases, doctors don't know why it happens.
Sometimes a serious head injury causes epilepsy -- for example, from a car accident. Your child might develop epilepsy from a serious infection, such as meningitis. In an adult, a brain tumor or a stroke could lead to epilepsy.
If you're taking an anti-epilepsy drug and still have seizures, you may have refractory epilepsy. Your seizures could take different forms and last from a few seconds to a few minutes.
You may have convulsions, which means you can't stop your body from shaking.
When you have a seizure, you may also:
- Black out
- Lose ability to control your bowels or bladder
- Stare into space
- Fall down suddenly
- Get stiff muscles
- Bite your tongue
Getting a Diagnosis
Your doctor may use several ways to diagnose refractory epilepsy. He may ask you questions such as:
- How often do you have seizures?
- Do you ever skip doses of your medicine?
- Does epilepsy run in your family?
- Do you still have seizures after taking medicine?
Your doctor may also give you a test called an electroencephalogram. To do this, he'll place metal discs called electrodes on your scalp that measure brain activity.
Other tests might include a CT scan of your brain. It's a powerful X-ray that makes detailed pictures inside the body.
You might also need to get an MRI of your brain. It uses magnets and radio waves to make pictures of organs and structures inside the body.
If you need surgery to treat refractory epilepsy, these tests can help doctors find out where your seizures are starting.
Your doctor will most likely want you to report your symptoms regularly. He may try several drugs at different doses.
Questions for Your Doctor
- What might be causing my seizures?
- What tests are needed to diagnose refractory epilepsy?
- Should I see an epilepsy specialist?
- What treatments are available for refractory epilepsy?
- What precautions should I take to avoid getting injured during a seizure?
- Are there any limits on my activities?
Medications. Your doctor may take a second look at the drugs you're taking. He may suggest another medicine, either alone or combined with other drugs, to see if it helps you have fewer seizures.
Many drugs can treat epilepsy, including:
Surgery. If you still have seizures after trying two or three anti-epilepsy drugs, your doctor might recommend brain surgery.
It can help a lot if your epilepsy only affects one side of your brain. Doctors call that refractory partial epilepsy.
A surgeon removes the area of your brain that's responsible for starting seizures.
It's natural to worry about brain surgery and to wonder if it will affect the way you think or if you'll seem like a different person afterward. Talk with your doctor about what to expect if you choose the surgery or if you don't, so you can weigh the risks and benefits. A lot of people who have the surgery say that getting free of seizures -- or at least making them less common and less intense -- makes them feel much better.
The surgeon usually removes a portion of brain tissue by operating on an area of your head that's behind your hairline, so you won't have noticeable scars.
After it's done, you'll probably need to stay in an intensive care unit of the hospital for a few days. After that, you'll move to a regular hospital room, where you may need to stay for up to 2 weeks.
You should take it easy for a while after you get back home, but you'll probably be able to return to a normal routine in 1 to 3 months. Even with the surgery, you might need to take seizure medication for a few years. You may need to stay on the drugs for the rest of your life.
Talk to your doctor about any side effects you might have from the surgery. You can ask him to put you in touch with other people who've had the surgery, so you can better understand what to expect.
Diet. The ketogenic diet helps some people with epilepsy. It's a high-fat, low-protein, low-carb diet. You have to start it in a specific way and follow it strictly, so you need a doctor's supervision.
Your doctor will watch closely to see whether or when you can lower any of your medication levels. Because the diet is so specific, you may need to take vitamin or mineral supplements.
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 heart pacemaker 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 put in 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.
Clinical trials. 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 are 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.
Ask your doctor for information on support groups in your area. You can also find out about support groups by going to the website of the Epilepsy Foundation.