What to Do When Seizure Medications Don’t Work for Epilepsy

Do seizure medications work?

If you have epilepsy, you likely take at least one anti-seizure medication (ASM), also known as an anti-epileptic drug (AED). Scientists designed these medications to calm the driving force behind seizures — unusual electrical bursts between brain cells called neurons.

Some medications target charged molecules that flow in and out of neurons and allow cells to send messages. Others aim at the messengers the neurons use, called neurotransmitters. The range of choices — more than 30 approved medications, with others in clinical trials — means people can often find seizure control.

Once your seizures are under control, doctors may be able to reduce the number of medications you take or the doses. You may also have more options for replacing medications that cause side effects. You won’t know until you seek additional help — everyone experiences seizures differently, so results and treatments vary, too.

However, medications do not always provide seizure control as Josh from Texas found out. “I eventually tried just about every one on the market,” he says. “Sometimes the medicines would get the seizures under control for a little while, but they always came back.”

Struggling with epilepsy and anti-seizure medication side effects

Josh’s experience is not unusual. For some people, medications provide limited control, but only for fleeting periods. For others, a set medication regimen works well for years, then suddenly loses its effectiveness.

Many people end up trying numerous medications over months or years without noticeable changes in seizure frequency or intensity. Tinkering with doses doesn’t always help, either.

Up to 53% of people taking a single medication for epilepsy continue having uncontrolled seizures. While that figure drops to 40% by adding a second medication, there is less than a 5% chance that a third medication will control the seizures. In fact, if two anti-seizure medications don’t work for a person, doctors categorize the condition as drug-resistant epilepsy.

“For a long time, I was on what I call the ‘medication merry-go-round,’” Richard says of his experience. “Everything my doctors gave would work for a little bit and then the seizures would start again.”

Some people also experience significant side effects from anti-seizure medications. These can include weight gain or loss, mood changes, drowsiness, confusion, and memory loss. Finding medication that balances seizure control with quality of life adds a layer of complexity.

In Tennessee, Kim cycled through a series of medications that left her feeling angry, sick, and disoriented without providing much seizure control. Still, she didn’t want to completely quit medication, for fear the seizures could become even worse.

“I had pretty much run out of options,” she says.

Finding other possibilities when medications don’t control seizures

If two or more medications don’t control your seizures, you still have choices. Many people start care with a neurologist who treats a wide range of conditions, but switching to a specialized neurologist called an epileptologist may provide new insight. These specialists can often be found at comprehensive epilepsy centers and might work with your current neurologist to help find the right treatment options for you.

Before meeting new doctors, revisit your quality of life goals for epilepsy treatment. Take time to consider answers to questions such as:

• What do you hope to change in terms of your relationships, work or school opportunities, and level of independence?
• How does epilepsy affect your health — not just your physical health but also your mental health?
• How important is it for you to achieve complete seizure freedom, or are you seeking better quality of life with fewer seizures?
• What level of surgical risk or possible side effects (if any) are acceptable to you to gain a degree of control over your seizures? And what degree of control will you accept?

In addition to reviewing goals, prepare for your discussion with doctors. Think about what to share from your experiences, as well as what questions to ask about next steps. If you haven’t already, bring in those close to you to help. People with drug-resistant epilepsy say a support group is crucial as you try to move forward.

“Talk to them to see what questions they might have,” Jason from Florida says. “Having family and friends for support through this journey has been especially important to me.”

Going beyond medications to procedures for drug-resistant epilepsy treatment

Comprehensive epilepsy centers provide a thorough evaluation, potentially providing a better sense of where the seizures start and what therapies might help control them. Trying new medications or different combinations may still help. More often, though, recommendations involve treatments not yet tried.

When medications alone aren’t enough, your treatment options may include:

Removing seizure source with epilepsy surgery or laser therapy

For some people, surgeons can remove a limited amount of brain tissue where seizures start. This can provide the best chance at gaining complete freedom from seizures.

Not everyone can safely undergo surgical resections, though. After reviewing your diagnostic test results, surgeons may determine that the amount of brain tissue targeted for removal could harm the parts of the brain that control your memory, communication or movement. (Seizures starting on both sides of the brain pose a particular challenge.) You may also decide that removing brain tissue is too alarming a prospect.

Heating the seizure source with MRI-guided laser therapy (ablation) provides a minimally invasive alternative to more extensive brain surgery, but brain tissue still gets destroyed.

Even if removing or destroying the seizure source appears to work, for some people, the results don’t always last.

“I was seizure free for about two years,” Richard says of his surgery for drug-resistant epilepsy. “But my brain found its way around it and the seizures started again.”

Treating focal seizures with electrical stimulation

If you’re not a good candidate for resection or ablation (or don’t want either), a device called a neurostimulator may help. While surgeons place these devices in your body, they don’t need to remove or destroy brain tissue. They treat focal epilepsy by sending out small electrical pulses. And even if they don’t completely stop seizures, they may help reduce their frequency,

One option is vagus nerve stimulation (VNS Therapy), which consists of a device implanted under the skin in the left chest area connected to a wire that is attached to the vagus nerve in the neck. The other two options, deep brain stimulation (DBS) and responsive neurostimulation (RNS System), work via tiny wires placed in the brain. (Learn more about the differences between VNS Therapy, DBS and the RNS System.)

Among these neurostimulators, only the RNS System monitors brain activity continuously, is programmed to recognize a person’s unique seizure patterns, and then automatically responds to prevent seizures before they start. It also records the seizure activity for analysis.

After receiving the RNS System, Josh, Richard, Kim, and Jason all saw their seizure frequency greatly reduced, and they reported a better quality of life.*

In Massachusetts, Christine was able to reduce her seizure frequency. Medications had initially stopped the majority of her seizures, but after 15 years, her regimen stopped working. Switching to different medications didn’t help much and left her in a mental fog.

With the RNS System, under the direction of her physician, she was able to stop taking two of her medications, while lowering doses for the remaining two. Her mind cleared, and she could take in — and remember — details again, including her daughter’s wedding.

“It felt like someone pulled open the curtains and let in more light,” she says.

Sources

• Frequently Asked Questions About Epilepsy
• Anti-seizure Medicines: Epilepsy Foundation
• What if Epilepsy Medicine Doesn’t Work: Epilepsy Foundation
• How Lasers Are Changing the Future of Epilepsy Treatment: Lab Blog, University of Michigan
• How anti-seizure medication works: Epilepsy Society
• Brief history of anti‐seizure drug development: Epilepsia Open