Taking Anti-Seizure Drugs: What Are the Long-Term Risks?
Managing drug treatment for epilepsy can be tricky because you need to balance it with your quality of life. Anti-seizure or antiepileptic drugs (AEDs) effectively prevent seizures in about 7 out of 10 people with epilepsy. But they can cause serious side effects. These side effects can affect your ability to work, go to school, or drive a car.1,2
AEDs can cause:1,2
- Cognitive side effects, like problems with:
- Physical side effects, like:
- Weight gain
- Weight loss
- Bone loss
- Birth defects if you take them during pregnancy
Long-term effects of seizure medications?
With all this, you may be wondering what the long-term risks are for these drugs. Knowing how these drugs work, how their safety is measured over time, and your risks can help you learn more about the long-term effects of AEDs.
What do AEDs do to my brain?
For your brain to function normally, it relies on communication between millions of nerve cells (neurons). There are always some nerve cells resting. At the same time, other nerve cells are acting on each other, either increasing or decreasing each other's activity.3Seizures happen when your brain's circuits are imbalanced. This can happen throughout your brain or in a specific part. When this happens, neurons start firing in an abnormal way.3
For some AEDs, the exact way they work is unknown. For others, we know that they work by changing either the:3
- Electrical activity of neurons by altering how certain molecules enter and exit the cell membrane
- Way chemical messengers (neurotransmitters) work in the brain
What are the common risks of anti-seizure medications?
As of 2022, there are more than 30 AEDs available. Each drug has its own risks, benefits, and side effects. The most common side effects of AEDs include:1,4
- Upset stomach
- Blurry vision
Many people who take AEDs report negative effects on their memory and thinking.1
How are long-term effects and risks measured?
In general, doctors assess long-term risks of AEDs by looking at a combination of:5
- Drug safety
- The willingness of people to take the drug over time
A drug could have negative side effects but a person might decide it helps control their seizures, so they keep taking the drug.5
The long-term risks of each drug vary. But many studies show that over time, side effects and risks of AEDs remain about the same as when first starting treatment.1
Is it epilepsy or my seizure medication causing symptoms?
Unfortunately, epilepsy itself can cause symptoms similar to the long-term side effects of AEDs. This can make it hard to tell what is causing the unwanted side effects. Both epilepsy and AEDs can cause problems with:1,6
Making choices about your risk
There are risks with all drug treatments, including AEDs. But not taking AEDs can be dangerous and lead to serious complications. The risks do not outweigh the benefits.7,8
Getting and maintaining good seizure control should take priority. For most people with epilepsy, this means taking AEDs. However, everyone is different. And you and your doctor may have to adjust doses or treatments as you go along.7,8
Following an epilepsy treatment plan can be hard
Epilepsy can be hard to manage. To control your seizures, you might need more than 1 drug. Because of this, following your doctor's treatment plan can be challenging.4
Barriers on your path to controlling epilepsy may include:9,10
- Fear – You might be scared of the risks and side effects of therapy.
- Costs – Drugs and other treatment can be expensive.
- Misunderstanding – What you think you know about the drug or disease may not be true.
- Too many medications – Taking or managing multiple drugs is hard for anyone.
If you are struggling to follow your treatment plan, talk to your doctor about ways they can help.
Are the risks worse than the benefits?
Having fear or worry about your health is normal. When faced with a chronic disease like epilepsy, this fear can grow. But to manage epilepsy, most have to take AEDs.2
Building communication and trust with your doctor will help you gain the confidence you need to have important conversations. Ask the questions about drug safety and treatment plans. Be the best advocate you can be. Talk to your doctor about ways you can reduce risks of taking AEDs in the long term, as well as methods to help you maintain your treatment regimen.
The challenge is balancing your treatment plan with the risks. Long-term risks vary and may look different for everyone. For some, brain fog from AEDs can be debilitating. For others, brain fog may not be a side effect. However, each drug has been proven safe by clinical trials and approved by the Food and Drug Administration (FDA).7,8
Living an active, healthy lifestyle while also managing seizures is possible for many people with epilepsy. Weighing the risks and benefits of your treatment is best done together with your doctor to make sure you get the care needed to manage this complex condition.8
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