Self-Advocacy and Anti-Seizure Medication
This post includes quotes and anecdotal information from the epilepsy community that are sourced from an archived forum. The content in this post may not apply to everyone. Experiences with epilepsy and seizures vary greatly on an individual basis. The information shared in this post should not be substituted for medical advice. Please contact your doctor or medical team if you have any non-urgent medical questions. If you are experiencing a medical emergency, please call 911.
Living with epilepsy often means taking medication every day to help control seizures. These anti-seizure medications (previously anti-epileptic drugs), like levetiracetam, can be life-changing. However, they also come with side effects that can significantly affect how you feel, think, and function. Reporting issues with medication is vital for your treatment plan and your quality of life.
Many people with epilepsy experience challenging side effects from anti-seizure medications (ASMs), including fatigue, mood changes, memory issues, and more. These side effects are often under-reported or they may be dismissed at a doctor’s office.
When medication causes problems, many people feel unsure about what to do. Should you wait it out? Switch medications? Lower the dose? And most importantly, will your doctor listen to your concerns? Learning how to talk to your care team and speak up about concerns is important. It’s time to speak up and get the care you need.
Community Voices: The Power of Self-Advocacy
“My neurologist is helping me reduce the dose slowly. I feel so much better already — the depression, anger, and anxiety have lifted. We’re doing it gradually and so far so good.”
“I have both raised and lowered the dosage at different times, but don’t do this by yourself — talk to your doctor. Never try to alter dosages without permission; it could be dangerous.”
Many individuals have shared their experiences with seizure medication and working with their healthcare team. Key themes the community shares:
- You know your body best
- Clear communication matters
- Balance quality of life with seizure control
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The Power to Speak Up
Anti-seizure medications often involve a delicate balance. There should be enough medication to stop seizures without causing unmanageable side effects. This “sweet spot” is different for every person.
Common concerns reported include:
- Mood changes (irritability, anxiety, depression)
- Brain fog or memory issues
- Fatigue and lack of energy
- Behavior changes (loved ones may notice before you do)
If you’re experiencing any concerns, don't just push through them. Left unaddressed, they can affect your relationships, job, education, and emotional well-being. If you are still facing issues long after starting an ASM, message your doctor to discuss them and what can be changed.
Why Self-Advocacy Matters
You are the expert on how your body feels. While epileptologists specialize in seizure control, they may not always be aware of how strongly a medication is affecting you unless you tell them clearly. Persistent self-advocacy can lead to better health outcomes.
Advocating for yourself can:
- Prevent long-term side effects from going unaddressed.
- Help you find a medication that controls seizures without sacrificing quality of life.
- Strengthen your relationship with your doctor as a true care partner.
- Help others. Your advocacy can help doctors create better personalized treatment plans for everyone.
Tips for Advocating for Yourself
Self-advocacy doesn’t mean demanding something or being confrontational. It means clearly expressing your needs and working collaboratively with your healthcare team. Below are tips on how you can do that effectively:
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When to Speak Up
Seizure control is important but so is feeling like yourself. If you’re experiencing side effects that interfere with daily life, it’s okay to speak up. The path to epilepsy care isn’t “one-size-fits-all,” and your voice is a vital part of that journey.
Don’t wait for a crisis, talk to your doctor if:
- You notice a change in mood, thinking, or energy since starting medication.
- Friends or family say you’re “not acting like yourself.”
- You’re tempted to skip doses because of how the medication makes you feel.
- You’re unsure whether side effects are “normal.”
Even if your seizures are under control, you deserve a treatment plan that allows you to thrive, not just survive. Resources are available to help you navigate your epilepsy:
- Seizure medication list
- Medication resources
- Non-medication treatment factsheets- including surgery and dietary therapy
- Seizure forms- to detail and track changes in seizures and more