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Epilepsy:A Doctor Discussion Guidefor Patients and Caregivers

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Expecting the unexpected

When you’re living with epilepsy or caring for someone who is, the unexpected is often your normal. Episodes of frequent seizures can feel like they appear out of nowhere, and trying to manage and prepare for this unpredictability can leave you feeling anxious and exhausted.

If you are looking for treatment options that better suit your needs, or for more options on behalf of someone you care for, sharing your experiences with your care team is the first step. This guide for epilepsy patients and caregivers can help you start the conversation.

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When daily meds aren’t enough

Even with a daily anti-seizure medication (ASM), seizure episodes can become more frequent without warning. Muscle jerks and stiffness, sudden weakness, and repetitive movements can all have great impacts on patients’ quality of life. They can also bring up a range of emotions for both patients and caregivers, including fear, frustration, and sadness.

When seizures just won’t quit – even when sticking to daily meds and lifestyle changes – talking with your neurologist about changing needs can help you work together to explore your options.

Questions for your neurologist

Do you or someone you care for have an upcoming appointment with your neurologist? If so, this is a great time to check in with yourself as a patient or care partner, take stock of what’s changed, and get your questions in order.

If the fear of the next seizure episode is overwhelming, sharing your concerns with your doctor can help you come up with a plan.

Not sure where to start? These questions can help guide a conversation.

Tracking seizures

  • I feel like my seizure episodes are more frequent lately. Does this mean I’m experiencing progression?
  • Are there any tools that can be used at home to track seizure frequency?
  • If we don’t act now, could the seizures become more frequent?
  • What will we do if that happens?

Exploring treatment options

  • Even with a daily medication, the seizure episodes seem to be happening more often. What’s our next move?
  • Are there any treatment options besides daily medication? How do those other treatments work?
  • How will we know when it’s time to add something new to the treatment plan?

Caregiver support

  • What other treatment options are available for us to try? What will I need to do to make sure it has the best chance of working?
  • It’s hard for me to see the person I care for experiencing seizures more frequently. What are some ways I can best support them?
  • I’ve had a lot of anxiety lately about when the next seizure will be and if I’m prepared for it. Can you recommend support groups, therapists, or other resources for caregivers of people living with epilepsy?

Symptom Check-in

Noticing changes?

When seizure episodes become more frequent and difficult to predict or control, they can be hard to track and manage. Let’s check in and see how you’ve been feeling lately.

In the last month, have you experienced an increase in any of the following?

☐ Full or partial loss of awareness
☐ Muscle jerks or muscle stiffness
☐ Loss of muscle tone
☐ Changes in senses and emotions
☐ Confusion or fear
☐ Sudden stillness
☐ Staring
☐ Repetitive movements like hand-clapping

The Check-up
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What to say at your next appointment

Describing more frequent episodes of seizures can sometimes be tough. Here are some ways to share your experience:

For patients:

  • “The fear of my next seizure feels like it’s taking over my life. How can I get back to living life with more peace of mind?”
  • “Even with treatment, my seizures seem to be getting worse. Is it time to explore other options?”

For caregivers:

  • “I feel increasingly worried about being prepared for seizure episodes. Can we talk about that?”
  • “What resources are available to me as a caregiver as I navigate more frequent seizures?”

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