Living with epilepsy can affect much more than seizures alone. Sleep, stress, memory, mood, and safety concerns can all shape daily life. For some people, the hardest part is managing unpredictable seizures. For others, it’s dealing with challenges that continue even when seizures are controlled.

Recently, we asked MyEpilepsyTeam members which challenge currently has the biggest impact on them or their family. Their responses showed that navigating daily life was the leading concern. Comments also highlighted employment difficulties and feeling misunderstood.

More than half of respondents chose daily life, stress, sleep, or safety concerns. About 1 in 5 selected seizure control, while 17.2 percent identified medication side effects or treatment changes.

Members’ comments showed how these challenges often overlap. Seizures, medication effects, and memory problems can interfere with work and independence. Stress and feeling misunderstood can make daily life even harder.

For many MyEpilepsyTeam members, sleep problems, memory difficulties, and fatigue can make everyday responsibilities harder to manage. Sleep problems and fatigue can also be connected to seizures, epilepsy medicines, or other health concerns.

One member described how insomnia affects their energy and mood: “When you don’t get enough or proper sleep, it affects EVERYTHING else, especially your mood. I’m too tired to feel like doing anything.”

“When you don’t get enough or proper sleep, it affects EVERYTHING else, especially your mood.”

 

— A MyEpilepsyTeam member

Memory difficulties can also create problems, including at work. “I have difficulty remembering steps and oral directions. This causes problems for me at work, so I write things down, but then people think I am slower at my job. I just want to be correct.”

What Might Help

If sleep or memory problems are interfering with daily life, talk with your neurologist or another healthcare professional. Memory and thinking difficulties can occur with epilepsy and may also be related to seizure medicines, so your care team can help you identify possible contributors.

Noting down when these difficulties happen may help you and your care team identify patterns. Practical strategies, such as written instructions, reminders, and consistent routines, may also help make daily tasks more manageable.

About 21 percent of respondents said controlling seizures or other epilepsy symptoms was their biggest challenge. For some members, seizures happen without warning, creating concerns about injuries, driving, and being alone.

One MyEpilepsyTeam member described experiencing falls and losing the ability to drive: “The hardest part for me at the moment is controlling my focal seizures. Unfortunately, I do not have any ‘tells,’ and I have fallen, and I injured myself. I haven’t driven in four years due to a car accident that was not my fault but made my seizures worse.”

“The hardest part for me at the moment is controlling my focal seizures. Unfortunately, I do not have any ‘tells,’ and I have fallen, and I injured myself.”

 

— A MyEpilepsyTeam member

Beyond physical safety, the uncertainty of when a seizure might happen can cause significant anxiety. Another member described that fear: “The crippling anxiety, knowing it can happen any time. Losing control of my body is terrifying.”

What Might Help

If seizures are continuing, changing, or causing injuries, contact your neurologist. Keeping a seizure diary may help your care team understand patterns and evaluate whether your treatment plan needs attention.

You can also ask about seizure first aid, safety precautions for daily activities, and ways to maintain independence while reducing risks. Safety guidance from the Epilepsy Foundation includes information about driving, water safety, the home environment, and creating a seizure safety plan.

Other common themes included:

• The need to have someone nearby for safety
• Disruptions to family plans
• Concerns about caring for children

About 17 percent of respondents selected medication side effects or treatment changes as their biggest challenge. Anti-seizure medications can help control seizures, but some people experience drowsiness, cognitive difficulties, or other effects that interfere with daily functioning.

One MyEpilepsyTeam member described how treatment created new difficulties even as seizures became less frequent: “I’m on three meds, and drowsiness has always been a hard side effect. I’m on a new medication that … causes cognitive impairment. Now there’s a new challenge.”

“I’m on a new medication that … causes cognitive impairment. Now there’s a new challenge.”

 

— A MyEpilepsyTeam member

Other members described the time involved in addressing medication problems. One member shared: “Medication is causing an issue, which we are in the process of changing. Just taking a little bit of time for this to all move forward.”

What Might Help

If medication side effects are affecting your work, sleep, or daily activities, tell your prescribing clinician. Keeping notes about symptoms and when they occur can help guide conversations about your treatment.

Your healthcare team can help you weigh seizure control against side effects and discuss possible adjustments. Never stop or change an anti-seizure medication without medical guidance because sudden changes can cause dangerous seizures.

Nearly 10 percent of respondents selected “something else” in our poll. These comments highlighted employment difficulties, financial concerns, and the emotional toll of feeling misunderstood by employers, friends, or family members.

One MyEpilepsyTeam member described losing employment and struggling to feel believed: “I lost my job, and they did not believe that I was having a seizure. After that incident, family members did not believe anything I said about my epilepsy.”

“I lost my job, and they did not believe that I was having a seizure.”

 

— A MyEpilepsyTeam member

Even when family members recognize someone’s epilepsy, their reactions may feel dismissive or disrespectful. Another member shared: “The biggest problem is my sisters thinking they understand, but they don’t. They sometimes treat me like a 5-year-old. … It makes me feel belittled and disrespected.”

What Might Help

If epilepsy affects your employment, ask your healthcare team about support services or documentation that may help you request workplace accommodations. Available protections and resources depend on your location.

Sharing educational information with family members may also help them better understand your condition. It can be useful to explain what kind of support you need while making clear which activities you want to manage independently.