Living with epilepsy and fatigue

Home > Living with epilepsy and fatigue

Fatigue is one of the most common, yet least addressed challenges faced by people living with epilepsy.  Almost half of people with epilepsy complain of fatigue.

Fatigue is the mental and/or physical experience of extreme and persistent tiredness, weakness, or exhaustion.

It’s more than just feeling tired it’s a deep, ongoing exhaustion that can affect your ability to think clearly, carry out daily activities, and maintain emotional balance.

Why does fatigue happen in people with epilepsy?

There are several reasons why someone with epilepsy may experience fatigue. This can be multi-layered for many people. It may include:

Seizures

Seizures can be physically exhausting.

Most people feel drained after a seizure, especially tonic-clonic seizures, sometimes this can last for hours or even days.

After a seizure, the brain and body need time to recover, which can lead to deep tiredness, confusion, or the need to sleep for several hours.

Sleep disruption

Epilepsy and sleep are closely linked. There are lots of things to consider here that can contribute to poor sleep and fatigue.

  • Seizures, even at the beginning of the evening, can interrupt a full night’s sleep and cause daytime drowsiness
  • Lack of sleep can increase the risk of seizures
  • Some medications affect sleep quality, either causing drowsiness during the day or making it harder to get restful night’s sleep.
  • Sleep disorders are relatively common in people with epilepsy.
  • Sleep-related difficulties are a predictor of fatigue in people with epilepsy

Side effects of anti-seizure medications

Many antiseizure medications list fatigue or drowsiness as a side effect, especially when starting a new medication or changing doses. These effects can be slight or significant, depending on the medication and dose. Sometimes it’s the combination of medications that contributes to fatigue.

Mental and emotional strain

Living with epilepsy can mean daily stress, managing appointments, medications, and unpredictability of seizures. Anxiety, depression, and stress are more common in people with epilepsy, and all of these can contribute to feeling physically and emotionally tired. Depression is also a predictor of and contributes to fatigue in people with epilepsy.

Mental load

Some people experience slower thinking, memory issues, or difficulty concentrating, often referred to as “brain fog.” These cognitive effects can make tasks feel more difficult and harder to tackle, which is physically and mentally draining.

Other health conditions

Other health conditions that the person may have may also contribute to fatigue. For example, sleep apnoea is significantly more common, affecting around 30–50% of people with epilepsy compared to 10–15% in the general population. If you experience, or have been told you have loud snoring, pauses in breathing, make choking or gasping sounds during sleep, or if you wake with a headache, feel excessively tired during the day, or have trouble with concentration or mood, it’s important to discuss these symptoms with your doctor.

Practical tips to manage fatigue

There are ways to help reduce the impact of fatigue and manage your energy levels more effectively.

Talk to your doctor

If you’re experiencing ongoing fatigue, let your treating doctor or GP know. They can:

  • Review your medications to see if side effects could be contributing
  • Check for other reasons such as anaemia, thyroid issues, depression, sleep apnoea or menopause
  • Offer strategies to improve sleep or suggest referrals for support
  • Perhaps consider you for a non-pharmacological treatment

Don’t assume fatigue is just “part of epilepsy” there may be other underlying issues that can be addressed.

Prioritise sleep

Good sleep practices can improve both fatigue and seizure control. Try to:

  • Keep a consistent bedtime and wake-up time to help regulate your circadian rhythm
  • Limit screens and bright lights 1-2 hours before bed – blue and bright light exposure suppresses melatonin release making it harder to fall asleep
  • Sleep in a cool darkened room. Darkness signals your brain to release melatonin while rooms between 15-19 degrees Celsius help you stay asleep longer
  • Avoid caffeine after lunchtime. Caffeine has a long half-life, 5-7 hours, and blocks adenosine, a chemical that builds up during the day and makes you sleepy
  • Create a calming evening routine which trains your brain to associate certain activities or settings with bedtime.

If you suspect you’re not getting quality sleep, ask your doctor about getting a sleep study or assessment.

Balance being active, and rest

Try pacing your day so that you don’t burn all your energy early on. Perhaps try to:

  • Prioritise the most important things first, or when you are at your sharpest
  • Break tasks into smaller steps
  • Take short rest breaks between activities
  • Say no to non-essential demands when needed

Stay active

Gentle physical activity like walking, yoga, or swimming can boost energy and improve your mood. It’s okay to start small, even 10 minutes a day can help.

Always talk with your doctor before starting new exercise routines, especially if your seizures are not well-controlled.

Eat well and stay hydrated

A balanced diet can improve energy levels. Sometimes, small dietary changes can make a noticeable difference. Try to:

  • Eat regular meals with complex carbohydrates, protein, and healthy fats
  • Avoid too much sugar or highly processed food
  • Drink plenty of water throughout the day

Look after your mental health

Managing stress, anxiety, or low mood can ease emotional fatigue. If you’re feeling overwhelmed:

  • Practice relaxation techniques like mindfulness or deep breathing techniques
  • Connect with others who understand through support groups or online forums
  • Speak with a counsellor or psychologist

Carly’s Story

Carly experienced her first seizures at the age of five, following a trampoline accident. Growing up in the 1980s, she recalls that there was little information or support available for her family. “My parents were told very little about the effects of epilepsy, and conversations with doctors mostly focussed on the seizures. We didn’t know anything about the other challenges epilepsy brings.”

Simple activities, like school swimming carnivals, needed extra precautions. “My mum had to be in the water with me during swimming sports, just in case I had a seizure.”

As Carly grew older, the demands of teenage life, like social events and late nights, took their toll. “I was so exhausted, but I kept pushing through. The lack of sleep increased my seizures.” Despite her efforts, she was often misunderstood. “People would call me lazy because I was so tired I could sleep standing up.”

Now almost 50, Carly still battles fatigue every day. “Working full time is tough. I often have to nap in my car during lunch breaks to get through the day.”

Carly believes fatigue is a side effect of the antiseizure medication she takes to manage it. “The medication makes me incredibly tired, but there’s not enough conversation about this. Why isn’t it talked about more? People think we’re lazy, but we’re just constantly exhausted.”

Over the years, Carly has tried different medications, but they weren’t helpful. “I went back to my original medication.”

Living with epilepsy has shaped every aspect of Carly’s life. “It’s a lifelong condition with many hidden effects. I often feel isolated because I’m too tired to socialise, and when I do push myself, I end up having seizures or feeling really unwell.”

Carly wants people to understand that epilepsy is more than just seizures. “We need more awareness of the physical side effects, especially fatigue. We’re not lazy. We’re just doing our best to get through each day.”

Apps and Online Tools

If fatigue is affecting your work, relationships, or ability to function day-to-day, it’s worth seeking support. There are also many online resources to help with mental health as often counsellors and psychologists have long waiting lists. Some are Listed Here

There are several apps available that focus on fatigue management, helping users track energy levels, identify patterns, and adjust activities accordingly.

Apps like FatigueTech and Awaken are designed for workplaces to monitor fatigue risk, while apps like Visible Health and Emerge Australia help individuals with conditions like ME/CFS or Long COVID manage their energy and pacing.

Please note: we have not reviewed these apps

Final Thoughts

Fatigue is a real and valid part of living with epilepsy, but there are ways to help manage it. By understanding what might be contributing to your fatigue and exploring practical supports, you can find a better balance and improve your energy levels.

If you’re struggling, don’t wait until you’re at breaking point to ask for help. Fatigue may be common, but with the right tools and support, it doesn’t have to control your life.

Contact us on 1300 37 45 37 or email [email protected]

Or book a telehealth appointment with an epilepsy nurse

Further reading:

Seizures and sleep

Mood and mental health

References:
Kwon, O. Y., Ahn, H. S., & Kim, H. J. (2017). Fatigue in epilepsy: a systematic review and meta-analysis. Seizure, 45, 151-159.
Kwon, O. Y., & Park, S. P. (2016). Interictal fatigue and its predictors in epilepsy patients: A case-control study. Seizure, 34, 48-53.
Hamelin, S., Kahane, P., & Vercueil, L. (2010). Fatigue in epilepsy: a prospective inter-ictal and post-ictal survey. Epilepsy research, 91(2-3), 153-160.
Lin, Z., Si, Q. & Xiaoyi, Z. (2017) Obstructive sleep apnoea in patients with epilepsy: a meta-analysis. Sleep Breath 21, 263–270.
Somboon, T., Grigg-Damberger, M. M., & Foldvary-Schaefer, N. (2019). Epilepsy and sleep-related breathing disturbances. Chest, 156(1), 172-181.
Senaratna, C. V., Perret, J. L., Lodge, C. J., Lowe, A. J., Campbell, B. E., Matheson, M. C., Hamilton, G. S., & Dharmage, S. C. (2017). Prevalence of obstructive sleep apnea in the general population: A systematic review. Sleep medicine reviews, 34, 70–81. https://doi.org/10.1016/j.smrv.2016.07.002

Get In Touch With Us

    We acknowledge the Traditional Owners of the land where we work and live. We pay our respects to Elders past, present and emerging.

    We celebrate the stories, culture and traditions of Aboriginal and Torres Strait Islander Peoples of all communities who also work and live on this land.

    We are committed to providing a child-safe environment, prioritising the well-being and protection of every child in our care.

    Important Message: This information is not intended as medical advice. Do not make changes to treatment or medications without first discussing with your treating clinician.