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Epilepsy refers to a spectrum of disorders that alter normal brain activity, causing seizures. Because epilepsy can affect many processes coordinated by the brain, people living with this condition can experience many different symptoms. One of the most common symptoms of epilepsy is fatigue — chronic and overwhelming feelings of exhaustion, tiredness, or weakness. Fatigue is a much more common symptom in people living with epilepsy than in the general population.
Feelings of exhaustion and weakness can affect daily quality of life. Luckily, there are some ways to help manage epilepsy-related fatigue.
The fatigue felt by people living with epilepsy is characterized by mental and physical experiences of persistent and extreme weakness, tiredness, and exhaustion.
One MyEpilepsyTeam member described being more emotional as a result of fatigue: “Does anyone feel so tired that they feel sad? This often happens to me. I am on a lot of medication, and my seizures are not under control, so I guess I have many reasons to be tired.”
Another member reported that fatigue causes them daytime sleepiness: “Does anyone experience sleepiness during the day? I just noticed it today, and a friend said I was snoring.” One member described the impact of seizure-related fatigue on her quality of life, writing, “For several years, I wake up after a seizure, and I am tired for up to seven days and in bed pretty much all day every day. That is the primary reason I lost my job.”
Several factors can cause a person with epilepsy to experience fatigue.
Depression is a known comorbidity (co-occurring condition) of epilepsy, with symptoms that vary from person to person. A study using measures called the Fatigue Severity Scale and Fatigue Impact Scale revealed a high prevalence of depression-related fatigue among people living with epilepsy.
This fatigue may sometimes trigger epileptic seizures. A cycle can start to develop: Depression causes fatigue, which contributes to seizures. These seizures then cause more fatigue, which contributes to depression, and so on. Talk to your doctor about how to treat depression in order to break this cycle.
Many MyEpilepsyTeam members agree that dealing with depression is a common aspect of living with epilepsy: “I never thought I would ever have to deal with depression. With epilepsy, depression is a daily battle.”
Another important risk factor of developing fatigue when living with epilepsy is poor sleep or sleep impairment. In particular, nocturnal seizures (seizures that occur while a person is sleeping) can affect a person’s sleep quality.
A person is considered to have nocturnal seizures if more than 90 percent of their seizures occur when sleeping, which is the case in up to 45 percent of people living with epilepsy.
Both generalized and focal seizure types can occur as nocturnal seizures. Nocturnal seizures tend to occur during the first, lighter stages of sleep or upon waking.
One MyEpilepsyTeam member described nighttime seizures as a source of fatigue: “I recently had several nocturnal seizures, and I am now very exhausted. It will take three days for my body to get back to normal. It takes so much out of you.”
Another member described how nocturnal seizures interrupt her sleep rhythm and cause fatigue the next day: “Does anyone else ever have a seizure in their sleep and find it hard to fall back asleep? Then during the day, it can completely take your energy away.”
There are several stages to a seizure:
Postictal phases have been found to have higher chronic fatigue scores and fatigue impact scores than ictal phases, with people reporting more fatigue and lower energy during the postictal phase. In other words, the recovery period after a seizure is a time of intense fatigue.
Many members reported needing to sleep due to intense fatigue during this phase. “I always go to sleep after a seizure,” wrote one member. “It’s often compared to running a marathon. Your muscles are weak, everything hurts, and you are plain tired.”
Some antiepileptic drugs are known to cause fatigue. A change of medication or time to adjust to your treatment plan may be needed to reduce this fatigue.
One member responded to another’s query about medication-related fatigue: “When I took that medication, I experienced fatigue, anxiety, fear, anger, and mood swings.” They offered some great advice: “When side effects become unmanageable, it’s time to talk to your neurologist and ask for a drug that has fewer side effects.”
Read more about epilepsy treatment options.
Managing fatigue with epilepsy can be challenging because its different causes can be interrelated. Tracking symptoms of fatigue and discussing causes and treatments with your health care team is the best place to start.
The British Epilepsy Association published a study that measured fatigue and depression using the Epworth Sleepiness Scale and the Beck Depression Inventory. The results highlighted the importance of managing depression in order to better manage fatigue with epilepsy.
Medical interventions such as antidepressant medications may help to curb depression. Psychotherapy (talk therapy) and other forms of counseling may also be beneficial. Healthy lifestyle habits can complement efforts to curb depression.
One member swore by exercise to help depression: “I took a six-mile run this afternoon to help with my depression.” Another said they rely on a support animal: “Our therapy cat is super sweet and loves to cuddle with me and my wife. She helps alleviate my stress, anxiety, and depression.”
Working with your doctor to determine what your usual postictal symptoms are may help you better manage those symptoms.
Your doctor may order an electroencephalogram during the postictal phase to analyze brain changes and better treat or manage future episodes.
Being prepared for the post-seizure phase with a routine incorporating help from people you trust can lessen the impact of postictal symptoms like fatigue. Emotional support and validation from people you trust can have a positive impact on the heavy emotions that can accompany this seizure phase. Taking care of your immediate physical needs after a seizure may also help.
Eating a regular, healthy diet and snacks can help to keep up energy levels and fight off excessive daytime sleepiness. Maintaining a healthy weight, hydrating, and getting regular physical activity may also help boost energy levels.
One member found that following a routine and avoiding triggers had the biggest impact on managing fatigue: “Eat healthily, get eight to ten hours of sleep a night, no alcohol, take medication daily and at the same time every day, and take care of your mental health (reduce stress, learn coping skills, and enjoy what you have). In general, avoid the typical triggers.”
One member lamented the cycle of fatigue, poor sleep, and seizures: “My husband has a very hard time getting to sleep and staying asleep. When he has a bad night of sleep, he usually has a seizure. Then, he is so exhausted he sleeps almost all day and can’t get to sleep at night, and such is this vicious cycle.”
Another MyEpilepsyTeam member suggested they try yoga for better rest: “Yoga helps you notice what’s happening in your body and helps you gently let go of stress. It helps you learn how to breathe deeply and evenly and what positions are best to help your body rest. Yoga teaches how to empty your mind of intrusive thoughts and sounds.”
Practicing sleep hygiene protocols can also help you get more high-quality sleep. Some tips for better sleep with epilepsy include:
According to one MyEpilepsyTeam member, a referral to a sleep clinic might help: “I had a good visit with the sleep clinic on Zoom. If you guys are having trouble sleeping, you should ask for a referral to a sleep clinic. He really took the time to give me tips to improve my sleep without medication.”
Psychotherapy is a tried-and-true way of minimizing fatigue in people living with epilepsy. Talk to your doctor about this option and other approaches that may help you manage your fatigue.
Learning how to cope with fatigue is often best done alongside others who understand what you are going through. On MyEpilepsyTeam, more than 100,000 members form a social network and online support group to talk about a range of personal experiences, struggles, and successes.
Do you experience fatigue with epilepsy? How do you manage it? Share your experience and tips in the comments below, or by posting on MyEpilepsyTeam.