A seizure is a sudden increase in electrical activity in your brain that leads to changes in body movement, sensation, or awareness. People with epilepsy are more likely to experience seizures than those without epilepsy.
If you have epilepsy, you won’t always know when a seizure is coming, and the fear of having a seizure may affect your quality of life.
Some strategies may help reduce your fear of seizures and improve your overall well-being. But if you’re in crisis or need support, reach out to a doctor or a mental health professional for guidance.
There are multiple names for the fear of seizures in epilepsy. Some researchers use the term “seizure phobia” when talking about anticipatory anxiety of seizures (AAS). AAS is a fear or preoccupation with the possibility of seizures that interferes with your daily life.
According to other researchers, seizure phobia includes this preoccupation with seizures along with other symptoms. In one 2024 case report, a woman with signs of seizure phobia refused to watch another person’s seizure or use the words “epilepsy” and “seizure.”
In a 2022 study examining seizure phobia, 47 of 69 people with epilepsy (68% of the participants) said they were afraid of having a seizure.
Nineteen of those 69 people (27.5%) met the full criteria for a diagnosis of specific phobia in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a guide that professionals use to identify mental health conditions. The criteria include significant distress because of the phobia and a level of fear that is out of proportion to the actual danger.
The United Kingdom’s Epilepsy Society says fear of seizures is understandable since they are unpredictable and often frightening. You might live with and manage your fear of seizures without experiencing AAS or seizure phobia.
Fear is reasonable when you don’t know when you’ll have a seizure or how bad it might be.
Anxiety and other mood changes can also be part of the physiology of a seizure, which means you might experience symptoms of these conditions before, during, or after a seizure because of the increase in electrical activity in your brain.
People who experience anxiety as a part of seizure physiology might be more likely to have AAS.
A 2022 study of 91 people with epilepsy found that those with AAS experienced emotional distress and negative emotional behavior during seizures. The amygdala (a part of the brain that regulates anxiety and develops emotional memory) was also significantly activated at the start of seizures in people with AAS.
A person’s history of trauma or feelings of safety might also play a role in AAS development. In a 2021 study of 87 people with refractory focal epilepsy, 53% of the participants had AAS. Those with AAS were more likely to have experienced traumatic events in the past and to report that they felt unsafe during previous seizures.
Living with epilepsy might increase the chances of a mental health diagnosis. The lifetime risk of developing a psychiatric condition is 2 to 5 times higher among people with epilepsy, and 1 in 3 people with epilepsy will have a psychiatric diagnosis at least once in their lifetime.
Some research suggests that existing mood or anxiety disorders can make it easier for people to develop AAS. Mood disorders and anxiety disorders are the mental health conditions with the highest prevalence rates in people with epilepsy, occurring in 35% and 25.6% of people with this condition, respectively.
If you have a fear of seizures, it might change your thoughts or behaviors. You might:
worry about having a seizurefear the symptoms of a seizure or of epilepsyworry about triggering a seizureavoid situations where people might see you have a seizureworry about the impact of a seizure on othersavoid places where it’s hard to get help during a seizure
These thoughts and behaviors can become distressing and may negatively affect your mental health. You might find that you react to fear of seizures in any of the following ways:
withdrawing from othersavoiding being alonekeeping to a rigid epilepsy medication regimen and vigorously avoiding apparent seizure triggers
You can take some proactive steps to help reduce or manage your seizure anxiety while living with epilepsy.
Some research shows that AAS is more prevalent among people who have had epilepsy for a shorter time, suggesting that it’s possible to develop effective coping strategies over time. Deliberate strategies might help you increase your sense of control, leading to fewer anxiety symptoms.
Build a safety plan
A safety plan gives the people in your life guidance for how to keep you safe during a seizure. You can use a seizure action plan template to record important information, including the “Stay, Safe, Side” instructions for seizure first aid.
Keep the plan in a visible place and review its contents with anyone who might be with you during a seizure.
Learn seizure triggers
Tracking your seizures can help you identify your triggers. Consider keeping a diary that lists the time and date of each seizure, as well as any other important details. Common triggers include:
certain times of daylack of sleepillnessflashing lightssubstance usestresshormonal changes, such as those that occur during your menstrual cyclecertain foods, such as those containing caffeinedietary factors such as dehydration, nutrient deficiencies, or low blood sugarsome medications, such as diphenhydraminemissed doses of antiseizure medication
Anxiety is also a seizure trigger for some people with epilepsy, so developing a plan to manage anxiety may help reduce your chances of experiencing seizures.
Use grounding techniques
Grounding techniques help you shift your focus from negative, anxious thoughts back to the calm of the present moment.
One technique you may want to try is to carry a grounding object, such as a small rock. When you feel anxious, hold the object and focus on its texture, weight, temperature, and other sensory characteristics.
You can also try the 5-4-3-2-1 technique. When you feel anxious, take note of your environment and observe:
five things you can seefour things you can touchthree things you can heartwo things you can smellone thing you can taste
Grounding might help interrupt thoughts of worry about seizures and bring you some mental relief in the moment.
Use your support system
Consider communicating with family and friends about how seizure anxiety affects you. They might be able to better support you if they understand your needs.
You might also want to check out support groups through the Epilepsy Foundation or other organizations to connect with people who share your experience.
You may find it helpful to speak with a mental health professional at any time while living with epilepsy. They can help you learn techniques to manage the fear of seizures and prevent it from disrupting your daily life.
Strategies you might explore with a mental health professional include:
cognitive behavioral therapy (also called “talk therapy”) to develop individual coping strategieslifestyle and stress management techniques to reduce your anxietymedication to help you manage symptoms of anxiety and epilepsy
You might feel a greater sense of urgency if your quality of life has decreased because of the fear of seizures. If you’re experiencing thoughts of harming yourself, don’t push them aside. You’re not alone, and you can call or text 988 for support.