Agoraphobia common in people with epilepsy, new research finds

A new study published in the medical journal Epilepsy Research has found correlation between agoraphobia – the acute fear of public spaces – and epilepsy.

The study, led by Dr. Heidi Munger Clary, looked at 420 adults with epilepsy over a 14-year period, who underwent neuropsychological testing at Columbia University Medical Center in New York.

Different cultural and social characteristics were considered, including age, sex, ethnicity and education history.

More than one-third (36%) of the participants reported significant phobic/agoraphobic symptoms, which were independently associated with non-White ethnicity and education to less than a college degree. However, they were not linked with any epilepsy-related characteristics such as epilepsy type, seizure frequency or antiseizure medications.

Epilepsy-related quality of life was also found to be associated with agoraphobic symptoms.

In 1995, Orrin Devinsky and his team developed a scale to measure the quality of life in people with epilepsy through cognitive factors, mental and physical health.

Using this scale, high phobic symptom scores were associated with poor epilepsy-related quality of life. Moreover, while assessing factors associated with quality of life, researchers found that age, non-White ethnicity, and depression were also independently associated with poor quality of life.

According to the researchers, this may suggest that agoraphobic symptoms have a significantly negative impact on quality of life for people with epilepsy.

“Providers might want to consider more robust symptom screening methods to identify and better assist these patients”, said Dr. Munger Clary. “This may be important to improve health equity, given other key study findings that show those lower education and non-White race/ethnicity had increased odds of significant phobic/agoraphobic symptoms.”

Key results were discovered in this new study – non-White people and older people are more likely to fear public spaces, and this can have serious consequences on their mental health and overall quality of life.

The fear of experiencing seizures in public is common in people with epilepsy. The lack of awareness around this condition, and a lack of understanding about what to do if someone has a seizure can make it harder for people with epilepsy to feel safe in public spaces.

This lack of understanding and awareness also has a knock-on effect on the employment opportunities of people with epilepsy. In a 2016 poll, a quarter of respondents said they would be concerned about working with someone with epilepsy, with 63% of them explaining that it is because they had no idea about what to do to help a colleague during a seizure.

A recent survey conducted by Epilepsy Action showed that 67% of people with epilepsy are experiencing more stress due to the rising of cost of living, and, more worryingly, 2 in 5 have had more seizures as a result.

Vulnerable people need to feel safe and respected – having a seizure can be very distressing, and experiencing one in a public place, without any trained support, can also be dangerous.

Epilepsy Action has developed an Employment Toolkit with the aim to support employers to adjust their workplace for their employees with epilepsy, guaranteeing a safe space where they can do their job without fear or anxiety.

However, it is essential that the government recognises the importance of delivering training for schools, university, and workplaces. This would at least ensure that the stigma around epilepsy can be slowly erased, and that people with epilepsy are aware that public places can be safe places, too.