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Family Member Frequently Asked Questions

Refer to general FAQs or our extensive resources for more information:

There is no “one size fits all” answer as every person is different. We recommend using our Seizure Action Plan (linked below) to determine helpful ways to respond during a seizure. Often, the best thing you can do is ask your loved one how you can be supportive of them.

This is a complicated question that depends on the person, their commitment to treatment, and their understanding and acceptance of the NES diagnosis. Successful treatment of NES relies on many factors including, but not limited to: engagement in treatment, engagement with behavioral health, family support, believing and understanding the NES diagnosis, and management of other health and/or psychiatric conditions.

Be willing to listen and understand the needs of your loved one even if you don’t understand what it is like to have NES, recognize your role in the support of your loved one with NES, and support your loved one through treatment. NES is not intentional. Absolutely avoid using terms like faking symptoms or being intentional with their seizures.

If there are children who are spending time with or being taken care of by someone with NES, there are some unique considerations. There may be safety concerns or driving limitations in place. Make sure to always observe seizure precautions around children as advised by a doctor. Some people worry that observing seizures might be harming children by exposing them to the seizures. It can be helpful, depending on the age and development of the child, to have a discussion with children that seizures are part of what the family experiences and share with them the plan of how to get help. Also, assure them it is not their responsibility to fix the loved one with seizures. Validate the children’s feelings of fear or other feelings around their loved one having NES. Find appropriate ways to discuss based on the developmental stage of the child and if you are unsure about how, discuss with your health care provider. Emphasize that the child will be cared for and have their needs met even though their loved one has NES.

We don’t currently know of any genetic cause for NES.

For families struggling, there are some supportive resources available you may qualify for that you can discuss with your provider. Some examples are: disability for the person with NES, FMLA for the family member, employment resources, or vocational rehab. Disability is a long process that often requires the help of a lawyer and is best advised on by primary care providers.

It is important for loved ones to practice self-care. Just because a loved one is affected by NES, does not mean other loved one’s needs should go unmet. This can be a complicated balance in a family. NES can change family roles and responsibilities which can change family dynamics. It is important for anyone taking care of someone with NES to consider asking for help caring for a loved one with NES when they need it.

There is, unfortunately, stigma surrounding this illness. Being supportive as well as listening to and validating the experience of a loved one with NES can be helpful. When speaking to others about your loved one’s NES, do not suggest it is not real, being faked, exaggerated for attention, or their own fault. This only reinforces the stigma of this illness. NES is very real and is involuntary.

If a seizure is to occur in a public setting, follow your nonepileptic seizure action plan and support your loved one by controlling their surroundings and other’s reactions to the situation. Do not go to the emergency department unless there is a physical injury that requires emergent care. If your loved one also has epilepsy, follow your epileptic seizure action plan.

Do not feel pressured to share details about NES when you are not comfortable. When you do feel ready, sharing may help loved ones better understand and be supportive. NES can be described to loved ones as:

The body’s way of protecting itself or as an involuntary defense response.

The brain has created and practiced these pathways in response to certain situations and now needs to learn new ways of responding differently.

Physically, a seizure is occurring but without the electrical abnormalities in the brain that can be measured on EEG Instead, NES is caused by the brain’s involuntarily trained response. Studies are being done to better understand the best way to measure this response.

Everyone’s situation is unique with endless possibilities of causes, triggers, and experiences with NES. It is important to only share with family what feels true to the person with NES and their individual experience.