Non-Epileptic Seizures With Audienta!

Hello everyone, this is the second interview under the series dubbed "Inclusivity Diaries" by the Disability Support. Read the first interview post for the autism awareness day event Here (text in blue is clickable).

Special thanks to @audienta, who was so patient and kind in answering these questions. Audienta has always been a helpful resource, and greatly helped me when I needed help with the seizure first aid post. Audienta also created an amazingly resourceful post on non-epileptic seizures, with everything you need to know. Click here to read!

Question (1): Was it difficult to get a diagnosis with NES? What were the challenges?

Answer: For me, the NES became stronger over the years. For a long time, I thought they were panic attacks, even though it often didn’t really make sense. When I had the first very obvious seizure, I got the diagnosis “dissociative seizures” quickly. It frustrated me a lot since they didn’t even take epilepsy or something else in account, just because I have other mental disorders. It needed a lot to get diagnosed properly and with that, get access to treatment options.

Question (2): When dealing with seizures, what is one thing you wish people knew about them?

Answer: I wish that they knew that there are a lot of different kinds of seizures which have to be handled differently and that they believed me, my medical ID and my emergency contact and followed our instructions. I have often had the experience with medical professionals that they either freak out when I get a seizure and call the ambulance even when I’ve tried to give them instructions beforehand. Or they realise that I don’t have epileptic seizures and therefore think that I simulate and treat me very poorly. I’ve even woken up in a psychiatric hospital multiple times because the emergency room staff didn’t know what else they should do with me.

Question (3): What are struggles of having non-epileptic seizures?

Answer: At the moment, I can’t really go anywhere without someone by my side. NES cause a lot of uncertainties for me as well as for my environment. I never know when to expect the next seizure, how long it’s going to take and how the people around me are going to react.

Also, I feel the effects of a seizure for days. For example, it worsens the pain, the fatigue, the brain fog, etc. And this has the potential to stress me out which increases the risk of getting another seizure…

Question (4): Do you think there is sufficient medical research and treatments to support those experiencing NES?

Answer: No, definitely not. I mean, there’s even a lack in the research and treatment for epilepsy which is more common than NES. Like I’ve mentioned before, most of the medical professionals that I’ve dealt with before, didn’t really know what non-epileptic seizures are and how to handle them. Regarding treatments, psychotherapy is the recommended way to deal with it. For me, it hasn’t helped yet and I know that a lot of other people don’t find helpful treatment as well. The prognosis for people with NES currently isn’t good and I really hope that there will be more research on it soon.

Question (5): How would you explain non-epileptic seizures to someone who has never heard of it?

Answer: Non-epileptic seizures are very similar to epileptic seizures with the difference that you can’t see unusual activities in the brain in a normal EEG. Like epileptic seizures, NES can look very differently. Even one person can have different types of seizures at different times. You can learn more about it here: Non-epileptic seizures | 7 Cups

Question (6): What do you think is the best way for people to support someone when having a seizure (both during and after)

Answer: It depends who you are supporting and what kind of seizures they have. @MyNameIsNicole has written a great post about seizure first aid here: Seizure first aid | 7 Cups

For me, if I have a grand-mal seizure, the first thing that I’d like you to do is to make sure that I’m safe and laying on my side. Next, you should make sure that I get enough oxygen, especially if it’s a long seizure. As soon as you know that I’m safe, you can relax, that helps me as well. Things you can do, while waiting until the seizure has passed, are applying something cold on my neck, talking to me calmly and maybe touching my arms so that I know that you are there. If the seizure takes longer than 30 minutes, I need someone to give me my rescue medication. And then, after the seizures, it’s really important that you make sure that I don’t drift away again and that you stay with me until I’m feeling okay.

Question (7): Do you have any hobbies/passions? What activities do you enjoy doing?

Answer: I like listening to and making music, drawing, painting, writing, and being outside. Having deep conversations with my friends or other people can be really valuable to me as well. And of course 7 Cups! I love to be here.

Question (8): Are there any annoying questions people ask about non-epileptic seizures and seizures in general?

Answer: No, I don't think that there are annoying questions. It’s the prejudices that are annoying.

Question (9): In your opinion, is there a stigma around conditions that cause seizures such as NES, epilepsy, encephalitis, etc?

Answer: I don’t think that I have personally experienced a stigma that’s regarding conditions that cause seizures in general. But I think that there is a stigma that all people who have seizures are cognitively disabled which definitely isn’t true.

Question: Is there anything else you would like to say?

NES are a symptom of a functional neurological disorder (FND). Besides seizures, for me, FND also causes symptoms like pain, paralysis, visual changes, and a lot more. Why I’m mentioning this: April 2022 is FND awareness month! You can learn more about it here: World FND Month - FND Hope International The tag for this month is #fndaware.

With the wonderful help of Audienta, I hope you learned a few things about NES as well how you better support someone when having a seizure. The aim for this interview series is to acknowledge and spread awareness of the different conditions people live with by learning from people with direct experiences.

If are interested in participating in this series, fill out this interest form and we'll get back to you shortly.

What did you learn? Comment below❤️