PNES/PNEA/Functional Seizures

I had my brother record the video up top because I felt it coming on and wanted to show my neurologist. I uploaded it to YouTube as a way to spread awareness of PNEA, as even healthcare professionals don't know a lot about them. My sister is the one who was helping me, at only nine years old. I'm lucky to have a helpful family, not everyone has that.

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What do I mean by PNEA/PNES/functional seizure?

PNEA - Psychogenic Non Epileptic Attack

PNES - Psychogenic Non Epileptic Seizure

All three of those terms mean the same exact thing, terminology has just changed over time. My providers and I typically use PNEA because even though it looks like a seizure, it technically isn't. A seizure is a period of abnormal electrical activity, which doesn't happen during PNEA. They were, and sometimes still are, referred to as pseudoseizures. However, many providers have changed their terminology to one of the three above because the prefix "pseudo" means "fake" and why would anyone fake these awful, disruptive attacks?

If it isn't a seizure, then what are they?

This is a somewhat complicated question, even to healthcare professionals who deal with them. (If they don't specialize in it, forget about asking them. They will send you to the emergency room.) However, from what I learned from a neuropsychologist who does specialize in them, PNEA are a physical manifestation of complicated feelings. In his work, complicated feelings are when you have both positive feelings and negative feelings at the same time.

How is Functional Neurological Disorder (the umbrella term for PNEA) diagnosed?

There are many symptoms besides just PNEA in the FND diagnosis. Some of mine are numbness and struggling to walk from muscle weakness. If you have seizures of any kind, doctors do a test called an electroencephalagram (EEG), where they attach wires and monitor brain activity. Here are two pictures from some long term EEGs of mine...

If the EEG comes back with no results but you definitely had what looked like a seizure (the room has a camera, so they WILL see it), it is most likely PNEA. There are other things it could be but depending on symptoms, it might just solidify their belief that it is PNEA, as it did for me in 2018.

How is FND (more specifically PNEA) treated?

Let me start with this... there is no cure. There are very few treatments and they are VERY difficult. For reference on just how hard it is, I have been working my ass off since I learned about the treatments and I still have PNEA nearly daily. The number one treatment is therapy. Since PNEA are psychological, therapy can be beneficial. I did a type of therapy called short term intensive psychodynamic therapy. What that is, put simply, is learning how to feel your feelings. Rather than what people assume when you say "therapy," you focus on what feelings are experienced as in your body in a physical sense.

There is no medication for functional neurological disorder BUT medication may help if someone has underlying mental health issues (depression, anxiety, bipolar, etc.), as I do. I was diagnosed with depression and anxiety at 14 and have been on various medications since I was 16, when I first saw a nurse practitioner for my mental health. I was misdiagnosed until early 2023, at 22 years old so my mental health, and in turn FND, suffered greatly. On antidepressants, I was having dozens of PNEA every day. Now that I am on a mood stabilizer (since it is bipolar type 2, not depression) that works great for me, I have 1-4 PNEA every day, on average.

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If anyone has any questions about PNEA or my experience, feel free to ask. I have grown to be comfortable in sharing what I know. Obviously I don't know everything but I like sharing what I DO know.