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What People Need to Understand About Non-Epileptic Seizures

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Epileptic seizures are caused by abnormal electrical activity in the brain, but they are not the only cause of seizures. People can experience non-epileptic seizures for a whole host of reasons. Alcohol, low blood sugars or low blood pressure or sleep disorders can all cause non-epileptic seizures. I experience non-epileptic seizures as a symptom of a condition called functional neurological disorder, or FND for short.

FND occurs when the brain’s messaging system malfunctions and doesn’t work as it should. As FND affects the whole brain, it can cause many different symptoms, and no two people with FND are the same. Some people may only have one or two symptoms while others may experience a myriad of symptoms. It is often an ever-changing illness.

New research has shown FND is caused by a malfunction in the nervous system and it is now being classified as a neurological illness. This is welcome news for most people with FND. I was talking to a friend earlier in the week who also has FND and we shared how much we hated the old terminology of conversion disorder which is classified as a psychiatric disorder.

Even here on The Mighty, FND and conversion disorder are lumped together, which I feel needs to be addressed as it undoes all the hard work FND professionals and patients are striving to do to separate the two conditions and raise awareness of the true nature of FND as a neurological illness. This in itself makes it hard for me to say to people that I have FND or that I have non-epileptic seizures because people jump to the idea that “it’s all in my head,” which it is, but as a neurological illness as opposed to being psychiatric in nature.

FND non-epileptic seizures are caused by my brain signals going a bit haywire — like when you press the brake pedal in a car and instead the windscreen wipers come on. My seizures have taken many things away from me over the past eight years. I have never been able to learn to drive as I have to be a year seizure-free before I can get behind a wheel. I have had numerous accidents and injuries. When I first started experiencing my non-epileptic seizures, I poured a freshly boiled kettle of water down myself. Another time, I fell backward down a flight of stairs. I am unable to be on my own for very long, and when I leave the house I have to have someone with me for my own safety.

People need to understand that non-epileptic seizures can present very differently from person to person. For example, my friend with FND also experiences non-epileptic seizures, but hers are more of a dissociative experience; she can hear and feel the world around her but she feels trapped inside her head. Whereas I am utterly unconscious convulsing on the floor in a “classic” example of a seizure.

I also want people to know that we are not faking or feigning our seizures. They are not factitious. They are not there for attention or manipulation. I have had my non-epileptic seizures dismissed as these things by health care professionals, which is very damaging and harmful and downright upsetting. When your symptoms are not believed, or are seen as being the outdated psychosomatic or psychogenic type of non-epileptic seizures derived from conversion disorder, it can be very difficult. I now avoid going to the hospital because of the numerous times I have been accused of attention and drug-seeking, wasting the staff’s time, taking a bed from someone who really needs it, being manipulative and much more.

On top of that, I’ve experienced physical damage, being held down or restrained which you should never do to someone having a seizure, epileptic or non-epileptic, or when someone has gripped me so hard to “snap me out of it” that they leave a significant mark. There is no “snapping out” of a seizure.

But most of all, people need to know that our symptoms are real. Please believe us, help us and know that just like seizures from epilepsy, we have no control over our non-epileptic seizures.

Getty image by simple happy art.

Originally published: April 21, 2021
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