Psychogenic Non-Epileptic Seizures – What are they?

eye with monster

I want to tell you a little about something that is going on with me.  This is very difficult to talk about.  Admitting this is happening to me is difficult.  Talking about it is difficult.  It shouldn’t be this difficult, but it is.

You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy.  It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication.  (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.)   I do not have them regularly, and I haven’t had many, but I do still have them.

“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1

The type of seizures I get are psychogenic non-epileptic seizures (PNES).  By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1  “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1

Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy.  Diagnosis this way is nearly 100% accurate.  There are about 10% of patients with epilepsy who also have PNES.

“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1

As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it.  I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up.  I’m seeing a psychologist for therapy to try to figure out what is causing this.  I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.

Today I wanted to make people aware that psychogenic non-epileptic seizures are real.  People cannot control them.  People often refuse to accept the diagnosis because of the stigma related to it.  Family and often physicians do not understand that the patient cannot control what is happening to them.  I wanted you to know that you know someone who is going through this, and I have no control over it.  I also wanted people to know they are not as rare as you may think,  “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2

for more information please read

  1. Psychogenic (Non-Epileptic) Seizures by University of South Florida College of Medicine
  2. The Truth about Psychogenic Non-Epileptic Seizures 
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17 thoughts on “Psychogenic Non-Epileptic Seizures – What are they?

  1. Thank you for your willingness to discuss PNES. I am in a graduate program to become an early childhood special education teacher/interventionist. Much of my training is knowing how to help young children with various disabilities and health issues, including seizures and PNES. I appreciate your post because it will help me better understand how to help the children in my future classroom.

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  2. The thing that came to mind was ‘petit mal’ seizures when I was reading the first couple paragraphs. What I LOVE about this post is that you provide reference for your readers and then provide more resources for more education. You are one of those shooting star people who is burdened unjustly but has that strong spirit and does the right thing with what you’ve got to help others and seriously what more can you ask of anyone else in this world but to be kind and help in that kind of a situation?

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    • thank you Bipolar BarbieQ. My seizures have been more like grande mal. Except I don’t loose consciousness. Most of the time I know what is going on around me, other times I don’t. Recently they have had a couple that are more like petit mal. Maybe it’s getting better. (crossing fingers) I’m a person who believes in letting go of the past and just moving on, I don’t want to have to dig up anything that is in my past I might not remember. Why do I need to it’s not a part of me now. My life is different now. I just don’t understand the mind. and I’m pissed off about it. 😛

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  3. I try to transform my judgmental thoughts, but I don’t believe I will ever be able to understand people who can’t understand that “invisible” disorders are real and somatic disorders aren’t volitional or – heaven forbid! – faking it. I see red when I hear comments like those.

    Articles like this one are important – especially when they are bravely written in the first person. You are making SUCH a difference, Wendy. Thank you for ALL of us.

    I will definitely refer back here when I write a post on invisible disorders. Well done!
    xx,
    mgh

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  4. My daughter was diagnosed with PNES AND Epilepsy. First Epilepsy so they put her on Tegratol and nortriptyline .sorry about the spelling errors!. The second Neuro dx’d her with PNES and took her off her meds. A few months later the seizures came back. Now she has them at night only. They wake her up. Her heart is racing at night and daily. She’s having tremors and numbness on one side of her body. She gets Ocular Migraines too. I sure hope her Trauma Therapy can help this. I truly believe she has both seizure disorders. And she was severely abused up to the age of 5 years, so her memories must be coming back. PTSD is terrible.

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    • Yes, Marissa PTSD is terrible. My seizures have all but stopped. I might have one now and then, but only when I’m under a lot of stress. I hope it stays this way, or goes totally away.
      I don’t know about having both disorders, I don’t know how they could tell if you were having a certain type unless they had you hooked up the whole time checking brain waves.
      I hope she gets help soon.
      My best to you and your daughter.

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  5. Great story thanks for telling it. I also have PNES have had going on 3 years i have seizures every day and nothing helps. I also have PTSD and chronic back pain the doctors dont know for sure what is causing my seizures the PTSD or the chronic pain. I get so tired of people saying i sure hope they figure out what is wrong with you. I just say it is what it is and things can always be worse.

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    • I hate you have seizures so often. I was having them multiple times a day, but it has stopped for the most part. I have one every once in a while now. I’ll get this tremor sometimes that always starts right before a seizure but it often comes not without becoming a seizure. as you said, it is what it is. I’m working on what caused mine. It can be buried. I have PTSD too. I’d hate to think any other of my illnesses come from this.
      You will find out what is going on at your own pace. I was ready to know. My body was ready to know. I don’t think I would be able to do the work I’m doing with my therapist if my mind wasn’t ready. (I hope that makes sense)
      You have a good attitude. I don’t know if my experience is anywhere near normal or not. I think I’m lucky.
      If you ever need to talk to someone, please feel free to contact me. Just use the contact form found under the About Me page.
      good thoughts to you.

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