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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ER – ICU – 3121 – Home

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂