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
- Psychogenic (Non-Epileptic) Seizures by University of South Florida College of Medicine
- The Truth about Psychogenic Non-Epileptic Seizures