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Nonepileptic seizures
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When I received a diagnosis of "stress" instead of epilepsy in 1986, I didn't know there was a term for it. I was discouraged because I thought there was no help for me. Doctors thought I should see a counselor; but instead of giving me hope, this made me feel more stigmatized than an epilepsy diagnosis would have made me feel. I was happy except for wishing I had better luck in forming friendships with my peers; but I had already seen a counselor for this and she felt that the problem was simply a difference between my interests and those of my peers: I was "wise beyond my years." It would iron out over time, and I would need to accept it. I formed my friendships with older teens; and as I entered high school and had greater access to these older students, things did seem to improve. But the seizures began, and now apparently something was "wrong" with me that eeven a counselor couldn't fix.
My solution was to ignore it. I didn't tell my parents about the episodes. When Mom noticed my slurred speech and clumsy gait and asked what was wrong, I said, "I don't know." When I really did feel stressed, I did seek counseling--and it was helpful for what I needed it for. But the episodes continued.
In 1995, I learned there was a name for this. I learned it in a very painful way. A friend moved into my apartment and had a seizure on her second day there. I had never seen anyone have a "grand mal" seizure, and I didn't know what to do. I called her mom, and that was the first time I heard the word "pseudoseizure." I have since come to detest the word. It caused more damage in my friend's life than the seizures themselves. Even though it was an accurate diagnosis, it was a painful one because of its implications.
On the other hand, the encounter with Melanie's pseudoseizures did have some positive effects. It led us to research epilepsy on the Web, and that research led to the development of my site, which was one of the first sites to provide a centralized source of links to information about epilepsy on the web in 1995. It also gave me the courage to confront my own episodes again. Neurological testing was normal in 1996, and I buried my head in the sand again regarding epilepsy. But I iddn't bury my head regarding my mood instability; and that led me to treatment with Depakote, which led to a marked decrease in episodes. This did not go unnoticed; and eventually I underwent more rounds of neurological testing. Someday I would find out the answer--in fact, I would find that there was more than one answer.
In 1998, I set up an email-based support group for people with "nonepileptic seizures," which had become my preferred term based in things I had learned as the result of my research. The group is hosted at Yahoogroups. While some people still struggle with their seizures years after joining, occasionally some find their answers. This always makes me feel that starting the group was one of the most worthwhile things I have ever done, even though I still search for my own answers seven years later. Some of the members find that they were misdiagnosed with nonepileptic seizures for several years and should have been treated for epilepsy. This is especially heartbreaking for me because most of the emphasis in literature has been on the prevalence of misdiagnosis of NES as epilepsy and the overprescription of antiepileptic medications. I certainly sympathize with the feelings of people who are placed needlessly on high dosages of medications that cause potentially serious side effects; but equally serious is the underprescription of these same medications for a person who is having uncontrolled seizures that are misdiagnosed and the emotional damage that occurs from years spent trying to "fix" something that cannot be "fixed" in counseling. I know about it. I have lived it on all sides.
I hope on this site to provide a balanced point of information regarding nonepileptic seizures. Much of the information on the site is anecdotal, based on the experiences of members of the email support group. Where possible, I have also provided links to quality information about nonepileptic seizures and treatments. Finally, this site is a place where people can share their stories. One of the most positive aspects of the email support group is the encouragement that people receive from knowing they are not alone. If you would like to suggest a link or share your story on the site, please send me an email. If you wish to have your story shared on the site, please say so in your mail since I do not share stories without permission.
Sarah's Seizure Diary Instructions
These instructions is in MicroSoft Word form and will help you keep track of your seizures in relation to various possible influencing factors.
Living with Psychogenic Nonepileptic seizures
I wrote this article based on my experiences living with a person who had psychogenic nonepileptic seizures, which at the time were diagnosed as pseudoseizures. When I first wrote the article, not much information was available about living with PNES. That seems to be changing; and it is now fortunately possible to find information about other conditions that look like epilepsy. Still, I hope this article will be helpful to those who need it.
Frequently Asked Questions about Nonepileptic Seizures
This factsheet provided by Epilepsy.com provides basic answers to questions about nonepileptic seizures for patients.
Factsheet for doctors
This factsheet for doctors provides basic information with a leaning toward diagnosis of psychogenic seizures but some mention of other possible causes which should be investigated.
The Truth About Psychogenic Nonepileptic Seizures
This article highlights the opinions of Selim Benbadis, a neurologist from Tampa, FL, with an interest in psychogenic NES, and discusses the ppossible overdiagnosis of intractible epilepsy and misdiagnosis of psychogenic NES.
Psychogenic Nonepileptic Seizures
This article from the American Academy of Family Physicians provides historical background regarding the concept of psychogenic nonepileptic seizures and information about differential diagnosis.
EMedicine Psychogenic Seizures article
This article by Dr. Benbadis discusses psychogenic nonepileptic seizures. It mentions that other physiologic causes exist but does not discuss them.
University of Michigan: Health Minute on Pseudoseizures
This article describes how the diagnosis of psychogenic seizures was explained properly to a U. of M. patient and was relieving when her seizures had not responded to medication.
How Can You Have a Seizure in Response to Anxiety?
This discussion on a bulletin board presents an excellent explanation of how and why the body can have seizures as a response to anxiety.
Video EEG
This article discusses the use of video EEG monitoring to diagnose nonepileptic seizures. Portions of it may be disturbing to people who have been diagnosed with NES.
Sarah's Story
This is the story of my long search for answers regarding my seizures.
Sarah J. Blake