Our Story
My wife collapsed and had a grand mal seizure in our living room one day while she was exercising. This was over 10 years ago. It started with a terrified expression, followed by a loud cry and then she stiffened with her arms and legs outstretched and starting to convulse. She was unconscious and not breathing during the seizure and her lips and face turned blue. I tried to give her mouth to mouth and but it didn't seem to help. I called 911 and feared she was dying. She stopped convulsing and started breathing but was still unconscious. About a minute later she came to and was very panicky. She was terrified and stumbled to her feet and began to walk around in a confused state. The ambulance arrived but she was starting to feel less confused and we didn't have them take her to the hospital. The seizures continued and we finally went to the hospital. The doctor told us that the seizure was possibly a "stress related incident". We didn't understand this and neither did he. He had no answers other than "some seizures are real and others are not."
Prior to this first seizure she had started having flashbacks of severe sexual abuse that happened to her when she was a child. During that severe sexual abuse in childhood she had seizures to protect herself from the pain and the abandonment. Later, when the abuse finally stopped, the seizures stopped. But many years later, in her early thirties, terrible flashbacks of her childhood abuse came back, and so did the seizures. The flashbacks are so real that her mind/body automatically uses the same defense mechanism it did when she was a little girl.
We searched everywhere we could for any information about these types of seizures and found next to nothing. We now know that her seizures are Psychogenic Non-epileptic Seizures and that they are a defense mechanism against the sexual abuse and the resulting flashbacks as well. She voluntarily gave up her driver's license and the freedom that driving brings. She is experiencing terrible flashbacks which are the trigger for her seizures. It is sometimes difficult for her to be around people in everyday settings. Nonepileptic seizures (NES) are as debilitating as Epileptic seizures, and have changed dramatically the way we live our lives.
I have researched NES since she first developed them and have spoken to many leaders in the field of NES. They have confirmed what we have known for years, that there needs to be a great deal more progress made on the understanding and treatment of NES. Some individuals have done great work and are struggling to expand the knowledge of Nonepileptic Seizures and their causes.
We started this Web Site because of the lack of information about NES and lack of support resources for those who suffer from them.
We are constantly seeking out information on specific treatment methods to help my wife and others overcome these seizures. The standard recommendation is psychotherapy but this a very general answer. What we need now are very specific therapies and "techniques" which work best with NES. We will share anything we discover on treatments that seem valuable.
Professional Advisor / Consultant
Selim R. Benbadis, MD
Professor, Departments of Neurology and Neurosurgery
Director, Comprehensive Epilepsy Program and
Clinical Neurophysiology Laboratory
University of South Florida & Tampa General Hospital
Web Site: http://hsc.usf.edu/COM/epilepsy/Benbadis.html
We are very fortunate to have Dr. Selim R. Benbadis, MD as our professional advisor / consultant. Dr. Benbadis is one of the worlds leading authorities in the field of Nonepileptic Seizures and is a committee member of the Workshop on Nonepileptic Seizures. He is the author of over 70 articles and book chapters and is Board-certified in neurology, in epilepsy and clinical neurophysiology. He also serves on several editorial boards.
