Psychogenic Non-Epileptic Seizures
In this post I am going to talk about my most recent diagnosis of Psychogenic Non-Epileptic Seizures, also referred to as Non-Epileptic Attack Disorder (NEAD) for those in Europe. This one has been kind of scary for me. It has actually been going on for years, but was so infrequent that I didn’t feel it necessary to get looked in to. They become very concerning mid April when I became paralyzed and couldn’t respond to my daughter.
I am having one, or several, seizures a day right now. Sometimes they come on suddenly without warning, sometimes if I perceive an injury it triggers them (like when my daughter accidentally kicked me in the head, or my son stabbed me in the nipple with a toy fork), sometimes they are only paralysis and inability to speak, sometimes they are paralysis and muscle spasms, and sometimes they are just muscle spasms.
Since that first main event with my daughter, I have had an EEG and ambulatory EEG. In case you weren’t aware, an EEG is where they glue electrodes to your head, in specific spots, and read electrical activity in your brain. An ambulatory EEG is where they do that, but you take it home with you and they read the activity over a period of time. For me it was 72 hours. Here are some pictures of me with my ambulatory EEG on for your enjoyment.
The original EEG came back abnormal with an area of concern in the left temporal lobe. The ambulatory EEG came back clean, even after having seizures during the test, which verified the diagnosis of PNES.
To learn about PNES as a sufferer, or caregiver of someone with it, please watch this webinar by Dr. Myers called Non-Epileptic Seizures Webinar – An Introduction for Patients and Loved Ones
To learn about PNES as a provider, especially a Psychologist who will be treating people with it, please watch this webinar called Psychogenic Non-Epileptic Seizures: What a Psychologist Needs to Know
Dr. Lorna Myers has been extremely helpful in helping me find appropriate care. Her website is www.nonepilepticseizures.com, and you should visit it for more information.
Please understand that this is truly an illness and not just in someones head. From the information I have read, and you can find at Dr. Myers website, is that it usually accompanies multiple mental health diagnosis and a history of trauma.
Please help me end the stereotype that this is all in someones head and that they may be faking it.
Have you ever had PNES seizures? I would love to hear your story in the comments.
Life’s Hard; Be Kind