Psychogenic non-epileptic seizures: Ming shares her story of living with PNES

My psychogenic seizures began like this: I was exposed to “Workplace Bullying.” Even though I had exemplary yearly evaluations my supervisor began the bullying and as it increased I reported it to the head boss. They planned to have 5 back to 5 meetings in one day with him and others (there’s a term for this “Mobbing”). The evening before the meetings, I began to prepare my clothes for the next day and totally ‘blew out’ with hands flailing, stuttering and passing out with seizure like movements. I did not go to work the next day, but rather to my primary physician.

My doctor witnessed my epileptic-like seizure and scheduleda sleep deprived EEG through a neurologist. During the EEG, I ‘blew out’ into same presentations as above. The neurologist confirmed epilepsy and started me on Keppra immediately. But my husband and I did not feel confident about this diagnosis.

I became a self-advocate and saw two different neurologists. Neither came to the conclusion of epilepsy and both confirmed PNES associated with the above trauma and quickly discontinued Keppra.

 I saw a wonderful Psychiatrist immediately. His diagnosis was PTSD, Anxiety, Depression, PNES and agoraphobia. He also made an appointment for me to see this outstanding therapist. Her methodology has included and proved very, very helpful: Cognitive Behavioral Therapy, EMDR, (very helpful) and Dialectical Behavior Therapy. I continue to see both of them and no seizure like activity since then.

My personal recommendations:

1.) please don’t beat yourself up about this or feel there is a “Stigma” attached to this. Sincere Congratulations to All of you for ‘naming’ it, (that’s the first step!) 

2.) Secondly, I have found through therapy that I had some underlying issues that originated from childhood and the cork finally popped during being bullied and the important negative childhood issues were the ‘seed’. This is why EMDR was very valuable to me. (kind of like getting chicken pox as a child and all of the sudden breaking out into Shingles as an adult).

3.) Take NO BLAME – you’re not crazy or insane – Thank your brain for ‘accepting overload’ and protecting you. Please listen to your body carefully and lovingly – your body will give you signs of stress piling up  – recognize those signs, respect them and talk with your therapist about them.

I sincerely hope this has been helpful.