NEPD Non Epileptic Psychogenic Seizures

@donnahanford933
I've had generalized seizures for many years but have never had psychogenic seizures.
Is the cause or trigger of his seizures known?
Does your son go to a therapist?
Take care,
Jake

Hi Jake, there is no known cause or triggers for my son’s for PNES (this how Stanford physicians termed them) other then that they have a neurological source. He doesn’t close his eyes nor do his movements look anything like a seizure.
His movements are mostly in his right hand with which he has a continual inner dialogue. It prevents him from doing many activities, showing displeasure by jerking him by the neck, strangling him to the point of almost passing out at times, preventing him from getting up to use the bathroom etc. This last one looks as if someone is physically shoving him back into a chair or his bed.
My son also is diagnosed with Schizoaffective Disorder with Bipolar Disorder, Major Depression, General Anxiety, OCD and Chronic Fatigue. The internal dialogue frequently consists of his Hand verbally abusing him, telling him that he is lazy, unworthy, useless or morally inadequate etc.
He used to hold down 2 part-time jobs but as the PNES gets worse, he’s had to stop work. The Hand has even jerked the wheel of his car while driving! I can not find any clinical trials for which he qualifies. There is no known medication for it.
Thank you for your interest and. If you have any familiarity with this Disorder, I’d be most interested in hearing about it.

I was attending a long Covid clinic for a variety of odd symptoms when I had a tonic-clonic seizure. The ER doctor diagnosed me with Epilepsy. The long Covid clinic doctor suggested it was PNES, and that I was a hypochondriac seeking attention. Then I had a sleep seizure, which rules out PNES. The point I’m trying to make is it can be hard to correctly diagnose some of these things, and we may have to continue seeking help if the diagnosis and remedies are not working. I’m not an expert, but the Hand having a mind of its own, and the hand’s inner dialog do not sound like PNES. From my limited understanding of PNES, it can look like an Epileptic seizure, but has a psychological / emotional cause rather than a structural issue in the brain. The Hand phenomenon you describe is likely something other than PNES. If the hand is taking over while driving, that is a major cause for concern. Hopefully the right diagnosis and medication will resolve everything.

Hi @donnahanford933
I can not contribute much. Just wanted to say not to give up and continue seeking for a correct diagnosis as @earlylonghauler has well mentioned.
It demanded me much persistant and different medical appointments and opinions to get my right diagnosis of temporal lobe epilepsy.
Perhaps the Epilepsy Foundation can be of some help?. They have a 24/7 helpline. Here is the link: https://www.epilepsy.com/247-helpline.
Wishing you and your son all the best!
Chris (@santosha)