Non-Epileptic Seizures or psychogenic non epileptic seizures (PNES)

I have these episodes, usually happens in the evening and I call them " Possession like" cause I can't talk due to tongue, stop breathing, and my arms and legs each do something different .. I convulse sometimes, fully aware and I also lose my bladder when I stop breathing.. I have a neurologist appointment this month and hopefully get some answers. But an ER doctor treated me like a junkie and I never asked for anything but to please make it stop. My Gabapentin prescription got suspended and I don't know why. ER staff put me in a dark room and shut the door. I was screaming for help cause I had stopped breathing more than a few times.
I almost lost my cool. I didn't know if this Neuro Dr would be same as ER doctor..
I didn't know if people can have episodes like seizure..
Sorry I'm rambling but I would appreciate any information about PNES. Is it possible that I am having a severe, severe form of anxiety?

Hello kirchoff79,

PNES is a condition in which there are many more questions than answers, and just about all doctors and therapists have very little correct understanding of it. Much more (nonbiased) research needs to be conducted. The lack of knowledge and professional training is most unfortunate for those who suffer from this condition. Do not ever allow someone to place you in a situation (such as you described) that left you feeling neglected and unsafe. This will worsen the symptoms.

The research claims that PNES is a result of prior abuse/trauma (typically resulting in suppressed emotions), but that is not always true. There are people diagnosed with PNES who do not have a history of such. I believe PNES can also occur from other causes such as chronic, intense daily stress; side effects of medications; a damaged nervous system, etc. The random flailing and jerking of body limbs, inability to speak or communicate, prolonged blank stares without blinking, loss of mobility, interrupted breathing, intense and severe brain fog, and appearing temporarily "frozen/paralyzed" are possible symptoms. Some people even convulse/seize. One can have a distinct overwhelming and intense sense that one is about to completely collapse! This feeling is very uncomfortable and can "lead" to anxiety. These symptoms are very concerning, especially when very limited knowledge exists in order to understand this condition, coupled with the inability to prevent or control the symptoms. One does "not" choose to have these symptoms, nor is one able to stop the symptoms. The symptoms seem to occur more so when one is in a stressful situation, or having to quickly rush/hurry (also stressful), or is suddenly startled, and/or tired (such as you mentioned when you wrote "in the evening"). If you find any one who is helpful, please share with those who have not yet found anyone who could help. The daily struggles with this condition are very difficult and exhausting.

Hello Tonyde,
I found the comment about your blood pressure doubling to be interesting. For many years, I have majorly struggled with very volatile blood pressure that would commonly soar in "seconds" to well over 240/160. It went over 300 a couple of times, in which, the first time this happened, it caused me to have a grand mal seizure. Fortunately, this occurred while I was already in the ER. The seizure stopped after I turned very blue and lost consciousness due to brain swelling. I woke up after the 3rd day. (This all began in my late 40's, always of average weight, never once a smoker/drug user, very clean and conservative life, well-educated.) Almost 20 years later, I still struggle with very volatile, extreme blood pressure.... no answers. I agree with you, that there is NO way this is psychogenic! It has been a very hard road...

To DrivenByMe, I can’t thank you enough for your information !! I’ll share this info with my son.
Grateful 💕

@kirchoff79
I’m afraid I don’t have any info re your symptoms though my son’s PNES symptoms don’t resemble any of the short videos I’ve seen on YouTube on PNES. I’m indicating that there’s a wide range of symptoms attributed to PNES. AMy son was diagnosed by Stanford 2 years ago.
I do want to emphasize with your horrendous experience at the ER. How inhumane that they treated you like this. I hope that you complain about how you were treated so as to prevent this from happening to others. I do hope that you got some help from your neurologist 💕 I myself have a diagnosis of Fibromyalgia, an autoimmune disorder that typically has no visible symptoms in the early stages. The mistreatment that I have struggled with for years was so disheartening and kept me struggling not to feel crazy. These struggles left me with no self-confidencewith which to complain about my treatment. I was variously labeled as a drug-seeker and/or drug addict when all I wanted was relief FPM the then undiagnosed migraines and a treatment plan!
I wish you success in your search for a diagnosis and treatment 💕

I had a stroke, a bleeder, and less than a month later developed a severe UTI and into that started having seizures. They got it under control with kepra and vimpat. now no diagnosed seizures, my "episodes " were diagnosed as anxiety and depression. Im trying to go off the kepra. dropping the dosage and find that as I do Im having withdrawl symptoms. Any one have issues like this?

Hi @thelmathomas76
I have reduced the dosage of some epilepsy medication, but always with my doctor's orientation and supervision. Do not do it by yourself!
Chris (@santosha)

@thelmathomas76
Seizures are more common after hemorrhagic strokes, compared to ischemic strokes. Why do you believe they are psychogenic verses abnormal electrical induced seizures (epilepsy?)
Do you know what is causing them?
If you're going to discontinue any seizure medication, discontinue it slowly just in case it is epilepsy. If you do have epilepsy, discontinuing seizure, medication's too quickly can cause a very dangerous seizure activity known as status epilepticus, which requires immediate medical intervention. Always better to air on the side of caution.
Best wishes to you.
Take care,
Jake

My neurological "team" have deemed my "episodes" as "anxiety and depression based" so I dont think from that diagnosis that I have epilelipsy But Im very confuses since I have had different doctors say different things. I feel like a guinea pig with me changing dosages

I have a Dr on board, he knows how Im supposed to do it gradually . I just wanted to know if others were doing it the same way with the same drug and having some similar symptoms. All my Dr said was " everyone is different"