Have nonepileptic seizures/psychogenic nonepileptic 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...

Does anyone have psychogenic seizures I get therapy have a psychiatrist have a neurologist I'm wondering is there surgery that can stop them or does anyone know any medicine that will stop them I take valium three times a day and I get therapy for the trauma and the stressors in my life is there anything else I can do I hate seizures they make me very tired anymore if I would have a psychogenic seizure spell that lasts for three four five hours I was told to go to the ER I'm not experts who know about psychogenic seizures say the ER and the neurologist at the hospital don't understand psychogenic seizures nor treat the person right who's having them and that's been my experience in the past when I went to the ER for them and then the neurologist says it's my fault because I can't handle the stressors in my life and the hospital doctor and the nurses in the brain unit where I was at says it's not my fault and experts say they can be deadly under the right circumstances and they can make you temporarily not be able to walk and more stuff they can do to you the seizures that I can't talk about cuz I'm too scared of it I wish I can talk to expert about this therapy is working me and my therapist and doctor hoping they will go away in time we are working on it the seizures are going away almost there thank God James T

@jamestmckay
I've had Epilepsy for nearly 60 years but never had a psychogenic seizure, at least not that I am aware. Since these episodes are psychologically induced perhaps Cognitive Behavioral Therapy would be beneficial and worth discussing with your physician. It has been quite helpful for many people. I believe it's essential to come to terms with whatever trauma(?) is triggering these episodes.
How often do they occur and how long do they last?
Best of luck,
Jake

@jamestmckay
I am sorry for the experiences you have been having.
I also did not have the experience of psychogenic seizures.
You said you are in therapy right now. Is your psychologist a neuropsychologist? This has made a huge difference to me and my treatment. My neuropsychologist, who did my Neuropsychological Assessment and with whom I have weekly sessions for some years already, has been of great help in overcoming my fear of seizures and many other things related to my epilepsy. Psychiatrists as far as I know treat mostly through medication, differently from psychiatrists or neuropsychologists. A psychiatrist does not substitute a psychologist or neuropsychologist!
Best of luck!
Chris (@santosha)

To my knowledge, Psychogenic Seizures will not kill you as long as they occur in circumstances that don’t present additional risks such as driving a car, etc. . They are very embarrassing, worrisome, and inconvenient. I believe the medical field has a long way to go to adequately understand the condition. I believe we have only touched the surface of the cause and physiology of the seizures. One thing that can help is to learn to pace yourself through each day, without rushing, and limit how much you put on your plate at any given time. Take on only what you can handle at the moment and focus only on it. Avoid spreading yourself too thin and take each day at a steady and doable pace. The rest will have to be balanced as best as possible. I hope this helps.

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?