What Are Psychogenic Non-Epileptic Seizures (PNES)?

I am so grateful that my guardian angel was there to advocate for me, she so lovingly told the doctor that she has seen me act and i am definitely not that good... lol. No, not with any humor at all she did tell him that there is no way I could fake what was happening.

I am the medical advocate for my family so this was just crazy for me - I couldn't ask questions, answer questions - nothing. I was trapped inside. I am so blessed to have had my 2 guardian angels with me for those next few months - I will never forget the selflessness of their care. I want to share my story so that I can help bring more awareness and so that a warrior of PNES (because that's what we are) do have to go through the pain of both PNES AND the pain of being called a faker.

"PNES are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency."

[ChristineMauriello]

I have updated my definition (as I shared on a more recent video). PNES is a red-flag disorder. Our brain is throwing up this HUGE red-flag, pleading for us to pause, watch what is happening, notice that things just aren't right in our life and pleading with us, using these "seizure-like" events to get our attention.

[kalliopisk_]

You open windows in LIFE Christine.And LIFE is precious. Thanks for the light.. Finally when we are ready the knowledge comes.

[kimaegaii]

For 2 years I've seen countless doctors/tests. Everything from your videos hits home. Something that I don't see often from people's tutorials are some of my symptoms. I have a constant unrelenting off-balance/dizziness, right side weakness, and pain/discomfort my tendons/nerves/joints mostly on right side. Have you come across many people with dizziness, etc?
Your comment about this disease being a huge red-flag pleading for us to stop resonates so much. Thanks for these videos.

[shiminess]

Thank you for this video. I was recently given this diagnosis after two years of bouncing between doctors and losing two jobs. It's been hard and though my family is very supportive I still feel completely lost about it all. What day did I miss that Handling Life and Stress was taught? Because I seemed to have slept through it! 

I've been told I'm faking it by doctors, dismissed with the wave of a hand. One doctor said, "Well, what do you think you have?" I don't know, I'm not a doctor that's why I'm here! Then I'm told to relax and stay away from stress. Well, it seems like all of life is my trigger because I can be sitting down and reading a book and I'll have an episode or eating dinner with family or just trying to clean my apartment. I was finally referred to a brand new program at Emory that is treating (maybe studying also? not sure) this and hopefully I, and everyone else in the program, can get our lives back. 

Also, I'm very glad I'm not the only one who jokes about PNES. ;P

[jasminegulliford]

im so glad you have made this video! ive been diagnosed this now! but the loud noises are a trigger! and my body tenses and i what going on around me but its something i cant control!

[margaretcharpentier]

My daughter was recently diagnosed with PNES.  She is an RN, a mother and wife.  She was told that her drivers license will be revoked.  Now THAT is a stressor.  She lives in the rural high desert in California and walking isn't an option.   She was also told that she can return to work in one week.  She has never had any seizures in her life.

[BR-dcjn]

Thank you for this video. I was formally diagnosed a few months ago. I thought Asperger’s had an embarrassing name, but PNES takes the cake. I’d like to know how you are currently doing. I wish you and your family the best

[jasonchagaris]

my sister just got diagnosed with this. much respect to you and thank you for your videos

[henrydanc]

I just lost my career to PNES. Caught on camera going down on the job. Future episodes interfered with my ability to perform. Ironically the stress from trying to get help now that life has taken a turn is turning this into the norm rather than exception. Finding a stress free environment? Good thing I fly fish I play music already.
My tongue is scarred and bitten. I’m afraid of the bathroom and sleep with a mouthpiece. Out of four doctors one has seen a patient diagnosed with PNES.
After over a year of testing my neurologist snapped his fingers when I mentioned that a councilor had suggested I research PNES. She has noticed my seizure activity was triggered by certain events. My neurologist determined he could do no more to help and the referrals began.
I can’t get a doctor to clear me to work and drive, nor sign papers for disability. I can’t work or can I get help. Fun with anxiety right? Like yourself I am jovial. Roll with the punches.
Like everyone else here I am grateful you are sharing. Information and support is difficult to come by. I am starting a research paper today simply to educate myself, and unfortunately, my doctors.

[missdbanks]

My doctors diagnosed me with non epileptic seizures and told me the same thing in 2020. Now, my 7 year old son has epilepsy with non epileptic events. Doctors and I don’t know what triggers it. But I think pain and light triggers his seizures. Even though I still struggle with my health, I am determined to help my son. I think that’s why God is putting me through my journey to help my son with his.

[ChristineMauriello]

I have recovered... 2 1/2 years without a seizure, and more importantly, I not longer hide from my feelings, thoughts, or differing opinions. I am seizure-free and I'm evidence/proof that all you need is the right tools, motivation, and support. :-) Take heart. Your recovery could be on it's way IF you move in the right direction toward health, healing and support. Ask me how!

[maggiesimmons]

I am 17, and last year I was diagnosed with (PNES) I never understood why. Thank you for making this video. ❤️

[bruceh]

Thanks for sharing. I had a brain tumor at the age of 10 and 13 surgeries later it was resolved but I also have pnes and my doctors said for years I was faking to get attention. I'm now 35 and now just getting helped.

[anellhernandez]

Hello My name is Anell Hernandez, i watched your video and it so happened that my little sister is going through this same exact thing you are 😒 i am a med student who is on the hunt for answers as well for her, i am typically supposed to be going to study under western medicin ...although i am finding out that all the doctors that she has are telling us that shes pretty much normal and nothing wrong ith her...but i know there is something The re search i have done is still coming as i look, but i did want to tell you that i have found a mix of oils blended together of course called valor helped my sister to come back from them a tad bit faster or stops them in thier tracks . Now that we have the smaller siezures under control i and my family are trying to look for a cure...if there is a will there is a way . I would appreciate any knowledge that you know of to be passed down so i can further my lead ..thank you

[godell]

I have them it like being Struck by lightning usually have five day stop taking the medication that my doctor prescribed me now I only have some doctors like they just give you medication that doesn’t work

[bruceh]

Hi Christine. no I've never heard of him but I'll look that up. thank you

[elizabethburgess]

I can relate to that a big trigger for me now is strobe lights and loud noises there isn't such thing as a stress free environment I managed my stress by doing zumba and swimming and coloring mandalas like I talked about on Facebook how are you doing are you having less seizures now or about the same? I haven't had a seizure in almost 4 months now wow its been a journey for me I went from have 7 to 8 seizures a day to non

[lukasjacob]

5:03 i laughed at that! Nice! I hope you are doing great now!

[walkinginlightwithmelrufar]

I totally understand is what l'm facing

[romanempressolivia]

Hi, what have you done to treat these? I have been diagnosed with the same thing. It causes extreme fatigue and concentration problems and confusion. I hope you're doing better