Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?

@nbean08 I have one very important thing for you to consider. PNES or FND seizures is not a psychological problem. My local neurologist said I needed to see a psychologist to deal with my FND seizures. It turns out that this psychologist wrote a book on the subject, which I quickly read. She covered the importance of practicing CBT principles in daily living, addressing any emotional trauma, and practicing stress management strategies like exercise, mindfulness, deep breathing, etc. I was confused because I had already been doing all that. So I called the psychologist and she said I was doing everything right and there was nothing more she could do to help me.

FND or PNES can make you feel less validated and almost ashamed (just being honest). My local neurologist told me he couldn't help me because my seizures were both FND and epileptic seizures. This just left me feeling like an oddball once again.

When I went to the Mayo Clinic EMU I was made to feel human and validated. My FND seizures were not in my head. My brain had been rewired, and therefore, my FND seizures were simply a result of this rewiring. They told me about CSS and how they have a program to help us live with FND seizures (it's called the PRC program).

To give you some perspective, I am a year into my Mayo treatment plan. They validated my epileptic and FND seizures. They made me feel whole and not just another oddity like I was made to feel locally. I just had a call with my Mayo neurologist on Friday and he told me FND seizures are very hard to understand and there is uncertainty amongst the best neurologists in the world. For example, the UK validates FND more clinically and with research than in the US. My Mayo neurologist also told me that FND seizures are incredibly common, so just know you are not alone.

Thank you. I have had a video EEG but that was years ago. At least 5 years ago. These seizures are very different. I’m going straight to my PCP right now and together we are trying to find the right neurologist for me.

@dannoyes
Good Morning Dan!
Thank you so much for sharing all of that with me 🙏!
I will ask my husband to record every seizure I have from now on. Thank you for this valuable suggestion.
Chris

PNES may be going on for my adult son --in addition to his 'regular' epilepsy.... the neurologist wanders about this too. It's being explored

PS: About 6 years ago in Oregon son's partial/focal seizures began. Unbeknownst to us, the OR. neurologist he'd been seeing for 3 years, was all about classical seizures-- Grand Mal aka 'tonic clonic' ----yes partial/focal ones happened, he allowed, but never addressed them. ------------------ Anyway, --I knew nothing about PNES--but in what became our LAST appt with the Oregon neurologist, he decided that PNES was also my son's "problem" --and then with a wave of his hand, (like shooing away flies) he said: " get a therapist". We never went back. -The next month, at my urging, son moved to Calif.-- Here we have a highly trained neurologist, who gives focal/partial seizures respect. ----AND, now it seems that PNES is popping up too ...
While CA neurologist isn't certain son is also having PNES episodes (apart from tonic-clonic & partial seizures) in a few weeks he'll be outfitted with at-home 24 hr EEG mobile test (wires all over his head) This "may" help neurologist/us to understand what's happening ---- PNES doesn't always show up on EEG/ and that's ok. Main thing: son's CA doctor isn't going to shoo us away.

@bearbayou
I had a similar experience with a neurologist
I took my ?
( now ex husband) with me to give the neurologist a picture of what happened hopefully.
As soon as we sat down my ex suggested my seizure was due to alcohol and the neurologist immediately agreed!!
Not a question for me at all just the wrong information

@bearbayou
Non epileptic episodes don't show on electroencephalogram.
Just because the EEG has no irregular electrical activity doesn't mean it's PNES or you don't have epilepsy.
Are you taking any seizure medications?
Jake

@wendy2132 --- I'm thankful the neurologist and your husband are both
exes.
Please take care.

@jakedduck1 ---- hello Jake, thanks for your interest. It will be a video EEG..which, reportedly, is a way to diagnose PNES. --The last PNES son had--was very long & powerful. There were 2 witnesses to what happened.. a potential new apt. manager for where he wants to live---walking distance from us--- and me. ----.
Yes, he takes 2 medications-- one for his tonic-clonic seizures and another tablet for his partial/focal seizures.

For 3+ years, I have been dealing with the following daily, numerous debilitating symptoms, which were then diagnosed in 2/2025 (via an EMU) as Non-Epileptic Spells (NES) - Functional Neurological Disorder (FND):
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
6. Headaches
My spells occur out of nowhere all day and evening long, even during sleeping hours.
Does anyone know of a treatment program for NES?
Or has anyone had these symptoms and it was diagnosed as something else?
I also have Parkinson's.
I would greatly appreciate any help, information, guidance, etc.