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Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
In January 2014, after a battery of tests, I was diagnosed with psychogenic non epileptic seizures (PNES.) Information was not as plentiful as the resources are now, yet what I did find offered no real hope of recovery. November 2017 I am 2 years seizure-free. I am hope to all who decide they ARE going to recover from PNES. I've made YouTube help guides for those searching (youtube.com/christinemauriello) I hope you find guidance you need, when you need it.
Please feel free to use this forum for anything related to PNES.
God bless
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Hi Everybody!
About 3 weeks ago, I experienced my first PNES episodes, giving me a much deeper understanding of the posts and experiences that have been shared here.
It all started with an aura followed by a strong complex seizure. So, I respected my body and rested for the rest of the day. To my surprise, several hours after my complex partial seizure, I began experiencing a few auras again, which continued and increased over the next day. My doctor then recommended I go to the hospital, where I was admitted to the EMU. After the EEG results were analyzed, I received the unexpected diagnosis of PNES alongside my existing epilepsy.
My doctor's analysis and diagnosis: Following my first status epilepticus experience last December, I developed an intense fear of it recurring. This fear became deeply embedded in my subconscious. The complex partial seizure I had earlier that day, after almost 8 months without any seizures, created significant anxiety and insecurity, which then triggered approximately 20 pseudo-seizures that felt exactly like my typical auras. My doctor explained that it's quite common for patients with epilepsy to also experience PNES events.
This all occurred during a period when I was reducing my CBD dosage while facing some stress. Both my doctor and I learned an important lesson – this wasn't the appropriate time for any medication adjustments, even minor ones like I was attempting. I've returned to my previous CBD dosage and slightly increased my Keppra dosage to provide additional protection during this vulnerable time, given my parents' current health situation.
I must acknowledge that while my doctor was aware of my parents' circumstances, I hadn't fully communicated how emotionally fragile this situation has left me. That was my oversight, and I realize now how important it is to be completely transparent about stress levels and emotional state with your doctor.
Since I've been back on my previous CBD dosage and increased Keppra dosage, I've had no more seizures and/or PNES events, thankfully. However, I feel that my memory is still a bit impaired, similar to what happened after my status epilepticus in December. Did any of you also experience decreased memory after PNES episodes?
Thank you all!
Chris
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3 Reactions@dannoyes
Hi Dan,
As I recently shared in this discussion, I've just experienced my first PNES episodes after having an epileptic seizure a few weeks ago, which reminded me of your situation.
In your post, you mentioned that your wife films your seizures and sends the videos to your doctor to help determine which episodes are epileptic seizures versus PNES events. Did your doctor share with you what specific differences he found between your seizures and PNES episodes?
I'm new to the AI area and would love to know more about how to get an AI assessment like the one you did. Would you mind sharing more details about the process? Out of curiosity, which AI tool do you use?
Thanks a lot!
Chris
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@santosha So my Mayo neurologist has me upload my seizures as a private YouTube upload and then I send him the video links in the portal. At one point he offered to walk through the videos with me to reveal specifically why they were FNDs versus epileptic, but I was very hesitant to know. Psychologically, seeing myself seize is so troubling for me. I hate even just catching a glimpse when I'm uploading the videos. He also said my seizures are very unusual, and he feels that after seeing me seize for over a year now, he can identify them immediately. Like you, I have both types of seizures, so distinguishing the seizure type is only important if they need to make medication changes. Fortunately, I'm on Vimpat and Gabapentin so the feeling is they are both relatively safe so since I primarily have FND seizures recently we're just going to assume the meds are keeping the epileptic seizures under control.
Send me a private message and I can share with you how I used Google's MedGemma to have it review the seizure video in consultation with my Mayo neurology team. I would never trust any other AI tool to provide trustworthy clinical insights at this time. There are obviously a ton of ways the other tools can help, but just not diagnostic perspectives.
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3 Reactions@nbean08
Hi Nancy!
First, welcome to our group at Connect.
I'm so sorry to hear you're going through this experience.
Unfortunately, many of us have already had the experience of feeling dismissed by doctors. Dan (@dannoyes) started a discussion about this that you might find useful:
Have you ever felt ghosted by your doctor?
https://connect.mayoclinic.org/discussion/have-you-ever-felt-ghosted-by-your-doctor/
As I have experienced myself recently and shared here in this discussion, one can have both epilepsy and PNES. There is an excellent and very informative webinar by the Epilepsy Foundation about PNES and epilepsy that I'd like to share with you:
An Overview of Psychogenic Non Epileptic Seizures (PNES) - Epilepsy Foundation
Have you had a Video EEG (EMU monitoring) yet? This is the gold standard for distinguishing between epileptic seizures and PNES.
I'm tagging @dannoyes, who also has both epilepsy and PNES and has been treated at Mayo Clinic.
You deserve proper evaluation and treatment. Please don't give up advocating for yourself.
Chris
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2 Reactions@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.
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7 ReactionsThank 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.
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3 Reactions@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
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2 ReactionsPNES may be going on for my adult son --in addition to his 'regular' epilepsy.... the neurologist wanders about this too. It's being explored
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3 ReactionsPS: 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.
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5 Reactions@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
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