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Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?

Posted by DrivenByME @drivenbyme, Nov 9, 2017

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

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Dan Noyes
Dan Noyes | @dannoyes | Sep 2 9:05am
In reply to @santosha "@nbean08 Hi Nancy! First, welcome to our group at Connect. I'm so sorry to hear you're..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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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@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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nancycollett50@gmail.com | @nbean08 | Sep 2 11:51am
In reply to @santosha "@nbean08 Hi Nancy! First, welcome to our group at Connect. I'm so sorry to hear you're..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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

Jump to this post

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.

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Mentor
Chris Gautier, Volunteer Mentor | @santosha | Sep 3 7:06am
In reply to @dannoyes "@santosha So my Mayo neurologist has me upload my seizures as a private YouTube upload and..." + (show)
Profile picture for Dan Noyes @dannoyes

@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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@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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