PNES can be confusing, overwhelming, and scary, especially when you're experiencing symptoms for the first time.
In this episode of The Chronic Fighter, I'm sharing my personal experience with psychogenic non-epileptic seizures (PNES), from experiencing three or more seizures a day to rarely experiencing episodes today.
I'll break down what PNES is, how it differs from epilepsy, what was happening in my body during episodes, and the tools and support that played a major role in both my short and long-term recovery. I'll also share what I've learned about navigating unpredictable symptoms without letting them take over my life.
While this episode focuses on my experience with PNES, you don't have to have PNES to take something away from this conversation. Many of the concepts I share around nervous system regulation can apply beyond PNES to experiences like dysautonomia (POTS), anxiety, panic attacks, chronic stress, overstimulation, or feeling constantly on edge.
This episode is everything I wish I had known when I first developed PNES. I hope it helps you better understand what's happening in your body, gives you practical tools to move forward, and reminds you that you are not alone in this.
PNES is real, your symptoms are valid, and there is hope for moving forward.
What You'll Hear in This Episode
01:26 – What PNES is, the different terms used to describe it, and how it relates to FND
03:41 – My first PNES episode and what it was like experiencing multiple long-lasting seizures
05:53 – Getting evaluated, EEG testing, and understanding the difference between PNES and epilepsy
07:00 – Why PNES is real, valid, and not simply "all in your head"
07:44 – Recognizing my symptoms, auras, and early warning signs
08:45 – Understanding how both physical and mental stressors can trigger PNES
09:37 – Why excitement and positive changes can also overwhelm the nervous system
10:40 – What happens in the body during a PNES episode and the role of survival mode
11:53 – Why physical regulation can be more helpful than simply trying to "think positive"
12:37 – Cold exposure, vagus nerve stimulation, distraction, and other tools I use
15:55 – Breathing exercises, staying calm, and changing how we respond to episodes
17:05 – Long-term recovery and finding a provider who understands PNES
18:52 – Resources for finding PNES specialists
19:21 – Addressing underlying health issues, lifestyle habits, and overall stress
21:36 – The "stress bucket" analogy and why symptoms aren't always caused by one trigger
22:28 – Learning to live my life without letting PNES dictate what I can do
24:09 – My experience having PNES in public, while traveling, and at the airport
25:31 – Practical safety tips and creating a behavioral response plan
26:22 – Final thoughts and encouragement
Biggest Takeaways
✔ Your symptoms are real. PNES is a Functional Neurological Disorder. Unlike epilepsy, it isn't caused by abnormal electrical activity in the brain, but there is a problem with how the brain and nervous system are functioning.
✔ Think of your nervous system like a "stress bucket." Physical and/or emotional stressors can build up over time, and often it’s multiple things adding up until your nervous system reaches its limit and an episode occurs.
✔ How you respond to symptoms matters. Staying as calm as possible and having people around you do the same can help avoid adding more stress to an already overwhelmed nervous system.
✔ Regulation tools can help both in the moment and over time. Tools like cold exposure, breathing, and vagus nerve stimulation can help when symptoms arise and support regulation between episodes.
✔ Find the right support. A provider who understands PNES can help you make sense of your symptoms and create an individualized plan for recovery.
✔ PNES doesn't have to dictate your life. Learning how to safely navigate symptoms while continuing to get out of the house and do the things you love can be a huge part of taking back control.
Resources Mentioned
The Chronic Fighter - Health coaching, membership, and additional resources: https://thechronicfighter.com
Non-Epileptic Seizures - Find PNES providers by state: https://nonepilepticseizures.com
FND Hope - Support and resources for Functional Neurological Disorder (FND): https://fndhope.org
National Association of Epilepsy Centers (NAEC) – Find specialized epilepsy centers for further evaluation and care: https://naec-epilepsy.org
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If You Enjoyed This Episode
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Whether you're living with chronic illness yourself or walking alongside someone who is, I hope this episode reminds you that you don't have to navigate this journey alone.
Thank you for listening, and I'll see you in the next episode.
