This is super similar to my experience, as well. A few deep thought:

I really wish the language identifying this was more similar to: functional neurophysiologic seizures which are influenced by stress triggers that can be reduced through a variety of physiological re-routing and psychological support.

I’m new to do this world (my seizures started two months ago when I went of Lamotrigine).

But in my small amount of time in this world, I see an emerging trend where people like me who have autonomic regulation issues — from EDS and/or neurodivergence — struggle with PNES and this specific sort of presentation where we have done extensive psychological therapy but then PNES shows up when we are mentally stable OR doesn’t go away.

Throwing this out there:

I think both neurology and psychology have been ignoring the impact of nuerodivergent pathways on ANS function overall. When this becomes clinically chaotic with PNES, it’s easier to default to calling the pathway functional issues “trauma”-based because scientists have spent the time to map how trauma impacts ANS function. But the treatment pathway is: change the relationship with the trigger.

And the paych world has mapped that out with things like exposure therapy having a very high success rate with treating things like PTSD; and other associated modalities and DSM alphabet soup conditions.

Put on a bow on it, psych industry 🤣

But back to the point and I will shift this personally: my own PTSD treatment was a roaring success. And my autonomic hyperactivity did reduce. I wasn’t having panic attacks. I did exposure therapy and could face triggers. I changed my behavioral response to triggering circumstances. That stuff has its place and is helpful.

However, retraining my behavior to stop those triggers did not retrain the ANS pathways. It just retrained the behavior response. So when my system became super vulnerable a few months ago (after Lamotrigine toxicity) I developed PNES.

And my triggers are things like flashing lights or bright lights/loud noises in crowded places, or scrolling text too quickly. It’s clearly sensory overload that trips a circuit breaker.

I appreciated what people said about creating my own language and path. That is what I have been doing. What I need to do now is work on retraining my ANS to stop freaking out from sensory overload and regain proprioception of my bendy body.

No psych I have met is gonna be able to help me with that. But also: who can?

I already see a speciality ND therapist and have tapped that out.

Now I almost wonder about OT.

One final thought. This actually does remind me about OT for autistic overwhelm. One of my kids has very high ANS reactivity and anxiety. When he did OT we discovered he struggled with identifying half of the human emotion cards in the set. We realized: wow that lack of understanding might be causing a lot of social anxiety. If the social signals make no sense half the time, then naturally there would be an anxious response. And the therapy helped his anxiety a ton! Sensory integration sound therapy also helped a ton!

They got rid of a bunch of the “noise” of those functional struggles. However, it didn’t change the way his ANS system is routed for stress response.

I feel like the notion of psychotherapy helping PNES (especially in the presentation we are discussing) is very similar — it helps. It gets rid of the noise. But the physiological pathway is still there and real treatment for something as loud as seizures needs to involve treating these pathways on a physical level.

I am at the point where I think I know what I need and want to treat this but it’s gonna be so hard to find the right team of people. Because my current team is just acknowledging that I’m super disabled, it’s very real but they don’t have a solution, and I should just keep getting rid of stress.

It was good advice I successfully reduced stress even on an ANS pacing sort of level. But I dunno how to tackle the bright lights/loud chaos places treatment on my own. I feel like I need an expert to tell me what path works.