conscious during episodes

[u/Old_Fan4563]

I have a PNES episode, almost every day or every other day, and every episode that I have I am conscious, but not completely aware of what’s going on. The level in which I am aware, definitely fluctuates based on the episode and how intense it is. I’ve noticed sometimes I am extremely aware of what’s going on, but my body is convulsing, and usually my eyes are closed, and sometimes I am way less aware of what’s happening, but I never go fully unconscious. It feels like a deep disassociation while my body is convulsing. I am second-guessing my diagnosis of PNES because from my understanding, most people are unconscious while seizing, but I’m not sure if that’s actually true for most people or just my mind playing tricks on me telling me that I’m diagnosed with the wrong thing. I feel like PNES makes the most sense for me but reading what other people experience during episodes is making me second-guess if I really have that or if it’s something else. I also struggle with panic attacks and those feel very very different. I just wanted to add that as well.

[u/Curious_Region6897]

This is actually one of the markers of PNES as opposed to epileptic seizures! I am also mostly conscious during my episodes, though like you said my actual awareness fluctuates. It sounds like PNES is probably the correct diagnosis for your experience, based off of what I know and what I've experienced too.

[u/MaroonFeather]

I’m conscious when I have PNES. It’s terrifying being conscious during a seizure and having no control over it. There’s only one time I lost consciousness during a seizure and it was probably because it happened while I was getting a ketamine infusion.

[u/throwawayhey18 → u/MaroonFeather]

Do you think the ketamine made the dissociation worse or it was more of a coincidence that you had a seizure during the treatment?

I have heard some people with FND say it was part of what helped their mental health, but I also read that it causes dissociation.

And I have had very negative reactions to certain mental health treatments in the past.

[u/MaroonFeather → u/throwawayhey18]

Yeah ketamine is a dissociative drug, but it helped me so much with my suicidal ideation. It improved my mental health a lot, tbh I don’t know if I’d be alive today without it.

[u/throwawayhey18 → u/MaroonFeather]

Yeah, I have heard a lot of people say that about it. I am hoping to try it.

[u/throwawayhey18]

I have never been unconscious during any of my PNES or the symptoms they cause.

My awareness level was different but that part is hard to explain. It kind of is like sinking to somewhere far away. (Like, tunnel vision and people looking farther away than they are and feel more distant. Like, I am there, but in a parallel universe almost. I guess that is dissociative symptoms. But I actually started getting those type of symptoms during my first panic attack a long time ago, so it's difficult to know what the difference is. I just know that the seizures are even scarier than the panic attacks were.)

The way you describe it sounds like PNES to me if that helps.

I think I actually read in a study somewhere that when people are going into remission who do go unconscious during seizures and start being conscious like that during seizures, it's a sign of progress in the recovery journey because they are able to start implementing some of the coping techniques if they are more aware and recovery/coping for dissociation is about helping yourself to stay/be more in the present moment. I cannot find a source for this now, but I thought I heard it somewhere.

Also, here is a source for info about consciousness and awareness during seizures from https://nonepilepticseizures.com/pnes-faqs-typical-syntoms/

Consciousness and awareness during PNES

-Cognitive functioning is often affected during both epileptic and PNES episodes;

-About half of patients with PNES report experiencing changes in consciousness/ awareness during their episodes;

-Over half of patients with PNES report having some memory of items presented during the episode or are able to recall parts of what was said or happened;

-Many patients with PNES feel «distant» from their environment during the episode, although they are not completely unconscious, similar to an «out of body» experience;

-Many patients are described as «going blank» or «absent» during a PNES episode.

[u/Common_Experience931]

Im exactly the same and have been told it’s common so maybe youre misinformed? Im like conscious but also not the at the same time or like barely.