[catztac]

AKA psychogenic non-epileptic seizures.

I had my first seizure at work in October 2016. I woke up to paramedics around me and nervous coworkers. I spent a couple days in the hospital and had a battery of tests that showed nothing. Well, nothing to indicate seizures, I do have a spot of atrophy or damaged brain or something from long ago and far away events which is interesting.

These seizures kept happening maybe once a month, then once every few weeks, then by June/July one at least every week. I banged my head during at least half of them, needed sutures in my forehead once.

In August I was admitted to the seizure observation unit. They hooked up 27 electrodes to my head and pointed a video camera at me in my room. It took a few days for me to have a seizure for them, but finally I did.

The EEG showed no abnormal activity whatsoever. So the diagnosis; psychogenic non-epileptic seizures. They explained that people who experience these often have a history of trauma (me!!)

I wish it was true epilepsy, that can be treated and life goes on. This though? They can't even say exactly it is that I need to change about my behavior or coping strategies or anything to make them stop. It's so vague.

I feel like this is yet another way that my brain is working to sabotage me. My manipulative, atypical brain.

I feel like I might never be able to do so many things if I can't get this under control. Travel Europe, have/raise kids, have different careers.

I dunno.

I thought I knew what my different mental illnesses meant for my life, but now new stuff. What more will I loose??

I guess I'm really into a self pity spiral right now, but seriously, why me??

Why always me??

What the hell?

[Yzen]

I'm sorry that you have to deal with seizures. Have you been on this site: Psychological Non Epileptic Seizures ? There might be some treatment ideas on there.

I hope they get less frequent and go away altogether.

[reb569]

Originally Posted by catztac

AKA psychogenic non-epileptic seizures.

I had my first seizure at work in October 2016. I woke up to paramedics around me and nervous coworkers. I spent a couple days in the hospital and had a battery of tests that showed nothing. Well, nothing to indicate seizures, I do have a spot of atrophy or damaged brain or something from long ago and far away events which is interesting.

These seizures kept happening maybe once a month, then once every few weeks, then by June/July one at least every week. I banged my head during at least half of them, needed sutures in my forehead once.

In August I was admitted to the seizure observation unit. They hooked up 27 electrodes to my head and pointed a video camera at me in my room. It took a few days for me to have a seizure for them, but finally I did.

The EEG showed no abnormal activity whatsoever. So the diagnosis; psychogenic non-epileptic seizures. They explained that people who experience these often have a history of trauma (me!!)

I wish it was true epilepsy, that can be treated and life goes on. This though? They can't even say exactly it is that I need to change about my behavior or coping strategies or anything to make them stop. It's so vague.

I feel like this is yet another way that my brain is working to sabotage me. My manipulative, atypical brain.

I feel like I might never be able to do so many things if I can't get this under control. Travel Europe, have/raise kids, have different careers.

I dunno.

I thought I knew what my different mental illnesses meant for my life, but now new stuff. What more will I loose??

I guess I'm really into a self pity spiral right now, but seriously, why me??

Why always me??

What the hell?

Have you been able to determine any kind of triggers for these episodes? Do they always happen a work? Or a wide variety of places?

[catztac]

Originally Posted by reb569

Have you been able to determine any kind of triggers for these episodes? Do they always happen a work? Or a wide variety of places?

No, no triggers that I can see and I've wracked my brain trying. They've happened at home, work, walking on the street, once in a DBT group meeting. Just anywhere. Any time.

[reb569]

That has to be frightening, not knowing when they are going to happen. I briefly looked at that site that Yzen posted a link to the other morning. It looks like it has some really good information.

This really raised my interest because my daughter had an episode a few months ago that could have been something like this. We don't know for sure. The ER called it a panic attack, but said it was probably related to her meds, but that was also ruled out after the fact. It hasn't happened again so far.

I hope you find some answers and more importantly, some relief.

[East17]

Originally Posted by Yzen

I'm sorry that you have to deal with seizures. Have you been on this site: Psychological Non Epileptic Seizures ? There might be some treatment ideas on there.

I hope they get less frequent and go away altogether.

Thank you for posting the link to this site. It was definitely a light bulb moment for me.
I experienced non-epileptic seizures when I was a teenager and because Epilepsy wasn't diagnosed, it was treated as 'hysterical'; instead of receiving help for this problem, I was made to feel as though it was something I could control or stop happening at will. Not understanding what was happening or why and being blamed for it was traumatising in itself.
Thankfully I no longer have them, but the effects of how I was treated are still with me to this day.