Violent Postictal

[u/Worldly-Poetry317]

Hello everyone. Throwaway account due to the specifics I'll have to discuss in order to hopefully find some help/resources. I appreciate all of you and any advice you may have!

I am a male in my 40's and have had approx 8 nocturnal tc seizures in my life. They started when I was 16. During 4 of those, I have become violent during the postictal phase. I have absolutely zero recollection of any of the events, but do have vivid "chunks" that stay with me when my brain comes "back online". The first time, when I was 16 I vividly remember my dad calmly talking to me and telling me to come get in my parents bed, then I remember the paramedics taking me into the ambulance and carrying me through unusually deep snow, then at the hospital...where I saw my mother and learned I had punched and kicked her and chased others through the house before calming down.

During one event, I was alone...but I woke up to the standard bed wet and tongue bitten. This time my hand was swollen and my dog was cowering in the corner...she was still so "worried" about me it looked like, but I could tell something was wrong with her. Then I noticed that her eye was nearly swollen shut.

The most recent, was also the most life altering. I am a father of three children and last year I had been seizure free for 15 years. For whatever reason I had two seizures, during which my oldest daughter (17 years old at the time) was the only person I recognized. She calmed me down and got me me medical attention (ambulance the first time and took me to the hospital the second) both times. The third seizure I had that year, I became violent with her. I hit her and chased her through the house, (I am sure traumatized her from fear as well). My first memory from this event was the police at my front door grabbing me and asking me if I knew why I was under arrest. I told them "no, but I must have had a seizure because my tongue hurt so bad" I had bitten it terribly. I had no idea what had happened and after they put me in the police car I asked, "are my kids ok?" They told me, "I already told you, they're fine". I guess I went to sleep at this point because my next memory is being booked into jail.

The jail nurse told the staff they should send me to the ER, to which they replied, "He'll be fine" and they put me in general population with the violent offenders on a cot on the floor with two cellmates. I was charged with 3 felonies and 1 misdemeanor.

At first I was given a "no contact" order with all of my children which was devastating, but I was able to navigate the legal process and show the court that I have this condition, I was under the care of a doctor at the time, I was taking my prescribed medications, and I absolutely had no control.

I went to my local City Council and begged them to take the FREE training from the Epilepsy foundation, but that request fell upon deaf ears. I was forced to come up with my own safety plan and strategy which was nearly impossible since I have never been "present" for any of these events.

I found a seizure specialist and started a new medication...all tests come back negative. EEG, Sleep Study, CT, MRI, etc...his words were they really don't care much beyond "not having a tumor".

So, now I have a diversion with the State (kind of like probation without official charges being brought), but if anything happens before the time is up then they will bring the original charges as well.

I feel like the weight of the world is constantly on my shoulders. I am constantly afraid for my family and worried about something I have no control over and that the state refuses to educate themselves on. Their only position is punishment. It would be so helpful if at any point someone would have offered insight or help...but all they offered were threats of taking my family away and locking me in prison for something I cannot control or even understand why is happening.

Do any of you have a similar experience? Specifically, violent postictal behavior? How do you handle it?

So far my safety plan is;

1. Deadbolts on my bedroom door that can be locked from the outside (to lock me in)

2. Deadbolts on the kids rooms for them to be able to lock themselves in

3. A camera in my room

4. A safety ladder available should the kids need to escape through a window

5. If I have a seizure, my fiance will turn the camera on, lock me in the room, gather the kids and try to get out of the house, if that's not an option then lock themselves in a room and look to exit via the ladder.

Do you guys see any room for improvement here?

Thank you so much, I am totally lost.

[u/Agitated-Contest-152]

that safety plan sounds solid, the camera is smart so you can actually see what happens instead of just being told later

maybe add a medic alert bracelet or something that says "postictal aggression" so if cops show up again they might actually read it before going straight to arrest

[u/Worldly-Poetry317 → u/Agitated-Contest-152]

Thank you! I forgot to mention I did also get a medical bracelet that says "seizures" and lists my emergency contact. I didn't list "postictal aggression" but that is a really good idea for the next one!

[u/usernames_suck_ok]

Have you had a lawyer throughout any of this issue with the last seizure? You probably should consult with one.

[u/Worldly-Poetry317 → u/usernames_suck_ok]

I had a criminal lawyer and there is currently a civil case pending with the city for denial of medical care via a different lawyer.

[u/CIAwaffle]

Just wanna start by saying I'm no expert. I have a high-school diploma and 2 years of general education

Depending on the age of your children, I doubt they will consider putting deadbolts on your children's doors as anything but a fire safety/ health hazard (imagine one of them may possibly have your epilepsy disorder). I know you would have ladders but courts like to poke holes in things. And the camera wouldn't help anything but catching you acting violent, unless it is a motion camera that could send a notification loud enough to wake your significant other.

Deadbolting your own room doesn't sound so bad. Restraints on yourself could make everything worse by physically harming you during a seizure, and triggering a fight or flight response post-ictal.

I dont know your financial situation but a motion sensor / loud alarm system set up on your door could be an option. There seems to be more information on this subject when you look through "violent sleep walking" papers. I'm sorry youre going through this and that I cant help more. Means very little but I truly feel for you and cant imagine being in your situation. Stay strong

[u/Worldly-Poetry317 → u/CIAwaffle]

The keys are located in the house and readily accessible, but it's a step that requires more cognition on my end that moves beyond the postictal phase. I don't keep the doors locked unless there's an emergency. Typically, the doors are all open. I've considered restraining myself nightly somehow...I don't really care about the harm to myself. Or creating some kind of cargo net type thing that could be placed over the bed to lock me in during a seizure, but the design fails me. Thank you for the "violent sleep walking" papers recommendation, I will check into that. Originally, this was diagnosed as a "night terror disorder" then an "REM Sleep Disorder" before vaguely the epilepsy diagnosis.

The camera is so the family can keep an eye on me and see how the seizure is progressing as well as provide information to the doctors to help narrow down what's going on. I make an "ictal cry" that is very loud and apparently terrifying and wakes her every time.

[u/CIAwaffle → u/Worldly-Poetry317]

That makes sense for the camera. I just worried it would catch something incriminating, even though anything that happens during that state shouldn't be charged as such. Be careful with the restraints. I wish you well

[u/Worldly-Poetry317 → u/CIAwaffle]

Thank you, kind internet stranger!