hydrogyrum
New
- Messages
- 47
- Reaction score
- 0
- Points
- 0
Post-Ictal Freak-Out
Hi Folks,
I’d like to talk about experiences we’ve had after the seizures. Please share what happens to you. To get the ball rolling, here’s my (long) story. I hope it’s entertaining enough for you to continue reading….
I had a pretty sizable concussion in January 2015, about the 7th-9th one of my life (I’m 48, female). I was diagnosed with right temporal lobe epilepsy in March 2016 and went on Keppra.
Keppra: Became irritable to the point I noticed it in July 2016, then had 2 suicide attempts in September and October, changed to Depakote for 3 days late October.
Depakote: Was told I was being given Depakote, but the drugstore gave me Depakote ER (about twice as strong, yet drugstore’s label gave dosages for “straight” Depakote). Experienced supreme mania (up 3 nights straight, really nice seizure as a result). This scared the heck out of me because I was up 3 nights in a row before trying to kill myself both times earlier. Next, I went on Lamictal.
Lamictal: Been on this since late October (now at 100mg 2x/day). It’s okay, but keppra worked better, aside from the suicide attempts. (Other than trying to kill myself, I loved keppra: my brain “felt better” within 15 minutes of taking the stuff. I can’t explain it, but that’s how it felt. But with every suicide attempt, you get better at it, so I thought it best to make a switch.) I’ve had some pretty major seizures while on Lamictal. Here's my most glorious seizure:
- What I guess was status epilepticus in early December (a series of seizures, not one long one). My earliest memory of the sequence was that I was sitting at my computer in the basement. I must have started seizing then, but must have decided to get up. I “guess” this because I ended up 45 degrees to my left vs. my usual path away from my computer—I ended up sitting on the floor in the “well” of a metal desk, banging the left side of my face against the metal desk. I recall thinking, This isn’t good, H., stop this. Eventually, I did, only to begin banging the right side of my face against the desk. Again, I couldn’t stop myself while thinking that it wasn’t good.
After the head banging, I ended up face down on the floor. I tried getting up, on all fours, only to have my arms give out and do a face-plant into the floor. Spent some time here until I struggled up and fell down, only to feel a hard object in my mouth. I thought it was something from the floor (we have an 8-month-old dog and he decimates things), so I spit it out across the room (mustn’t choke on a foreign object, right?). Found out later that it was my front left tooth. Oh well.
Managed to crawl about 8 feet across the floor until giving out. At this point, said puppy came down and began pulling at my right arm. He hates to see me this way; remember thinking, “G., stop pulling my arm.” Remember him growling and giving a massive pull on my arm (only relevant because a few days later, I found that I had a laceration requiring 8 stitches). It hurt A LOT, but when seizing and you have no control over things, you can only note the pain but are helpless to do anything about it (do you know what I mean?).
End seizure event here: babbling incoherently. I can carry on a conversation with another person. They say perfectly normal things, while I reply with nonsense. I’ve read that this is normal for right temporal lobe epilepsy; any one else have this? Had a "conversation" with my mom at this point, and then managed to dial 911 and give them a babble as well.
End result: went to ER because this seizure/s went on for half an hour or more. I managed to call 911, but my mother wanted me to call and put the phone by me while I was on the floor (live with parents). Went to ER and freaked out.
I am truly insane in the ER. Does any one else have this problem? It's really tough because you go there for help, only to fight them.
This is what I call my “post-ictal freak-out.” It’s pretty paranoid-based: I’m scared for my life and want to destroy whoever is around me. Even tried punching a sheriff's deputy in the crotch earlier this week. I feel that they are out to kill me, so I lash out. Considering what has happened to me, it’s pretty sane; however, to the sane people around me, it is abnormal.
I would like to hear about the experiences of others who go crazy in the ER, or experience “post-ictal freak-out” without going to the ER. I’ve come to the conclusion that going to the ER after status epilepticus is not productive because emergency medicine people only see you as a loony tune, not as somebody going through the misery of post-ictal freak-out. I would rather die than be subject to the abject conditions of Grand Rapids Michigan ERs. I know that I treat the ER personnel poorly, but geez oh pete, I cannot control myself. In my post-ictal condition, all I’m concerned about is my survival; I don’t give a poot about their desire to have a smooth shift.
Does any one else experience this hell? Please chime in.
Hi Folks,
I’d like to talk about experiences we’ve had after the seizures. Please share what happens to you. To get the ball rolling, here’s my (long) story. I hope it’s entertaining enough for you to continue reading….
I had a pretty sizable concussion in January 2015, about the 7th-9th one of my life (I’m 48, female). I was diagnosed with right temporal lobe epilepsy in March 2016 and went on Keppra.
Keppra: Became irritable to the point I noticed it in July 2016, then had 2 suicide attempts in September and October, changed to Depakote for 3 days late October.
Depakote: Was told I was being given Depakote, but the drugstore gave me Depakote ER (about twice as strong, yet drugstore’s label gave dosages for “straight” Depakote). Experienced supreme mania (up 3 nights straight, really nice seizure as a result). This scared the heck out of me because I was up 3 nights in a row before trying to kill myself both times earlier. Next, I went on Lamictal.
Lamictal: Been on this since late October (now at 100mg 2x/day). It’s okay, but keppra worked better, aside from the suicide attempts. (Other than trying to kill myself, I loved keppra: my brain “felt better” within 15 minutes of taking the stuff. I can’t explain it, but that’s how it felt. But with every suicide attempt, you get better at it, so I thought it best to make a switch.) I’ve had some pretty major seizures while on Lamictal. Here's my most glorious seizure:
- What I guess was status epilepticus in early December (a series of seizures, not one long one). My earliest memory of the sequence was that I was sitting at my computer in the basement. I must have started seizing then, but must have decided to get up. I “guess” this because I ended up 45 degrees to my left vs. my usual path away from my computer—I ended up sitting on the floor in the “well” of a metal desk, banging the left side of my face against the metal desk. I recall thinking, This isn’t good, H., stop this. Eventually, I did, only to begin banging the right side of my face against the desk. Again, I couldn’t stop myself while thinking that it wasn’t good.
After the head banging, I ended up face down on the floor. I tried getting up, on all fours, only to have my arms give out and do a face-plant into the floor. Spent some time here until I struggled up and fell down, only to feel a hard object in my mouth. I thought it was something from the floor (we have an 8-month-old dog and he decimates things), so I spit it out across the room (mustn’t choke on a foreign object, right?). Found out later that it was my front left tooth. Oh well.
Managed to crawl about 8 feet across the floor until giving out. At this point, said puppy came down and began pulling at my right arm. He hates to see me this way; remember thinking, “G., stop pulling my arm.” Remember him growling and giving a massive pull on my arm (only relevant because a few days later, I found that I had a laceration requiring 8 stitches). It hurt A LOT, but when seizing and you have no control over things, you can only note the pain but are helpless to do anything about it (do you know what I mean?).
End seizure event here: babbling incoherently. I can carry on a conversation with another person. They say perfectly normal things, while I reply with nonsense. I’ve read that this is normal for right temporal lobe epilepsy; any one else have this? Had a "conversation" with my mom at this point, and then managed to dial 911 and give them a babble as well.
End result: went to ER because this seizure/s went on for half an hour or more. I managed to call 911, but my mother wanted me to call and put the phone by me while I was on the floor (live with parents). Went to ER and freaked out.
I am truly insane in the ER. Does any one else have this problem? It's really tough because you go there for help, only to fight them.
This is what I call my “post-ictal freak-out.” It’s pretty paranoid-based: I’m scared for my life and want to destroy whoever is around me. Even tried punching a sheriff's deputy in the crotch earlier this week. I feel that they are out to kill me, so I lash out. Considering what has happened to me, it’s pretty sane; however, to the sane people around me, it is abnormal.
I would like to hear about the experiences of others who go crazy in the ER, or experience “post-ictal freak-out” without going to the ER. I’ve come to the conclusion that going to the ER after status epilepticus is not productive because emergency medicine people only see you as a loony tune, not as somebody going through the misery of post-ictal freak-out. I would rather die than be subject to the abject conditions of Grand Rapids Michigan ERs. I know that I treat the ER personnel poorly, but geez oh pete, I cannot control myself. In my post-ictal condition, all I’m concerned about is my survival; I don’t give a poot about their desire to have a smooth shift.
Does any one else experience this hell? Please chime in.
Last edited:
