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"Post-ictal" confusion

Wed, 01/07/2009 - 00:06

Hey all,

Most of you don't know me, but, as I stated in my introductory thread, I'm new to all of this (Holy pleonasm, Batman!).  

The first time I ever witnessed a seizure was during my video EEG in November.  Naturally, I saw quite a number of them over the next few nights.

What has stuck with me wasn't necessarily the seizures themselves.  It was the period afterwards.  The doctors and nurses would begin asking a series of question to the teenager in the bed next to me.  I'm sure some of you are familiar with the routine:

"What's your name?"

"David."  He got that one right.

"Do you know where you are?"

"September...19th.  Or 20th.  I think."

So David was capable of responding to verbal cues, but he wasn't actually able to comprehend them.  He knew he was being asked general questions, but he didn't know what he was being asked.  

Essentially -- I think -- his brain wasn't really functioning, at least not at anything resembling a normal level for him.  While it was in the process of recovering, David's brain had created a limited level of awareness.  He wasn't in a seizure state, he wasn't back to normal, he was sort of in the middle somewhere, almost as if it was a survivalistic instinct.  His brain had developed a third state.  

The mere fact that some of you have gone through this so many times that your brain reacts this way is heart breaking.  It was by far the most devastating realization of my four day stay in the hospital.  

I hope this is not a breach of etiqutte as, again, I'm new to this and only suffer from absence seizures, but is this what it's really like for a lot of you?  What is that recovery period like?  How does all of that compare to the seizures themselves?

 

 

 

 

Comments

Re: "Post-ictal" confusion

Submitted by rikk on Fri, 2009-01-09 - 12:42

what in essence a seizure is, is a short circuit of the brains electrical.  for me the best way to describe this having a computer crash, starting the recovery process in the safe mode, and finding conflicts in the system, like when the wires from the modem and the camera get connected by the short, it takes the brain a little while to get the wires straighten out.  depending on the type of seizure and its duration, relates to the type and lenght of the post ictal effects.  it can range from a few seconds to several hours, and can be days with rare cases.  all the people asking the questions are trying to determine level of consciousness, and type of seizure activity.  the idea that people think some are faking seizures is because some people try.  the bad thing is that the people are ignorgant, stupid, or just mean.  that includes medical and non medical people.

as long as crossing the line.  for me the line is simple. questions, curious, or need for answers.  you have seizures. even if you did not.  it is only crossing the line when it is mean.  i feel most of can discern the differences in the questioning.    this forum is open.   if people are offended they can respond, if they choose.  if not like a tv program, if you don't like it, don't look/listen, or change the channel.  hope it helps.  rikk

what in essence a seizure is, is a short circuit of the brains electrical.  for me the best way to describe this having a computer crash, starting the recovery process in the safe mode, and finding conflicts in the system, like when the wires from the modem and the camera get connected by the short, it takes the brain a little while to get the wires straighten out.  depending on the type of seizure and its duration, relates to the type and lenght of the post ictal effects.  it can range from a few seconds to several hours, and can be days with rare cases.  all the people asking the questions are trying to determine level of consciousness, and type of seizure activity.  the idea that people think some are faking seizures is because some people try.  the bad thing is that the people are ignorgant, stupid, or just mean.  that includes medical and non medical people.

as long as crossing the line.  for me the line is simple. questions, curious, or need for answers.  you have seizures. even if you did not.  it is only crossing the line when it is mean.  i feel most of can discern the differences in the questioning.    this forum is open.   if people are offended they can respond, if they choose.  if not like a tv program, if you don't like it, don't look/listen, or change the channel.  hope it helps.  rikk

Re: "Post-ictal" confusion

Submitted by ajsmama on Sat, 2009-01-10 - 01:03

Hi RitKid742 -

I decided to use my first post to respond to your question.

I'm 24 and was diagnosed with Epilepsy at 21.

After my first seizure the first thing I can remember is being told I'd had a seizure. For me post-ictal is the most frightening thing about the seizure. I was very uneducated about seizures and what happens post seizure. My husband has had seizures from the time he was a small boy. He had at that point, had one seizure while we'd been dating and ended up in the hospital. The doctors at that time failed to explain to me what happened to him and I didn't have much of an understanding of what was going on.

When I "woke up" I was very confused and had the worst headache I'd ever had. I'd compare it to a hangover, but that'd be an understatement.  I had been in the middle of a performance review in the office of my bookstore job. When I opened my eyes I was on the floor, looking at many of my coworkers who were telling me I'd had a seizure and that the ambulance was on it's way. I remember thinking first, "You guys are crazy." Then telling them, "No I don't have seizures, my husband does." Then I remember crying uncontrollably. My main problem was not being able to concentrate. My mind was going all over the place and my words were incredibly mixed up. When asked a question, I couldn't communicate the answer in my mind to the person asking. Just to give a fake example, let's say the EMT asked me what day it was. In my head I was thinking, "Thursday" but I would answer, "Pineapple". As soon as I understood what had happened, my emotions were running very high and I could not control them. I was very weepy, I was very sick and threw up many times. I was very confused. After around 30 minutes I understood fully what had happened and remained the most tired I'd ever been and had the worst headache I'd ever had.

My second seizure, that led to the diagnosis of my epilepsy, was much worse. I took a trip to NYC to visit my best friend. The morning after I arrived, we were leaving her building to go to the subway from Queens. As we walked down the steps out the building I went into a seizure, fell over and smashed my face/mouth/teeth on the sidewalk and then began convulsing. From what I understand a group of people ran over to help and the doorman called 911. I remember waking up to my best friend telling me I'd had another seizure and again I was in denial. I remember telling everyone that I was going shopping, I hadn't had a seizure. I remember looking up at the kind faces of some of New Yorks kindest EMTs. These EMTs came back later in the day to check on me and I wish I knew who they were. They were so nice to my friend and I.  This time I feel like I had much less control of my body, muscles and brain after the seizure. I was in the hospital for three days. My post-ictal phase seemed to last hours and hours longer, along with having another seizure during, than the first.

I very specifically remember the exact same problem of not being able to communicate. I remember the great ER doctor asking me questions and thinking of the answer in my head but nothing coming out right. I think this is the scariest thing of all for me. It's disturbing to lose time, but it's very disturbing to not be in control of your brain. It's like I was there so that I could see what was happening and know for later on, but I was not allowed to participate or be involved. It's like someone editing what came out of my mouth as it did.

I realize that this account of post-ictal is lacking proper terminology and includes a lot of irrelevant information. I've been trying to put these accounts together for years now. 

Hi RitKid742 -

I decided to use my first post to respond to your question.

I'm 24 and was diagnosed with Epilepsy at 21.

After my first seizure the first thing I can remember is being told I'd had a seizure. For me post-ictal is the most frightening thing about the seizure. I was very uneducated about seizures and what happens post seizure. My husband has had seizures from the time he was a small boy. He had at that point, had one seizure while we'd been dating and ended up in the hospital. The doctors at that time failed to explain to me what happened to him and I didn't have much of an understanding of what was going on.

When I "woke up" I was very confused and had the worst headache I'd ever had. I'd compare it to a hangover, but that'd be an understatement.  I had been in the middle of a performance review in the office of my bookstore job. When I opened my eyes I was on the floor, looking at many of my coworkers who were telling me I'd had a seizure and that the ambulance was on it's way. I remember thinking first, "You guys are crazy." Then telling them, "No I don't have seizures, my husband does." Then I remember crying uncontrollably. My main problem was not being able to concentrate. My mind was going all over the place and my words were incredibly mixed up. When asked a question, I couldn't communicate the answer in my mind to the person asking. Just to give a fake example, let's say the EMT asked me what day it was. In my head I was thinking, "Thursday" but I would answer, "Pineapple". As soon as I understood what had happened, my emotions were running very high and I could not control them. I was very weepy, I was very sick and threw up many times. I was very confused. After around 30 minutes I understood fully what had happened and remained the most tired I'd ever been and had the worst headache I'd ever had.

My second seizure, that led to the diagnosis of my epilepsy, was much worse. I took a trip to NYC to visit my best friend. The morning after I arrived, we were leaving her building to go to the subway from Queens. As we walked down the steps out the building I went into a seizure, fell over and smashed my face/mouth/teeth on the sidewalk and then began convulsing. From what I understand a group of people ran over to help and the doorman called 911. I remember waking up to my best friend telling me I'd had another seizure and again I was in denial. I remember telling everyone that I was going shopping, I hadn't had a seizure. I remember looking up at the kind faces of some of New Yorks kindest EMTs. These EMTs came back later in the day to check on me and I wish I knew who they were. They were so nice to my friend and I.  This time I feel like I had much less control of my body, muscles and brain after the seizure. I was in the hospital for three days. My post-ictal phase seemed to last hours and hours longer, along with having another seizure during, than the first.

I very specifically remember the exact same problem of not being able to communicate. I remember the great ER doctor asking me questions and thinking of the answer in my head but nothing coming out right. I think this is the scariest thing of all for me. It's disturbing to lose time, but it's very disturbing to not be in control of your brain. It's like I was there so that I could see what was happening and know for later on, but I was not allowed to participate or be involved. It's like someone editing what came out of my mouth as it did.

I realize that this account of post-ictal is lacking proper terminology and includes a lot of irrelevant information. I've been trying to put these accounts together for years now. 

Re: "Post-ictal" confusion

Submitted by shiznit on Sat, 2009-01-10 - 21:36

I just had two on the 3rd, I was talking to my sister on the phone.  She wondered why I stopped speaking with her and all of a sudden she her tattering noises, then the dog sniffing the phone.  She hung up her line and then called my husbands phone.  He was in the basement cleaning up.  She called back my cell phone and I answered it.  I picked it up and said HI, she said, very upset WHAT HAPPENED, WHAT WAS GOING ON, DID YOU HAVE A SEIZURE!, shit I relized then.  I treid to pretend in my confused head of mine to brush it off as best I could......I realized if it were found out it would be another 6 months of not driving. My sister demanding that I get my husband from downstairs. Well I did.  He came up and saw that there was spilled pop and that I couldn't get my words out right, that my one eye was blood shot.  The minute he said "Where is your doctor's phone number I went into another seizure, that's when he called EMS and the next thing I knew I was standing up again telling everyone "I'm ok" "I'M fine!" but at that point I knew it was too late, that more must have happened.  I was wisked away in the ambulance.  They were asking me about my meds and I couldn't even remember the changes my doctor had just made to them.  

They did tell me about the lovely seizure dogs that are avalialbe ---- I am interested.  So needless to say I can't drive until July now and I can't have any wine at all.!!!  :-( bleh

I just had two on the 3rd, I was talking to my sister on the phone.  She wondered why I stopped speaking with her and all of a sudden she her tattering noises, then the dog sniffing the phone.  She hung up her line and then called my husbands phone.  He was in the basement cleaning up.  She called back my cell phone and I answered it.  I picked it up and said HI, she said, very upset WHAT HAPPENED, WHAT WAS GOING ON, DID YOU HAVE A SEIZURE!, shit I relized then.  I treid to pretend in my confused head of mine to brush it off as best I could......I realized if it were found out it would be another 6 months of not driving. My sister demanding that I get my husband from downstairs. Well I did.  He came up and saw that there was spilled pop and that I couldn't get my words out right, that my one eye was blood shot.  The minute he said "Where is your doctor's phone number I went into another seizure, that's when he called EMS and the next thing I knew I was standing up again telling everyone "I'm ok" "I'M fine!" but at that point I knew it was too late, that more must have happened.  I was wisked away in the ambulance.  They were asking me about my meds and I couldn't even remember the changes my doctor had just made to them.  

They did tell me about the lovely seizure dogs that are avalialbe ---- I am interested.  So needless to say I can't drive until July now and I can't have any wine at all.!!!  :-( bleh

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