Community Forum

"Post-ictal" confusion

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?






peace R.C.

   Hi ,similar to smoking pot, only a 1/2 lb in one hit.

    I had 4 gmal szs sun night and my 10/11 yr old d.d said all that to me .

    I used to say it took 8days to recover from this BUT this is bad.

     I am 45 and tough as nails  it finally got me last yr.but I have always toughed it out . there are worse cases. I feel for people . I can not say what I think here I am real slow.  Rick


A few years back I had a TC in the emergency room, triggered by a prescription drug I was given. I woke up wiht a oxygen mask on in a cubicle. Apparently I had been in the resus room and I vaguely remember seeing the clock in there. Somebody said I had "a turn" but that meant nothing to me. If somebody doesn't tell me I've had a sz then It can be a long time before I figure it out. I got hold of my ER notes later on which fully documented what happened. What amazed me was how it was 8 minutes from the sz onset to "GCS of 15" ie fully concious and alert which means I was obviously looking and sounding awake, when it was easily a hour before I "woke" up. I don't remember anyone asking me any questions. I've never been able to figure that out. Apparently that's happened alot, I've been holding conversations with people with absolutely no recollection.

Another time apparently I rang a friend when I was post-ictal (I live alone) and she came round, took one look and tried to drag me down to ER. I vaguely remember arguing with her then agreeing to go. I though it was only a couple of minutes, she told me later it took her over half an hour to get me in the car. (That one got me admitted because it was taking too long to "come right".

I've managed to trash my lounge a couple of time right after a sz, I still don't know why. On,e it got me a broken finger. It's really quite scarey. Coming out of a TC when I'm on my own is the biggest problem, but if someone is around to tell me I had a sz then things make more sense. I haven't had to deal with that for a long time since my TCs went all nocturnal and I've slept right through the post-ictal part.

I'm not sure if there's any point in figuring it out, brains make no sense at all.



When you are post ictal your brain is trying ot get back to normal after mis firing.  I remember after my first seizure, I was 17 and I was brought into the ER in a small town in West Virginia. I was a 17 year old Calfornia blong girls who was working on  her pilot's license, had solod a month before, planed to be a pilot for a living, but some how had the presense of mind to ask the doc how the siezure would affect my flying.  Not realizing I was in fact a pilot, he told me, it would not.  Not being with the program, I was in for a rude awakening when I got home and lost my driver's license, not to mention my medical to fly. I'm still grounded for now.

Mine can be very different depending upon the type of seizure I had. I have a wide range of seizures. Mild ones, I may just be a bit confused but never miss a beat. on the other end of the spectrum, if I go into status epilepticus, when I wake up in the hospital the IV they are trying to shove through my strained arms that wont relax is one of the most painful things I've ever experienced, it's almost as if every nerve in my body is alive and aware of every little thing happening, so that needle for the IV becomes a huge bowie knife! lol... I won't be able to talk, walk, make sense, much less understand a word you say, and I can be ... oh what is the word, um.... I guess aggressive... not really but um... disrespectfull... sorry can't think of right word...  Other times when I had a grand mal I sat straight up like off a scary movie and just stare around confused, disorientated and it takes a good fifteen to twenty minutes to get me to understand anything.  But after the big ones I always need sleep. LOTS of sleep. lol...

The time period immediately following a seizure is usually labeled the "postictal" phase once the
seizure has ended.  The exact dividing line between the seizure period (the "ictal") and the postictal
period is subject to interpretation;  generally the ictal is a matter of minutes, while the postictal
may last for hours or more.  The difference between a "physical" recovery and a "conscious" recovery is
easily confounded by observers of the postictal phase, and frequent amnesia experienced by the
sufferer adds to the confusion about "consciousness."  "Comprehension" is even a more vague concept.

"Consciousness" is a concept that is not well defined, and using words like "awareness" or "responsiveness"
doesn't help much.  After many of my severe partial seizures, and some of my tonic-clonic seizures,
I am conscious enough to remember medics trying to get a response from me, but my temporary inability
to speak or move, and especially with ocassional blindness, is interpreted by the medics as not
having consciousness which I would beg to differ with them if I could speak or move.  Almost always
I have a strong desire to just go to sleep after a seizure, but paradoxically, once I was labeled
unconscious, while I heard and remembered a lot, and one nurse was arguing that I was "faking" it
shortly after a seizure. (Some of these experiences were also verified by others when I related it
to them, so I know its not just dreams or false memories).

Amnesia is frequently a problem, as I have had major seizures in my bathroom and managed to return
to bed, and yet when I awake later I have no memory for what hapened, but I am stiff and sore, with
bruises, torn and cut skin, a bleeding tongue, a trail of blood between the bathroom and my bed, and
my bathroom in shambles with puddles of blood.

Differentiating amongst "states of mind" poses a problem because there is not an objective and
valid scientific definition between the first two states "established," conscious and unconscious.


I've had three tonic-clonics, and have some memories coming out of that third state you described. The big difference for me was how long I went without treatment. The best I can describe it is that my consciousness is detached and in some kind of void. There are moments when I connect with reality, but they're brief until I fully recover.

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

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. 

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 have had epilepsy since I was 17 - I am now 31.  I used to do the same thing and not tell my doctor or my friends about my seizures because I didn't want to lose my license.  Then I got into a car accident and I was lucky there was a car in front of me to stop me from going through a very busy intersection.  I haven't driven in 9 years.  I wasn't having them often, but often enough. 

 Please don't drive.  You may not only hurt yourself but others. I learned that the hard way. 







My post-ictal stage tends to be anywhere from 5-30 minutes depending on the severity of the seizure. I am usually really good at hiding my seizures since they are generally just left sided facial and sometimes left arm.

I tend to have right sided headaches where it feels like someone is standing there stabbing me in the head with a knife and twisting it.  

Then there is the confusion and slurring of the speech.  My coworkers can usually tell I have had a seizure after the fact.  One of the girls was asking me to come to her desk to help a person on her phone.  I ended up going to someone else's desk completely.  So there was some understanding of what I was supposed to do, but not completely.  And that was already at least 10 minutes after my seizure. 

I know that some of the patients I have dealt with at work have actually gotten upset because I mix up my words.  When my coworkers see this happening, they tend to try to step in.  

I am 27 and have been suffering from both peni-mal and grand-mal seizures since I was 8.  I am now left disabled and having 3-9 seizures a week.  The post-dictal state for me is the worst part especially if I only had a peni-mal seizure.  The best way I can describe it is as if I was sleep walking.  It seems like I am all there and ok, but during this time I do weird things and when  I finally come to the mess I make sometimes baffles me.  I am right now in the middle of a law suit with the police dept, as I suffered a seizure in public and during my post-ictal state the police thought I was faking and wound up moving me from my position on the ground which cause bruising to me face that was scrapping on the ground as well as a fractured rib from when they dropped meon the ground.  The post-ictal state is not understood by most and is the hardest thing to get people to understand

Hi, meshee -  I am new here and am just checking out the site.  I am 42 with grand-mal seizures from a brain tumor & multiple surgeries.  I am curious:  how did it go with your law suit with the police?  Years ago I had a seizure while I was driving and crashed my van (not badly, thank god).  Somebody called an ambulance.  When I came to I was being slapped & bashed by the police who apparently thought I was on drugs.  I never did anything about it because I had worse things to worry about, but I have always thought that I should have taken legal action.  How did yours turn out?  Where do you live?



LOL...Hi RitKid. :)  For everybody, it's different.  But, I can tell you what I experience.  I have grand mals (tonic clonics).  You know, the ones you see on TV with the person shaking and convulsing and apparently choking.  That's me. :) And trust me, I don't remember any of it.   Anyway, when I'm coming out if it, the first thing I get back is my hearing...then my vision...and finally my ability to speak.  So when I can hear and see, I don't necessarily understand what's being said.  And this can be humorous at times. :)  For example, after a seizure once, I open my eyes to find my hubby leaning over me....he kept asking if I knew who he was...after being asked enough times, I started to panic.  Who was he?  Finally, my brain snapped back and I looked at him weird and said, "Of course I know who you are!  We've only been married for 3 years..."  But yeah, I hate the questions the docs always ask.  what's your name, do you know where you are, how old are you, what's todays realize that they're checking to see exactly how much your coming out of the seizure, but the questions can be annoying...especially when all you want to do is go home and sleep. :) It used to be that after a seizure, I'd go home and just sleep.  I could sleep for hours recovering.  Then, my hubby started wiping the back of my neck and forehead with a cool damp cloth during the seizure and the length of the seizure went down as well as the recovery time needed.  Now, if I do seize, I only need about a 20 min. nap afterwards and I can get back to living life. 

I know how all of you feel. I have complex partials. I remember nothing about the seizure itself. I know that I do have some confusion afterwards, but have no memory of most of it. I am greatful that I have no memory of this time period and all the odd things I do. While I can laugh at some of the things I have been told I did during this time period, I think that actually remembering doing these things would be painful.

 Almost 3 years ago, I had a seizure while cooking some pasta for my lunch. Based on my wounds, I figured that I was probably just about to take the pot off of the stove when the seizur happened. In my confused state, I must have grabbed the pot itself and not the handle. I then must have poured the boiling water down my left arm,with the water soaking into my clothes. I came to with my hand hurting and could not figure out why. Then my arm started hurting and then my left abdomin. It took a little while to figure out why. After I did make figure out what had happened, I called 911. I had 1st and 2nd degree burns on my arm and right hand and 2nd degree burns on my left abdomin. I was in the hospital for 3 days.

         I have noticed that a lot of people compare the post-ictal period to a computer rebooting after a breakdown . I think this is a great comparasion. You have some basic functions, but the higher ones are not up to full speed yet.

Ever since I have been on my current dose of medication, the post ictal periods have been milder  and shorter. Thankfully, I have gone about 5 months without a complex partial.

Apparently after a tonic-clonic seizure, my brain kind of stops functioning for a bit. My parents told me that for about 3 hours I asked them "what happened?" and they would tell me I had a seizure, then about two seconds later I'd ask what had happened again. At one point I seemed to have grasped this fact and got pissed off for about a minute (I vaguely remember that, lol), and then after 3 hours I suddenly "snapped back" and was aware of what was going on around me.

The seizure lasted about a minute or two, but the fact that I was out of it for 3 hours kind of scares me. Sometimes I'm just tired, other times I fall asleep, but other than that nothing seems to come of it. I don't get stiff 'til the next day, though =D In relation to the seizure...? Recovery was worse, because I had 3 hours of missing time =p

Perfectly normal. What ?  OK say you break or sprain an ankle...You can go boogeing whole night ? It needs to recover before you can do the moonwalk!

So will the medics stop being unbelievably stupid about the damn recovery phase.

They actually make it worse and all Brain is doing is asking for some damn peace and quiet.

I normally want to say Fuck off. I am not ready to speak yet. Come back later if you are looking for conversation.

The vouyerism is unbearable. There was nothing wrong with David. The humane thing is to fill him in!

Believe me, he will know if he has missed out on something. I had status epilepticus. I woke up in ICU and asked the questions first! What day is it? Monday...I had lost Sunday and most of Saturday. Wow, clever brain me.

There are no alternative states....merely recovery....and we are not to be made fun of.

In my recovered state I will decimate you with my intelligence.

And don't tell me my condition breaks your heart. No pity needed. Empathy, yes. You don't know when you can take a turn for the worse. I speak from experience.

I am changing seizure types, I think, maybe,is possible. Fri am fell backward and now we are again trying to figure if seizure or something else. This time I was confused for several hours. Thurs night was doing crossword and then was doing crosswords with wet pants and bruises. Must have been a rough crossword.
first diagnosis in 92, another last year.
Am told that seizure types don't change. This one seems to be, or perhaps has finally driven me crazy and I am making it up. Used to be that I would come around quickly. Don't know, don't remember. Was told this.
Is twice that I was confused for a long time. Used to be 5 min max.
past seizure choice was simple partial with a few complex tossed in. Now no fun little simples but is complex and I pass out. Might be a different kind, don't know, don't remember.(teehee)
Maybe we could get island somewhere and no questions asked? anytime, about anything.
My favorite is when neuros ask 'What happens during amnesia?'

I'm extremely confused afterwards.  Some mornings I struggle to even remember where I work.  Eventually the fog will lift, but a lot of memory gets erased which leads to more confusion like "who was that person just talking to us that acted like he knew me really well", or "we had a meeting about this last week?  Really?" 

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My post-ictal state usually lasts 30 minutes.  When I wake up, I can carry on a conversation with others, but have complete amnesia of it.  Usually, someone will repeat themselves after a minute or so, and I'll respond as though it was the first time I heard it.  Finally after being told several times that I had a seizure (approx 30 min) while confused, I'll respond with, "I know had a seizure."  That's how I know okay.


Extreme post-ictal confusion, like after a cluster of severe generalized tonic clonic seizures, is similar to yielding back to the very fabric of existence itself. When there is awareness without any symbolic meaning to anything, it is like being born again. Self awareness vanishes and there is only awareness.

What is heart breaking is how extraordinarily quickly the brain "recovers".

Within minutes or days or sometimes months, our old "self" takes hold with all of its likes and dislikes and expectations and preconceptions of how things should be.

Gone is the post-ictal confusion, which is just another way of saying, gone is the ability to stay in the moment through becoming completely absorbed, so much so that ones ego actually vanishes....

The example of Dave simply having trouble remembering which day it is would be, as they say, the tip of the iceberg.

I love post-ictal confusion!

much love to all,


peace R.C.  Hi Been awhile! I see I said something here a long time ago ,very short ,must have been in a lot of pain?

I have done some manner of everything listed here by everyone, BUT I can see a detail that may be left out here is the fact we are also recovering from lack of oxygen and sometimes a concussion ,Although so much information says we recover fully from the szs. it is a little misleading or at least lacking because so much other research shows how lack of oxygen and concussions ,especially when it happens multiple times DOES cause brain damage. 

I have become fully aware that their is no doubt I am simply not as smart as I was a few years ago. Not in a "oh yeah that happens with age, or we all have a bad memory way BUT in a lets compare tests scores from 5 yrs ago and now kind of way.  It took me a life time to understand that I have had an "aura" all my life and also a poster child for A.D.H.D.  and possibly a lot of that "spacy" behaviour I have always been known for was actually a short sz.

It is signifcant here because if I have been doing that for so many yrs. have I also been in a sort of constant "postictal" state for many years also?  B.t.w. am typing one handed,with a postical migraine,and recovering from falling and breaking a shelf OFF the wall about 2 hrs ago. I will not sleep for about 2 days now. my hearing is so elevated I turned the fridge OFF. I can hear the dog breathing,my insides hurt so bad ,etc,etc, it would be madness IF I did not understand "IT". Rick

I have changed again recently and managed to write down a little of what some of the more EXTREME levels of a brain and how some of us may "feel" I am sure others will understand ,while some may be totally freaked out by this 

peace R.C. 

Hi I have changed a lot it seems . I went through a long period of some of the most bizzare feelings I have ever encountered in my life a while back and managed to write down some of it . This was in response to a u-tube video of all thing lol.  Some people will understand this and others may be totally freaked out or even scared by it. but a few of the more extreme things a person may feel during a "postictal" state are said here . for what it's worth .

suddenly 2.a.m.? pain? confusion? broken? Medication SUCKS I'd rather be
an addict again.breathing color,feeling in reds and yellows,taste? in
silver like metal hearing ,blue gray,fading, I would like to SCREAM but
then? others will know,burning? cold?afraid to lay down ,haunting
dreams,can only smile with eyes closed,pushing,pulling, from the
inside,I am pizzing "IT" off,clear but numb,a fishbowl,sleep while
standing? HURT? NO, LIFE Rick Another day------

COLD,rush of warm,BLOOD ?,dam,quiet,choices? confusion? feeling?
grey,ringing in very low tones,911 in a blizzard? wait and find the cuts
,big mess ,broken tables,broken? will the others know I am "broken"
pain? LOL ,LIVING in short bursts,how many joints can you dislocate at
once? IT pushes me down WHY,WHEN,MAYBE FORGET THIS TIME? clicking sounds
dark,blue,green,feelings? flatlined?VERY small mind,closed,peeking out?
IT WON'T LEAVE RICK  another response....

Almost overwhelming for many we all just wait! can we see
IT,I live every day in redemption but when? why the wait? when I peek
over the side will? IT pull me IN or or will "IT" push me OVER? "IT'
hovers over moves around ,front and back, I smiled and waved "IT"
slammed me to the ground, My soul smiles my gate is frozen,I lost my
ticket, The more steps I take away from the gate the harder IT pushes me
back, REDEMPTION IS? FINE-WAITING IS HE..! Rick another....

To explain seems senseless, but was able to "feel" the
sounds the senses so ENHANCED that the waves? became focused confusion.
The edge is an odd place ? a date,time SURE, will say goodbye and check
in no sweat and lol at "IT" But the unknown is my demon now ? losing
time in lg. blocks is something we joke with UNTIL it happens.Is like
having a stroke but then recovering 100's of times."IT" pushing? me is
why I may be acting diff. "IT" is close lol no sweat ,BUT when ? Rick  And another.....

Not sure what brought me here I have managed to lol with
this for many yrs and am now have this over whelming feeling of being
stuck in the middle, life is a very fine wire to stroll on in a "normal"
world as it is ,but? now "IT" pushes me hard sometimes and it HURTS to
smile back ? have NEVER gave up or gave in to? anything ,ever ,but with
pain,confusion,memory loss the HURT has become reality ,my rambling
above was a persons response to seizures,sleepwalking ,sounds HURT Rick   

WOW That was last month lol makes a person wonder what this month will be like huh? Be careful .Rick


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