What's your postictal state like?

Hi everyone!

A few years ago, I was diagnosed with epilepsy--complex partial seizures. To cope, I wrote a novel about someone who suffers fom epilepsy. Now, I'm trying to revise said novel, and I need some help. My character has grand mal (tonic-clonic) seizures from time to time, and I want to make sure I got his postictal state just right. I want this to be realistic because I would like to get it published one day. After all, how can we spread awareness if we don't spread the truth?

I have postictal states that consist of a small bit of confusion, nausea, and a headache. However, those are after seizures that are only about ten seconds long. I would like to know what YOUR postictal state is like. If you have grand mals, are you able to function afterward? Are you sleepy? Do you have to take a nap or are you able to continue about your day? Do you know what happened as soon as you wake up? Do any of you need assistance after a grand mal? These are the questions I would like to have answered.

Thanks so much for all of your help! Take care of yourselves. 



Re: What's your postictal state like?

Hi Allina

I can give you some information on grand mal seizures because I have had them. That is one type of seizures I was diagnosed with. It is convulsive seizure and they are not fun. I was at school when I had my first one. I remember being on the basketball court and it was before classes started. The next thing I know I was being carried into the nurses office by 4 football palyers. The 2 coaches were with them. I woke up later that afternoon. Yes they are tiring.the loss of conciousness is what happens in grand mal so from the time it started until it is finished I had no idea what I did. I was told that I had pulled my arms inside my jacket, climbed up ontop of 2 benches stacked on each other , I stood on top of them pulled the jack over my head then I fell face first onto the asphalt. Glad I had the jacket over my head. So some things that happen are not generally known to people with grand mall seizures.

I also have focal motor seizures,which today fall under complex partial seizures but they can move into other seizures. Mine back then could lok like a grand mal however I could see hear and understand everything going on around me.

What most people do not understand is in those seizures your muscles are jerking with all the strength they have. A 13 yr old boy who ways 80 lbs is what  Iwas. My step father did something he never did again when I was in one of those seizures, He tried to hold me down instead of moving the coffe table. Before he had a hold on me I had him by the arm and I threw him across my body. Back in 1963 kids 13 did not generally pick up 235 lbs man and throw throw them anywhere

I understand what you are tryiing to do and I like your idea. At 13 I was having seizures and my doctor could not find any reasons. I had many EEG.s and they all showed no seizure activity. I had palned to have funduring spring break but I didn't have any. During that week I was in a hospital abut 50 miles away from home.Mom came to visit twice. Hey back then 50 miles was a long distance. They are running all kinds of tests and all the tests were tiring. The last test was another EEG. I fell asleep during that EEG and that is the one that showed seizure activity. Using that EEG they then went to the angeogram and found what they were looking for. I had srac tissue from a blow to the head, The scar tissue is in more than 1 lobe. The doctors always talked to my mther and would not answer my questions. The next week in school we had to write a essay. I couldn;t think of what I wanted to write mine on but I did want to la=earn about epilepsy since I had it and we were told the types I had. So I wrote mine on "What is epilepsy". I got an A/B which was great since all my other things were generally C's. I also ended up reading to my class and all of the english teachers classes. She told the teachers about it and I sended up showing it to my science teacher who made me read it to all of his classes. You know schools have assemblies. You guessed it I had to read it to the whole student body. I was a memberr of the AV crew so I knew the vice princalbe well and I handed him the essay and told him he could give it anytime he wanted to and that I was tired of reading it especially since I knew it by heart. That essay was still being given the the student body 6 years later. what I was that the information in the essay was pertanant to what people need to know. What is epilepsy, different types of epilepsy, things to look for, things that can and should be done when you see someone in a seizure. So while I was mainly gathering about what I was going thru it had important information that people around me needed to know because I wasn't the only epileptic in the school.

I will be happy to assist you with further information and I do know that these thngs do need t get out into the masses.

Good luck

Re: What's your postictal state like?

Thanks for your thoughtful response! I'm glad they finally found something on the EEG. On my first EEG I had 2 (or 3) seizures and on the second one it was just abnormal. Then I had a VEEG, and they found NOTHING! It was annoying, and made me look like I was making it all up. It was a good thing I had the previous two EEGs to show what had happened.

I've seen a grand mal seizure, and you are so right about the strength in jerking. My seizures are complex partial, and I just stare around for about ten seconds, nothing too intense. 

Thanks again for responding :)

Re: What's your postictal state like?

Well I hope I helped some.

They have come up with different names than they used back in 1963. Your complex partial could and would have fallen under pettit mal.

I keep seeing people saying they have auras before the seizure. They need to understand that the aura is a seizure in itself or it used to be.

I have auras which could be absence seizure. patrial seizures which can go into comples partial which if they go farther they as generalized.

I have used most of the meds that people are or have been using. The meds today are better that the ones used back in the 60's and 70's.

I have been with the same office of neurologists since 1970. So I have known how they work and how this office operates.I was out of state for a few years and when I came back my old neuro took me back then explained he had moved to a different specialty which is was not epilepsy so he imtroduced me to my new neuro who after a few years and trials of ned meds reitred and introduced me to my neurowhich I have had for a long time now. I have always felt at ease becasue they have always talked with me and explained what they wanted to do and why along with their reasoning for their decission.  I was put on a new medication the start of last month. My seizure count had gone up and staied higher than I thought was normal so I explained that I thought it might have been the generic keppra since it was a new generic to me. He excuessed himself becasue he wanted to check somethig. When he came back he said he didn't think it was the generic. His explanation was a good one.His explanation was I had been in a drug study in his office for about 18 months. The drug I was taking was to be used on partial seizures. That the stages of the stages of the study differ in a few ways. Syage one you may be taking the drug or you may be taking a placebo. The second and third stage of this study you were taking the drug.  In your diary you noted your seizures and we counted the number of seizures. Your seizure count went dowm because you were using the new medication. He then gave me a set of medications to start on and a script for the med. It took me 1 month to ease onto the additional medication. I am now taking the new med along with keppra and my seizure count is going down to what it was in the studies.

I needed a diary to use so I could not the side effects and the seizures I have  and the one I am using is right up there ^^^^^^^^^. It can be sent to him or I can download and print it and take it to him.

Good luck with your novel

next time why not write a biograbhy ??

Re: What's your postictal state like?

Haha, I suppose I'm more of a fiction gal.

I was told once that you can think of a complex partial like an absence seizure (petit mal) for adults. I suppose once you pass 18 and you are still having petit mal, they turn to complex partials. 

I get auras too. Sometimes I get a really crazy deja vu, other times it's just a "feeling" like I will just "know" it's going to happen. Pretty interesting stuff!

Thanks for all of your help! :)

Re: What's your postictal state like?

fiction is good    I like good fiction

petit mals can be auras or deja vu they are kinda like a space in time. I have had those most of my life and my complex partial are more like focal motor that don't go into the convulsion which I have had since day one. The complex partials I have start in my hand and it won't do what I want I have no control. Now back in the 1960's those were there but if my are went up to shoulder level I went into a convulsion which once it started would go to m complete body and they looked like grand mal but in those I could see, hear, and knew what was going on around me.

 I have more of your I just konw seizures. They last split seconds to a few but I focus really fast and many people would not know I had one if I was even talking to them. I worked in a call center and I have had those while ttalking to someone of the phone.  The ones I watch the most are the ones that effect my hand because those are the ones that can go into a full blown convulaion

Believe me they aren't fun. Especially when your young and you hear one of your friend say "EWWWW I  don't wanna be around him anymore"

Everytime I saw Jake coming my way I went another and I did that for a few days. Then he spun me around becasue he came up behind me. His questions was "Why are you avoiding me" My answer was "You are the person that doesn't want to be around me" He asked where I had gotten that" I told him I heard it when I was in the seizure. He stated he didn't mean it. I told him he did when he said it. I explained that epilepsy is a handicap that can't be seen and memntiond several people that were handicaped that he knew ans was friends with and told him the only difference was you could see their glasses,wheel chair hearing aid. We talked several times with him asking questions and I answered them the best I could. I then had the freind and kinda protector. He would clear people away tell one to get the nurse and was a great friend.

Re: What's your postictal state like?

I'll be happy to describe mine.  I have grand mal seizures, and after one, I would be unconscious so that someone witnessing the seizure has difficulty waking me up.  I would be out like this for several minutes, and appearing to be dying because I won't respond.  I may be confused at first when I wake up.  I recover quickly.  I just had a seizure a few days ago, witnessed by my sister.  My first seizure was in April 2008 at the age of 29, and they couldn't find a cause for it.  I have been on medication for seizures.

Re: What's your postictal state like?

Thank you so much for responding! That makes a lot of sense to me. I've seen a few postictal states on youtube, and they are kind of like how you describe. All of this will be so helpful for this book. 

I hope you feel better soon. Hopefully they find a better med combination for you. Breakthrough seizures are no fun.

Re: What's your postictal state like?

Hello. I would like to tell you how my postictal state is like after I have a seizure. I have grand mal seizures that only happen in my sleep. I have 1 maybe 2 seizures a month. Sometimes I go several months without a seizure and then the next month I may have 2 seizures in one day or 2 seizures over 2 days. Right now I take no medication for my seizures. I have no health insurance and I am currently unemployed, looking for work. But if I had a choice, I would rather not take any med for my seizures. A couple years ago I was taking Dilantin, then it was switched to Phenytoin, then I was put on Tegretol. All three of those seizures meds were not good for me. Dilantin made my stomach very nauseated and I was throwing up all the time 5-10 times a month. Phenytoin was the same, made me sick with stomach nausea and made me throw up constantly. Tegretol was worse, made me have uncontrollable anger and rage. So I got off that med and went back on Phenytoin. After taking the med for a year I started to lose my memory. So I weaned myself off the meds myself and now I take no meds for my seizures. But I would rather be med free and not take anything for my seizures. I have been without meds for about 2 years now and dealing with the seizures as I get them and I am glad I am not taking any meds. All seizure meds are not good. Even though they stop seizures, the side effects are just too much. Personality problems, memory loss, bone loss, kidney and liver problems, etc., etc. etc. 

After I have my seizures and wake up, I am confused. I know something happened but I just don't know what it was, then it comes to me that I had a seizure.  My legs are sore, the right side of my tongue is bitten and sore, I have a bad headache, and extreme nausea. I have peed my pants and I am very tired. If I had a job and had a seizure on the day I had to work, I would have to go to work that day. I would be sore and tired all day then come home and go to bed early. If I had nothing to do the day I had a seizure, I would rest all day and lay on the couch and take a nap. 

I very rarely tell people outside of my family I have seizures because they don't understand and don't know what I go through every day. Even though I have seizures once a month, I still suffer from seizure side effects almost every day. I have stomach nausea almost every day and throw up quite frequently. I have auras for about a week after I have a seizure. I have headaches quite frequently also. I have trouble sleeping and am tired alomst every day when I wake up.

Well I hope this helped you. Take care.


Re: What's your postictal state like?

Hi Lina,

I have had seizures since I was 12 years old. I have different types, but I'll talk about the Grand Mal now. They vary in strength and time, if it comes in my sleep usually I won't know untill the next morning, waking up with the  bad headaches, bad chewing wounds in my mouth (I have scars along both sides inside), very tight and sore jaw, body is sore, as if I was exercising all night. It is often hard to breathe, too. Then I'll have to hang about trying to sleep or relax if it was a big one. Often my partner says I was shaking in the night and I wouldn't have known though.

With waking seizures, I'll usually have a banged and scratched up head and face, hands, depending where I have fallen. So all the same physically and mentally is there plus some injuries, and this is what sometimes snaps me out of whatever state it was. Sometimes it is what I can see or hear, or even smell, and when I know it, like the sofa leg near my face for instance, or music, or food it can be comforting.

But this all happens within seconds of beginning to come to, it's odd, all the info comes very quickly, but then I am usually to find out later that I was away for anywhere from 15mins to hours and hours, even days once, before waking. If I am coming to properly very soon then I feel very scared and upset and emotional. A weird feeling that is not confusion when I know whats going on, as I've had so many, but I am certainly not right in my head, and can't remember some things, and some words, and that makes me more angry, too.

Sometimes apparently I have spoken to people after 'waking' and before sleeping again. I don't remember it but my partner tells stories of me talking nonsense, even speaking in some kind of language I seemed to understand myself, but nobody else could recognise anything! Then there's the wandering. I'm told I walk around very determined to, more than once, leave the house or do something else that is a bad idea, and I get angry when he won't let me. It's scary.

The parts I do remember go like this. When I wake up I usually need to take stock, where, who, when, etc. I remember in the hospital once looking at my parents, knowing I should know who they were, but I didn't, and turned to the nurse, I said "Who the f*** are these people?"!

I know waking up on the couch/ground/ambulance/surrounded by people etc and being so confused I can't even speak or know where is up, other times there is a feeling that is the most horrible thing to describe, like it's is happening and I can't do anything, or talk to my mother, so helpless, makes me cry.

I know waking up upstairs, in the chemist, in the big shopping centre nearby, talking to the people, saying "I need my purple pills", so I could remember that, and my mother's mobile number, but not my name or how I got there! In my pyjamas. With really bad ones, sometimes after a seizure it morphs into some other kind, which is the wandering stuff. Apparently I get full of energy. Sometimes there are particular food cravings as well. Strangely, Mcnuggets often make an appearance then. Nothing else.

I know waking up in a different country! I got on the plane here, had 8 seizures on the landing, woke up in my cousin's (who I had never met before) bed 3 days later, and seeing snow at the window. There is no snow where I come from. But I was calm, because I knew exactly what must have happened and somebody would tell me about it.  So if I sleep then I can miss the whole post-ictal thing thinking, sort of. So there's a bit on how  some things go here, hope something helps.