What's your postictal state like?

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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.

Lina

Comments

Re: What's your postictal state like?

Submitted by just_joe on Fri, 2013-07-26 - 15:23

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

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

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?

Submitted by Allina on Fri, 2013-07-26 - 15:31

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 :)

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?

Submitted by just_joe on Fri, 2013-07-26 - 21:01

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 ??

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 ??

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 ??

What's your postictal state like?

Comments

Re: What's your postictal state like?

Submitted by just_joe on Fri, 2013-07-26 - 15:23

Re: What's your postictal state like?

Submitted by Allina on Fri, 2013-07-26 - 15:31

Re: What's your postictal state like?

Submitted by just_joe on Fri, 2013-07-26 - 21:01

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