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Does anyone here have knowledge of epileptic seizures?


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#1 Kodi R.

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Posted 26 May 2013 - 12:51 PM

Hi. I need some help. 

 

I have a character that goes through the equivalent of epileptic seizures. I didn't write from her POV for the first book, so it wasn't as hard for me to describe them from a stranger's POV. But in the next book I have to write from her head. I don't know how it feels to have a seizure, and I was wondering if anyone here knew anything.

 

If anyone could give me some help, I'd appreciate it. I understand that it might be triggering to talk about, so it's totally okay not to say anything. :)

 

Thanks!


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#2 Aightball

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Posted 26 May 2013 - 02:35 PM

I've been researching seizures for my books, so I can offer some of what I've learned. There is a user on here that has seizures, but I don't know if they want me putting their name out there =).

 

Basically, my research says that folks will have an aura before a seizure (for my MC, it's a nauseous stomach). Then, it seems as though they pass out and come to very quickly. Afterward, they may be sleepy or in a fog. My MC usually has to sleep for a couple of hours to "get right" again, if you will. I've never had what most people think of as a seizure, just little spacing off episodes or periods where I get super twitchy. I've never been diagnosed, just had a medical professional suggest I could be having a sort of partial seizure. 

 

The mayo clinic website is an excellent resource on seizures, if you get over there. The best one was called micro medex, but to my knowledge, that was only available where I used to work =(


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#3 CarlHackman

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Posted 26 May 2013 - 02:46 PM

I had one that broke my back... reason for medical discharge from Navy after 18 years.

 

All I felt was a strange taste in my mouth, slight dizzyness then a withdrawing as if the world was fading then nothing until I woke up with my head in a nurse's lap. Post seizure was in and out until next morning... seizure happened at about 8pm at night.  I did feel the pain in my back though for weeks afterwards even through high strength painkillers,



#4 Brighton

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Posted 26 May 2013 - 05:25 PM

Which kind of epileptic seizures does your character have, cause there are a few kinds and each one feels different to experience. Most fiction tends to go for grand mal since they are the most dramatic, but there's tonic clonic, atonic, myoclonic, and absence seizures too. If you need any info on what absence seizures are like I can help you out.
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#5 Kodi R.

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Posted 26 May 2013 - 05:50 PM

Which kind of epileptic seizures does your character have, cause there are a few kinds and each one feels different to experience. Most fiction tends to go for grand mal since they are the most dramatic, but there's tonic clonic, atonic, myoclonic, and absence seizures too. If you need any info on what absence seizures are like I can help you out.

 

 

She has clonic, I think. /googles to make sure

 

Yeah. She has clonic seizures.


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#6 HelenaCross

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Posted 26 May 2013 - 06:38 PM

Having been diagnosed with epilepsy about 5 or six years ago (created by a seizure point in the brain, from a stroke/brain injury at infancy), controlled with medication (Tegratol), epilepsy is always a concern of mine. I was actually diagnosed when I took a grand mal seizure in front of people. It happened very suddenly, the muscles spasming, and with me still conscious for at least a minute. And then, I woke up on the ground. In that minute, I remember trying to catch my breathing, but unable to. It felt as though I was gasping for air. I've had seizures that result in both unconsciousness (one time) and ones where I don't black out (happened 3 times).

For me, it often begins with numbness in the weaker side of the body (left side), but most prominently in the mouth/jaw and hand. If it spreads, up the left arm and the hand begins twitching, I have to sit down and try not to panic, try to control the breathing and wait for the aura and the symptoms to pass. If it does, then it's fine. If it doesn't then I'm in trouble--usually then I'll need to call 911 if I can.

 

Often what triggers the seizures (for me it is stress. Chemical imbalance in the brain) is what your character should avoid, in order to avoid these attacks. 



#7 Kodi R.

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Posted 26 May 2013 - 08:02 PM

Having been diagnosed with epilepsy about 5 or six years ago (created by a seizure point in the brain, from a stroke/brain injury at infancy), controlled with medication (Tegratol), epilepsy is always a concern of mine. I was actually diagnosed when I took a grand mal seizure in front of people. It happened very suddenly, the muscles spasming, and with me still conscious for at least a minute. And then, I woke up on the ground. In that minute, I remember trying to catch my breathing, but unable to. It felt as though I was gasping for air. I've had seizures that result in both unconsciousness (one time) and ones where I don't black out (happened 3 times).

For me, it often begins with numbness in the weaker side of the body (left side), but most prominently in the mouth/jaw and hand. If it spreads, up the left arm and the hand begins twitching, I have to sit down and try not to panic, try to control the breathing and wait for the aura and the symptoms to pass. If it does, then it's fine. If it doesn't then I'm in trouble--usually then I'll need to call 911 if I can.

 

Often what triggers the seizures (for me it is stress. Chemical imbalance in the brain) is

what your character should avoid, in order to avoid these attacks. 

 

Thank you for sharing. :)


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#8 Aightball

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Posted 26 May 2013 - 09:55 PM

Having been diagnosed with epilepsy about 5 or six years ago (created by a seizure point in the brain, from a stroke/brain injury at infancy), controlled with medication (Tegratol), epilepsy is always a concern of mine. I was actually diagnosed when I took a grand mal seizure in front of people. It happened very suddenly, the muscles spasming, and with me still conscious for at least a minute. And then, I woke up on the ground. In that minute, I remember trying to catch my breathing, but unable to. It felt as though I was gasping for air. I've had seizures that result in both unconsciousness (one time) and ones where I don't black out (happened 3 times).

For me, it often begins with numbness in the weaker side of the body (left side), but most prominently in the mouth/jaw and hand. If it spreads, up the left arm and the hand begins twitching, I have to sit down and try not to panic, try to control the breathing and wait for the aura and the symptoms to pass. If it does, then it's fine. If it doesn't then I'm in trouble--usually then I'll need to call 911 if I can.

 

Often what triggers the seizures (for me it is stress. Chemical imbalance in the brain) is what your character should avoid, in order to avoid these attacks. 

 

I have a question, too, after reading your experience: my MC *always* blacks out during his seizures (he has grand mal, tonic/clonic, and partial complex seizures from a traumatic brain injury)...and my research said (and here's where I want to know if my research is wrong) that if the seizure is short and the patient wakes up afterward, no need to call 911. But if the seizure is longer than five minutes or they don't wake up, etc., then call 911...does this vary from patient to patient? My MC is on Topomax (a fairly high dose, since he's got a list of triggers and loses his control from time to time) but when he has seizures, they're still pretty major, even the short ones. But no one calls an ambulance unless the seizure is long, he doesn't wake up between seizures or he hurts himself somehow. Am I interpreting my research correctly?


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#9 HelenaCross

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Posted 27 May 2013 - 07:59 PM

I have a question, too, after reading your experience: my MC *always* blacks out during his seizures (he has grand mal, tonic/clonic, and partial complex seizures from a traumatic brain injury)...and my research said (and here's where I want to know if my research is wrong) that if the seizure is short and the patient wakes up afterward, no need to call 911. But if the seizure is longer than five minutes or they don't wake up, etc., then call 911...does this vary from patient to patient? My MC is on Topomax (a fairly high dose, since he's got a list of triggers and loses his control from time to time) but when he has seizures, they're still pretty major, even the short ones. But no one calls an ambulance unless the seizure is long, he doesn't wake up between seizures or he hurts himself somehow. Am I interpreting my research correctly?

 

 

If the seizure lasts longer then 3 minutes or he takes another seizure right after, then yes medical intervention is needed. If they black out, medical intervention is needed regardless if they wake up shortly after (again, less then 3 mins.). Unconsciousness is a serious thing and people need to make sure the person does wake up or is safe until further help can come. People CAN die from seizures, especially grand mal, because this disrupts all functions for however long the attack lasts, INCLUDING the ability to breathe.

 

In my experience, personally, I was only out for a short time but paramedics came anyway incase I took another seizure or I needed to be hospitalized ASAP. If people are unconscious  for 6 minutes without some sort of CPR or other intervention, brain damage will occur from lack of oxygen.

Does this answer the question? 



#10 Aightball

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Posted 27 May 2013 - 09:08 PM

If the seizure lasts longer then 3 minutes or he takes another seizure right after, then yes medical intervention is needed. If they black out, medical intervention is needed regardless if they wake up shortly after (again, less then 3 mins.). Unconsciousness is a serious thing and people need to make sure the person does wake up or is safe until further help can come. People CAN die from seizures, especially grand mal, because this disrupts all functions for however long the attack lasts, INCLUDING the ability to breathe.

 

In my experience, personally, I was only out for a short time but paramedics came anyway incase I took another seizure or I needed to be hospitalized ASAP. If people are unconscious  for 6 minutes without some sort of CPR or other intervention, brain damage will occur from lack of oxygen.

Does this answer the question? 

It does! He's has the medics called on him before (in the beginning) and during very long seizures, but never during short ones. Is it "normal", then to be awake during a seizure? If so...what can that be like? I know everyone is different, but this way I have something to go off for revisions down the road.


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#11 HelenaCross

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Posted 27 May 2013 - 09:44 PM

I was concious during one. So it can be normal depending on the severity of the attack, I think. Still. Very scary. Can't catch your breath, the limbs jerk, the vision is blurry to the point of the world seeming to tip, and you can't speak or call for help. Also you almost choke on the saliva in your mouth if you don't let it out. You can't swallow it, so if you drool...it's better then choking on it.

#12 HelenaCross

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Posted 27 May 2013 - 09:47 PM

During all this, you're awake. You can feel it coming on and happening and you have to wait it out.

#13 Aightball

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Posted 28 May 2013 - 06:36 AM

Scary...but gives me important information for my character for sure. I will put this into my files for editing down the road. Thank you!


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screwed up the recipe for me: I'm made of
bat wings and broken things.

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#14 Silver Elm

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Posted 02 June 2013 - 10:45 PM

During all this, you're awake. You can feel it coming on and happening and you have to wait it out.

 

My aunt is epileptic, although I'm not sure what kind of seizures she's experienced.

 

She can tell when one is coming on, and she'll go lay down in bed before it happens.

 

She had been seizure-free for about 15 years, but then she had a baby, and after that her seizures started up again, only this time with hallucinations involved as well. I don't know if hallucinations are related to the epilepsy, or if that is something else entirely, but it's something to consider that major life events (such as having a baby) can have strange effects on people and characters.



#15 thrownbones

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Posted 03 June 2013 - 01:48 PM

I've had about four seizures, over the last year (last one was back on December 26th). Had two in one morning, where I woke up in the ambulance and went to emergency, went home and fell back asleep and work up back in the ambulance a couple hours later. Mine were brought on (most probably, as this is "late onset") by dehidration (extreme and for a long time running). I was totally unconscious for each one. My wife says I gave out some sort of primal groan and my right arm went stiffly out from my side and I flipped over onto my back, convulsing. As I got my meds balanced out they got less severe. I read that in my situation I may not have needed to go to emergency, as you CAN come out of the type I had (which I think were tonic/clonic, but I can't remember), but if they go on for longer than 14 minutes you run the risk of a stroke.

 

I'm on Lemictal, 300mg a day. It's basically a salt, and they also give it to Manic Depressives. If I feel any sort of precursor (weird smells like burning cookies, or open sewer... vertigo while I'm dreaming... panic attacks that wake me up... ) I have Atavan, which I'm supposed to take to "tamp down" the precursors.

 

I know that 6 months, 1 year, and 2 years are benchmarks for people (at least that's what my neurologist told me) that as they pass them the odds of having them decrease.

 

Hope some of this helps. It's a drag, that's for fucking sure, and it's fried my memory boards. My short to mid term memory is shit now, and it didn't use to be.


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#16 Kodi R.

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Posted 03 June 2013 - 04:17 PM

I've had about four seizures, over the last year (last one was back on December 26th). Had two in one morning, where I woke up in the ambulance and went to emergency, went home and fell back asleep and work up back in the ambulance a couple hours later. Mine were brought on (most probably, as this is "late onset") by dehidration (extreme and for a long time running). I was totally unconscious for each one. My wife says I gave out some sort of primal groan and my right arm went stiffly out from my side and I flipped over onto my back, convulsing. As I got my meds balanced out they got less severe. I read that in my situation I may not have needed to go to emergency, as you CAN come out of the type I had (which I think were tonic/clonic, but I can't remember), but if they go on for longer than 14 minutes you run the risk of a stroke.

 

I'm on Lemictal, 300mg a day. It's basically a salt, and they also give it to Manic Depressives. If I feel any sort of precursor (weird smells like burning cookies, or open sewer... vertigo while I'm dreaming... panic attacks that wake me up... ) I have Atavan, which I'm supposed to take to "tamp down" the precursors.

 

I know that 6 months, 1 year, and 2 years are benchmarks for people (at least that's what my neurologist told me) that as they pass them the odds of having them decrease.

 

Hope some of this helps. It's a drag, that's for fucking sure, and it's fried my memory boards. My short to mid term memory is shit now, and it didn't use to be.

 

 

Thank you, throwbones!
 

(I used to be on Lemictal, actually. Huh.)


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#17 Tom Preece

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Posted 04 June 2013 - 01:17 AM

Guys I truly appreciate you're being able to share such raw stuff.  I'm going to give you something pretty sentimental which still can sometimes move me to tears.

 

I'm a dog guy.  I had dogs at home from the time I was  young tyke.  A Labrador retriever/shepard/irish setter mix, probably the doggy love of my life named Travis brought me home safe from combat after Vietnam and I've had a couple of fine one since.  The present guy is Caleb, a lab border collie mix who is smart enough to get into trouble, but deeply loyal and affectionate.

 

One of my deepest experiences of dog/human interaction happened when I was taking care of my friend Jean's dog Leakey.

 

Jean had adopted Leakey as a starving shepard mix pup on the Navajo Reservation when she was teaching school there.  She named him Leakey because at first he had no bowel or bladder control.  She told people instead that he was named for the Archeologist because he liked to dig up bones.

 

From a pretty early age, Leakey had seizure disorder and was on medication for control. 

 

I knew about that and of course while he was in my care I administered the medication.  One night without warning in kitchen, Leakey had a seizure.  He couldn't stand.  His legs were going every which way, but his eyes locked on me.  His legs though seeming to go in every direction clawed his body in my direction.

 

I knew he wanted me for comfort, for direction, and maybe the way we want God when there's chaos.  I went down on my knees and hugged him until it passed and that was one of the most profound experiences of my life.

 

He trusted me ultimately as few of us can trust one another.  I will always be grateful.  He was happy afterwards.  Went to the vet for a change of meds.  I did not see him in a seizure again, but we were always the very best of friends.

 

Now go on story tellers.  You have my full permission to use this any way you can.  I know I will.

 

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#18 mwsinclair

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Posted 04 June 2013 - 09:29 AM

Tom, very moving. Thanks for sharing.



#19 thrownbones

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Posted 06 June 2013 - 12:58 PM

Tom, that brought tears to my eyes. Gotta care for the animals, man.


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#20 Tom Preece

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Posted 06 June 2013 - 01:03 PM

Thanks guys.  I agree, Bones.  If you won't care for your fellow animals, they won't care for you!






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