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Spy_on_the_Inside
09-16-2012, 02:30 PM
I'm working on a story where, due to a brain disorder, suffers frequent grand mal seizures. The only real problem is that I don't suffer from seizures myself and have never had one. As such, I know during a seizure, people lose consciousness, but I want to know what happens before then. I've heard that some people can feel a sense of dread or even feel the muscles go stiff or the air being squeezed from their lungs.

I want to get a human perspective on this though. Like I said, I know when people have a grand mal seizure, they lose consciousness and don't remember the seizure itself, but I want to know what people feel before that. The more details, no matter how minor, the better.

GeorgeK
09-16-2012, 02:46 PM
seizure prodrome is the term you want to google

Kerosene
09-16-2012, 02:58 PM
My father is a epileptic, or close to it. He takes the meds either way.

I've seen him have several, from start to end. It's also why I began studying psychology, I was interested in what was happening.


How about a story:

My father ran out of his meds. Bad idea. (Pharmacies will give out small amount to abide you over until you can fill your prescription, my father didn't want to do this)
2 days later, I stepped into the kitchen where my father was cleaning dishes. By no means did he say that he might have one of felt like he was going to.
He was standing there, staring into space. Not unusual, but odd.
I talked to him about something.
He started to look at me, like scanning towards me, but never met my eyes. He said, "what?" before his head turned and he crumbled to his knees.
Then hit the floor, shaking, quivering (there's probably youtube videos of this)
Knowing my father, I checked his pill bottle to see it was empty.
I was spiteful back then, so I watched him for 3 minutes as he rummaged around on the floor like a off-center washing machine.
Then he just fell silent, and stopped moving. (By then, I checked his pulse)
After a minute, he started moving around. He wanted to give the dogs more food, when they had a full bowl.
After five minutes, he was standing, walking into walls and almost tripping.
After ten minutes, he was acting normal.
I asked if he took his pills. "Yes," was his response.
I handed him the pill bottle, empty. "Oh, I guess I didn't," (He just responded with the stock 'yes')
I called up walmart (where he fills) and arranged to pick up the next fill.
We got in the truck and I drove him there.
At the counter, I forced him to take his pills and paid.
When we got back to the truck, he asked, "why are we here?"
I told him we were getting his prescription filled.
"I was out? When?"
I told him he had a seizure.
"No I didn't"
He did.
"No I didn't"
He did, and I let it go.
When he got home, I went about my business.
After an hour, I walk out into the living room.
"We need to get my prescription filled, I'm out of my meds."
I told him that he had a seizure.
"No I didn't"


that was a fun day.


Really, they come on pretty quick. It's the lasting, after affect that causes problems.
In my experience, it was quick and my father never felt anything before, but he felt it afterward.

Hope this helps.

anguswalker
09-16-2012, 03:39 PM
As a teacher and form tutor in North London I had identical twins in my form group, one with epilepsy. They were aged 13 when I started and the whole form group knew how to handle grand mal seizures a lot better than I did. What was interesting, and relevant to your query, was that the boy with epilepsy had no idea that he was about to have a seizure but his twin did. The epileptic twin's vagueness both before and after the seizures was just as WillSauger describes them, and his seizures were also at the grand end of grand mal.

In another school, where I was head, we had at least four diagnosed epileptic students at various times, though none had seizures as violent as those of the twin in my other school. They all had some, though variable, warning of seizures coming on but it was actually quite hard to get from any of them what it really felt like, because afterwards they couldn't remember. At the time they would just look a bit vacant (like a petit mal seizure) and complain of a variety of feelings that weren't 'right', though not usually in a coherently expressed way.

I suspect that over time sufferers learn to spot the signs and begin to be able to articulate how they feel better than any of the teenagers I have had to deal with. It would be interesting actually to hear from someone who does suffer from grand mal seizures, though I am sure that experiences differ widely between sufferers.

For the purposes of your book I think details may not be your friend in terms of getting across the experience from the PoV of the sufferer. The prevailing sense I got very strongly from the young sufferers I talked to was a lack of clarity about how it felt or how they knew a seizure was coming on. The predominant emotions were confusion, frustration, embarrassment and fear, precisely because they couldn't remember the details.

Spy_on_the_Inside
09-16-2012, 07:45 PM
This is all great information. Something else I wonder is just how far into a seizure does the sufferer retain counsciousness. Do they feel their muscles go stiff and start to shake, or have they already lost conscousness by that point? And the confusion mentioned before then, are they able to recognize something is off, or is that just the brain automatically responding?

Eldritch
09-17-2012, 05:19 AM
My 17-year-old son has had seizures. He can remember what he was doing before the seizures occurred, but he never remembers actually having them. Which is probably a good thing because grand mal seizures are very frightening to watch.

When he regains consciousness, he's very confused and zoned-out and has no idea what has just happened. He also tends to throw up right around that point.

jaksen
09-17-2012, 07:18 PM
My 19 year old son has Down Syndrome and autism. He is nonverbal, but attends school (and will until age 22.)

When he was 14 he started staring off into space and his eyelids would flicker. We did not know then that these were 'little seizures.' (We later learned that some individuals develop seizures in their mid to late teens, and for some with autism, this happens.)

After a year of 'little seizures,' he had his first, full-blown seizure in 2009. As my husband was helping Jeff into the bathtub, Jeff fell over and violently seized on the bathroom floor. Shaking his head, his entire body. Arms and legs flailing. Head going back and forth. Mouth frothing a little.

I was out of the house at the time; my husband called me home. When I arrived it looked like the entire fire and police depts were at my house. Two cruisers, a fire truck, fire chief's car. My son was taken to the hospital by ambulance and after many doctor's appts, referrals, etc. (we now take him to Children's Hospital in Boston) he was diagnosed with a seizure disorder and takes meds to control the seizures.

He has had other major seizures since then, so we have learned what to look for. Before a seizure (if we are with him), we notice a far-off look and an inability to respond to us. His eyelids flutter. He still sometimes has a 'little seizure,' but it is a precursor to a big one a few days later.

Having said all that, his last seizure was four months ago and we keep our fingers crossed that his new meds are helping. We have been told he might 'outgrow' the seizures, and his new doctors do not want to call what he has epilepsy. Rather, they simply refer to it as a 'seizure disorder.'

We also have an emergency medical kit, a syringe with meds, which we are to use only if the seizure doesn't abate after a minute. (Jeff's first seizure, the most violent, lasted almost two minutes. The little seizures are ten to twenty seconds. All the other seizures are around a minute in duration.) We have never had to use the medical kit.

After the seizure Jeff falls into a deep sleep; he snores, which he normally doesn't do. He can't tell us how he feels, or what he experiences prior to the seizure. How do we know he is having a seizure when we are not with him? We hear him in his room. He watches TV while sitting on the floor (his preference) so he sort of topples over. He has a cushy rug he sits on. But if he has had a 'little seizure' a few days prior, I keep an eye on him. I even take my laptop into his room or the hallway nearby and watch him.

He attends school and his aide is aware of his problem, as are the nurses and other staff. He has never had a seizure in school.

Orianna2000
09-18-2012, 12:46 AM
A friend of our family had epilepsy. Actually, two friends. One went into a mild seizure not long after my mother had foot surgery. She found herself reaching for my mom's foot. Of course, Mom recoiled, pulling her foot away, and a minute later, the woman blinked and came out of it. She said she knew what she was doing, but had no control over it. She was horrified, because she knew what she was doing would hurt Mom, but she couldn't make herself stop.

The other guy was a full-fledged epileptic and had some mental retardation because of having had so many major seizures. (Not sure if the brain damage was caused by the seizures themselves or from hitting his head so many times during the seizures.) Anyway, he stayed with us for awhile and (unbeknownst to us) decided to stop taking his meds while visiting. One night, at 1 or 2 am, he started wandering the house. He opened my bedroom door, turned on the light, stared into my room blankly, then left. He went around the house, opening every door he could find, and got angry when he found the front door locked. At one point, he urinated in the corner of his bedroom. Eventually, he collapsed into the full-blown seizure, with all the shaking and everything. The paramedics came and took him to the hospital, and that's how we learned he'd stopped taking his meds. He didn't remember anything about what had happened, and he was very upset that my parents had called the paramedics. I mean, he was openly hostile about the fact.

My little sister had tiny seizures when she was a toddler, where she would stop responding to stimuli and would stare blankly into space for several seconds. My mom hasn't mentioned anything about them lately, so I'm guessing she grew out of them.

Hope that helps!

MMcDonald64
09-18-2012, 09:09 PM
My grandmother had two brain surgeries in the late 70s for aneurysms and a year or so later, she started having these lapses in awareness. She never seized, she would just become confused. One time she was driving me to work at a local Burger King. I didn't have a license yet, and so when she suddenly didn't know where she was going or how to get to the BK that had been there for years, I was freaking out. I had to give her turn by turn directions, then make up an excuse for her to stay in the parking lot while I ran into work to call my mom. My brother ended up coming and giving her a ride home. After this happened several times, the doctor diagnosed her with complex partial seizures, I think. The only thing she remembered about them was a burnt smell just before they occurred. This was especially strange for her because the surgeries had destroyed her sense of smell--so that was the only time she 'smelled' anything. She was put on medication and didn't have anymore seizures.

mikewritesfic
09-18-2012, 11:12 PM
I just dealt with someone in the same house having a seizure over the weekend and I 'misdiagnosed' him. :( Here is what happened....I was up in Boston over the weekend staying with some close friends. Ron, who is their cousin, had the bedroom directly above me. So Sunday morning I wake up at 7 AM and am still in bed half asleep when I hear a porn movie coming from Ron's room. I thought nothing of it. Then I heard a loud groan which I assumed was Ron reaching gratification, followed by a loud thud on the floor. I assumed the thud was his cat running around the room.

Later on, I dressed, went to Starbucks for coffee and came home. When I got back, my friend told me that Ron 'thinks he had a seizure this morning.' That's when I put it all together and realized that what I had heard was not exactly what I thought I heard. I felt bad and still do. I thought Ron was watching porn (he was, as it turned out) and enjoying it immensely. He wasn't enjoying it.

Canotila
09-19-2012, 11:56 AM
From working with folks who have them, there's a huge variety of symptoms before and after and it really depends on the individual. Some of them have visual, auditory (ringing ears and things) or olfactory disturbances when an episode is coming. Some have these issues after it's over.

One thing that's consistent though is the total exhaustion afterward. Most of them would be burned out for the next day or two.

Lhipenwhe
09-19-2012, 05:12 PM
I have had one uncontrolled seizure as a result of medication, so take what I say with a grain of salt.

I had my seizure in high school. I'd been on my anti-depressants for awhile and hadn't noticed any side-effects from the medication. I was sitting at my computer doing some work one moment, and the next moment I was opening my eyes on the floor. When I tried to move, it felt like my body was full of lead, and my back hurt like hell from the seizure; I'd thrashed around on the floor a lot, and bent my back out of shape. It took me a while to come to from the disorientation and pain, and I had problems talking by the times the ambulance came.

The ride to the hospital wasn't too long, and by the time I got there I could speak just fine. The pain in my back gone into overdrive, though, and I wasn't able to move around much for the next few hours. Fortunately for me, I was discharged a few hours later once the medicine had been purged from my system. I was able to walk around and move later in the afternoon, but the pain stayed with me for the next few days.

I've had ECT, but that's pretty different from a 'normal' seizure. Also much more painful.

Anyways, hope this helped.

Quentin Nokov
09-19-2012, 06:25 PM
A character of mine has seizures so I've done quite a lot of research regarding the disorder. I found this video on YouTube about a year ago and found it rather helpful. The video is nearly 15 minutes long, but you can see first-hand how one behaves before a seizure, during, and after.

http://www.youtube.com/watch?v=DuMTx95Wps0

I found this online also. It's a list of symptoms commonly experienced by epileptics or those with seizure disorders.

Visual changes

* Bright lights and blobs
* Zigzag lines
* Distortions in the size or shape of objects
* Vibrating visual field
* Scintillating scotoma
o Shimmering, pulsating patches, often curved
o Tunnel vision
* Scotoma
o Blind or dark spots in the field of vision
o Curtain-like effect over one eye
o Slowly spreading spots
* Kaleidoscope effects on visual field
* Total temporary monocular (in one eye) blindness (in retinal migraine)
* Heightened sensitivity to light

Auditory changes

* Hearing voices or sounds that do not exist: true auditory hallucinations
* Modification of voices or sounds in the environment: buzzing, tremolo, amplitude modulation or other modulations
* Heightened sensitivity to hearing
* Someone speaking at a level and normal tone sounds like they are shouting loudly

Other sensations

* Strange smells (Phantosmia) or tastes (Gustatory hallucinations), or where food and drinks taste differently than usual
* Heightened sensitivity to smell
* Feelings of déjà vu or confusion
* Feelings of numbness or tingling on one side of the face or body
* Feeling separated from one's body
* Feeling as if the limbs are moving independently from the body
* Feeling as if one or multiple limbs are growing
* Feeling as if the mouth is too small for the teeth inside
* Feeling as if one has to eat or go to the bathroom
* Feeling as if one is going to vomit
* Anxiety or fear
* Weakness, unsteadiness
* Saliva collecting in the mouth
* Being unable to understand or comprehend spoken words during and after the aura
* Being unable to speak properly, such as slurred speech or gibberish, despite the brain grasping what the person is trying to verbalize (aphasia)
* Temporary amnesia, such as forgetting how to do tasks you have been doing for years


Early seizure symptoms (warnings)
Sensory/Thought:

Deja vu
Jamais vu
Smell
Sound
Taste
Visual loss or blurring
Racing thoughts
Stomach feelings
Strange feelings
Tingling feeling

Emotional:
Fear/Panic
Pleasant feeling

Physical:
Dizziness
Headache
Lightheadedness
Nausea
Numbness


Seizure symptoms (no warning)
Sensory/Thought:
Black out
Confusion
Deafness/Sounds
Electric Shock Feeling
Loss of consciousness
Smell
Spacing out
Out of body experience
Visual loss or blurring

Emotional:
Fear/Panic

Physical:
Chewing movements
Convulsion
Difficulty talking
Drooling
Eyelid fluttering
Eyes rolling up
Falling down
Foot stomping
Hand waving
Inability to move
Incontinence
Lip smacking
Making sounds
Shaking
Staring
Stiffening
Swallowing
Sweating
Teeth clenching/grinding
Tongue biting
Tremors
Twitching movements
Breathing difficulty
Heart racing

After-seizure symptoms (post-ictal)
Thought:
Memory loss
Writing difficulty

Emotional:
Confusion
Depression and sadness
Fear
Frustration
Shame/Embarrassment

Physical:
Bruising
Difficulty talking
Injuries
Sleeping
Exhaustion
Headache
Nausea
Pain
Thirst
Weakness
Urge to urinate/defecate



In my research, I visited Epilepsy forums and one person had said after a seizure--though they were right-handed--they continued to use their left hand in writing and other tasks. Someone had said before a seizure they felt like they were 'falling through the sky'. Definitely look through forums. Everyone experiences seizures differently because the injury or complication that causes them differs from person-to-person. The man in the YT video started having them after a brain hemorrhage, but then some people have them due to autism.



What time/setting is the story in because the superstitions of people from a couple hundred years ago is interesting. George Washington's daughter had epilepsy. (It wasn't really his daughter, but Martha's from a previous marriage) But their daughter was given a ring that they thought would cure her seizures, however, she died after a major fit. One thing I discovered too is the term 'epilepsy' and 'seizure' weren't commonly used by the public until--if I recall the 1800s, but don't quote me. The public called seizures 'fits' for a long while.

Some interesting reading: http://brain.oxfordjournals.org/content/125/2/441.full

boron
09-19-2012, 08:21 PM
how far into a seizure does the sufferer retain consciousness. Do they feel their muscles go stiff and start to shake, or have they already lost consciousness by that point? And the confusion mentioned before then, are they able to recognize something is off, or is that just the brain automatically responding?

Some epileptics reported they were aware (during an attack) what people around them were talking. Epileptics do not always lose consciousness during attacks, but you would need to ask some of them to get an idea what they can feel.

Bufty
09-19-2012, 08:51 PM
Whatever you do when covering this aspect in your story remember that epilepsy is a terrible affliction to have and is as scary and frightening to the family as it must be for those who through no fault of their own suffer from the associated seizures with (as far as I am aware) no guarantee of any cure. Possible control through drugs but no cure.

He's over them now, thank God, but I remember the first time I witnessed my son having a seizure. He was a teenager. It hurt dreadfully to be so close and to be able to do nothing except kneel and cradle him in my arms on the floor and assume he could hear me reassuring him that he was not alone. I never felt so helpless in my life.

To live with the thought that at any time you may have a few seconds warning to seek shelter or place yourself out of danger before you know you will collapse requires a courage I do not possess.

Do not treat this subject lightly in your book. Epilepsy can affect anyone - there are no pre-conditions and it's not hereditary.