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thethinker42
01-11-2015, 10:03 AM
I'm working on a character with epilepsy, and I'm trying to learn as much as I can about the condition. (Obviously it's not his Single Defining Traittm, it's just the one I don't know much about.)

At this point, I'm curious about people's individual experiences, and I have... a bunch of questions. I'll list them all here, but of course no one's obligated to answer every single one (or any of them, for that matter). Any information y'all can provide would be fabulous. I'm researching epilepsy in the meantime, but I've found that people's individual experiences/anecdotes can sometimes be even more valuable (for fiction) than medical journals, etc. Hence...this post.

1. What is an emergency room visit like after a seizure? Obviously experiences will vary depending on the type and severity of the seizure and/or injuries, but tell me about some of your experiences. What tests were run? How did you feel? How long were you there? Basically, anything relating to seizures + emergency rooms. (ETA: obviously not all seizures result in ER visits)

2. How has epilepsy affected various aspects of your life, such as jobs, relationships, etc?

3. What do you feel before and after a seizure? If you have different types of seizures, do they feel different before/after? (And if you have "auras", how would you describe those?)

4. What has frustrated you with regard to your epilepsy treatments? (i.e, difficulty getting tests/treatments, side effects, diagnoses, etc)

5. Have you ever used a service animal? What type (and if a dog, what breed)? Was the animal helpful? How did the animal behave to let you know there was an impending seizure? Did the animal help in any other way? If you needed to go to the hospital at some point, did the animal stay with you? If you had to have emergency surgery or a CT scan or something, who took care of the animal?

6. What (if anything specific) triggers your seizures? Does it always trigger you? (i.e., exposure to X stimulus = 100% chance of a seizure?) How does it feel from the time you're exposed to the trigger until you have the seizure? How long does it take?

7. What injuries have you had as a result of seizures?

8. What modifications have you had to make to your daily life due to your epilepsy?

9. Tell me something about epilepsy -- in general, or your specific case -- that I almost certainly don't know.

10. When (and if applicable, how) did you develop epilepsy?

11. How do people usually respond when they find out about your epilepsy? (friends, relatives, potential partners, co-workers, etc)

12. If you developed epilepsy later in life, what was the most surprising/unexpected thing about it?

13. If you've had MRIs, what information have your doctors found as a result? Ditto with CT scans, but please specify if it was an MRI or a CT scan.

14. Is there anything you wish people knew about epilepsy? Are there any misconceptions you wish would go away?

Thank you in advance!

Lillith1991
01-11-2015, 06:04 PM
I'm not sure how much I'm going to be able to help you, since epilepsy is different for everyone. But I will point out one really important thing, and that is that I haven't been in the emergency room more than a couple times for seizure related things. I've had epilepsy all my life, and unless it results in amnesia or moderate to serious injury, theres never been a reason for me to go to the ER for them. From what I know, my experience is fairly common. We're use to the seizures so we don't go running to the doc every time a bad one hits.

A scenario that would send someone running to the doctor is a first seizure or one that messes with memory in a scarey way for an extended period of time. Things that are extremely abnormal in other words. Keep in mind also that there's different kinds of seizures, and full generalized tonic clonic/grand mal seizures aren't the only kind.

thethinker42
01-11-2015, 08:36 PM
Oh yes, absolutely. :) that's why I mentioned that obviously things will vary based on type/severity of the seizure. In the questions regarding the ER, I didn't mean to imply "seizure = ER trip", but rather "if you've gone to the ER after one..."

Sorry that wasn't clear. :)

thothguard51
01-11-2015, 09:49 PM
My experience is the same as Lillith1991. Once you have been diagnosed with Ep, you learn to deal with it.

I have had seizures while out in public and had people call 911. As a child, I had no choice and the EMT's took me to the hospital. As an adult, I declined to be taken to the hospital. Most of my seizures were over in several minutes, enough time to come to before the EMT's arrived. Of course, the rest of the day was shot for me as I was pretty nauseous.

Now, if an Ep injures their self during a seizure, IE, head banging on hard surface, they may need to go to hospital to make sure they have no head fractures.

Most of the time though, I knew when I was going to blackout before I did and I got myself into a sitting position, or laying down even, to prevent me from falling down. I also learned to sort of control the panic I was feeling by deep breathing and telling myself that I was not going to black out.

To date, my last episode was over 20 years ago...


As far as service dogs, I have never needed one but I do know there are dogs trained that can sense a seizure coming on before it hits. I have only read about them in use with very young patients who have severe Ep. They are not cheap...

Ravioli
01-11-2015, 09:54 PM
I am told I had a real bad case of it as a child, but me, I don't know, I was always out when it came along LOL No, actually, it wasn't funny at all. Here are some answers:

1. Don't remember, but I do know that not all seizures ended in the ER, sometimes I was just left to twitch it out then and there as long as I was removed from anything I could injure myself on.

2. Oh, that one. The seizures weren't the problem, the meds were. They made me addicted to eat; I couldn't stay calm unless I ate. I got fat. I got bullied for being fat. Ate more to feel better. Vicious cycle. Also, my moodswings on those pills were so bad that I either fell asleep during class, or got so (easily) angry I threw desks. I got kicked out of one school to the next until I ended up at a school for legitimately handicapped people whose greatest challenge it was to color a flag halfway decently. My performance had been poor due to concentration and mood issues brought on by the meds, and that was the only environment where that was okay. However, my brain, a whopping 137 IQ points worth, threatened to wither there, so my kiddie shrink fought to get me out of there.
But it left me with many problems. One was a conviction of being stupid because I was too unfocused, either sleeping or raging, for math, the other was a general paralyzing habit to perform poorly.
The other was a now deeply rooted eating disorder, and you know how being the fattest kid in town goes for girls - awful. Which also left me scarred and unable to actually LIVE for many years.
From age 10, I am seizure-free, but just as my shrink had predicted, one of the pills whose name I forgot would destroy my life.

Also, the meds obscured a lot of other problems too easily blamed on pills and seizures. Like ADHD and OCD I found out only much later I had. Treated earlier, I may not have come to believe that I can't perform, and may not have lost many study opportunities. Only recently, stuffing my face with Ritalin for an SAT, did I realize I could have become so much more had this been paid attention to sooner instead of dismissing it as my epi meds acting up.

3. Don't recall.

4. See point 2. The seizures weren't the problem; hitting my head or peeing my pants was way better than that.

5. I wish.

6. No idea, but I vaguely remember a caretaker at a daycare making me black coffee and next thing I knew I hat the EMTs towering above me. My mom also fretted over alcohol, lack of sleep, or flashing images. I get wasted just fine these days. At music festivals. At 3 am.

7. Don't remember but I do remember my mother desperately holding on to my feet like a clairvoyant at a fair had once predicted before I was born, because otherwise I might "leave" her.

8. To bed at 8, no alcohol not even for a deterrent taste, and always someone had to supervise my meds. Not that dramatic. Oh, but schools didn't really want to touch me with a ten foot pole. Too much liability.

9. The seizures are more fun than the side effects of the meds.

10. Around 5 years old I think. Some blamed my mother for her lifestyle of moving every couple of years and preventing me from settling and adjusting but that's a load of crap.

11. Don't remember; nowadays when I tell them they're respectfully surprised because I'm all "clean and sober" now.

12. N/A

13. Wish I remembered. I remember lots of EEGs and wires and hospitals though.

14. Choose your meds very carefully; in my case the sickness itself was the lesser of two evils. You recover from hitting your head or peeing your pants, you don't recover that quickly from fake learning disabilities that make you go for easy, useless studies because you think you're too dumb for something awesome, eating disorders that leave you obese forever, and misshapen social behaviors all caused by meds that mess your head up.

I think that "evil pill" which a psychic my mom visited for laughs, guessed the name of and said it destroyed her kid's life, was Tegretol. I'll ask my mom for some things I couldn't answer, hope it helps :)

Holy crap, trying to find some more info for you I just found out I'm taking Tegretol for my manic depression. See, you can get so much smarter when trying to help someone else out :)

thethinker42
01-11-2015, 10:26 PM
Thanks, all! (And yes, definitely everyone's experience is different. This is exactly why I'm asking so many people for their experiences -- the more I know about how different people are affected, the better I can shape my character's experience without sounding like I read a wiki article and called it a day.)

Evelyn
01-12-2015, 08:56 AM
Hi Lori,

Would you like an experience with being diagnosed?

My husband very recently spent two days in the NW regional Epilepsy Clinic at Harborview hospital in Seattle. He was sent there by his neurologist to see if he had epilepsy, and if so, what kind it was.

He had a private room. There were several other people (adults) in the unit at the same time, also being monitored for epilepsy. The in-take procedure took half the day because the EEG tech had to hook his head up to 50 EEG lines. This meant that he couldn't leave his bed except to go to the bathroom, and that only with a nurse (I wasn't good enough.)

There was a camera recording his every movement as well. Attached to his bed was a large red button - for use only if he had an "event", to be pressed by him if possible but most likely by me, since I was staying with him. (The hospital was very accommodating.)

I pressed the button once during the night, and four nurses and a doctor rushed in so fast it made my head spin.

He was released after the two days, his "events" (they love that term) weren't epilepsy - they were "non-epilepsy events", according to his neurologist. Unfortunately, they couldn't tell us what that meant.

The nurse who helped him wash the glue from the electrodes from his head was very sweet. She told us that many people who come in for an epilepsy diagnosis must stay for weeks. Ugh! We got off lightly, it seems. She said that last year, in his very room, a woman had to stay there (in bed, remember) for SIX WEEKS before she had an event.

Anyway, I hope this helps. Apparently, people have this testing done to see what types of seizures they're having, and to see what medications work best.

thethinker42
01-12-2015, 09:10 AM
Definitely helpful - thanks!

Marlys
01-14-2015, 05:30 PM
I had a childhood form of epilepsy that I grew out of around adolescence. I was born in the '60s, so my experience reflects the '60s and '70s.
I'm working on a character with epilepsy, and I'm trying to learn as much as I can about the condition. (Obviously it's not his Single Defining Traittm, it's just the one I don't know much about.)

At this point, I'm curious about people's individual experiences, and I have... a bunch of questions. I'll list them all here, but of course no one's obligated to answer every single one (or any of them, for that matter). Any information y'all can provide would be fabulous. I'm researching epilepsy in the meantime, but I've found that people's individual experiences/anecdotes can sometimes be even more valuable (for fiction) than medical journals, etc. Hence...this post.

1. What is an emergency room visit like after a seizure? Obviously experiences will vary depending on the type and severity of the seizure and/or injuries, but tell me about some of your experiences. What tests were run? How did you feel? How long were you there? Basically, anything relating to seizures + emergency rooms. (ETA: obviously not all seizures result in ER visits) Never had an emergency room visit.

2. How has epilepsy affected various aspects of your life, such as jobs, relationships, etc? I remember going to a neurologist who said I couldn't swim, climb trees, or ride my bike because if I had a seizure at the wrong moment, I could die. My mother took me to a different neurologist instead.

There was also a stigma to epilepsy in the past. I remember finding a pamphlet they must have given to my mother when I was a baby. It was supposed to be supportive for the epileptic, but it was awful. It was called something like "A New Life" on the cover, and on the title page inside "A New Life for the Epileptic"--I remember thinking if epilepsy was no big deal, why didn't they put the word on the cover? It included encouraging stuff like, "In many states, epileptics can even marry!"

3. What do you feel before and after a seizure? If you have different types of seizures, do they feel different before/after? (And if you have "auras", how would you describe those?) Didn't really have an aura. I would have a hard time breathing and feel like I was falling backwards even if I wasn't. I would lose consciousness, my body would stiffen and hands would claw up, but I wouldn't convulse. I wasn't aware of what my body did until years later, when I asked my family how they knew I was having a seizure and not just blacking out.

4. What has frustrated you with regard to your epilepsy treatments? (i.e, difficulty getting tests/treatments, side effects, diagnoses, etc) If I started to have a seizure, my mother would try to bring me out of it by blowing on my face. I hated that, and to this day hate having air blown at my face, like from car vents.

5. Have you ever used a service animal? What type (and if a dog, what breed)? Was the animal helpful? How did the animal behave to let you know there was an impending seizure? Did the animal help in any other way? If you needed to go to the hospital at some point, did the animal stay with you? If you had to have emergency surgery or a CT scan or something, who took care of the animal? No service animal.

6. What (if anything specific) triggers your seizures? Does it always trigger you? (i.e., exposure to X stimulus = 100% chance of a seizure?) How does it feel from the time you're exposed to the trigger until you have the seizure? How long does it take? I usually only had seizures when I was crying hard.

7. What injuries have you had as a result of seizures? None.

8. What modifications have you had to make to your daily life due to your epilepsy? The medicine was the biggest deal to me. I took phenobarbital my entire childhood. I was on the maximum adult dosage at the age of 8 or 9, because I was having seizures so often and my neurologist thought I was starting to walk jerkily. My siblings were also supposed to not do things to me that would make me cry hard, so I think they had terrible guilt feelings when I had seizures. Two incidents that come to mind are my sister hitting me with a brush and my brother throwing a shoe at me--both made me cry hard enough to have seizures.

9. Tell me something about epilepsy -- in general, or your specific case -- that I almost certainly don't know. My neurologist was fascinated by the fact that I dreamed during seizures. From his interest, I'm guessing that's pretty rare.

10. When (and if applicable, how) did you develop epilepsy? Born with it, and almost certainly genetic rather than developmental, as my mother also had a childhood form of epilepsy she grew out of. Hers was somewhat different--she would have seizures without warning. For instance, she once had a seizure at lunchtime at her school, and went facedown into a bowl of soup.

11. How do people usually respond when they find out about your epilepsy? (friends, relatives, potential partners, co-workers, etc) Well, I understand my grandmother, who was holding me when I had my first seizure at the age of 3 months, was terrified. At Girl Scout camp, my counselors wouldn't let me swim in deep water, but they didn't tell me it was because of the epilepsy--they just said my swimming wasn't good enough. I was incredibly confused by that--I could see I was swimming as well as my friends. My confidence took a big hit.

12. If you developed epilepsy later in life, what was the most surprising/unexpected thing about it? N/A

13. If you've had MRIs, what information have your doctors found as a result? Ditto with CT scans, but please specify if it was an MRI or a CT scan. Never had either. Lots of EEGs, though, which I think are more common. I would have wires attached to the head with pink glue, lie on a table, and have lights flashed at me. They would change the light color with different discs, some of which seemed to have patterns on them--pretty sure that was an attempt to induce a seizure. Always took forever to get the glue out of my hair.

14. Is there anything you wish people knew about epilepsy? Are there any misconceptions you wish would go away? I don't know what people think about epilepsy these days. Back then, some people seemed to conflate it with mental retardation or mental illness, so I do remember being indignant about that.

Thank you in advance!

thethinker42
01-14-2015, 08:20 PM
Thank you so much - that's very helpful!

asroc
01-14-2015, 08:39 PM
I don't have epilepsy, but I'm in emergency medicine. Calls for seizures are pretty common for us. So maybe I can help a little with the medical perspective.




1. What is an emergency room visit like after a seizure? Obviously experiences will vary depending on the type and severity of the seizure and/or injuries, but tell me about some of your experiences. What tests were run? How did you feel? How long were you there? Basically, anything relating to seizures + emergency rooms. (ETA: obviously not all seizures result in ER visits)

Most people with epilepsy only end up in the ER due to their first seizure, before they're diagnosed. After that it's only if they injure themselves or are in status epilepticus: a seizure that doesn't stop or several seizures after another. That's a serious emergency. "Regular" seizures will usually stop on their own and aren't inherently dangerous.

Like most patients a seizure patient will get an IV. He may also receive oxygen and good medics will have anticonvulsants nearby and be ready to intubate if necessary. If the patient isn't known to have epilepsy you try to find out what caused the seizure. You take a thorough patient history and do a physical examination (fever, elevated heart rate, trauma, especially head trauma, abnormal respiration), including a neurological exam. You check blood glucose levels and, depending on the patient's history, lab work. If head trauma is suspected you can do a head CT. MRIs or an EEG to check specifically for epilepsy are possible, but usually come later.


7. What injuries have you had as a result of seizures?

The most common ones are bitten tongues and head injuries or other blunt trauma from the fall.


13. If you've had MRIs, what information have your doctors found as a result? Ditto with CT scans, but please specify if it was an MRI or a CT scan.

CT scans and MRIs are usually only used to rule out potential causes for the seizure. More specialized procedures like MEG or fMRI may be used at times, but typically it'll be an EEG. Once epilepsy is established there usually won't be any further neuroimaging.


14. Is there anything you wish people knew about epilepsy? Are there any misconceptions you wish would go away?


It's thankfully becoming more rare, but the old chestnut about holding people down and shoving something in their mouth still exists. Just make sure they don't bump into anything while they're seizing and let it ride out. Give them the opportunity to rest afterwards. Get medical help if the person hasn't been diagnosed with a seizure disorder or the seizures won't stop.

thethinker42
01-14-2015, 08:46 PM
Thank you!

thothguard51
01-14-2015, 09:16 PM
I will add that it was during many of my seizures, I had visions where I would leave my body and watch everything going on around me. I never traveled far from my body. Too afraid to do so. It was like looking down on myself and seeing what was happening to me, except how could I be laying there, when I was above my body looking down. This scared me until I would suddenly sit up and scream, several times. As I grew older, I can remember telling myself that I was not breathing, and to scream.

It was not until a doctor told me that I was astroplaining and by doing so I more than likely was saving myself since I was not breathing. I know this scared the shit out of a older cousin of mine who witnessed an event.

And yes, I often saw a light at the end of a tunnel. Every time I blacked out it would start with my vision narrowing, tunnel vision. My head would feel hot and a roaring in my ears would also grow. Still, I am not sure the light in the tunnel was anymore than physical effects on my system from blacking out and not the other side calling to me...

Lia_joy
01-14-2015, 09:25 PM
My ex had epilepsy so I have witnessed my fair share of grand mal seizures.
His condition was from a head injury as a teenager
he was an alcoholic -- the alcohol effected his dilantin levels and the consistency of taking his meds
He had frequent trips to ER. He never wanted me to call but they'd last a long time, sometimes he bled out of his ears, and they caused strokes multiple times. Once he was on a ventilator for days and once he forgot several years & we didn't know if he'd regain memories or full functioning... So I never knew if I needed to call or not and most of the time did. I got pretty used to it & stopped panicing, just did what had to be done, including one time carrying him out of the house with his mom and driving him 40miles as he was seizing (because we knew the ambulance would take a lot longer) That was one of the times he had a stroke.
Sometimes I'd get pissed at him for not taking his meds and/or drinking.
In the ER they'd do bloodwork to see if he was on anything besides the alcohol, and they'd give ativan to stop the siezure. When he wasn't seriously effected (as mentioned above) he'd usually get irritable, pull out the ivs and leave AMA.
He would smell sulfer before the siezure and know it was coming. Sometimes he could take ephedrin (this is when it was legally sold over the counter) with his dilantin and head off a siezure when he felt it coming on.
It was usually getting drunk that set off his seizures, but not always. I think a few times he had one from straining on the toilet.
He would have very sore muscles afterwards and be very tired.
EMTs always asked repeatedly about drugs he took even though I'd tell them it was epilepsy. On one hand it was a fair question given his lifestyle, on the other hand, he had epilepsy, which is more likely to cause seizures than him taking drugs when I told them I didn't see him take anything.

eoficon
01-14-2015, 09:40 PM
One interesting anecdote I've heard recounted in a biography was that an epileptic who was in prison was immune to a taser. I have never heard this anywhere else but the source was a legitimate one.

A book by Liao Yiwu

http://www.nytimes.com/2013/07/03/books/liao-yiwus-for-a-song-and-a-hundred-songs.html?pagewanted=all&_r=0

thethinker42
01-14-2015, 09:46 PM
Awesome info - thanks, all!