witnessing epilepsy

May 27, 2005 1:30 AM

this comment made me wonder: what is it like to witness an epileptic seizure?

I am interested in hearing about your experiences, the specific feelings and thoughts that are brought out by, watching someone have a seizure. Possibly useful for something I am writing, but mostly I am just curious because of that comment. (I have never seen one.)

posted by mdn to human relations (31 comments total)

You probably have and didn't notice, because they vary widely in severity and features. Look here. One person I knew in school just had a very occasional momentary twitch like locking up. OTOH, last year a woman standing on the subway next to me suddenly lost consciousness, fell to the floor and wet the floor just as we came into a station. Before we could crouch all the way down to her, however, she was back, jumped up and dashed out the door, all without saying a word.
posted by planetkyoto at 2:12 AM on May 27, 2005

I guess I've seen 30 or 50 or so, mostly via work. They are medical emergencies and you just chug into the groove of protecting them from hurting themselves, maintaining an airway as far as possible (usually can't do that much until it ceases at which time you crank up the O2) and giving medication/calling for the duty Doctor. That's the reactive work stuff.
But each time it's a heart pounding scene to witness - I tended to get umm... embarrassed is not quite the right word but it'll do -- for the person, wanting to shield them from prying eyes, ask people to leave the immediate vicinity and screening off. I get scared, even though I'm comfortable with helping -- emergencies are always freaky, you know that you're witnessing an intense event with potentially grave consequences. Inside, for me, all medical emergencies would generate fear and protectiveness, as I've mentioned and particularly during fitting, a feeling of helplessness is always there, because save for the drugs, there's really not a hell of a lot you can do. So there's that feeling of impotence in the face of exteme chaos and potential death.
Outside of hospitals I've seen a handful I suppose. Similar feelings are generated but there's a greater sense of helplessness and also a kind of flight/fight response because you want to stop people who misguidedly want to stick wood or something else in between the clenched teeth (I've seen that a couple of times and couldn't really prevent it). I understand that people are trying to help but really, when someone is in a clonic (after the tonic, or rigid beginning in grand mal fit) mode, you can only really move things away to protect them and maybe sit close to help prevent limbs striking objects of furniture or what have you. So in these scenes, I'm scared that if I intervene I'll get in trouble, that the person will be injured, that the person will die and (as with the hospital scene) fears about doing an inadequate job helping [I don't believe that's ever happened, it's just that that sort of scenario brings on such thoughts, to a modest degree anyway]

They are some of the most intense experiences of my life and I remember most of them quite well for different reasons -- usually peripheral things like relatives or staff members or the medical history stick in my mind.
posted by peacay at 3:59 AM on May 27, 2005

Oh, one last thing is that a number of grand mals that I've witnessed have been toddlers and children. Funnily enough, they feel more easy to deal with in so far as they are easier to protect or carry, they generally respond (if they are going to) well to drugs and if they're caused by a fever, there's a bit more you can do to help. These situations are much more intense (in my experience) in so far as dealing with the parents go. It's hard to get them out of the way, explain what's happening and calm them down (of course). So they're acutely traumatic for all concerned in a different and often more complicated way than when it's an adult.
posted by peacay at 4:12 AM on May 27, 2005

I've only witnessed one. I was in line at the grocery store and the woman ahead of me in line started moving slowly and hesitantly. She looked at me and mumbled, "Something's not right...not right..." Then, she went down and began to convulse. But her eyes were open.

I dropped to my knees next to her, expecting someone (anyone?) with some kind of training to help me. No one helped. Everyone kept walking around us, staring, kept on doing their thing. That shocked me more than her seizure. I finally remembered from CPR training to focus in on one person and order them to call 911. (This was before the widespread use of cell phones....maybe 1990?) She had stopped convulsing but seemed frozen. She seemed to be breathing so I didn't interfere, just kept her clear of anything around us. I had taken off my coat and I covered her with it (in case of shock). And I just helplessly sat there, talking to her, as people continued about their business. The paramedics arrived and I let them do their thing. They found her Med-Alert ID bracelet that identified her as an epileptic and she was able to communicate to us that someone in a blue car was waiting for her in the parking lot. So I went to find her friend, then I left. It is still very vivid in my mind.
posted by jeanmari at 4:29 AM on May 27, 2005

My wife is epileptic. She has complex partial seizures as opposed to grand mal. When she seizes she goes unconscious, becomes limp and her facial muscles twitch and occasionally her arms. She seizes about once or twice a week.

This has happened so many times that it has become routine, and I therefore desensitized to it. The first time I met her she had a seizure, so it's always been something I've been aware of, so there has never been a moment of shock for me when having to witness it for the first time after knowing her a long time. I've had to help people close to me deal with illness of some sort so I've developed a routine for events like that. So when my wife seizes I think about what I could do to ease the pain and if there are is any way to make her more comfortable when she comes to. For example, she has a stuffed bear that she's had for a long time that is comforting for her to have and makes her feel safe, so I try to find where the bear is in the bedroom so that she can have it immediately after she regains consciousness. Often she is in a lot of pain and emotional distress after a seizure (and also sometimes, beforehand) and I must remain calm so that I don't compound that.

That's what I think/do when she has a normal seizure. Once she had a longer seizure (18 minutes) and I phoned for an ambulance after 5 minutes. That time I was near frantic and had to exert great self control not to panic. She was naked at the time and I knew that she wouldn't want to be seen by the paramedics in that state, so I had to dress her while she was unconscious. She came to before the ambulance arrived and was in a lot of pain and emotional distress. I then had to argue with the paramedics who wouldn't let me ride with her, which as she was in a foreign country whose language she doesn't speak (I'm Icelandic, she's American, and we were in Iceland) that would only have made her feel worse and eventually I convinced the paramedics of that.

So, in conclusion, when the seizure is "normal" I feel similarly to what I feel when any of my loved ones is sick. When it's more serious I have to hold back the panic and the oh-shit-don't-let-it-kill-her thoughts because I'm the one who has to make sure she's alright. I don't know how universal this is, and I imagine that it's more emotionally draining to watch a grand mal. It's not for no reason that people thought that grand mal epileptics were possessed by the devil.
posted by Kattullus at 5:41 AM on May 27, 2005

I have epilepsy myself (I am Kattullus' wife, and he describes my seizures better than I could) and wanted to point out that not all seizures are medical emergencies. Grand mal seizures are more dangerous than partial seizures for sure, however, a patient with epilepsy does not necessarily need emergency care for each seizure. Often, all that is needed is a good long rest and perhaps some advil for the ensuing headache.

When any seizure lasts for longer than five minutes, a trip to an ER is definitely called for as the patient is in danger of status epilepticus which is a very dangerous thing indeed. Status refers to an ongoing seizure of 20 minutes or more which can only be stopped by medical intervention. This, again, can refer to any type of seizure. I've been in status once myself and despite repeated rounds of valium, kept seizing for nearly 45 minutes. I don't remember this (I don't remember any of my seizures) and was only 6 at the time, but I hear it was hell for my mother.

Anyhow, I have seizures usually about twice a week and only end up in the hospital on average once a year for a dilantin/valium drip when they get out of control. Most of the people I know have seen me seize at least once and generally get a little freaked out the first time, but it becomes less and less of a big deal the more they know me and the more it becomes obvious that this is just part of the routine of being me.

(This may sound like I seize a lot, and I do, but this is quite good for me. Left uncontrolled, I have seizures everyday and sometimes upwards of 10 times per day. I have frontal lobe epilepsy which is harder to treat than the more common temporal lobe variety.)
posted by grapefruitmoon at 5:41 AM on May 27, 2005

wow... looks like this has been answered fairly well by the last two posts..

But, let me add a somewhat different experience. When I college I worked at a private psych hospital that still did (and I think still does) electroconvulsive therapy . My job was to assist, primarily to prevent the patient from hurting him/her self during the convulsion.

It was always an odd thing to watch, and difficult to justify (in my uninformed head) why it was necessary to induce this response. I guess the good thing about this experience is that, during the few times I've been present when someone was experiencing an actual seizure, I was comfortable in helping.
posted by HuronBob at 6:01 AM on May 27, 2005

grapefruitmoon writes "[I]..wanted to point out that not all seizures are medical emergencies. Grand mal seizures are more dangerous than partial seizures for sure, however, a patient with epilepsy does not necessarily need emergency care for each seizure."
touché.......yes of course. My recollections are for the grand mals and as most were in the emergency dept. they were emergencies because there was usually no background histories known. It was nice to read yours and Katallus's descriptions just by the way
posted by peacay at 6:15 AM on May 27, 2005

Our dog has epilepsy and based on what is written above it is very similar between canines and humans. She had two bouts of severe seizures as a puppy (this stray we adoped ended up costing us about $500 in vet bills the first month we had her).

The two times we took her to the vet, she was having seizures regularly every 30 minutes to 2 hours, with the seizure lasting about 2-3 minutes. During that time, her eyes rolled into her head, her limbs quivered uncontrollably (almost as if she were trying to run while laying on her side) her tongue would hang out, etc.

The treatment was similar to what grapefuitmoon described: A valium drip. After she stabilized, she was put on phenabarbitol (sp?) and hasn't had seizures since (almost 8 years now). She's a smart dog, but very, um.... nervous (I don't know if that is related to the epilepsy or just her natural personality) and she has separation anxiety. She's fine with people around but freaks out if left alone.
posted by Doohickie at 6:56 AM on May 27, 2005

My younger brother had frequent grand mal seizures for about two years starting when he was two years old. They were awful. He would fall down and start convulsing, making weird noises, moving his arms, rolling his eyes. Nothing we could do could make them stop. They all lasted more than five minutes, and every time we'd panic and have to call 911 and he wouldn't stop seizing until he had an IV in him at the hospital. After a seisure, the whole family would feel traumatized by the experience and my brother's muscles would be sore for days from the strain.

They happened every few months. No drugs seemed to work. They kept upping the dose, but blood tests showed most of the medication was passing through his system instead of staying there and doing the job. Then one day, when he was three years old, my brother found his epilepsy drugs while playing in the cubpoard do and ate almost the whole bottle. We freaked out. After that, though, the dilantin levels were where they should have been. He may have had another seizure after that, I don't remember, but essentially they stopped at that point. After a few years, we weaned him of the drugs. He is 14 now, and hasn't had a seizure in more than a decade.

A friend from high school was diagnosed with epilepsy after having a grand mal seizure in a swimming pool when she was 12. She never had another major seizure again, but I'm pretty sure she had frequent smaller seizures in her teens. Sometimes I'd be walking down the hall with her and she would keep walking but seem to lose track of the conversation. She'd walk into lockers, her eyes fixed on nothing. Occasionally she'd drool. Then she'd snap back to reality as though nothing had happened.
posted by croutonsupafreak at 7:57 AM on May 27, 2005

I've only seen one grand mal seizure. My dad fell to the ground, accidentally kicking me a little and my reaction was something, "Quit goofing off, Paulie!" and I walked out and got myself a popsicle. By the time my popsicle was finished, someone had called an ambulance and my mom was screaming and crying hysterically.

I was 5. I still don't know what caused it. (My mom told me it was too much syrup on his pancakes). I still feel guilty.
posted by Gucky at 8:03 AM on May 27, 2005

My older brother has epilepsy which was most active when he was 6 and 7. He would have several seizures in a day, and as I was only 2 and 3 years old they were *very very scary*. Kattullus says above that seizures are emotionally draining to watch, and he's not kidding--my memory is sketchy under normal circumstances, but those scenes of my brother drooling with his eyes rolled back and making heart-breaking noises of discomfort (or pain) are still crystal clear. Medication has controlled his seizures well enough for years now (he's in his thirties), but back in his partying twenties a couple nights of heavy drinking could cause a seizure. Once he blacked out for 24 hours, missed a day of work and didn't even realize because of this (no more partying after that fortunately).

You might get a good idea of what a seizure's like in Julie Doucet's comic My New York Diary. Doucet has epilepsy and she draws & describes a few in her book (though they are not the main event).
posted by ibeji at 8:18 AM on May 27, 2005

My 7th grade shop teacher had one during class, which was quite the event.

I was looking right at him: One second he standing there talking, the next he had stopped talking, was quickly turning red and starting to fall backwards.

It probably lasted 45-60 seconds, but we all freaked out. I think we had just seen a bunch of first-aid classes in health class because I tried to elevate his head and turn it to the side (which doesn't make a whole lot of sense, but hey, I was 12). I did manage to hold on to his head so he didn't bang it on the floor (or into the running band saw) and his skin was very very red, yet clammy.

When it was all said and done, the principal told us he was allergic to caffiene, and had accidentally drunk full-caf coffee that morning.
posted by o2b at 8:29 AM on May 27, 2005

Many, many years ago I worked as a camp counselor at an Easter Seal camp. During the adult session we had several epileptics. One in particular was also mentally retarded, about 6'4" and quite strong. He would become anxious as the seizure started and try to put you in a bear hug. Another counselor was once trapped by him for about 15 minutes. Several times, I was the counselor on hand when he went into a seizure. The challenge was to help get him to the ground without him hurting himself, while avoiding his bear hug. The seizure itself would be over fairly quickly, but he would continue to try to hug you, as you sat and tried to reassure him.
posted by bobduckles at 9:12 AM on May 27, 2005

I remember this kid in high school who had a seizure in my Advanced Algebra class. It took a couple of seconds to realize what was going on because unless you've seen one before you're sorta like "What the--?" We were all seated, of course, so he didn't fall out of his chair or anything, he just kinda clenched up and moaned loudly. Needless to say it caused a lot of panic.

I had this kid in several of my classes and for the next few weeks, he had them at least once or twice a day. We were all traumatized for the first week or so, I remember sitting in class just waiting for him to seize. I got over it though and eventually he got the proper medication to stop them completely.
posted by SoulOnIce at 9:32 AM on May 27, 2005

I remember this kid in high school who had a seizure in my Advanced Algebra class.

I understand Advanced Algebra can induce seizures... kind of like flashing lights to some people....
posted by Doohickie at 9:43 AM on May 27, 2005

First girlfriend, a few minutes after our first kiss. Nothing to add to the above, but it freaked me out more than I was willing to admit at the time.
posted by sohcahtoa at 10:08 AM on May 27, 2005

So I posted the comment that inspired this thread, I guess. A friend of mine's dog has epilepsy and has had a couple of seizures at my house. They're not real fun. What's interesting is that I can watch the dog's eyes during the seizure and it's very clear when the seizure has ended and he is back to being his normal self. The transition is far clearer than I'd have expected.
posted by stet at 10:37 AM on May 27, 2005

It's got a lot to do with how people react in a crisis situation and how informed or familar they are, with seizures or what have you.
If I know someone has seizure condition or what is not unusual, it's just about keeping them safe. It doesn't bother me, but some people freak.
I had one from a bad mismedication and I was glad to have a witness, but she was scared and didn't know what to do (it looked like I just went unconscious). Nothing had to be done, but I was freaked out and glad to talked to someone with a seizure disorder afterward, just to figure out what happened.

In any unknown crisis situation (in general), I hold back a few beats to see if someone who is better qualified will step up, but if no one does or people start doing the wrong things, I'll jump in.

I don't know if what you're working on is fact or fiction but if your'e looking for a range of reactions from people who aren't familiar with seeing or dealing with one, I'll put my mail in my profile and see if I have time to write up something that might help.
posted by philida at 11:50 AM on May 27, 2005

I witnessed my brother have his first one and it was extremely frightening because it wasn't diagnosed yet. I was young...6th grade maybe and he was highschool aged. I was in a room talking to someone, he walked in kind of dazed looking, said some random statements that didnt really make sense and then kind of fell forward what looked like hitting his head on a very hard bench (turned out later was his shoulder). Because we thought he hit his head, we totally freaked when he thrashed around convulsing on the ground as we tried to hold him.. Pretty frightening for a kid to witness right in front of him! It still flashes thru my mind every once in a while and i get a weird feeling when i'm in a situation where someone acts totally odd out of no where (hard to explain really).
posted by joshgray at 12:13 PM on May 27, 2005

I've got temporal lobe epilepsy and have had several seizures. I've never witnessed one myself (and my experiences as a seizee have been bizarre at best) so thank you everyone for sharing.
posted by samh23 at 12:17 PM on May 27, 2005

As an epileptic, I have one habit that might help some other epileptics: make a "hot sheet" for your work or wherever you spend most time out of the house. At my office, I have a sheet posted in my workspace. I've pointed it out to some trusted coworkers, and reviewed it with them. On the sheet are some notes like we've seen above: How to respond, when it's necessary to call the medical folks, and so on. It helps to have at least one person around who's trained to respond to the seizure.

I've managed to hide my absence seizures at work, but in case of a grand mal, I'd hate to have a panicked office...
posted by code at 12:42 PM on May 27, 2005

Note that not all seizures are noticable. The stereotypical seizures ("fits") are pretty much grand mal seizures. Milder petit mals are less dramatic. In some cases you might not even notice that someone had one. I myself had pediatric petit mal epilepsy (It cleared as I went through puberty), and when I had my first long lasting seizure it was actually pretty undramatic. I just laid there, not doing anything. Which was freaky for all, of course, but less dramatic than the popular image of epilepsy. At least, I'm told that's what happened. Like many petit mals, I had no memories of the seizure, or any sense of time passing. A small petit mal, like a microseizure, is actually even less dramatic. No fits, no collapses. There's just a small disconnect in your memory, which can easily be mistaken for daydreaming. From the point of view of an outsider, it just seems like you haven't been paying attention.
posted by unreason at 12:43 PM on May 27, 2005

Geez. A few years back, I was walking down the sidewalk just below busy Dupont Circle in DC, about 2:00 in the afternoon. I had been at the store picking up a few things before leaving for a long trip to Guatemala, so I was definitely in vacation mode. Then I saw a guy maybe 100 feet away lying on the sidewalk convulsing. Oddly, there were no other pedestrians on that stretch of sidewalk—the guy wasn’t being ignored, there just wasn’t anyone around.

I ran up to the guy and squatted down. Just then, someone ran out of one of the shops. I yelled for her to call 911. I turned back to the guy and saw that he kept banging his head on the sidewalk, so I put my package under him. I did not try to force anything into his mouth. He was huffing and puffing something fierce, distending his cheeks with every exhalation. He seemed to be searching his pockets, I guessed for meds, so I started going though his pockets, too. By then, a few folks had gathered around and were giving me all sorts of suggestions, but no one was helping.

The guy slowly came to. As he looked frantically around, his eyes locked on mine, and I could tell he was in terror. He couldn’t talk, so I calmly explained that I’d found him, that he appeared to be having a seizure, and that the ambulance had been called.

As his faculties returned, he started talking. He said he’d not had a seizure before, and had no idea what had happened. He pulled out his cell phone, but couldn’t remember the names or numbers of anyone to call. He asked me if he could stand up, I advised “no,” and he nodded and stayed sitting.

Just then, a fire truck pulled up. I told the guys what had happened, what I saw, then…went back to work. I have always wondered what happened to that guy, what sort of tests and medication and all that he had to go through after that. The next day, I was off on my trip. It was very weird to just return to normal life.
posted by MrMoonPie at 2:05 PM on May 27, 2005

as someone once "rescued" by a stranger - not with a seizure, but with concussion/blindness/bleeding - and who always wondered who he was and what happened to him after he got me to hospital, can i say "thank-you" to you, MrMoonPie, and hope that whoever you saved says thank-you to my rescuer one day, by chance. i, too was terrified (being blind suddenly isn't much fun) and what they/you did was wonderful. thanks.
posted by andrew cooke at 2:27 PM on May 27, 2005

I witnessed my father having a number of grand mal seizures. They always frightened me terribly. I never knew what to do, except try to keep him from biting off the end of his tongue. These showed up after he stopped taking his medication. Because God told him he didn't need it.

He had one, once, while driving myself and his wife late at night. Fortunately, he managed to snap out of it rather quickly. Though his wife did make him continue driving the rest of the way home.

Psychotic bitch.
posted by The Great Big Mulp at 3:41 PM on May 27, 2005

I saw a guy have a seizure at work. He was in the process of being uh `let go', and the stress of it triggered a seizure.

It was odd to see, and frightening. He went still, groaned, his eyes closed and he exploded into sweat, literally covered in sweat in seconds. Some twitching, a couple of noises, some heavy breathing and it was over in about a minute. He had remained sitting.

He opened his eyes, said `sorry, I lost track of the conversation there', not realising he'd been out for a while. I drove him home. Poor guy...
posted by tomble at 3:43 PM on May 27, 2005

In case you're wondering this is what an epileptic fit looks like to cleversheep.
posted by splatta at 3:55 PM on May 27, 2005

I worked for a year in a hospital specialized on epilepsy (alternative service to the compulsory military service in Germany). The patients I worked with have had no success with medication and were evaluated to see if brain surgery might help them. This requires pinpointing the exact area in the brain where the seizures originate, which can then be surgically removed if it is not vital for e.g. speech. To do this, the patients lie in bed several days (up to 2 weeks), being videotaped and with an EEG, the dosage of their medication slowly lowered, waiting for a seizure to occur. Often more than one seizure is needed for an accurate diagnosis. This leads to the slightly bizarre situation of everyone expectantly waiting for the seizure and the patients being down or even apologizing when it didn't happen for another day (or in the 5 minutes, without EEG, needed to transfer them from one room to another).

So, naturally, I witnessed many seizures and with time, you get kind of used to it, but it is still a very tense situation, as there is always the remote possibility that things go horribly wrong, especially with the lowered medication. It probably helps that in this setting there are things to do, so you don't feel absolutely helpless: Take care that the patient doesn't get hurt, try to ascertain the neuropsychological state by asking specific questions to see if some tasks can still be carried out or how much the patient remembers afterward, the technical aspects of video and EEG. What was really astonishing was the variety of different seizures, from absences where the only indication was a raging EEG to long grand mal seizures.

Some patients asked to see the videos afterward, for the first time seeing what the others were seeing and what had only been described to them.

The research carried out in this area is also really impressive, using physics and computer science to achieve better understanding. For example, in the future there might be a small implanted chip that monitors the brain waves and can predict the onset of a seizure some time before it starts and react by warning the patient or by pushing a fast-acting anti-epilepsy drug into the blood, thereby stopping the seizure without the side-effects of taking these drugs the whole time.
posted by ltl at 4:04 PM on May 27, 2005

In college, I saw a girl have a grand mal seizure in class and was frankly terrified. I heard a crash, turned, and she was on the floor. She thrummed, like hard-picked guitar string. She was completely silent, and that made it more frightening. Fortunately, she had a friend who was in the class too, and she knew what was happening, and was able to help her up and walk her, limping and crying, out of the room.

I was shocked by the speed of it -- it couldn't have lasted more than 30 seconds -- and its ferocity. There was no time to make sure she had a clear airway, or get something under her head. She seemed so small and vulnerable afterwards, in a way I associate with great pain or fear. Thankfully, she came back to class and was fine for the rest of the semester.

I also taught a student who had petit mal seizures; we'd be speaking and her gaze would cease to focus, instead becoming sort of black and inward. I've seen people about to faint with the same expression. It would often only last a few seconds, and then she'd come back. But her personality on the whole was quite vague and dreamlike, which I was told was related to the epilepsy, which could not be controlled despite heavy medication and surgery. Eventually, she had to drop out.
posted by melissa may at 4:19 PM on May 27, 2005

I've never seen a seizure, but I've had several, though I am now technically "in remission." The weird thing about having grand mal seizures, in my opinion, is waking up after it's over to see your friends (or a bunch of complete strangers) absolutely freaked out, and hearing stories about what happened during the seizure. For example, during college, I once had a seizure right when I was about to place an order at a fast food joint. I woke up in an ambulance, only to have my roommate tell me that he had had to keep other patrons from putting a plastic "spork" in my mouth. Apparently I was also speaking with a German accent for a while after I started to wake up (I don't remember this). That was my first seizure witnessed by anyone else, and it helped explain a few earlier incidents. After that, I was diagnosed and started taking medication.

Just to make clear what is implicit in a couple of earlier posts: in general, you shouldn't put anything into the mouth of someone having a seizure, but you should loosen his or her collar and put something under the head. Don't call an ambulance unless it doesn't stop after a minute or two. Usually seizures are very short and don't do any major damage, but a particularly long one can result in status epilepticus, which can mean permanent brain damage.
posted by lackutrol at 4:58 PM on May 27, 2005