What it's like to have a grand mal seizure

Radio producer Jess Hill, who has been working in the Middle East, wrote an account of what the experience of having a grand mal seizure was like.

She wrote the post a week after the episode, and two weeks before having brain surgery to remove the tumor that caused it.

"At the time I was still having seizures every few days, and just the act of writing about the first seizure in such detail almost brought on another one," Jess explains. "I initially planned to keep this account private, but after two months, I’ve decided to share it, if only for the fact that it might be useful to others who have had or will have a similar experience."

It happened when she was in transit via plane from Yemen to Beirut.

My head resting against the window, I was swimming around somewhere between awake and asleep when I felt my mind fall through a trapdoor and into a vacuum. Suddenly, there was no ground for my mind to land on. No language. No concepts. Anxiously I grasped through the smothering black for an idea, a word, something I could articulate. Nothing. Just black.

Then I felt my eyes roll up in my head. On a slow, steady rhythm, they started jerking forcefully to the right. Language flooded back i’ve lost control! and jerk, jerk, jerk, further and faster my eyes pushed to the right. Breath quick and shallow now, eyes so far up and to the right they pushed painfully against their sockets. My head jerked too now, like it was being dragged by my eyes jerk, jerk, jerk, I tried to push out a sound, a grunt. Nothing but spittle.

In full seizure now, shaking uncontrollably, I could still see out of the very corners of my eyes. There was no-one sitting next to me, and the man two seats down was staring into his iPad.

Read more. Follow Jess on Twitter: @jessradio.

• [saraeanderson]

  David Foster Wallace’s incorrect desciption of what it’s like to have a seizure scared the hell out of me for a long time.  Then I became prone to seizures and got over it a little.  

• [philosophermusician]

  I had one clonic-tonic (grand mal) seizure, but mercifully 1. It was during surgery prep, so I had doctors and nurses surrounding me, and 2. I blacked out for it.

  My other seizures were of the language-loss sort, losing the ability to think in language, not just speak it. It is both very terrifying and phenomenologically interesting to find out both how much and how little of your thought is actually controlled by language.

  Fortunately, I’ve been on medication to prevent them, and have not had any since.

• [Michael Smith]

  She described experiencing a grand mal seizure but this doesn’t agree with my experience, or the experience of the half dozen people I have spoken to with the same problem. In my experience the grand mal seizure itself suppresses the recording of long term memories, so you can’t write accounts like this.

  It is possible that she is describing the aura before the main part of the seizure or that she has some unusual neurological condition. In my experience I get an aura for about a minute. I know what is going to happen. Then I get a few vague snatches of experience. Perhaps people in medical outfits working over me. Then I am functioning normally, a few hours after the seizure, when my long term memory starts working again.

  • [Josh Geyer]

    I have had a grand mal seizure and all I remember was my arm started twitching uncontrollably, I tried to yell for help but I really couldn’t talk, and then complete blackout for the next thirty minutes until I woke up in an ambulance.

    It was the most traumatic thing that’s ever happened to me, but I can’t really remember anything after about two seconds before it started.

  • [nemomen]

    Yeah, me too, no recollection at all.  I’ve had a few, and never was able to remember anything about it.  I just remembered coming to feeling confused and my muscles being sore from the convulsions.

• [thunderhammer]

  I like that she included the part about the wheel chair guy insisting on $10 for doing his job and the taxi driver over charged her too.  This is one constant I’ve found about travel that wears you down like sandpaper.

  But I’m not sure if it’s better to get sick like that in USA or somewhere else.  *Supposedly* we have the best doctors and devices and stuff, but major illness here is the same as bankruptcy.  

  • [cfuse]

    Why do Americans keep parroting that lie about ‘best healthcare’? You’ve probably got the best country clubs you’ll never see the inside of too.

    • [Antinous / Moderator]

      We probably do have the best health care in the world. We just don’t seem to have enough of it to go around. 13 out of the top 20 universities in the world are in the US, so it’s not much of a stretch to think that we have the best health care professionals.

      • [cfuse]

        I live where I can see a doctor that’s just as good as any in the US, based on *medical need* and not on a financial caste system. America simply cannot compete with that.

        America has more than enough healthcare to go around, it just needs to triage based on medical need instead of financial liquidity. Seeing doctors when you’re sick as opposed to when you can pay makes a huge difference. I know this because I live under a system that works – this isn’t some theoretical construct, this is the actual day-to-day healthcare of the people in my country.

        Healthcare is a solved problem. There are plenty of excellent healthcare systems worldwide, America would see that if it would only take its blinders off.

        • [Antinous / Moderator]

          I live where I can see a doctor that’s just as good as any in the US

          The fact that the US has a shitty system that denies health care to many people doesn’t magically make it true that all doctors are equally competent or that every hospital has equal resources.

        • [cfuse]

          Nor did I say as much.

          I live in a capital city, near a teaching hospital, and my regular treating clinician is a research professor – it wouldn’t be fair to compare that to bumfuck, texas USA OR a base hospital in woop woop here. I get better care than most rich Americans do (I just don’t *pay* for it like they do).

          The American system sucks, not because of a lack of skill or facilities, but because of rampant avarice and inequity in treatment.

        • [Charlie B]

          The American system sucks, not because of a lack of skill or facilities, but because of rampant avarice and inequity in treatment.

          Hey, don’t forget corruption – profound moral corruption in all levels of government is the special sauce that makes our world-class medical provisioning suckage possible.

          And don’t over-rate our doctors; the US is generally lags far behind in adopting new medical treatments, especially if those treatments decrease profits of the industrial medical-complex.  We didn’t invent eye surgery, heart transplant surgery, artificial hearts, effective ulcer treatment, probiotic therapy, the list is nearly endless.  We mostly invent pills that allow the continuation of self-destructive behavior.

        • [gehringer]

           Actually, Charlie, we *did* invent the artificial heart, and heart transplants.

          https://en.wikipedia.org/wiki/Norman_Shumway

          https://en.wikipedia.org/wiki/Robert_Jarvik

          But hey, whatever lets you pretend the bad parts of America’s medical system mean it has no good parts.

        • [Charlie B]

           Gehringer, maybe you should read those links you posted – Barnard was not an American, although Jarvik was (thank you for that correction).

          Way to dodge my point with the ad hominem bullshit, too.  I guess you’re an American Exceptionalist and believe in murdering Indians for fun and manifest destiny?  That’s as reasonable as your characterization of me, Jingo-man – did you like it?

      • [Diogenes]

         We don’t have the best health care in the world.  Some Americans do, but not enough to comfortably use “we” when describing health care available to most Americans.  We are often denied access to the greatest care that money can buy, because we don’t have the money to buy it.

      • [AnthonyC]

        This is speculation, not an argument or a strong belief, but perhaps:

        The US is also where a larger-than-expected fraction of drugs, devices, and treatments are developed. Because this is where the developers can profit from them. Part of why countries with socialized health care (and better outcomes) can save money is because Americans are paying for the development of the treatments they use. They have not come up with a system to develop new medicine that is as effective as a profit motive. I wish they would, because the result is that we’re spending all this money to develop cures to the wrong things – basically no one is developing new antibiotics, for example.

• [Jack Earl]

  What she’s describing is either a partial seizure or wholly fabricated nonsense. A tonic-clonic seizure (grand mal is no longer the preferred term) involves a total loss of consciousness and an absence of memory of both the seizure itself and the moments preceding it. Partial seizures come in many shapes and forms and may or may not involve a disruption of consciousness/memory. I speak as someone who studies the brain as well as someone who has had a tonic-clonic seizure.

  • [Boundegar]

    My son recently had a few grand-mal seizures, and he remembers nothing at all.  Just one anecdote, IANAD.

• [Jardine]

  If I’m remembering my grade school French correctly, would “grand mal” just translate as “big bad”? So big bad seizure. I can see why they stuck with grand mal until changing the term instead of translating it to English.

  • [gehringer]

     Yep.In this case, ‘Grand Mal’ would be better translated as ‘little illness’

    The term ‘grand mal seizure’ was to seperate it from ‘petit mal’ seizures, a different, shorter kind of seizure now called an ‘absence seizure’.

    • [Charlie B]

      Grand Mal = larger evil
      Petit Mal = smaller evil

      N’cest pas?

• [Jess Hill]

  Michael, I described my personal experience. I didn’t say this is what you can expect if you have a seizure, or that I speak for everyone who’s ever had one. I was pretty surprised that I remembered it all so vividly, but I did. My neurosurgeon didn’t find it so strange that I remembered it, and was very clear on the fact that it was a grand mal seizure I had experienced.

  • [Chris H]

     As others have pointed out, I have to wonder what kind of doctor was calling your seizure gran mal, since that’s a term that’s like 20-30 years out of date. I’ve been having these things all my damn life. Nowadays, the proper term for most seizures that would have formerly been classified as gran mal is “generalized tonic-clonic episode.” Generalized, because it happens in both hemispheres of the brain, and tonic-clonic because it happens in two phases with distinctly different spasms: the tonic spasms are long, sustained contractions of the muscles which basically make your whole body go rigid and fall  down. This is the most likely time for someone to get hurt during a seizure. The second phase, the clonic phase, is comprised of short, quick muscular spasms that make the person convulse and thrash around. Scary, but if they’re protected from hitting something, it’s not usually as likely to harm themselves as when falling during the clonic phase. Not always, though; several years ago, I had a seizure in my sleep and ripped the ball out of my shoulder socket and shattered it into three different pieces.

    You may have had a seizure as you describe, but it’s a cinch that it wasn’t a generalized tonic-clonic. If all your doctor said was that it was a “gran mal,” then they told you absolutely nothing useful.

    • [AnthonyC]

      I have a two year old cousin who has been having seizures since birth, and *all* of her doctors still use the term ‘grand mal.’

      • [Boundegar]

        Likewise my son’s doctors.  Maybe they say “tonic-clonic” behind our backs, but they speak English to the lay-people parents.  Er…  French.

  • [Charlie B]

    Thank you for sharing it with us.

• [LoquaciousTech]

  14 years of having epilepsy and all I’ve got to show are chipped teeth, scars and everyone elses memories. Why don’t I get to remember them? Damnit. 

  • [scoia]

    Right. Though I do have an impressive neck scar that’s attributed to various sources – depending on the age of my audience.

    • [LoquaciousTech]

      It’s impressive that it’s age restricted! I’ve got some photos archived somewhere from both times that my teeth have went through my upper and lower lip(each lip, separate times). I had a seizure on a bicycle on my way to work about three years ago, that was fun. Shattered orbital floor in the right eye, broken nose, I looked like a happy camper. I woke up in the ambulance and argued that I needed to get out and go to work, not the hospital.

      • [scoia]

        Ha – that post sizure OCD thing seems to be a constant – after one seizure I spent nearly two hours trying (failing) to put on a pair of tights.  It just seemed so normal to do so, bizarre.

        I’ve been so lucky to never have one while riding my bike – most annoying injury so far was a truly gross case of road ‘rash’ from asphalt pebbles embedded in my arm (official explanation, blunderbuss).

        • [LoquaciousTech]

          That’s awesome! I wish I could use the blunderbuss sometime, not that I plan on having a seizure soon.

          Those EMTs were saying “your face is bleeding everywhere, you can’t goto work today.” I didn’t care. Just like I didn’t care what day of the week it was. I just wanted to get back on my bike and go. At the ER, the nurse came in and asked if I was okay. I said I had to leave and get to work. She said I couldn’t because of my head injury. I remember smiling and politely saying “I’ll just wait until you leave and then I’m going to get my ass out of here.” Moments later I had two nurses sitting in the room with me that wouldn’t leave. 

          Oh yeah! I forgot! The place that I had my bikefaceseizure in front of was a restaurant, and it was on a Saturday when they were serving brunch! I was a few feet from all those mimosas spitting foamy bloodysaliva!

        • [alphaxion]

          I’ve had about 4 or 5 tonic-clonic seizures in my life and they don’t match up with the account in this article either.
          My aura tends to be extreme deja vu where I think I know what it happening next (it’s just the lag between it happening and my brain recognising it) to the point where it makes me feel like I’ll be throwing up soon, then the next thing I’m waking up on the floor with people around me. Every time people have said I was annoyed at them cause I thought I had gone to bed and they were waking me up!

          The first time was scary though, I came through spitting chunks of teeth out because I had clamped down so hard I had shattered my molars (which were weak anyway due to a low enamel count). I’ve had one in my sleep too, I only know this because I woke up in the morning and tried to get out of bed but could only flop over as I had stressed out the joints between my arms and top of my thighs to the point where they couldn’t hold any weight.

          Thankfully I haven’t had one since about 2007 and no longer take regular medication for it.

• [Maurice Reeves]

  I’ve had several seizures, though thankfully the last was about seven-eight years ago.  They were utterly terrifying, though I think they ended up being classified as partial seizures.  I remember waking up terrified of *something* and feeling my head and arm moving without my control.  I couldn’t see anything in the dark, but felt my consciousness slipping out of my head.  I could hear an almost industrial grinding or throbbing, and my wife screaming my name.

  When I woke up later, I had an IV in my arm and an oxygen mask on my face and I was taking a trip to the hospital.  

  I only had four seizures, and I’m on medication now.  Thankfully it’s working, and I hope it will continue to work.  Those seizures are by far the most terrifying thing I’ve ever experienced.

  • [Michael Smith]

    They were utterly terrifying

    For real terror, try breaking a controlled release tegretol so you get the whole dose at once.

• [LoquaciousTech]

  Zonegran! That’s my favorite, plus it’s Japan’s favorite! #1 prescribed for seizures over there…I’ve been on a boat load of others, and a toxic combination of some(literally, stupid doctors). 

• [scoia]

  I’m an epileptic myself, have had many tonic clonic seizures over the years.  It’s always interesting to read first hand accounts.

  However, it is extremely, extremely unusual to have any level of consciousness during a full seizure- given the action on the brain (definition of a tonic clonic seizure), I would have though impossible.

  I certainly have had no memory of anything during the actual seizure (aside from the one to five minute “aura” proceeding), and it takes me quite a while to recover full consciousness – in the case of multiple seizures, it can takes days to recover normal functioning.

• [folkclarinet]

  As someone who has had hypoglycemia-induced convulsions, I would like to add that for me, typically I’m conscious during them. Not through all of the seizure, but after about 30 seconds usually I’m trying to hold on to something steady in order to try to stop the shaking.

• [geech]

  Xeni and Jess, thank you for sharing this.  My son has epilepsy, though his seizures are controlled by medication. A few months prior to his second birthday, out of the blue he had four grand-mal (tonic-clonic) seizures in four days. All MRI & EEG tests came back clear for abnormalities. Idiopathic juvenile epilepsy. He had 3 more a couple of months later and we went 20 months before another one. Now we’re a month past that and praying that he will indeed grow out of it, as the numbers indicate we have a good chance of. Yay numbers. 

  Nice to get some idea of what may be going on inside. Thanks again.

  • [Michael Smith]

    Now we’re a month past that and praying that he will indeed grow out of it

    I went 20 years seizure free with no medication and had one seizure out of the blue a few years ago. Your son could easily get past the condition which is causing his problems.

    • [alphaxion]

      I’ve gone almost 7 years without a seizure with no medication so far.

      Mine was a strange one as I didn’t have my first tonic-clonic until I was in my early 20′s,
      I believe mine was created via head trauma because the day before my first fit I was rear ended by a car whilst waiting at a roundabout on a driving lesson and the back of my head pinged off the headrest.

      The doctors never figured out what triggers them and put me on a very small dose (2x100mg carbamazepine (tegratol) per day).

      • [Antinous / Moderator]

        Thank God for Tegretol. I had a friend who had been on Phenobarb since childhood. She literally locked herself out of her own house every week because she was so spaced out. Her doctor switched her to Tegretol when it came out. Three years later, she had gotten her MS while working full time.

        • [Michael Smith]

          Three years later, she had gotten her MS while working full time.

          The mood stabilisation affect of tegretol steers me gently towards being a long term plotter and planner. I only noticed this after the first six years on the drug turned me from a 19 year old with no plans beyond next week to a 25 year old with a house which I had mostly built myself.

          My seizures are triggered by panic events which I tend not to get under tegretol so I am not even sure that it has a primary anti-convulsive effect. It could be that it just helps me avoid the triggers by planning ahead.

  • [scoia]

    Both of my cousins have grown out of their childhood onset epilepsy, have gone over 20 years without seizures- as you said, the numbers are in your favour.

    Best of luck.

• [Øyvind]

   In my life I have had maybe a handful of grand mal seizures. And while I don’t have any memory of the actual seizure as it goes on, I do remember the seconds leading up to it; a sense of my mind doing a dolly zoom of my body, watching my arm starting to move without me being aware of it, and then falling backwards into darkness. And there have been times when trying to remember it has brought back enough of teh sensation to almost trigger a new one.

• [Fef]

  UNSOLICITED PEDANTRY ALERT

  Hey there. I’m a neurologist, and my subspecialty is epilepsy. portions of Jess’s description are very atypical (if someone is having a “grand mal,” or generalized tonic-clonic, seizure, there is no recollection of the event, or at least that phase of the event); but on further reading, yes, she likely had a partial-at-onset seizure which secondarily generalized.

  So: Many doctors still use the terms “grand mal” and “petit mal.” Epileptologists long ago discarded them because they’re too vague and may obfuscate what is really happening.

  Seizures are classified into two main types: Generalized (with widespread activity throughout both hemispheres of the brain) and Partial (or localized, involving one specific region of cortex). Most generalized seizures are tonic-clonic, referring to the usual progression of tonic muscle flexion (when neurons including those in the motor strip) are firing away very quickly) to clonic muscle jerks (usually correlating with bursts of neuronal activity starting to slow, as seen on EEG).  But some generalized seizures are nonconvulsive, such as absence seizures (formerly called “petit mal”), while others may be atonic (sudden loss of muscle tone), myoclonic (sudden muscle jerks), etc.

  But generalized seizures are, importantly, divided into generalized-at-onset (often genetically determined, sometimes due to developmental anomalies); and partial-onset, secondarily generalized seizures, which start out as localized events involving one area of cortex, but then spread as the seizure continues. The spread of a seizure in the brain is called kindling, as seizure activity begins to involve neighboring neurons, or can spread along axons to secondary regions; some but not all will then spread enough to move along the corpus callosum, which bridges the two hemispheres. This pretty much immediately precedes the seizure becoming generalized tonic-clonic.

  How a partial seizure manifests itself depends on where in the brain it starts, since different brain regions handle different tasks. Above, alphaxion describes intense deja vu as the aura, heralding seizure onset. Most likely, his seizures begin in the temporal lobe (near the hippocampus, which is involved in memory and recognition – aha!). Usually, when seizures are localized in the temporal lobes, they manifest (at least for a little while) with impaired but not complete loss of consciousness. People may be observed with automatisms, stereotypic, repetitive behaviors that look almost goal-oriented but are unconscious: lip smacking, fidgeting with one hand (buttons on their shirt, or picking up and seeming to look at an object), sometimes with nonsensical vocalizations, though left hemisphere events may include some temporary aphasia. Though awake, someone in this phase of a seizure will not be able to respond appropriately to you speaking to them.

  These types of seizures are called complex-partial; the person experiencing the seizure is not completely unconscious, but they are definitely not normally aware or able to interact either. Usually there is no memory of these events. If there is, it’s often because a seizure will start in a very specific area (perhaps causing deja vu, or an unusual sense of smell, like burning metal or burnt toast – olfactory perception is near the hippocampus, too), and then spread. When a larger region of the temporal lobe is involved, then consciousness becomes impaired. (V.S. Ramachandran, previously featured on BB, has written terrific stuff on the complexity of memory and recognition)

  Simple-partial seizures don’t start with impairment of consciousness, though they may secondarily spread. A seizure starting in the occipital region could begin with weird visual phenomena, while one in the motor strip could begin with, say, tonic stiffening or myoclonic jerking of the hand. (As that seizure begins to spread, more muscle groups, like along the arm, could become involved.)

  Usually, repetitive, jerking movements on both sides indicate a generalized seizure; being conscious while this is happening usually means this is not a seizure, rather a non-epileptic event. However, there are exceptions: Seizures in the frontal lobes can sometimes cause dramatic, rapid bicycling movements of the legs, perhaps while the upper body remains normal.

  I’d guess that Jess’s seizure focus was in the left frontal region, based on her description of feeling her eyes jerking to the right. But there are always exceptions to every rule. And there are many, many variations in experiences, so I’m not surprised to see other people commenting, Hey, that’s not like what I experienced at all…

  Jess, I wish you luck and complete seizure control. Thank you for sharing your experiences.

  Oh, and BTW: Experiencing deja vu, or weird visual or olfactory phenomena, does NOT necessarily mean you’re having a seizure. Other things like migraine can present similarly.

  And BTW, Xeni, I’ve been keenly following your writing for quite a while. I’ve experienced too many friends, family and patients also struggling with cancer, and I have been enlightened and moved by your writing (and your links!). Thank you for all you’ve been sharing with us. Count me as one of the very many rooting for your continued strength and full recovery. Take care.

  • [alphaxion]

    That is an awesome post, thank you :)

    I made a point of saying that her seizure wasn’t similar to my own but stayed away from saying it wasn’t this or wasn’t that because of the very thing you mentioned in your post – epilepsy is such a complex beast.

    The guys looking into my case simply shrugged their shoulders and said ” we cannot tell you what specifically causes them, but you are having them”. I’ve since figured out mine are brought on by a combination of extreme lack of sleep, very little food and persistently high temps which serves to push my levels high enough to trigger. The very low level of medication I was on meant it takes quite a bit to tip me over the edge, activity wise.

    Oddly, I am quite happy that I have experienced epilepsy because it grants me a fascinating insight into consciousness on a personal level and how succeptable it can be. I like to think it has allowed me to touch on the great abyss awaiting us all and given a hint of what it would be like.

    • [Fef]

      Hi, alphaxion, and thanks for the reply. Your experience is interesting, but you’re far from alone. If you haven’t already, check out neuroanatomist Jill Bolte-Taylor’s “My Stroke of Insight,” for an interesting discussion of how her own stroke offered her an unusual glimpse into the workings of consciousness.

      Dostoevsky wrote a lot about his experience with temporal lobe epilepsy (TLE), which plagued him for many years. And yet, well before any effective treatment was available, he wrote that he would not give up his seizures if given the chance.

      Some people with TLE are known to experience not only these glimpses and insights but sometimes deeply spiritual, even ecstatic, experiences. (Evidence also points to out-of-body experiences and other “near-death” phenomena being related to changes in temporal lobe activity. A lot of my TLE patients have out-of-body experiences as part of their auras.) Dostoevsky’s novel “The Idiot” is supposed to be structured after his experience of a seizure. (I have yet to read it, so I don’t know exactly how that plays out; I’ll get back to you once I finally get around to reading it.) If you’re up for some beach reading, Joseph Frank’s massive, 5-volume biography covers this very well.
      http://press.princeton.edu/titles/8976.html

      A more brief, but interesting read: “Lying Awake,” a novel by Mark Salzman, about a nun who begins having ecstatic visions, perhaps encounters with God, accompanied by headaches, and later a seizure. Determining the source of these visions, and the right course of action, presents a great philosophical conflict, which the author purposely does not resolve. Well worth checking out.
      http://books.google.com/books?id=yd_vw9KXlOYC&sitesec=reviews

      Take care, and thanks for your kind and interesting reply.

  • [grs]

     Fef, can you shed some insight on febrile seizures and what process may be going there? My oldest daughter has had two that we’re aware of (we suspect she’s had more). I’ve researched the cause and seen them occur and the after affect on her (one she needed valium the other she came out of in a few seconds).

    But I have no idea what she experienced on her end. One night when she was 3 while I was putting her to bed before we knew of her seizures, she told me her brain was wavy and jumpy. As far as we know, she didn’t have a seizure that night, but in hindsight what an amazing way for a 3 year old to communicate potential onset.

    Her actions synch with a mix your descriptions between a complex and partial simple. Didn’t know if febrile is its own beast separate from this discussion.

    • [Fef]

      Febrile seizures may be partial or generalized. There’s a good chance she will never have a seizure independent of fever, and she may never have another seizure even with subsequent fevers; let’s hope for the best.

      The way I like to look at it, anyone can have a seizure, if the conditions are there (if neurons in the brain are irritated or become hyperexcitable). A single siezure does not define epilepsy, especially if it is provoked (e.g., by a fever, or some other insult or irritating event). Epilepsy is most minimally described as a disorder of recurrent, *unprovoked* seizures.

      If you were to, say, inject my veins with some nasty bacteria; deprive me of sleep; let me get a fever of 104.5 degrees F; watch as I get dehydrated, and my sodium, chloride and potassium levels go all out of whack; and then give me the wrong antibiotic; well, each of those insults would make my neurons more irritable and push me closer to the threshold where some of those neurons begin to inappropriately, rhythmically, repetitively, misfire. If nearby neurons are excitable enough, they might also get recruited into this abnormal activity, and so begins the seizure.

      Children’s brains are rapidly generating and pruning neurons, and the trillions of connections between them are rapidly rewiring themselves. So throughout this stage of development, kids just naturally live closer to that seizure threshold. So it doesn’t take as much insult to nudge them over that threshold and begin a seizure.  Statistically, febrile seizures are pretty common, and most kids who experience them do NOT go on to develop actual epilepsy.

      The wavy, jumpy brain description I’m not sure about. (My 4-year-old daughter throws descriptions like that around a lot, but her daddy’s a brain doctor, and she likes to puzzle on about what I do all day.) Might be just parasomnias, which are within the normal bell curve of childhood development. If a family came into my office describing that as a recurrent event, since I’m a worry-wart by nature, I might consider an overnight ambulatory (at-home) EEG. But there are a lot of variables, and it would depend on a fuller history, exam, etc. I think this is worth her following up with a pediatric neurologist, but I also think the statistics are in her favor. Hope this helps.

• [Russell Barth]

  most-watched seizure video on the net (1,000-1900 hits a day) http://www.youtube.com/watch?v=MRZY2a2jnuw

  total of 2.3 million hits…

  Story about the other video just like it
  http://www.guardian.co.uk/society/2008/may/23/epilepsy.youtube

• [Fef]

  Sorry about the novella above; once I get started, you know….

  BUT, ONE MORE THING:

  For anyone witnessing a seizure: Do NOT put a “bite block,” or foreign object, or hand, or whatever, in the mouth of someone having a seizure. There is a myth which refuses to die, that you need to put something in their mouth to keep them from choking or “swallowing their tongue.” NOT TRUE! To my knowledge, no one has ever swallowed their tongue from a seizure! Attempting to force something in their mouth will only add oral trauma to their trouble, as well as risking a nasty bite on your hand; this has sometimes also resulted in the person having a seizure also aspirating broken teeth or foreign objects, leading to complicated pneumonia.

  (I’ve been amazed to find that even staff at some hospitals persist in doing this.)

• [Charlie B]

  I get migraines, my cow-orker is epileptic (spastic if you’re reading this in Scotland).  We’ve often compared the experiences.

  He’s asked me to put his wallet in his mouth if he has a seizure, because his teeth are brittle from epilepsy medication.  If one of his teeth breaks off in the leather wallet, it can possibly be repaired; if they shatter against each other and half the shards go down his throat and the other half on the floor it’ll be a much more difficult and less satisfactory replacement.  Or so he says, anyway.

  He also says he can’t get a drivers license without a prescription for tooth-weakening medications.

  Edit: Meant to be a reply to Fef’s excellent posts above, sorry.

  • [Fef]

    I’ve heard of folks trying the wallet-bite-block for seizures, but I’ve never seen any report of whether it’s really effective. Sounds dubious to me.

    I think that once you (a) recognize a seizure is commencing, (b) extract wallet from your seizing co-worker’s back pocket, and (c) position wallet over mouth, while he’s possibly half-in, half-out of his chair in abnormal posture, etc; by that time he’s likely well into the tonic phase of his convulsion. So skeletal muscles all over his body will be flexed like crazy, including the powerful masseter muscles clenching the jaw shut. Trying to overcome that and wedge an object between his teeth would likely mean greater odds of oral and dental injury.

    Yes, he could break teeth from that jaw clench alone, but trying to correct for that, unfortunately, is usually ineffective and can be counterproductive.

    More effective early intervention may be gently guiding him onto the floor, away from furniture with sharp edges, glass tables he could smash into, stairs he could fall down, etc. Placing him on his side will decrease odds of aspirating anything in the mouth.

    Oh: And check the clock. Sense of time is always skewed when watching someone seizing. And it’s valuable to have a plan in place depending on how long the seizure lasts. Based on your colleague’s experience, should you call an ambulance for any seizure event? For a seizure lasting over 5 minutes? This would be good to discuss.

    And please let your colleague know: While there is no medicine without at least potential side effects, not all antiseizure meds are associated with tooth-weakening or loss of bone density. A lot of the older generation ones are (also weight gain, sedation, neuroendocrine changes, and so on), but some of the newer ones have kinder side effect profiles. After a first seizure, lots of docs will just start a patient on an old tried-and-true like phenobarbital (Dilantin, Epanutin), which has been in use since the 1930′s. And once a patient is on a maintenance regimen, subsequent doctors often just keep maintaining that status quo. Switching meds can be challenging but may be worthwhile. I strongly recommend he consult with a neurologist to reassess current medication options. He does not necessarily have to give up his teeth, or develop osteoporosis, as a trade-off for effective seizure control.

    • [Charlie B]

       Thank you for the advice, I will use it!

      • [Fef]

         (Oops — I meant phenytoin, not phenobarbital, above. How embarrassing…)

• [Roose_Bolton]

  I’ve never been diagnosed with epilepsy (of course, I also haven’t seen a doctor in about 30 years or more), and I’ve not been aware of (or been made aware of) having any seizures during daylight hours, but the description she uses makes me think that I may be having some sort of seizure every so often at night, just after falling asleep. I’ve been chalking it up to night terrors for years. Black hole, spasms, out of breath and confused when I come out of it. Interesting.

  • [Fef]

    Hm. Could be seizure activity (certain stages of sleep are associated with more epileptiform activity), but this could just as easily represent parasomnias or other sleep disorder. I’ve seen folks I suspected were having nocturnal seizures, only to find that they had obstructive sleep apnea. (And sleep apnea does not exclusively affect people who are obese, or with thick necks, etc.)

    Professional bias aside, I do think it would be worth your while to go see a neurologist and get it checked out.

  • [Antinous / Moderator]

    Does it happen repeatedly?  I occasionally have something that I call the startles.  I’m pretty sure that it’s an off-brand vasovagal response.

    • [Roose_Bolton]

      It actually hasn’t happened for a few months now, and I noticed it would usually happen when I was completely exhausted, and would fall asleep within a minute of head hitting pillow. It just feels like I’m in a state of mind where I’m aware what’s ahppening, but I can’t bring myself out of it no matter how much I struggle. It’s this struggle to regain conciousness which is so physically/mentally exhausting.

• [Maureen]

  I was sitting behind someone on an airplane and he had a seizure while we were in the air. It was awfully scary. There was a med student and an EMT on the plane and they gave the guy oxygen and walked him to the bathroom after a while. However, as soon as we hit the gate, some on-duty paramedics came on board and walked out with the guy. I imagine they took him right to the hospital. 

  I kind of doubt they would have let her go home by herself (even in a cab) if she was landing in the US.

• [Stef of Ing]

  My father was SEVERELY epileptic at a time when the only treatments would pretty much turn him into a zombie, sometimes there would be a pre-fit “aura” and the fit itself would start with his head twisting around as if he’d seen someone creeping up on him and would often be followed by a rising howl – then it would get worse.
  Religion would have had him killed, science eventually calmed it and lessened its effects.

• [Stewart Berntson]

  I’m epileptic and prone to grand mal seizures; my own experience involves going about my business and then *poof* teleporting into a chair or lying on the floor, with people standing around looking concerned and (usually) a dislocated shoulder or broken nose, and every muscle in my body feeling like I’ve gone through a wood chipper.