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I have been meaning to write this.  I have written a number diaries on epilepsy.  I have well controlled Left Temporal Lobe Epilepsy.  Phenytoin controls the seizures, but I like to take as low a dose as possible.  Very rarely, I will experience a seizure that is not extremely debilitating.  I experience no loss of consciousness but it carries with it certain interesting characteristics which give me information about what functions of my brain are being primarily impacted.

I share this because I would like to read it.  I am never certain as to what happens in the minds of others, but it seems like this is one that I would be interested to read.  

I hope it's informative, and thought provoking.  

The assignment I gave myself-

Describe, in detail, what it is like to have a simple partial seizure.  

Update- I feel the need to clarify here that each individual may experience something much different.  In the comments, you will see a description by someone with a similar diagnosis.  The experience is much different.

It's like driving in your car towards the coast.  You can't see or feel any of the coastal scenery just yet, but when you put your nose out the window, you can feel the ocean hanging, suspended in the air.  

It is imminent.  

Here we have this one dishonorable neuron.  Yes, it's true that neurons are electrically excitable brain cells.  But, damn, does this little fucker really have to act this way? He just starts getting too amped or something, and boom, the whole crowd begins to erupt in some sort of mutual misfiring party.  

"Woot! We are gonna shut this place down!"

At any moment, however, the Phenytoin Anticonvulsant squad will shut THEM down.

Making preparations.  

Dread is magnified apprehension.  I feel a sense of dread.  There is really nothing to be done.  The only preparation to make is to feel anxious.  

A seizure like this is something that is more likely to occur in a crowded, bustling location, or in situations of stress.  As a result, much of the experience is remembered through periodic images.  Flashes of flesh and skin.  It's like watching old security footage.  

First, there is that oncoming rush of silence we associate with a state of extreme focus. A sense of closing.  When you're sleeping, and you wish to act in a dream, but you are, for some reason, completely immobilized.  I wonder if it's like "loud" for the deaf.  

Next, it's as if I am a diver, or an astronaut.  I have just been transported to a radically new environment.  I made it.  Relax.  Have a look around.  In a recklessly irresponsible sense, if it were a drug that did this, it might be pretty cool.   One may as well enjoy the experience.  It's like getting stuck in some weird town for a layover of more than a day.  For some reason, the Ikea in this town here looks a little different.  

Neural Tourism.  

But, the map and clocks are broken.  

The "meat" of the experience is in the apparent shutting down of any functional ability to recognize location and time in any meaningful visual sense.  When we think about the places we go, we seem to carry a map of the location.  Normally, I assume, the map is activated and coordinated with the visual stimulus, and there is no need to think about it.  

It's as if I'm looking at recorded video, and the video is having the problem of blinking out intermittently.  The retention of this will be as a series of striking and memorable visual images, separated by some gaps.  

It always reminds me of melodic tinniness of the opening violin part to the Camper Van Beethoven song, "Tania."

Oh, my beloved Tania
How I long to see your face
Photographed in fifteen second intervals

It seems as if it is the visual areas that are experiencing unexpected and spreading dysfunction.  Despite this, it is the visual images left behind which provide the most profound and memorable aspects the experience.  

Each image I recall was pasted onscreen like an informative graphic in an instructional video.  

Time is inextricably linked to location.  It is time and location which are unreachable to me.  A clock is nearby.  The picture on the face is useless.  Yes, it's 2.  That much I know.   Soon, it seems, I will need to renew my comprehension of time's relation to the clock.  The previous moment, I was fully aware of that, but now, I move my eyes to other parts of the room to search for a secondary clue.  Ah, now I remember what's happening.  I still don't "feel" the time, but I'm beginning to get an idea.  

But where am I?  Regardless of my familiarity with the location, the map-context connection is down. Honestly, this has happened more than once- "Sir, where's your bathroom?"

"I don't know."

A different time, and now the image is high def, and maximally zoomed.  A tilted (artsy, huh?) green street sign- McGraw Street!  Continue flailing Southward!

If I am on my feet, I am inevitably treated to a stark and blaring image of my bed. It's not always my bed, but I know it's my bed.   Just like in a dream when every object is automatically imbued with a full life of context.  

The map-context link is still down, there is no context match to that image.  It comes frustratingly slowly back online.  This is not the place where my bed is kept, please stop flashing that now.

Still a different time, and this time, I stand up and begin to operate in object lesson activism mode.  If it is a comfortable enough moment, I let my companion(s) know what is taking place.  Verbal pacing to ward off the time.  After a few moments of idle chatter, the deluge of the rolling epileptiform  waves has begun to subside.  This moment is washing out.  It is taking the dread and the anxiety with it.  

At some point within these moments, something like exhaustion begins to emerge.  The joyously misfiring neurons just don't seem to be able to carry on so crazily, anymore.

Drowsy relief.  

Mon Mar 17, 2014 at  5:51 AM PT: I sure do love the community spotlight folks.  You guys always make my day when you upgrade my diaries.  Thanks.  


Originally posted to otto on Sun Mar 16, 2014 at 05:23 PM PDT.

Also republished by Epilepsy & Seizure Awareness Group and Community Spotlight.

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Comment Preferences

  •  One thing I was always struck by (83+ / 0-)

    One opening line I read to an epilepsy book informed the reader that the epileptic will always live with the possibility that a seizure could happen at any moment.  

    Even if, the author said, that person has been seizure free for years and years, it is always a possibility.  As a result, many people don't feel comfortable with driving, even if their condition, and their state allows for it.  

    I sometimes catch myself, when alone, wondering if I had somehow missed some significant amount of time passing.  

    It makes me think of Fox Mulder.  

    Streichholzschächtelchen

    by otto on Sun Mar 16, 2014 at 05:22:47 PM PDT

    •  I would add one thing (19+ / 0-)

      Deja-vu is a significant part of the seizure experience for many epileptics, myself included.

      And I would amplify the self-doubt and fear of discovery epileptics have to deal with.

      I recently passed my first year off Phenytoin without a serious seizure, only episodes of momentary disorientation or time loss followed by deja-vu.

      It's been a good experience for me to be drug-free, not just in the practical sense, but gradually losing the side-effects of Phenytoin and some change in heightened awareness (whether actual or imagined, is difficult to say since I started off very apprehensive) and also greater presence of mind, which I think is something you speak to well ... where does that time/experience go? Hard to explain if you haven't experienced it, but I get your meaning exactly: The truth is out there.

      And it's been a difficult experience for my wife, that had to deal with the bad outcome of my previous attempt to goo off drugs about 10 years ago, but finally, it seems I may move on without the drugs for 30+ years.

      T+R, excellent diary.

      No one is coming to save us, the future is in our hands.

      by koNko on Sun Mar 16, 2014 at 09:48:12 PM PDT

      [ Parent ]

      •  As a matter of fact (10+ / 0-)

        When I first started experiencing seizures, I actually wrote them off as a powerful deja vu.  

        That's conveyed in the sense of imminence.  It's happening, and I know it.  

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 05:27:23 AM PDT

        [ Parent ]

        •  Not surprising (6+ / 0-)

          As a child I experienced various symptoms that went unrecognized until my late adolescence, which is quite typical, and once diagnosed and interviewed by a neurologist, I had so many "yes" responses to his questions he told me "you are a textbook case".  Several other people I have met online have quite similar stories about childhood symptoms.

          How old were you when diagnosed?  

          I was 17, which is a bit late.

          No one is coming to save us, the future is in our hands.

          by koNko on Mon Mar 17, 2014 at 08:06:18 AM PDT

          [ Parent ]

          •  21 (6+ / 0-)

            I think I really first began experiencing them when I was working in a restaurant.  I thought that it was coffee or something.  

            I recall one moment when I was waiting on a table of two women, and then one of them said, "Are you alright?"

            I didn't think much about that until later.  

            Eventually, a doctor in the ER (I had no insurance), suggested that I had a reaction to dehydration from alcohol.

            A couple months later I had another, and the proper tests were run.  

            Streichholzschächtelchen

            by otto on Mon Mar 17, 2014 at 08:10:08 AM PDT

            [ Parent ]

          •  10 (10+ / 0-)

            It was my 10th birthday and my dad was putting together my new bike. I was helping him, giving him the tool he needed and whatnot. He asked for something and I didn't respond. He called my name several times and I didn't do anything. Finally I snapped out of it and did what he wanted.

            He told my mom about it and she was somewhat familiar with the symptoms due to a graduate class she had taken for her masters in special education. We were off to the doctor soon and got the referral to the neurologist.

            I never was allowed to ride my bike on the street. Only in cul-de-sacs and gravel driveways. I had to walk it down the main road until I could get it back to my gravel driveway.

            •  There must be a spectrum (4+ / 0-)
              Recommended by:
              koNko, JVolvo, Dave in Northridge, otto

              of manifestations related to epilepsy, then, that I, as a non-sufferer, have been ignorant of all of my 50+ years. That surely must make diagnosis difficult, not to mention the sporadic nature of seizure onsets.

              I appreciate very much the diary and the comments I have seen to date and I apologize for being previously ignorant of what sufferers must go through on a daily, hourly basis. I'm sorely tempted to throw in a snarky "Hey, free trip, eh" line but I am sure those unbidden excursions from the world are not at all welcome.

              I had no idea...

              "It may be true that the law cannot make a man love me, but it can keep him from lynching me, and I think that's pretty important." Martin Luther King Jr.

              by Arabiflora on Mon Mar 17, 2014 at 10:51:36 PM PDT

              [ Parent ]

              •  It can be difficult to diagnose (5+ / 0-)

                Probably what has improved the situation is the greater availability of cheap diagnostic equipment and a better recognition in the medical profession that some symptoms merit a closer look, but it's true that some of the symptoms such as disorientation are common for a myriad of conditions.

                So in many cases including my own and others described here, until you exhibit more serious symptoms, it goes unnoticed.

                Some forms of epilepsy peak in the period from mid-adolescence to mid/late 20s (such as mine) and the severity and frequency becomes more obvious then. When I was 17 I had my first known Tonic-Colonic seizure, which is kind of difficult to ignore, but once diagnosed, as I learned the symptoms, I immediately knew I had some symptoms quite frequently in childhood but never thought anything was wrong - it was that frequent.

                So those unfamiliar can be excused for not recognizing what is going on in someone else's head without obvious outward signs.

                The other thing is, epileptics seldom broadcast their condition to the world at large because of general ignorance and prejudice, and a desire to be treated as normal (which in turn, becomes self-reinforcing of the problem).

                The fact that we can't totally control this makes us want to control the terms of engagement, so to speak. "Im OK!"

                So this discussion may be a little window into this experience.

                I'm pretty certain you know or have met some people who are epileptics that you would never suspect, because it's under control and/or their little secret.

                It's kind of like buying a red car: until you do, they are just part of the traffic; after you do, suddenly they are everywhere.

                No one is coming to save us, the future is in our hands.

                by koNko on Tue Mar 18, 2014 at 03:31:51 AM PDT

                [ Parent ]

              •  I learn new stuff (1+ / 0-)
                Recommended by:
                otto

                about this all the time! Just in the last few months I've heard the term "the epilepsies" because there are just so many types. The kind that the CBD oil is so very effective for in kids is called Dravet syndrome, and it's just incredibly devastating. No comparison to the little blinkouts I had when I was young.

                I'm very thankful for this diary and the comments. We're all learning new things.

      •  One other thing (6+ / 0-)

        I am very curious as to the specific differences you feel when off of phenytoin.  

        I really can't imagine what it's like to not be on it, so I can't really identify any deficits, but I'm sure they exist.  

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 05:28:45 AM PDT

        [ Parent ]

        •  It has been an interesting journey (10+ / 0-)

          After being on phenytoin for just over 30 years, accepting it and living a pretty normal life, my doctor recommended I go off since for more than 5 years my EEGs were showing very low response particularly under breathing stress tests, which were previously a strong trigger for me.

          I had tried several years earlier and failed, so I was somewhat apprehensive, but decided to try as my 50th birthday present to myself.

          My initial reaction is hard to judge, because I was pretty fearful and anxious most of the time, which I would attribute to my emotional condition rather then a drug depravation related response. In the back of my mind I felt "It's going to happen" and for a time, I think I would even over-react to normal body signals like fatigue. Honestly, I was fearful.

          In fact, within about 72 hours, your blood serum level will be so low that whatever remains is not at all therapeutic, so logically, after a week or so you should be "clear", right?

          But several months later, after calming down and adjusting to NOT depending on medication, I became aware of what I think are 2 changes, greater sensitivity to temperature and pain, and greater presence of mind or focus.

          I discussed this with my doctor and he said "possible" but that the reaction to withdrawing medication is somewhat individualized; however, one effect of phenytoin is (like aspirin) to slightly dull some pain response so that is probably attributable to withdrawal.

          Another change I notice related to presence of mind or awareness, is I feel more sensitive to other peoples emotional states or more observant of that.  But I wonder if this is because I feel a bit less defensive and protective of myself, which I think is an "occupational hazard" of being epileptic - we have these defensive walls and a secret life in many respects, and I definitely feel as if I've been a bit liberated from that.

          You know, to live "normally" as an epileptic means, to some extent, living with a measure of self-imposed discipline and routine: do this and don't do that; in some ways, leading a "quiet life" if you know what I mean. Well, I haven't really changed that and don't think I should, because, the risk is out there, and I'm a husband and a father so I will continue to manage my life habits. But ... something of a weight has been lifted. I do feel that.

          Probably more of this is psychological than physical, but I definitely feel the "skin response" as I call the temperature and pain sensitivity, and some degree of heightened awareness are some sort of physical change.

          Doctor says "possible". Well, that is a doctor for you, LOL. Met a few in my time.

          Thanks for your good diary, it seems to have gotten a good response too.

          No one is coming to save us, the future is in our hands.

          by koNko on Mon Mar 17, 2014 at 08:53:11 AM PDT

          [ Parent ]

      •  Sorry I asked this question below... (4+ / 0-)
        Recommended by:
        koNko, otto, smileycreek, RiveroftheWest

        I missed your post for some reason so didn't see the deja-vu reference until I had already asked the question below. An epileptic friend of mine from college days would know her seizure was coming on because everything would slow way down, and she would see every person and action clearly playing out all around her, and when she finally would come to (from the standpoint of her husband) she would see the exact same thing happen again, real life, real time. She said the seizures were manageable, but she could never get used to the ability to see into the future. Is this what you are talking about? Can you describe your experience, as I am genuinely interested?

        •  Yes, that is common (3+ / 0-)
          Recommended by:
          otto, Neevah, RiveroftheWest

          It's a bit hard to describe, but it's a profoundly strong feeling of deja-vu when it's happening, and perplexing because, on one hand you have heightened awareness of what is happening but at the same time, helpless to control it or communicate.

          Recovering is initially slow process where you struggle to regain full consciousness and understand where/who you are, and as Otto noted, you will feel very irritable or agitated. Then you get to a point where you get clear on what happened, but will feel exhaustion and want to sleep. A severe tonic-colonic seizure is quite physically stressful and many people will have muscle pain afterward. In my case, my left side (right brain) was more strongly affected.

          No one is coming to save us, the future is in our hands.

          by koNko on Wed Mar 19, 2014 at 10:59:05 AM PDT

          [ Parent ]

        •  This is a fascinating and useful window (2+ / 0-)
          Recommended by:
          otto, RiveroftheWest

          into other people's experiences.

          Welcome from the DK Partners & Mentors Team. If you have any questions about how to participate here, you can learn more at the Knowledge Base or from the New Diarists Resources Diaries. Diaries labeled "Open Thread" are also great places to ask. We look forward to your contributions.

          Rick Perry doesn't think there should be a minimum wage
          and Ted Nugent doesn't think there should be a minimum age. Merica
          ---> @LOLGOP

          by smileycreek on Wed Mar 19, 2014 at 01:21:06 PM PDT

          [ Parent ]

  •  Have you tried Cannabidiol (CBD) yet? (6+ / 0-)

    It seems to work well for children with severe seizure disorders.

    Really don't mind if you sit this one out. My words but a whisper -- your deafness a SHOUT. I may make you feel but I can't make you think..Jethro Tull

    by RMForbes on Sun Mar 16, 2014 at 05:52:02 PM PDT

  •  Partial Complex. (9+ / 0-)

    I call it Tanglefoot. Lamictal in small doses works for me.

    •  I think I'm lucky (5+ / 0-)

      I got started on the easiest stuff.  I have heard bad things about some other drugs.  

      Streichholzschächtelchen

      by otto on Sun Mar 16, 2014 at 06:28:47 PM PDT

      [ Parent ]

      •  There are many kinds of seizure. (7+ / 0-)

        Some require really scarey drugs to control.

      •  Originally, I was on phenobarb (5+ / 0-)

        Kind of lost 2 years because of that, but at the time, it was a common treatment in Asia because Phenytoin was not so available then. When I did change my initial dosage was 400mg, which continued for more than 10 years, which is a pretty high dosage with lots of side effects. Later I was reduced to 200mg, a more standard dosage, and yeah, comparatively, it is like aspirin.

        Very profitable drug, even with cheap, high quality generic Phenytoin available, Dilantin still seems to be universally prescribed in the US and Europe, while in Asia, generic rule.

        My last prescription cost (in China, where it is on the mandatory generic drug list) was about US$2.50 per 100 100mg tablets, a 50 day supply. Dilantin is probably about US$ 50 for the same. Cheap, in relative terms, but pretty profitable.

        No one is coming to save us, the future is in our hands.

        by koNko on Sun Mar 16, 2014 at 10:04:03 PM PDT

        [ Parent ]

    •  300mg lamictal, 2500 Keppra + 2 brain surgeries= (20+ / 0-)

      Seizure Free for the first time in 23 years.

      Since I was 7 years old I've tried Tegretol, Depakote, Neurontin, Topomax, Lamictal, Keppra, Ativan, Xanax. Nothing worked. It was horrible.

      When I was 17 my doctor brought up the possibility of brain surgery, to which I said Hell. No.

      A few years out of college I just couldn't take it anymore and opted to let somebody crack my skull open ::shudder:: and remove an inexplicable piece of scar tissue. It worked!...for about 4 months. Apparently the surgeon was too conservative with the recision. ARGH!!!!

      A year and a half later I was back under the knife for another  9 hour surgery. Seriously? I'm letting these people pick at my frickin brain again? I must be crazy—or desperate.

      2 and a half years have passed and omfg I have a car! I get to go to the grocery store whenever I want like a big girl.
      God awful LA traffic? Who cares, I can drive! Oh, and the not living in constant fear thing? That's pretty cool too. I hope to god it's permanent.

      •  I am amazed and happy for you (9+ / 0-)

        What an incredible change in your life!  

        I could probably just tell you how happy I am for you a hundred times.  

        I don't wish the problems on anyone, and I shudder at the possibility that my children would experience seizures.  

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 05:31:33 AM PDT

        [ Parent ]

      •  I am so curious about your surgery (7+ / 0-)

        Having once considered the possibility but learning after much testing that I was not a good prospect, I stuck with the drugs and in my late 20s, when my symptoms subsided to a point I could live a pretty normal life (minus the driving, something I will never do) the possibilities were no longer attractive.

        But I have followed, with interest, the advances that have been made for cases like yours and I'm really curious how it affected has your consciousness - if at all - and how you got up your guts to do it.

        There had to have been some scary moments of truth along the way.

        If you care to share, please do, I think lots of people would be interested.

        No one is coming to save us, the future is in our hands.

        by koNko on Mon Mar 17, 2014 at 09:22:14 AM PDT

        [ Parent ]

        •  For years my doctor didn't know why I had epilepsy (4+ / 0-)
          Recommended by:
          otto, christianlsv, koNko, WakeUpNeo

          In 2006 I had an MRI and an EEG (last time I did that was the late 80s). This time the doctors were able to find scar tissue on my right temporal lobe, pinpointing exactly where the seizures were happening.

          In terms of cognitive abilities I think mine have actually improved. The combination of heavy meds and seizures were absolutely awful for my memory. Although my memory is still far from what I wish it would be, I'm able to process and retain information better. I'm sure getting off these meds would be immensely helpful as we'll.

          There were definitely times I was afraid. Especially when I stumbled upon an article about a French horn player who was unable to read music after brain surgery. I sing opera. Not being able to read music would be devastating. FYI if you're a singer and need to be intubated, TELL THEM. While making small talk with the anesthesiologist en route to the operating room I mentioned I was a singer. She took extra special care not to damage my vocal cords. Thank god I said something.

          Ultimately my attitude was 'fuck it.' Sure there's a chance I won't survive or there will be complications, but I can.not.live.like.this.any.more.

          I was tired of waking up every morning thinking please please please don't have a seizure today; tired of being at the mercy of other people; tired of being deemed untrustworthy on stage; tired of being a liability; tired of never going to parties or concerts because my house wasn't conveniently located for people; tired of being dependent; tired of being afraid. I had to do something.

          It was either try a 9th, 10th, 11th medication, or brain surgery. I chose surgery twice.

          My two regrets: 1) I have terrible TMJ from the surgeon slicing my masseter to get to my brain—super annoying but manageable. 2) I'm kicking myself for not having the guts to do it sooner.

          •  Thanks. (4+ / 0-)

            Appreciate you sharing that.

            At the time I considered surgery I was also struggling, trying to complete grad school but facing the frequent personal set-backs. Fortunately, in my early 30's my condition got under control as long as I took medication so I was kind of a late bloomer.

            MRI has come a long way and is an incredible diagnostic tool. When I was considering surgery they used X-ray and it was necessarily limited. I had an MRI before going off meds and found it really fascinating - the ultimate selfie! My wife poured over the image slices like she was a brain surgeon, it was really funny. "Find anything?" said I. No further comment.

            I hope your cure is permanent, life can be good.

            No one is coming to save us, the future is in our hands.

            by koNko on Wed Mar 19, 2014 at 11:16:12 AM PDT

            [ Parent ]

      •  My sister had brain surgery for epilepsy (4+ / 0-)
        Recommended by:
        otto, FloridaSNMOM, outragedinSF, JVolvo

        She travelled from the U.S. to the Montreal Neurological Institute,
        which pioneered the operation.  The surgery was done in 1985
        and was a complete success;  she's had no seizures since.
        She is quite fortunate:  another woman who lives in our area,
        who just happened to be having the same surgery at the same time in Montreal, and who become a close friend,  was not so lucky.  She had a grand mal within a week or two of the operation and over the years has become more and more dependent on drugs which have greatly impacted her life in lots of not so good ways.

      •  Surgery in 1984 (9+ / 0-)

        This subject interests me greatly, and I'm a C-Span junkie too so I'm responding to your post.

        Back in 1984, I underwent a successful left temporal lobectomy at Children's Hospital in Boston.  (Is that the earliest surgery mentioned in this discussion group?) I was 27 years old and had been a patient there since I was a child.  Prior to the operation, I suffered from complex partials and grand mals. The seizures would occur randomly, but I was most prone to them when:

        1.  I didn't get enough sleep
        2.  Subjected to rapid light "activity" (like the strobe-light part of an EEG)
        3.  On an airplane during take off or landing (Complex partial or grand mal almost every time I flew - pressure change affecting blood flow in brain???)
        4.  I forgot to take my medicine

        I've been seizure-free since the surgery.  Several years after the surgery I flew somewhere and felt the take-off and landing was the ultimate test!

        After the operation, I was able to go to college and got a degree in engineering. And I was weaned off my anti-convulsant medication gradually - I think it took about 10 years.

        I am a very lucky lady.......Hopefully, you are too!

      •  I've been on all of the above myself (3+ / 0-)
        Recommended by:
        christianlsv, otto, koNko

        since childhood.

        Right now I'm on a combo of 3000mgs of Keppra, and 20mgs of Klonopin, waiting to see if insurance will approve a visit to the Cleavland Clinic for me to meet with a surgeon.

        The meds are helping, but really not "that" much... My seizure activity is less than the other meds, and combinations they've tried, but I'm still having seizure activity, and afraid to leave the house most days.

        The last day I worked was Thanksgiving Day, 2013... I had a  tonic clonic that lasted over 10 minutes while working.

        I work at a casino, and Thanksgiving is one of busiest days of the year... Hundreds of people watched me flop around, lose all bodily control, and while I'm going out of my mind with boredom, I'm also sort of freaking out having to see all those people again when (or if) I return to work.

        I was born epileptic, and my place of employment, and coworkers were fully aware of my condition... but "knowing" something, and "seeing" it are two COMPLETELY different things.

        I learned early on that once someone sees ones... They never look at you the same again.

        The thing that really sucks is that I'd thought I'd outgrown it... or at least had it under control with medications, because it had been years since I'd had a seizure.

        Then BAM! It's like puberty all over again, scaring the hell out of people, scared to go around people myself, and an endless stream of "We aren't certain", or "We don't know" from my neurologists, with no "fixing" it.

        It's been a rough 4 months, things seem to be escalating with no apparent cause, and now I'm just hoping that I can get approved for surgery, and that it will help, because this... This is just pure hell, mentally, AND physically. :-(

        This diary really perked me up, it's nice to have a reminder that I'm not the only one... and your comment REALLY perked me up, because I've never known anyone that's had surgery for epilepsy, so it's encouraging to kind of/sort of "know" someone now that's had it, and had some success with it.

        I've been pretty scared about the possibility of surgery, but I also know I can't go on like this, either... It's like limbo right now, and really unpleasant.

        "It is through disobedience that progress has been made, through disobedience and through rebellion." Oscar Wilde, 1891

        by MichiganGirl on Tue Mar 18, 2014 at 06:33:29 PM PDT

        [ Parent ]

        •  Hey Michigan Girl (3+ / 0-)
          Recommended by:
          MichiganGirl, christianlsv, koNko

          I feel like I should express my level of concern and respect for you.  

          I don't know if I would be correct for surgery, but I would do it if it meant being off of medication.  

          Thanks for sharing your story.  It's very painful for me to read.  

          I am grateful to read that you had your spirits lifted, and were able to experience renewed optimism from that comment.  
           

          Streichholzschächtelchen

          by otto on Tue Mar 18, 2014 at 06:51:05 PM PDT

          [ Parent ]

        •  To MichiganGirl: (4+ / 0-)
          Recommended by:
          MichiganGirl, christianlsv, otto, koNko

          I truly sympathize with your situation -

          I hope you are able to get second (and third) opinions at the Cleveland clinic.

          Back in the 80's when I had the surgery, I was an in-patient at the hospital for several days for extensive testing to see if surgery was an option.  The doctors need to zero-in on the precise area of brain that short-circuits. Unfortunately, not all "sources" can be pin-pointed, and not all locations are operable.   (I think neurologists call the "source" the focus or foci.)

          About surgery: If it's an option, don't be afraid.  Doctors/neurologist/neurosurgeons will not perform such an operation if the probability of success or major improvement is not high.  

          •  Well UofM, Chicago, and Mayo have already (2+ / 0-)
            Recommended by:
            otto, koNko

            said they can't be of any help to me, so I'm getting toward the end of the list with the Cleavland Clinic. I have a congenital birth defect in my brain, they aren't absolutely certain that is what causes my seizures, but it makes a lot of "typical" treatments not possible for me.

            Reading forums it seems the Cleavland Clinic is the place to go, so I'm hopeful.

            "It is through disobedience that progress has been made, through disobedience and through rebellion." Oscar Wilde, 1891

            by MichiganGirl on Tue Mar 18, 2014 at 08:09:29 PM PDT

            [ Parent ]

        •  I had been told I might outgrow seizures (3+ / 0-)
          Recommended by:
          otto, MichiganGirl, koNko

          since I was in 8th grade. I was so sad when I turned 18 ('grown up') and still had seizures regularly. "Outgrowing seizures" was terrible false hope.

          If you're a good candidate for surgery I highly recommend it. It's really not as awful as it sounds—at least my temporal lobectomy wasn't.

          Basically, you show up at 4am so you can check in and get prepped. It'll probably be awhile before you're wheeled into the operating room. I think I waited 3 hours the first time. I guess the surgeon has to get coffee or red bull or something.  

          When they're finally ready to start, the anesthesiologist tells you to count backward from 10. And 3 seconds later BAM you're awake after 9 hours of surgery. The nurse asks on a scale of 1-10 what's your pain level—ever the smart ass I said 20. Fear not, there's morphine and plenty of it!

          I was in the hospital 5 days. Biggest annoyances:

          1) not being able to sleep on my side because the area of incision was expectedly sensitive.

          2) pesky nurses waking me up at 3am to check my blood sugar levels. I'm fine go away!

          3) that damn IV they put in your wrist. Head pain is manageable with medication. The IV itches.

          In other words, don't let fear stop you. I'd take a few days of discomfort in the hospital and some manageable, temporary head pain over a lifetime of seizures any day.

          Go for it! It's worth it.

  •  I've only seen one Grand Mal (9+ / 0-)

    I put my foot under his neck to prevent concussion. When it was over someone called an expensive ambulance needlessly.

    •  A very painful case. (9+ / 0-)

      A young Ensign fell from a communications mast on a destroyer. He suffered an uncontained skull fracture and was going home in a body bag to Annapolis when he moved.

      The pilot pulled pitch and the trauma team was ready on the roof at Bethesda. I've never met anyone who could walk behind so much barbituate.

    •  I had a Grand Mal (4+ / 0-)
      Recommended by:
      otto, FloridaSNMOM, koNko, sawgrass727

      I was locked in a Porta-Potti at the time.  Not good.

      ObamaCare! Sign-up by phone: 1-800-318-2596

      by mwm341 on Mon Mar 17, 2014 at 05:29:28 AM PDT

      [ Parent ]

      •  I'm sorry (4+ / 0-)
        Recommended by:
        FloridaSNMOM, koNko, sawgrass727, Creosote

        In the spirit of kinship, I did chuckle.  That would suck.  

        I recall once, I was sitting on an airplane, returning from Germany.  I was cutting a piece of ham.  

        And then.

        I was telling the flight attendant in first class to stop waking me up, because I was sleeping.  

        It's still the only time I've ever flown first class.  I wish I could remember it.

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 05:50:13 AM PDT

        [ Parent ]

      •  I lived in a small town. (2+ / 0-)
        Recommended by:
        Gorette, otto

        When I was 13 a new Kmart opened, and it was like the biggest thing to happen in town in decades...

        Anyway, it was within walking distance from my house, my parents were working, and I needed tampons, so I walked on over to buy some...

        And then had a tonic clonic in the feminine hygiene aisle, somehow managing to pull the shelves down, so flopping about, pissing myself, foaming at the mouth, the whole bit, among hundreds of feminine hygiene products... At 13... With pretty much the whole town watching....

        So not only did the entire school now know the new girl was epileptic... They ALSO knew I was having my period...

        It was like the perfect combination of every 13 year old girl's nightmares. I remember BEGGING my parents to move, or at least never make me go back to that school again.

        It's a funny story to tell now, but at the time... OMG! Lol!

        "It is through disobedience that progress has been made, through disobedience and through rebellion." Oscar Wilde, 1891

        by MichiganGirl on Tue Mar 18, 2014 at 06:44:20 PM PDT

        [ Parent ]

  •  Thanks so much for spelling out what's (2+ / 0-)
    Recommended by:
    otto, koNko

    involved. Some quack tried to tell me once I was epileptic, now I know he was talking out of his ass. Glad you have yours under control, somewhat.

    Here I am, now. Entertain me.

    by blueoregon on Sun Mar 16, 2014 at 06:32:37 PM PDT

    •  As was noted upthread (7+ / 0-)

      There are many different types of seizures.  There are absence seizures, for instance which involve... well, absent stares, repetitive motions.  Kids have them, and they will tug on their clothes, or rub at the fabric.  

      Streichholzschächtelchen

      by otto on Sun Mar 16, 2014 at 06:39:46 PM PDT

      [ Parent ]

      •  No, he was trying to convince me (5+ / 0-)

        the harassment I was undergoing from neighbors was all in my head. I didn't buy it. I knew I was right.

        Here I am, now. Entertain me.

        by blueoregon on Sun Mar 16, 2014 at 08:21:10 PM PDT

        [ Parent ]

      •  minor mals (5+ / 0-)

        I have those also but mine are basically a stare. I cant blink or quit staring for 30 seconds or so.

        •  I used to do that all the time (5+ / 0-)

          and it turns out that it is a symptom of Graves Disease, a hyperthyroid disorder that is autoimmune in nature.  If this is your only symptom, get your thyroid checked!

          The GOP -- Hating Women, Gays and People of Color since 1854
          PS Despite the dumb screenname I picked, I'm female!

          by Former Chicagoan Now Angeleno on Sun Mar 16, 2014 at 11:43:06 PM PDT

          [ Parent ]

          •  Shawn Kemp's kid (3+ / 0-)
            Recommended by:
            FloridaSNMOM, koNko, Creosote

            form NBA player Shawn Kemp has a number of children.  One of his kids plays for the U. Washington Huskies.  He was recently diagnosed with Graves disease, and is now getting  much better.  

            Streichholzschächtelchen

            by otto on Mon Mar 17, 2014 at 05:33:14 AM PDT

            [ Parent ]

          •  I also (3+ / 0-)
            Recommended by:
            FloridaSNMOM, koNko, otto

            Have had 10 grand mals as stated lower down on the page. I was 17 months old when we were in a car wreck and my head hit the windshield. I had massive brain damage(motor part). I was expected to be mentality impared  That was 62 years ago and I always have the comfort of knowing what I was slated for. Having 10 grand mals , taking 500 mils per day of Dilantin, being uninsureable, and laking being corronated- are a small price to pay for being a functioning human being.

            •  500 mils of Dilantin is a lot ! (4+ / 0-)
              Recommended by:
              christianlsv, otto, ladywithafan, Creosote

              But if it works, it is worth the trouble for sure.

              I was on 400 mils for about 10 years and had lots of side effects including almost constantly bleeding gums, I used to literally carry a bottle of Listerine so I could avoid mouth infections. Not everyone gets that, but it's common enough with high dosage.

              But yeah, it's great to be alive and cheat fate, right?

              Wishing you a long and happy life, and hope you can get insurance now, being an epileptic means paying lots of medical bills out of pocket, that is for certain.

              No one is coming to save us, the future is in our hands.

              by koNko on Mon Mar 17, 2014 at 09:33:15 AM PDT

              [ Parent ]

      •  Can you describe your "magnified apprehension" (6+ / 0-)

        a little more? I'm curious if it's anything like mine.

        I always likened my auras to a panic attack. Suddenly I'd get this awful tingling feeling in my chest that would intensify when I inhaled. Sometimes I'd start shaking my hands in a feeble attempt to rid my body of this weird energy. According to onlookers, I looked terrified.

        Sound familiar?

        •  Sometimes (3+ / 0-)
          Recommended by:
          FloridaSNMOM, koNko, Creosote

          Ever since my Dad was self aware enough to notice that this was happening to his kid, he has sort of had ongoing doubts about it. It's not a material thing, so he can't see it happening.

          As a result, I've had my own questions.  So, I've thought about the idea that it's a panic attack.  It's not.  The wave forms show that.  

          It's that Deja Vu you noted.  It happens only momentarily sometimes, and is not followed by it.  

          The apprehension is when I start needing to look around to see if the visual stimuli change at all.  I have to wait for what seems like a long time to find out if it's really happening.  

          (Plus, I was being poetic.)

          Streichholzschächtelchen

          by otto on Mon Mar 17, 2014 at 05:36:10 AM PDT

          [ Parent ]

          •  But it's a good description (7+ / 0-)

            Actually, I think your overall narrative is pretty accurate for my experience, the map metaphor is spot on and I'm going to steal it.

            You recognize the roadsigns but have no idea where the hell you are, but have been here before, but ... ?????

            Disorientation is not an accurate description.

            Alien visit, then a long sleep followed by a slow awakening, all in 5-10 minutes of real time. Or less.

            I always liked the title of Heinlein's book "Stranger in a Strange Land".

            I have my own definition of that.

            No one is coming to save us, the future is in our hands.

            by koNko on Mon Mar 17, 2014 at 09:42:50 AM PDT

            [ Parent ]

  •  The other kind is like nitrous oxide. (6+ / 0-)

    Not exactly unpleasant and also comes with a penumbral warning. I have only fallen once, the first time.

  •  Thanks for the diary, Otto! (12+ / 0-)

    I started to comment, and my thoughts ran so long I had to  delete!

    I work in the hospitality industry in Arkansas and last week was Texas' Spring Break. We were crazy busy! I've been teetering on the edge of a tonic clonic seizure all week. There's just been so much going on and we've been understaffed. Finally for the evenings before my last two work days, I've been at home taking half a mg of Ativan, with my 2 normal anti-epilepsy drugs, and then going to sleep for 10 hours. Then last night was my equivalent of "Friday night" and I took half a mg of melatonin (I have to look hard for 1 mg pills to split) and ended up sleeping 11.5 hours. I think I've finally pulled away from the brink!

    It's scary and disappointing, because I thought that I was really well covered with the two AEDs

    •  It's a difficult one (7+ / 0-)

      Even today, you don't want to call attention to yourself at work, but you don't want to put anyone at risk.  

      I attend a lot of scholastic chess tournaments.  There are a couple hundred people walking around, and it seems to be the precise trigger environment.

      Streichholzschächtelchen

      by otto on Sun Mar 16, 2014 at 07:36:49 PM PDT

      [ Parent ]

      •  Worse still: Discotheques (6+ / 0-)

        With the flashing lights, the noise and people waving their arms in your face.

        Seriously, I have had to explain on occasion why I will pass on the drinking and disco and ecstasy, thank god the 70s, 90s, 00s/whatever are behind us, LOL.

        No one is coming to save us, the future is in our hands.

        by koNko on Sun Mar 16, 2014 at 10:14:51 PM PDT

        [ Parent ]

        •  New cop car lights? (6+ / 0-)

          How do those strike you?  I realize that people don't understand that epileptics actually drive cars legally, and that the new police lights on cars are so bright, vivid, and repetitively flashing, that they could easily be triggers.  

          Streichholzschächtelchen

          by otto on Mon Mar 17, 2014 at 05:37:24 AM PDT

          [ Parent ]

          •  Any flashing lights bother me (6+ / 0-)

            It could simply be that I am fearful it will trigger a seizure, but I find the new style rapid and asynchronous lights particularly bothersome and look away because of the brightness and irregular cadence.

            I know it's hard for normal people to understand how uncomfortable flickering lights make us feel, and as a long time computer user (I work in IT) for years I had to be careful about the refresh rate of CRT displays; hence, I was an early adopter of LCD displays when they were really expensive.

            I don't drive, and after going off medication, I even stopped riding my bike for a few months as a precaution since a previous attempt to go off several years earlier resulted in a biking accident that was not fun.

            A side benefit is I travel a lot and almost only use public transportation, which I have found is a good way to explore lots of places. Most of Asia and Europe is really easy, USA can be a challenge!

            Sometimes, my wife gives me a lift.

            No one is coming to save us, the future is in our hands.

            by koNko on Mon Mar 17, 2014 at 07:56:24 AM PDT

            [ Parent ]

          •  Some lights can be seizure triggers even (6+ / 0-)

            for non-epileptics. But the newer lights on cop cars are really awful. I have a mild, but controlled epilepsy - in fact they're not sure if I still have it. Started out as petit mal in my childhood, completely disappeared and then returned in an altered form when I started taking birth control pills. I had only one (so far) major seizure. Passed out for several minutes, spine was locked or so I was told. No convulsive movements. I woke up in an ambulance wondering the usual, where am I, even who am I. Someone from work came in the ambulance so I could piece things together talking to her. This was many years ago. Tried dilantin for awhile, then switched to phenobarbitol - 64 mg. twice a day.

            It has worked ever since -knock wood.
            I used to have very tiny blips, which feel exactly like the feeling that you get when you forget what you were about to say. I had several of those the morning of my seizure and was just about to go to the infirmary at school where I worked. Now, I might still have an occasional tiny blip, but not even sure if it's epilepsy. EEGs a few years ago were "inconcluive." At this point, being 68 I'd rather continue the meds as opposed to taking any chances. Other than the usual ones.
            Be aware of any gum problems with dilantin - that's why I discontinued.
            Best of luck and thank you for your detailed experience.

            •  Luckily (3+ / 0-)
              Recommended by:
              FloridaSNMOM, northerntier, koNko

              I lucked into some fine teeth with big gaps, so I've never had any problems with gums.  

              Streichholzschächtelchen

              by otto on Mon Mar 17, 2014 at 08:22:34 AM PDT

              [ Parent ]

            •  I recount my bleeding gums saga elsewhere. (5+ / 0-)

              I was on 400 milligrams of phenytoin for years and my gums were almost constantly bleeding and recessed. After lowering the dosage to 200 mils it pretty much went away.

              I'm finding something quite interesting in this thread; lots of epileptics in their 60s still on medication.

              I suppose this has to due with the cause; was your root cause diagnosed as head injury?

              Mine was not, and like many people manifest in chidhood/teens, my seizures declined in severity as I approached 30 and got under excellent control, and a little over a year ago I went off medication and so far so good.

              But the risk is there, so I totally understand you sticking to the regimen.  If it works, don't fix it.

              No one is coming to save us, the future is in our hands.

              by koNko on Mon Mar 17, 2014 at 09:54:33 AM PDT

              [ Parent ]

              •  No head injury, but it was diagnosed as (1+ / 0-)
                Recommended by:
                otto

                petit mal. When it recurred after completely disappearing, it was then described as temporal lobe abscences.

                As for the cause, I may never know. Interestingly enough, my mother had a seizure just after giving birth to me. They thought it might have been a reaction to scopolomine, aka twilight sleep, which they used to give to women as an analgesic pre-labor.

  •  i have had 10 grand mals (15+ / 0-)

    the first in 1969 the last in 2010. Mine put me out for 15 to 25 minutes . When I regain consciousness I know nothing or who I am. The first thing I try to do is get up. That is when I become aware that I have had a seizure, because I cant walk. I have decided that my brain is not sending the signals to my legs and I have forgotten how to walk. When I regain consciousness its not like waking up in the morning. Its more like a computer when it has to reboot. The computer has crashed and when it reboots it is not as normal coming on to be commanded, it is working on fixing the problem that made it crash. My condition is like this for 15 or 20 minutes, before I regain everything and address the damage.

    •  Very interesting (6+ / 0-)

      Thanks for sharing.  

      Streichholzschächtelchen

      by otto on Sun Mar 16, 2014 at 08:36:08 PM PDT

      [ Parent ]

    •  Sound like mine except I have absence seizures (7+ / 0-)

      Takes about 20 minutes to recoup. Don't know where I am, what I'm doing (really fun when out in public by myself). Can't recognize my parents or boyfriend. Awful.  

    •  Sounds a lot like mine (8+ / 0-)

      My brain stops whatever it is doing, and I might get a sense of something wrong. The reboot comes slowly - just lying there not processing, then attempt to get up. I"m slow, can't take stuff In. I'm RIGHT-handed, as opposed to my normal left. Speech takes eons, if I can do it at all.….

      Irony is that I'm a UNIX admin. My brain just happens to run Windows.

      ObamaCare! Sign-up by phone: 1-800-318-2596

      by mwm341 on Mon Mar 17, 2014 at 05:53:32 AM PDT

      [ Parent ]

      •  Fascinating about the hand preference (4+ / 0-)
        Recommended by:
        FloridaSNMOM, koNko, Neevah, Creosote

        I experience visual disruption.  Another user experiences language disruption.  

        You experience a disruption in your body controls, but seem to retain some awareness.  That's got to be frustrating.  

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 05:55:48 AM PDT

        [ Parent ]

        •  Awareness (3+ / 0-)
          Recommended by:
          otto, Creosote, MichiganGirl

          Things go out over a few seconds, speech and hearing first. I start to twitch right, and fall that way if I'm going to. Speech and hearing are gone; I'm out. Coming back is slow;; time sense is off. Hearing before speech. Body control can take a while - but concept of YES/NO is present.: "squeeze my hand if you can hear me". Looooong time before Squeeze. "Do you know where you are?" Looooong pause before Release. And more, but I don't really know; too tired to get involved...

          ObamaCare! Sign-up by phone: 1-800-318-2596

          by mwm341 on Mon Mar 17, 2014 at 05:23:42 PM PDT

          [ Parent ]

    •  I'm like that too. (8+ / 0-)

      A little background. I take Dilantin 400mg daily.
      Over the years my grand mal seizure activity has dropped off considerably.
      Currently going on 10 years now. There was a time in my twenties where I was having 3 to 4 every year, but as the years have passed, so has the frequency. Thankfully.

      I still have some little episodes where I feel like I am going to go into a full blown grand mal. This along with my other attacks happen as I am ready to fall asleep. I can only recall a couple of times where I was actually out of bed or off the couch doing stuff when I had a seizure and those happened because I had not taken my medication.

      Needless to say I feel very fortunate as my Epilepsy has not altered my life to drastically. The side effects from the medication is my biggest issue now days.

      Going into a grand mal is strange and scary as hell. I feel so out of control when it comes on. The aura is what I think it is. All my senses go bonkers. Sounds, smell in particular with a very strong "out of it" feeling. It is very difficult to describe. I have told people I feel like I am dying.

      No recollection of the seizure itself. When I come to I am totally disconnected from reality. I walk and stumble around for up to 20 minutes not knowing what happened. I do not know who I am, where I am, what my name is. Nothing. I only know something is "wrong" and I feel sick. I will continually ask what's wrong and what is going on?
      Even when I am told that I have had a seizure it doesn't register. Then after some minutes I begin to grasp that I had a seizure. It is at this moment that fear of what happened starts to settle in and that in of itself is very disconcerting.
      I usually have a horrible headache and every muscle in my body hurts when I have returned to normal.

      After the seizure I do not recognize faces or voices and everything is foreign to me. Having my wife around and her talking constantly to me is very reassuring. She seems to be the only person able to keep me calm.

      Thanks otto for the diary. Take care and the best to you and everybody who suffer from seizures.

      "We can either have democracy in this country or we can have great wealth concentrated in the hands of a few, but we can't have both." Louis Brandeis

      by wxorknot on Mon Mar 17, 2014 at 08:08:22 AM PDT

      [ Parent ]

      •  Great description (4+ / 0-)

        That is a fabulous description of the entire process of a tonic clonic seizure.  They stopped referring to them as Grand mal, and I think that has stuck.  

        It is a perfect description of a very commonly experienced seizure episode.  

        Aura, bad feeling, seizure, post-ictal, irritable.  

        I said, "Nothing happened to me!  I'm not going anywhere in an ambulance!"

        It's typified by the irritability.  

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 08:20:38 AM PDT

        [ Parent ]

        •  Irritability magnified (2+ / 0-)
          Recommended by:
          otto, Creosote

          I always remember the walking, stumbling, shuffling and that sick irritability as the first memories after regaining consciousness.

          When I come too, wish I had a dollar for how many times I ask what's wrong? what's happening?

          Tonic clonic...thanks for the correct description.

          Something else I didn't mention. As the seizure begins I can really feel it in my jaw and throat. Some of my seizures later on in life have felt as though I could almost hold it back, yet the feeling of holding back all the water from a damn ready to fail.

          "We can either have democracy in this country or we can have great wealth concentrated in the hands of a few, but we can't have both." Louis Brandeis

          by wxorknot on Mon Mar 17, 2014 at 10:15:29 AM PDT

          [ Parent ]

          •  Oh and BTW, (1+ / 0-)
            Recommended by:
            otto

            As I mentioned it has been close to 10 years since my last seizure (tonic clonic) and this happened when I switched to the generic of Dilantin. (Phenytoin)

            In fact I had 2 seizures in a 5 week period shortly after the switch. I remember the time leading up to the seizures that I just didn't feel right and that a seizure felt imminent. Sure enough, it happened.

            The 2 seizures were after a 7 year drought.

            Anybody else experience this?

            "We can either have democracy in this country or we can have great wealth concentrated in the hands of a few, but we can't have both." Louis Brandeis

            by wxorknot on Mon Mar 17, 2014 at 10:28:55 AM PDT

            [ Parent ]

      •  For me there's no aura, I think (2+ / 0-)
        Recommended by:
        otto, MichiganGirl

        Except maybe for getting physically awkward with things (one thing at a time mode, though usually I'm a fairly heavy multitasker) and a little confused about things that take two hands. I lose words in sentences. Thing might taste a little funny; I'm not sure. I can't engage with things. Problem is, I don't know if it's just being really tired.

        My neuro doesn't help much: he tells me I have Temporal Lobe Epilepsy, with some frontal lobe involvement, and that I may be having more seizures than I know about. Doesn't want me driving or ON A BICYCLE right now.

        ObamaCare! Sign-up by phone: 1-800-318-2596

        by mwm341 on Tue Mar 18, 2014 at 06:18:31 AM PDT

        [ Parent ]

        •  That's what they always say (1+ / 0-)
          Recommended by:
          MichiganGirl

          They will tell you not to take showers, or baths...  

          It's wise of them to tell you that, and you should listen to it, but it's hard to avoid doing those things.  

          I never listened to them...  I guess I'm not a very good example!

          Streichholzschächtelchen

          by otto on Tue Mar 18, 2014 at 06:31:24 AM PDT

          [ Parent ]

      •  I find it interesting (1+ / 0-)
        Recommended by:
        otto

        that u are aware of the oncoming doom. I never regain the minutes or whatever before the seizure. One moment its life and the next moment I am trying to get up. The seizure I had in 1988 when I came too I couldn't breathe, and rolled over on my stomach. I crawled over to the couch where the phone was, and just sat on the floor until I could figure out who I was and who to call. I was in pain and I called my mom-in-law. She took me to the hospital and I had a broken vertabre in my back, which means I have no defense or reflexes. I must just pass out.

        •  When I have had tonic clonics (1+ / 0-)
          Recommended by:
          christianlsv

          I have only had about 5 that I know of.  The ones that I had while I was awake, I just remember one last moment, and then there is a period of time that I am out, and then I begin to regain consciousness, but I am not aware of that regaining of consciousness until many minutes have passed.  

          So, in those situations, I never had any aura that I recall.  

          Streichholzschächtelchen

          by otto on Tue Mar 18, 2014 at 08:09:44 PM PDT

          [ Parent ]

  •  Thank you, Otto, & everyone for sharing & (13+ / 0-)

    providing readers with a small insight on what you experience.  

    I did not realize the vividness remained & was remembered with some types of seizure activities.

    For over 15 years, many children with various seizure disorders passed through my classroom door which necessitated continuing ed  inservices/symposiums at state's medical universities.

    As a result of these trainings & due to the ages & disabilities of the students, we were able to respond, intervene, track.  With a few children, we were able to recognize when a seizure was imminent.

    Because of age and/or disabilities, none of the children could verbally share as you have...

    The only time I ever broke down (at school) & wept was due to one particular child's seizure activity the first time it happened in my classroom.  

    This extremely beautiful precious child was born with a rare syndrome that rendered her unable to voluntarily make a sound or any gross motor movement.

    Until she had a seizure.  Grand mal seizures that not only spun her around in a circle but somehow elicited one sound at intervals-"Hai".  

    When that first seizure finally ended, I held her & wept for a very long time.

    To the day she left this plane it was thus and no medication altered the nature of how they manifested.

     But, certain environmental things were noted that seemed to trigger some of the seizures, so we were able to modify environs, lighting, sounds, touch at school & home with success.  Enhancing quality of life for her & loved ones.

    Some years later, I noted that the local public schools were finally incorporating some of the same type modifications in their Special Ed classrooms.  

    Thankfully, it appears to now be SOP.  Which I personally attribute to greater awareness & understanding due to  advocacy of ongoing sharing by those living with seizure disorders.

    •  ^^^This^^^ (6+ / 0-)
      Recommended by:
      oslyn7, No Exit, Neevah, otto, worldlotus, Creosote

      My daughter contracted bacterial meningitis when she was 2.5 yrs old (she's 5.5 now).  Also having an immune dificiency (all this we found out later), the meningitis was able to eat at her brain unimpeded - and all over.  The scarring caused hydrocephalus as well as seizures.  At first, they were small and once every 2-3 days.  They figured it might start to happen so they started giving her Keppra before the Vanco regimen had even stopped.

      Then the seizures became daily, then multiple times daily and each time they'd bump up the Keppra.  When we left the hospital the first time (after 77 days - 97 total), she was at 10mg/day.  After the second time in after only 3 weeks out (yes - she got meningitis twice, and different strains - but this we caught early... almost immediately) we were up to 12mg/day.  it went up to 16 at one point, now down to 15mg.  We tried all the 'complementary' meds; lamictal, etc...but it didn't do anything or make it worse.  We're down to 5-10 seizures a day - what her new neurologist calls 'spasms' more so than tonic clonic her old one did.  We're now on the Ketogenic diet as well, but 3 months in and there's no real change.  Well, other than mixing her blended diet (G-Tube fed as well) down to the gram.  Fillers in the meds we have to aware of, so usually the name-brand and not generic.

      I've always wonder what she's experiencing.  She's extremely limited (down to yes/no) in her communication.  It seems that she knows they're coming.  Sometimes we can help her out of them - either by talking or by running an ice cube or our finger along her lower jaw.  Sometimes they're just minor staring, but mostly they're "Screamers" - her whole body will pull to the right, her head to the left and just when she calms down from that, she'll get body jerks and scream with the exhaled breath.  It seems like incoming low pressure/storms coming in lead to bad days.  Sometimes EMI, but lots of people, noise and bright lights - including sunlight  - are triggers.

  •  Thank you. Very helpful diary (6+ / 0-)

    and comments.

    © grover


    So if you get hit by a bus tonight, would you be satisfied with how you spent today, your last day on earth? Live like tomorrow is never guaranteed, because it's not. -- Me.

    by grover on Sun Mar 16, 2014 at 10:47:35 PM PDT

  •  TX for the description (8+ / 0-)

    I had a dog who got seizure disorder after an eye surgery. He ended up on phenobarb for the rest of his life. Occasional break-thru seizures happened. And they were tonic-clonic. On the floor, convulsing, jaws snapping.

    And my mother has some seizure disorder, picked up within 15 min on EEG in hospital after being admitted to a mental health unit elsewhere. She is 94. She was put on Depakote, but is probably non-compliant with regards to meds. All her symptoms are probably due to a subdural hematoma over the temporal lobe that she got several years ago. Hard to tell the difference between senility and absence seizures with her, and very frustrating for her offspring. She fell yesterday, has a LifeLine, and I guess my sister got her off the floor. Getting a phone call from 600 miles away is not much fun.

    Americans, while occasionally willing to be serfs, have always been obstinate about being peasantry. F. Scott Fitzgerald, the Great Gatsby

    by riverlover on Mon Mar 17, 2014 at 12:12:02 AM PDT

  •  Left TLE, Simple Partials, different experience (12+ / 0-)

    I, too, have simple-partial epilepsy focused in the left temporal lobe. Mine is intractable, although the frequency of seizures has dropped dramatically with age. Until I was 40 or so, I had around 300 events per year. Now, I count the months between seizures instead of the seizures per month.

    Because of the specific location of the lesion(s), my experiences are very different from yours. The most prominent damage is near Broca's area, responsible for a significant portion of language processing.

    My seizures rarely deviate except in duration and perceived severity.

    I sometimes have a premonition -- Something I look at or hear starts sticking in my mind a little wrong, like a loop, or a single word suddenly has more meaning, importance, or significance than it normally should under the same conditions. Something feels wrong...

    After that comes the true onset: I'm struck with an electrical shock sensation that turns fluidly into stunningly powerful deja vu. Everything around me has been exactly as it is before, it seems -- everything I look at, my act of looking at it, all of it has happened before.

    When that sensation hits, I sometimes have a split second to say a single word -- it's almost a game. The word is usually "seizure." That will be the last word I can say or understand for the duration.

    The deja vu fades, and I lose the ability to connect language to meanings. I know the words you are saying are supposed to represent meanings, but I can't connect them. I'm unable to store any of the words you tell me because I can't connect them to meanings -- like listening to a foreign language. I can't read words, because my brain normally turns written words into sounds, then connects the sounds to meanings.

    Internally, my brain is still thinking and processing, but on a pre-linguistic basis. I think completely in a "language" of sensations that represent meanings without the words themselves. I know the sensations of meanings are supposed to have sounds that represent them, but I can't pair them together. The entire language becomes "the word on the tip of my tongue."

    If I'm driving, I don't have an accident. Once you learn how to drive, you know red means stop without having to use language. I know what a stop sign is, what road rules markings are without having to use language to say, "That curved arrow ahead means that I must turn left from this lane. Pressing the brake now will bring me to a stop before I enter the intersection." I don't forget where I was going or how to get there.

    When playing in an orchestra, I continue to play -- music notation is not the same sort of language. Through practice, I know the fingering for an a-flat, the duration in tempo, and what the conductor means with his baton.

    I can convey though body language some rudimentary communications -- if you try to talk to me, I can hold up a finger to signify "Just a minute," or shrug and wave my hands in a "Shut-up" motion to let you know I can't talk for the moment. I can also understand the same sorts of things from you -- if you point in a direction, I know you want me to look or walk in that direction, for example.

    Within 30 seconds to two minutes, I'll be able to establish the link between one word and its meaning, then the rest will come flooding back in. I'm left with a sensation of my brain sloshing from side to side within my skull.

    Interesting to hear your description. I've met only one other person in real life with TLE.

  •  I had 2 seizures at age 9 (7+ / 0-)

    I don't remember a thing about them, other than being tired for the rest of the day, and the distress of the people around me at the time. I figured I had just slipped and fell down.

    An electroencephalogram caused to me to on medication for the rest of my childhood. (Until I found out in my teens that the med contributed to acne...I was through with it after that.) Fortunately, I've not had a seizure since. And a double-fortune is that those 2 episodes kept me from being drafted in 1971.

    I have fainted twice in the 50+ years since I was 9. Both times I remember as I fell, and what seemed like an eternity as I laid on the ground. The last time was about five years ago when I was actually in the midst of typing a comment here on Dkos, I got up to hit the can and hit the floor on the way. I could see myself falling, and then it seemed like forever before I could recognize our small hallway and reorient myself. In actuality, it was just a minute, if that. I got up, took a leak, and came back to the computer and finished the comment.

    Our brains are extremely complex organs. In some, the brain makes them fall down and convulse. In others it might lead them to commit horrid acts....if we could figure out those causes we might have a better world.

  •  Wish I had known... (9+ / 0-)

    Four years ago my spouse had a seizure while alone. It was the first sign of a (benign but life threatening) brain tumor. When he recovered, he tried to describe what had happened and neither one of us recognized it. We went over signs of possible stroke--none--and he seemed fine, so it was ignored.

    Weeks later again, and again, and then signs of other neurological problems. But in the interim he could have run the car into the opposite lane or over a cliff.  (Surgery and he's fine now. Thanks.)

    Seizure information is very valuable to everyone so thanks for the diary.

  •  Seizures are individual (9+ / 0-)

    I was diagnosed with epilepsy at age 13.  I simply passed out.  When I awoke, I was groggy and headachy and had no memory of what had happened.    

    These seizures vanished by age 38.  I am 63 now and haven't had a seizure since.

    In retrospect, I do not think I really had epilepsy, because the seizures vanished and because no epilepsy medication ever worked.  I believe now that the seizures I experienced began when hormone levels increased and peaked and ended when they subsided.

    Most doctors group all seizure disorders into the category of "epilepsy."  Unfortunately, there is little money to be made by discovering the myriad truth of seizures.  

    Old Hippies Never Give Up!

    by ravenrdr on Mon Mar 17, 2014 at 05:10:57 AM PDT

    •  Epilepsy (4+ / 0-)
      Recommended by:
      northerntier, sawgrass727, koNko, No Exit

      It's supposed to involve more than one instance of seizure activity.  That's one of the bare bones descriptions.  

      And you are exactly right about how unique they are to the individual.  

      A commenter upthread has a very similar diagnosis to mine, yet has a seizure which impacts his language abilities.

      Streichholzschächtelchen

      by otto on Mon Mar 17, 2014 at 05:45:20 AM PDT

      [ Parent ]

  •  Pregnancy and epilepsy? (4+ / 0-)
    Recommended by:
    otto, Amber6541, northerntier, koNko

    Does anybody here have experience with this?

    I get so much conflicting information. Some studies say my meds (Keppra and lamictal) are fine, some say the baby will have spinal and cognitive problems. One doctor says it's fine, another would only want me on one medication if absolutely necessary.

    This isn't going to be a reality for another few years, but it's something i fret over nonetheless.

  •  Myo clonic-tonic seizures only partially diagnosed (7+ / 0-)

    They canceled my medicaid before I could get to the neuro. The clinic wants to run blood work and see if they can figure it out well enough to treat it, but the blood work is full price and I just don't have the money, I don't even have the money for the follow up clinic appointment. And I fall into the medicaid gap in my stupid state.

    I will go weeks without one, then I'll have a day of seizing on and off. Sometimes they're as small as my legs kicking on their own, or my torso twitching, and sometimes they look like grand mal... but I always keep consciousness. I can't always talk, and sometimes I stop breathing. Sometimes I lose words for a while after, I just can't pull up the ones I want.

    I've been to the ER several times after or during them,and they've never found anything on the EEG's. I've even had seizures during an MRI.. that was fun in that little tube, and hasn't helped my fear of them any.

    The going theory is that something was damaged when my thyroid levels were high before they irradiated it. I was up in  Thyroid Storm area many times,and I've had seizures from that which acted much the same. Now my thyroid levels are ok, but the seizures are still here.

    Sophie, my assistance dog, keeps me from falling with them, because she won't let me get up if there's one imminent. She also licks my nose when I stop breathing (think of a mama dog getting a pup to breathe, same thing).

    I feel a pressure in my head when seizures are forthcoming, most times. Kind of a tingling, pushing.. no pain usually though.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Mon Mar 17, 2014 at 06:58:16 AM PDT

  •  Epilepsy portrayed in Paul Harding's fiction (4+ / 0-)
    Recommended by:
    otto, FloridaSNMOM, northerntier, koNko

    I found Paul Harding's novel TINKERS deeply rewarding in a number of dimensions, and wondered as I read (and re-read) it whether his depiction of epileptic seizures at the center of the protagonist's father's life and world were credibly accurate in the context of the character Howard Crosby, overly poetic, a little of both. Would anyone who has lived with epilepsy and read TINKERS care to weigh in?

    •  Here's a block of text (6+ / 0-)
      Tinker, tinker. Tin, tin, tin. Tintinnabulation. There was the ring of pots and buckets. There was also the ring in Howard Crosby’s ears, a ring that began at a distance and came closer, until it sat in his ears, then burrowed into them. His head thrummed as if it were a clapper in a bell. Cold hopped onto the tips of his toes and rode on the ripples of the ringing throughout his body until his teeth clattered and his knees faltered and he had to hug himself to keep from unraveling. This was his aura, a cold halo of chemical electricity that encircled him immediately before he was struck by a full seizure.
      I don't personally have any experience with temperature sensations.  I do know, however, of people who have the tinnitis of some sort as an aura.  

      When I described a simple partial seizure in the diary, I was also describing what would be the "aura" if I were to go into a full on tonic clonic seizure.  

      Some people will identify smells, for instance, in their aura.  

      I assume the way that service dogs work is by identifying  these barely perceptible changes in behavior.

      The service dog for an epileptic can note the oncoming seizure, and give the person warning.  

      Streichholzschächtelchen

      by otto on Mon Mar 17, 2014 at 07:55:22 AM PDT

      [ Parent ]

  •  For years after I was put on SSRI's (6+ / 0-)

    which is one of those automatic drugs they give people with multiple sclerosis.....

    I have always had what I call little mini seizures, but for years and years I would have these how do I explain.....

    I would go into a De Ja Vu like state, I was there but I wasn't there - like a dream.  I could be talking to someone and they would know nothing except occasionally I would hear, "did you hear what I just said?" and well, no it did not compute yet, my brain is some place else and yet I am right here.

    This part felt good, don't know how to explain it, flushed with chemicals, brain zapping, but the dread of what was about to come would start....

    And that's the end of the cycle, coming back out of this seizure-like state.

    I have since found out that what I was experiencing was Seratonin Syndrome and could have been deadly.  I put up with it for 10 years but did not know the connection until I was put on Cymbalta and man did it go into high gear again.

    So anyone taking Zoloft, Prozac, SSRI's, SRNI's, SSRE's, etc., are all at risk of having these seizures.

    Thank-you for sharing.  Seizures from any cause are frightening - your brain is out of your control and you often know it but can't do anything - but have dread that it will come again.

    -6.13 -4.4 Where are you? Take the Test!!!

    by MarciaJ720 on Mon Mar 17, 2014 at 08:59:23 AM PDT

  •  Thank you for sharing this with us. (4+ / 0-)
    Recommended by:
    FloridaSNMOM, sawgrass727, otto, No Exit

    You have a great descriptive writing gift. I have never had a seizure although I have had a minor vascular bleed (like a TIA) and that was a weird experience.

    Pope Francis: the Thumb of Christ in the eyes of the Pharisees.

    by commonmass on Mon Mar 17, 2014 at 09:05:10 AM PDT

    •  Thanks for the compliment (3+ / 0-)
      Recommended by:
      commonmass, FloridaSNMOM, No Exit

      It means a lot.

      Streichholzschächtelchen

      by otto on Mon Mar 17, 2014 at 09:46:45 AM PDT

      [ Parent ]

    •  Fully agree (5+ / 0-)
      Recommended by:
      otto, commonmass, FloridaSNMOM, Neevah, No Exit

      I often start a diary solely based on title without paying attention to the author.  After getting about four paragraphs into it, I wondered who wrote this...such good writing. Scrolled up and...oh it's otto.  Of course.

      Apolitical first-person stories are the gems of dkos.  I had never even thought about the experience of having a seizure and am glad for the insights provided by this diary and the subsequent comments.

      Like commonmass, I've never had a seizure but there are two things that resonated with me.  The first,

      I still don't "feel" the time, but I'm beginning to get an idea.  
       When I played football and had concussions, the most disconcerting thing in the moment was having no connection with time. I could count fingers, I knew where I was and what happened but I didn't know when I was.  A coach would check me on the sidelines and I couldn't tell him what day it was or what month or even what part of the year.  I realize this may not be the same experience, though.

      The second most pronounced aspect of the concussions was a sense of deja vu, which came up in the comments to the diary.  Having a deja vu feeling was my self-awareness that I just had a serious impact.

      The brain is remarkable.  

      •  aw, Schucks nt (2+ / 0-)
        Recommended by:
        commonmass, FloridaSNMOM

        Streichholzschächtelchen

        by otto on Mon Mar 17, 2014 at 10:02:50 AM PDT

        [ Parent ]

      •  Time (7+ / 0-)

        I totally agree with your comments about time.

        I have two completely different experiences with epilepsy. From ages 10 to 22 I had absence and complex partial seizures, or what used to be called petit mal and psychomotor. The blank stares and picking at clothes type. I had no idea they were coming on and no memory of them after they happened. Not to be drama queen, but putting on the crown anyway, I ceased to be a sentient being for I don't know how many seconds every time it happened. Medicines never fully controlled it. I don't know how much time I lost, between the seizures and sleeping due to the depressants. Every day after school I came home and slept for two hours. Mom would come home after work, come into my bedroom and wake me up, saying hi and having a short conversation. I'd wake up later and see her downstairs, asking her when she got home. She'd tell me she got home right before we talked earlier. I never remembered any of it. Ever.

        So at some point in my early-idiot 20s I weened myself off my meds. The doc hadn't helped my yearning to get off the AEDs because half the time he said I could probably come off the drugs in a couple of years and the other half he said I would probably be on them for life. Being at college and not having my family asking me if I had taken my meds every day was a relief. After I graduated, I went to another neurologist and had an EEG, and it showed no abnormal activity after I'd been off the medications for over a year, so I felt vindicated.

        Twenty years later, two years ago, I had my first tonic clonic seizure. Like all tonic clonics, there's no consciousness. It was during a nap anyway. When I woke up though, I was in a world of wtf. I was supposed to drive myself and my 7 month pregnant co-worker to training 3 1/2 hours away the next morning. I hadn't even packed and my husband knew it. I wandered into the living room and he started asking questions. Later we learned I was in an extended postictal state. Then? We thought I was having a stroke or something. I couldn't generate my own thoughts, I just repeated what he said. He tried to get me to tell him when I had to be at work the next day, and when I had to be at the training location. I just kept saying the same time to each answer.

        Needless to say there was no training the next day. One weird thing about that night was that I remembered all the visuals during the postictal state, but none of the verbal stuff, except what my husband said. Time was also wonky. The three hours in the ER wasn't "felt," like you've said. I was outside of it, moving into and out of rooms and corridors. The last thing I remember was standing at the one manned cubicle in a loooong hallway, one end dark, paying some lonely dude $100.00 copay in the middle of the night. The next morning I found my paperwork and the diagnosis was "mental problems."

  •  Thanks for sharing! Saturday is the National Walk (2+ / 0-)
    Recommended by:
    otto, Neevah

    For Epilepsy in DC. Come join us as we raise funds for vital research into epilepsy. My lab has studied epilepsy for the last 20 years or so..

    The money raised will go to fund innovative research and help mostly students, post docs and young assistant professors as they embark on a research career in epilepsy.

    Here is a link to my page for the walk --  feel free to peruse the website and see if you can donate to this awesome cause.

    Epilepsy Walk

    "None of us got where we are solely by pulling ourselves up by our bootstraps" Thurgood Marshall

    by UTvoter on Mon Mar 17, 2014 at 10:37:24 AM PDT

  •  An interesting factoid about brain waves&epilepsy: (4+ / 0-)
    Recommended by:
    otto, oslyn7, No Exit, outragedinSF

    About 30 years ago I saw a documentary on the brain... (it was a 10 Part mini-Series on NOVA on "The Brain" ... a fascinating series if you can find it).... anyway, in one of the segments, they were comparing:

    (a) the pattern of a "healthy" brainwave,
    to...
    (b1) the pattern of a "healthy" heartbeat,
    to...
    (b2) the pattern of an "unhealthy" heartbeat,
    to...
    (c1) the pattern of an epileptic's brainwaves (normal),
    to...
    (c2) the pattern of an epileptic's brainwaves (during seizure),

    and what they found was the following:

    (a) a healthy brainwave
    is erratic,
    (not excessively so, but it is NOT like the "healthy" heart beat)

    compared to:
    (b1) a "healthy" heart beat,
    which is even & steady,

    compared to:
    (b2) an "unhealthy" heartbeat,
    which is erratic,

    compared to:
    (c1) the pattern of an epileptic's brainwaves (normal),
    which is even & steady,

    compared to:
    (c2) the pattern of an epileptic's brainwaves (during seizure),
    which is explosively erratic
    (ie: we're talking OFF THE CHARTS erratic.)

    In other words, there seems to be sort of a balancing YIN/YANG dynamic in our brainwaves, which epileptics' have out of sink.... out of balance. It seemed as if the "slightly" erratic nature of a "healthy" brainwave served as sort of a "pressure relief valve" whereas, since epileptics' brainwaves are "steady & even" (ie: "too constricted" or "too rigid") they do not have the "pressure relief valve" and so when too much "erratic" energy builds up..... as soon as some sort of stimuli pushes it over the limit... wham... the brainwaves explode like the pent up damn breaking... or a volcano erupting.

    Anyway. I also wanted to share this:

    I had a dear close friend when I was a teenager who had epilepsy. He was Colombian. His name was Tyro (but the T is pronounced like a "D" ... ie: "Dryo") ... I have been with him during several seizures.... He passed away when I as 14.... he was several years older than I ... His death might have been related to his epilepsy.... they found him drowned in the East River of NYC. He died during the seizure, but they were not sure if he had the seizure first, and then fell into the water and drowned, or if he was pushed into the East river and then the seizure hit. Tyro was gay... and slightly effeminate ... and that was a harsh time for gays in NYC ... and Tyro might have been selling sex for money, etc... It was a dark time. Also, when Tyro had seizure, he wouldn't fall or shake so much.... rather, his entire face and eyes would contort, as if he were glaring at you .... but if you looked close, his eyes would be fluttering in the back of his eyelids.... and his hands would clench in a fist ..... In other words, if you didn't know better, you might think it was some sort of a threatening challenge.

    hmmm... I've been wanting to write a diary about Tyro for a long time... as a tribute.  

    I always found that fascinating and wondered if this dynamic might be a key to curing epilepsy, without a life long dependence on a drug.

    * * * DONATE/VOLUNTEER: Marianne Williamson for CA-33 * * * #CampaignFinanceReform is the lynchpin of our democracy. #AIKIDOPROVERBMoveSoonerNotFaster ~

    by ArthurPoet on Mon Mar 17, 2014 at 11:05:13 AM PDT

    •  And thank you for sharing such a personal glimpse (3+ / 0-)
      Recommended by:
      otto, oslyn7, No Exit

      into your experiences with epilepsy.

      * * * DONATE/VOLUNTEER: Marianne Williamson for CA-33 * * * #CampaignFinanceReform is the lynchpin of our democracy. #AIKIDOPROVERBMoveSoonerNotFaster ~

      by ArthurPoet on Mon Mar 17, 2014 at 11:06:25 AM PDT

      [ Parent ]

    •  There is an electrical counterbalance (2+ / 0-)
      Recommended by:
      No Exit, ArthurPoet

      I know that nerve stimulators are installed in order to be able to deliver an electrical impulse to counteract the growing erratic wave patterns.  

      I have been meaning to look into the advances in those to see if they apply to me, yet.

      There are some tutorials on youtube for how to read an eeg.  They introduce strobing to produce the expected effect, and then they look for the waves against the background.  something like that.

      it's that they are able to identify the consistent waves of the epileptic against the erratic responses to the strobing.

      I think that's roughly how it works.

      Streichholzschächtelchen

      by otto on Mon Mar 17, 2014 at 11:30:15 AM PDT

      [ Parent ]

  •  My teen son lives with absence seizures (3+ / 0-)
    Recommended by:
    rockdart, Neevah, otto

    Multiple drugs and a VNS device do not fully control, but seem to reduce frequency somewhat... or perhaps a great deal... it's been over a decade since first diagnosis.  

    I can't really begin to describe how hard it is for a parent.  It is his life, but our constant worry.  It is a burden that is shared by the entire family, siblings included. We are an epilepsy family - not simply a family in which one person has epilepsy.

    Now in adolescence verging on adulthood he's trying to come to grips with the world... hard enough for any human being... and to understand what limitations apply to his life because of epilepsy (everything that excites him - all the physical risk taking - army, firefighting, emergency services... seemed blocked.)

    And he has to figure it all out in a chemically induced fog that must make it hard to even think.  School is very hard - maybe he wouldn't have been a scholar anyway, but with the double kick of medication, college may not be possible.

    He's functional, has friends, moves around the world on buses...  but what are his life prospects?  We don't know.

    Life, his and ours, has its joys... but there is a constant worry for the future that never goes away entirely.   We accept, and we work with the reality we have.    

    •  Did you try the Ketogenic diet? (2+ / 0-)
      Recommended by:
      otto, Miles

      Just curious as to your experience with it if you did.  It's probably easier for my daughter since she's G-Tube fed and doesn't have to consume such a restricted and fat heavy diet.

      •  We know about it (1+ / 0-)
        Recommended by:
        otto

        Docs recommend partial ketogenic... and low carbs in particular.  He is in agreement that it would be a good thing, but he's a teenager, and it is a decision he has to make for himself.  So far he has not chosen it, although we have repeatedly expressed willingness to support him if he want to try it.

  •  Ah, context... (3+ / 0-)
    Recommended by:
    Pompatus, Neevah, otto

    To not know where or when I am - truly terrifying. I believe mine have been temporal lobe seizures, although for years I was told it was just depression and was stuck in SSRI trials (which did not make the disorientation spells go away).  I haven't exactly been eager to pursue getting this diagnosis nailed down since I'd really be in trouble if I did not drive.  Thankfully, we found a bacterial infection which seems to have been the primary cause of  the seizures. We've knocked the infection back considerably, and all seizure-y activity is much less looming now.

    Thanks for writing this. Well done.

    "The Tea Party is, at it's core, essentially an intellectual movement." ~Michele Bachman

    by MsGrin on Mon Mar 17, 2014 at 03:36:32 PM PDT

  •  epilepsy.com has good support (2+ / 0-)
    Recommended by:
    otto, christianlsv

    I was diagnosed in 2008 after having tonic clonic at restaurant.  I had 4 or 5 a year until last year.  I take Lamictal and Keppra, last year the doc upped my Keppra to 2500 and so far seizure free!!!  Side effects are present, Lamictal causes slower processing of information and Keppra causes increased irritability/emotionality.  But I can take it.  I want to try to the low-THC marijuana, but can't risk drug tests for work.

    I may sometimes have partial seizures, I have had two or three "aura" episodes in the last year, but I don't think I lost awareness.  Mine is really weird, it seems centered on shapes.  Any kind of drawing of a shape, square circle etc., will fascinate me and seem to swirl around in my head.  And I will feel nauseous.  Lasts 2-5 min.  

    Not driving is the worst.  I am in Louisville, KY and we only have basic bus service.  To go anywhere on the bus takes at least twice, maybe four times, as long as driving.  My husband and I have strong ties here, but I sometimes dream of moving somewhere with good public transportation.  Most of those places are too expensive, however.  

    I have gone on epilepsy.com when I needed some support.  They have good info, good message boards, and a chat room.  Info on epilepsy and pregnancy as well.  They also provide a diary function where you can keep a seizure diary with detailed info - good for doctor visits.

    So glad to see increased awareness of epilepsy!  Thanks for the diary.  

  •  Never remember my seizures. (2+ / 0-)
    Recommended by:
    Creosote, otto

    Mine always leave me drained, scattered & disconnected for about a week afterwards. Always have to keep my stresd level relatively low. Doesn't work, but try anyway. With few exceptions, most of my seizures have been in my sleep, so I couldn't begin to tell you how they feel. All of my seizures that have come upon me when I was awake were stress related.

    Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup. Same goes with cats. We have claws and teeth! DaPootieQueensArt

    by triciawyse on Mon Mar 17, 2014 at 11:06:36 PM PDT

  •  I am going to say the obvious, because I am (1+ / 0-)
    Recommended by:
    otto

    ignorant and fascinated. The electricity in your brain is misfiring and decoupling structures that normally work together inside your brain.

    Time and Space
    Context and Meaning AND Time and Space

    Fantastic diary. I am grateful for your sharing of this difficult and frustrating condition.

    "It were a thousand times better for the land if all Witches, but especially the blessing Witch, might suffer death." qtd by Ehrenreich & English. For Her Own Good, Two Centuries of Expert's Advice to Women pp 40

    by GreenMother on Tue Mar 18, 2014 at 05:52:03 AM PDT

    •  Good (1+ / 0-)
      Recommended by:
      GreenMother

      My goal was to share this interesting experience, but to also be an advocate, and let people know that epileptics have all types of seizures, and that a good chunk of us live completely normal lives.  

      Streichholzschächtelchen

      by otto on Tue Mar 18, 2014 at 07:24:32 AM PDT

      [ Parent ]

  •  As A Child I Saw A Foaming At The Mouth Seizure (1+ / 0-)
    Recommended by:
    otto

    And I must say, it was quite impressive to see someone erupt like a punctured can of shaving cream.

    Men are so necessarily mad, that not to be mad would amount to another form of madness. -Pascal

    by bernardpliers on Tue Mar 18, 2014 at 05:27:15 PM PDT

  •  Thank you! This is a part of the dKos community (4+ / 0-)
    Recommended by:
    otto, Lara Dale, waterstreet2013, koNko

    I had never considered. I have reflex epilepsy. I've had it all my life but it was incorrectly diagnosed until I was thirty. Being properly diagnosed was life changing. The doctor just backed up the Depakote truck and everything, everything, everything changed. On rare occasion, if I receive a major shock, I still have that all-too-familiar feeling of filling up with bees but, damn, modern pharmaceuticals are a grand thing.

    What is interesting, and perhaps useful to others, is HOW I was diagnosed. First of all, my seizures are atypical. I lose consciousness, go completely limp and (surprise) stop breathing. ...so that's fun. As a baby/child/teenager seizures were rare. As an adult, not so much. Ultimately, I had to hire someone to drive for me and go into then places where I had more difficulty, like the grocery store. Since I worked a 60-80 hour work week this really meant I had staff because I was too much for one poor soul to manage in terms of schedule. I was also not the most pleasant person AND THIS IS IMPORTANT because as soon as I was diagnosed and taking Depakote I recognized that I had been having absence seizures several times...an hour. My brain was constantly under assault. Since I had never known any other way, suddenly having a quiet mind completely changed my interactions with people. This was easily the very best part of the whole transition. I told my boyfriend, now my husband, "wow, this is what it feels like to be in my own skin!"

    So back to being diagnosed - because I had gone so many years without a diagnosis, I had stopped telling doctors about it at all. Understand, I was seizing four or five times a week but I had been told some version of, "it's all in your head" (which is funny only in hindsight) so many times that I had given up.

    One day, I got poison oak in the tissue around my eye. My boyfriend drove me to see my doctor. While the doctor was looking at my eye he was using one of those little exam flashlights and flicking it around right in front of my eye. I seized. When I came to the exam room was crammed with nurses and another doctor. My doctor was barking orders to all concerned and yelling at my boyfriend, "What the hell do you mean it happens all the time!!!!" [Tip: if you want the medical profession to roll out every medical test known to mankind go completely limp, fall off the exam table, smack your head on the floor and stop breathing . It's magic.]

    My seizures were not easy to spot using standard testing. This was not news to me because I had been through said testing many times. What I had not been through was Kaiser Permanente. It was interesting because always in the past I had seen a single neurologist. This time it was a team effort and, in the end, that is what made all the difference because I didn't need A neurologist, I needed the RIGHT neurologist.

    I will never forget the afternoon when the sixth neurologist to examine me came into the exam room lugging my now over-large file. He was from India and, as you will see, it was his country of origin, of all unexpected things, that played the biggest part in solving the riddle.

    He said, "I'm going to ask you some strange questions so I just need you to trust me." I got apprehensive. He continued, "When you are in the shower do you wash your hair with hot water?" I was astonished and not for the seemingly obvious reason. I answered, "I can't take showers at all. I have to take baths." He got this huge grin on his face and said, "and you wash your hair under the single large stream of tub water." I was floored. How could he know? "How about the cereal isle of a grocery store?" I was already starting to tear up so I just nodded. It went on like that for two or three more questions each more obscure than the last but I already knew that he knew what was wrong.

    He said, "don't worry! It's not bad." I remember saying that I was crying because I was relieved. He said reminded me that he hadn't told me what it was yet but I did't care because ANY diagnosis meant freedom and that I wasn't crazy. As he explained reflex epilepsy to me I asked him why it had been missed by so many other excellent doctors. He said that reflex epilepsy is exceedingly rare in the US but it is more common in India. He had seen it before.

    If you read up on reflex epilepsy what you find is that I am a textbook case. I'm the damn poster child I fit the diagnostic profile so perfectly but orphan conditions aren't called "orphan" for nothing and real hospitals don't employ a fictional Dr. Greg House. What solved my case was the work of a DIVERSE team. Diversity, quite literally, changed and likely saved my life.

    I have since met so many people who are still struggling to finally get an accurate diagnosis and I know how demeaning and discouraging it can be. You are in my prayers. Know this, the day after I was diagnosed there was no part of my life that did not improve. You never know what is going to cause that final puzzle piece to fall into place. It could, be poison oak and a guy who grew up in India.

    "When in doubt, do the brave thing." - Jan Smuts

    by bunnygirl60 on Tue Mar 18, 2014 at 11:14:55 PM PDT

    •  Thanks (2+ / 0-)
      Recommended by:
      waterstreet2013, koNko

      This is an interesting story.  I hadn't heard of reflex epilepsy.  

      Can you tell me what the cereal aisle question was supposed to mean?

      Every time I write something like this, I feel fortunate that I only lived for a short while with uncontrolled seizures, and that the diagnosis and meds were so simple. .  

      Streichholzschächtelchen

      by otto on Wed Mar 19, 2014 at 06:50:34 AM PDT

      [ Parent ]

    •  Best snip of writing at DKOS... maybe ever: (3+ / 0-)
      Recommended by:
      otto, koNko, RiveroftheWest
      "Tip: if you want the medical profession to roll out every medical test known to mankind go completely limp, fall off the exam table, smack your head on the floor and stop breathing. It's magic."
      Charles Dickens envies you:
      "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way--in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only."
      Same impact, sorta. Yours wins for focus and terseness.

      Gotta be love for poison oak somewhere, right? Had to be someone so why not you?

      "Stealing kids' lunch money makes them strong and independent." -- Rand Paul Ryan

      by waterstreet2013 on Wed Mar 19, 2014 at 10:41:59 AM PDT

      [ Parent ]

  •  My dad never remembered his seizures (3+ / 0-)
    Recommended by:
    otto, waterstreet2013, koNko

    but when I was a kid, my mom and I noticed that he would turn his head to one side and open his mouth real wide about 15 or so seconds before his seizures started.

    "Harass us, because we really do pay attention. Look at who's on the ballot, and vote for the candidate you agree with the most. The next time, you get better choices." - Barney Frank

    by anonevent on Wed Mar 19, 2014 at 06:26:51 AM PDT

  •  I've had 3 seizures in my life (2+ / 0-)
    Recommended by:
    otto, christianlsv

    About a year and a half ago, I stupidly thought I could safely quit benzodiazepines cold turkey. I had my first seizure while I was driving. I wasn't expecting to have a seizure, but it just happened. I remember feeling a tingling sensation in my lower lip and a feeling of falling backwards. I'm very fortunate that an old friend was driving behind me and called 911 after my truck came to a stop on a freeway on-ramp. Scary stuff. I had my 2nd seizure about a week later, when I was sitting on my room alone watching tv. I felt the tingling in my lip coming on and I tried desperately to get out of the chair before the seizure hit. No dice. From what I remember, I woke up a couple hours later on the floor confused with a pounding headache. I must have vomited, too, although I'm not 100% sure. I do remember being extremely emotional after the seizures and getting upset because my parents weren't very compassionate at the time.
    Long story short, I've haven't taken a benzo since and have remained seizure free. I totally empathize with anyone who suffers from seizures.

  •  Seizures (3+ / 0-)
    Recommended by:
    otto, koNko, RiveroftheWest

    An friend of mine thirty years ago turned me on to what it must be like to experience what you have to deal with your whole life. I was amazed at how well she handled it (a very understanding husband), but she said the thing she could never get used to was knowing in advance that the seizure was coming on because everything would start to play out in front of her in slow motion. Then she would come to and see it all over again in real life, real time. Have you ever had this kind of incredible deja-vu experience? I am genuinely, compassionately curious.

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