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View Diary: Epilepsy Awareness- What is a Seizure Like? (131 comments)

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  •  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.


      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.  


          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.  


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

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            •  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:

                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.

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