Do you have a Neuro-Twitter?

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When you go to the Neurologist and his little beginner-resident with the cheat-sheet in his back pocket (that was an interesting visit!) asks you to "Describe your seizures" but is backing for the door as he's speaking, what do you say? How do you all describe your seizures to the doctor in 1 minute or less? You'd think they were all on Twitter! One tweet and it's the next guy's turn! I can never think of what to say. I don't think they really want a description, just something to write down, but what do you say and not sound like a minimizing, fabricating, nut? I think we need to make our own "tweet"sheet so we can just pass him a handout and say, "It's a number 8 with a bit of 12 at times," or something like that. How do you guys describe your seizures to your Neuro-Twitter doc? :noevil:
 
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Hello, Chatter-box!:-)
Love your post! It made me laugh, but in a great way.:-) So, do the nuero-twits(my sincerest apologies to the great neuro M.D.'s that visit this site...)sit you down, look into your eyes while leaning back into a chair & say, "Describe your seizures to me, please." I just look at them & ask, "Would you like to come to my house for 12 pots of tea, 18 pots of coffee, & 2.5 week's worth of breakfast, lunch & dinner? Oh, but please don't drop by until the 3rd week of the month when my hormones are thrown out of whack, between 8AM & 2PM." A lot of times I just tell them, "Ask my mom, ask my friends, but please don't ask me." That's when they know to Twitter their booties out of the room...until then, I'd corral as many of them in the room as possible during your appt. time & say, "Put your pagers, Blackberries, & iPhones away! What I have to say to y'all could get you put in all the Neurology research textbooks & journals from here to eternity!" Then go from there...hope this brightens your day.
 
Ya know,

Chatter-box, that's the first time I've heard that term used but I like it. It's cute...and sad at the same time. Have you voiced your concerns to your regular neuro?? If not, I think you ought to...I know that a lot of doctors have a bad habit of over-booking themselves, but that IS ridiculous. And if you can't get a decent answer, then I would start looking for another neuro....
 
You know, I later wrote a letter to that same doctor describing a seizure as best I could since I just needed time to think of what to say. I never heard back. I'll bet some of you can identify with this.
..............................................................................................................
When you asked about how these seizures were experienced, I just had no words to describe them. In fact, though you've heard the answer hundreds of times, unless you also have seizures you can never really feel how impotent you are to describe them. It is not an experience that can be described at all, but people try, and I will, too. At first, it is like experiencing a strong vacuum pulling my concentration in to foccus on a strange numbess that is spreading from it. Real things are becoming unreal as that vacuum is getting sronger and pulling reality into its void. I don't feel like I'm aware of things outside that are beyond that void and I can't talk, though I try to at first, to explaine what is happening, but there is now no language at all. Even receptive language is gone and I can hear people talking but not words, only sounds, and somehow I try to speak automaticaly when the sounds stop, like a condiioned response, but all I can make is a repetitive sound, but without either clear vocalization or meaning. Later on as the seizure eases up I can try to make real words but even then I can only make the first initial sound like buh, buh but without any meaning, only that conditioned response. In trying to talk, my mouth must be moving because other people say so, and my hands and arms and whole body are making sudden tic-like movements, but I don't actually feel this movement. That vacuum is too srong. I can't move at all or recognize anything beyond me and I just stare, but that is just automated, not something I do consciously. I don't know how long this lasts but I'm told several mintes, until I can feel more aware of things beyond myself. I may find I had wet my clothes (which can be a real emberisment, later!). As it ends, I feel sort of dizzy and confused and weak and have quite a tremor when I move. I try to find a place to just sit down until all this confusion fades, usually about 15 or 20 minutes. Then it is all over and things go on as though it never happened. But I sometimes try to remember that strange feeling to try to explaine it to someone else who was there, and I can remember parts of it like it was far away and not part of anything real but most of it I can't even remember, just the impression that it must have happened. Now, that's the best I can do about explaining it.
 
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Personally, I

think that's a PERFECT way of explaining it. If he didn't answer you, then it's time to move on to a different neuro...
 
When Rebecca is asked, she says, "I don't know what happened"
When asked what did you feel like before, "I don't remember."
When asked if anything was different that day, "I don't remember what I did."
End of discussion

...or easy enough to tweet.
 
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