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December 08, 2008

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yanub

Poor Mr. INAWW. I wonder where Mr. Gray was; maybe, as a veterna Verizon guy, Mr. Gray had seen it all and some woman convulsing on the floor was just another day to him.

Ben sounds like a great neighbor, and I love your comparison of him to oak trees.

Your not going unconscious is like my daughter. Carapace doesn't go completely out either. It's apparently because her seizures are migraine-epilepsy rather than straight-up epilepsy. You too, yes?

One Sick Mother

Yanub,

heheh yes I think Mr. Gray was a veteran. He was NOT getting involved.

It is not a question that I don't fully lose consciousness, I am *fully* awake and aware during these things. I have been able to tell people their phone number from memory during a seizure. I will clarify in part 3 of this story.

We don't think it is a migraine thing. I definitely *have* migraine, but not very often. #25 tried treating the seizures as migraine (see the post Doctor #25 and another couple of posts from this link: http://onesickmother.typepad.com/my_weblog/2007/11/index.html). I responded rather badly to the migraine meds he tried, so I think he is thinking that's not the issue.

-Paula

elizabeth

Wow, interesting, painful but intereting thanks for writing this. I can definately relate, at least with tonic/clonic, conscious, rinse and repeat for an hour or two. And yeah, what a hellish weight loss program. I wish you could be helped by a superduper nueruologist, since there are over 2500 seizures and they are finding new ones every day but, hey if you don't fall in the most common 5, they say, "All in your head" (Well ironically that IS where the electrical discharges are).

I feel for you while reading this not just the pain of having such seizures but that because you are conscious, you have to somehow justify yourself (instead of them fixing the problem?). Whew.

In a pure practical matter, I get stuck in tonic sometimes after a seizure cycle and I am thinking of getting a teeth plate as apparently the pressure can rip off crowns and crack teeth without one. Do you use one when you feel an aura, if you have time? The other thing is the tongue, lip, cheek - any tips on how to keep those blood free and not spit out a piece of them once you are done? I am sorry to ask, but if you have a tip?

I love your, "I was just released from the hospital yesterday, dizzy but I'm fine" line - yes, always tends to make men think, "Oh yes, we'll NOT watch her closely!" sorry, just seemed funny.

One Sick Mother

Elizabeth,

The teeth plate might be a good idea.

I have not had the problem of biting bits off myself (yet). It was actually theorized at one point that my seizures might originate below the level of the brain, somewhere in the spinal cord, because I retain so much brain funtionality. But there is no way to test that. And some EEGs say "left temporal lobe", which contradicts this theory.

OSM

Lisa Moon

Oh, gosh, love! Those poor newbies from Verizon!

I used to work as a support worker for adults with developmental disabilities. The first time I was to work 1-on-1 with a client who had severe seizures, despite my 'orientaion' to her, it was rather frightening. I mean, I'm pretty darn calm *during* the crisis, but afterward, realised I was shaken.

This young woman perhaps weighed 75 lbs if she was a lb at all, due to the constant seizures and difficulty getting her to eat. So, she's physically quite frail and then, sure enough, just as we're on our own, she started showing signs of her tonic/clonic pre-seizure activity, so I lay her out on the floor on a mat and notified other workers, but all we could do was to watch and time it. Her protocol included calling 911 after I believe 11 minutes if it was still happening.

I'm just mentioning this as I recall those 10 or 11 minutes being VERY long, so to know you were still in such a state after 40... well, I can only imagine how painful and exhausting that must be.

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