Sunday, May 31, 2009

Re: [epilepsy] (epilepsy) Mixed subjects ....catchup time



Hi Millie
There does get to be many same-name people as the group grows. Guess we can't help that. Maybe I should put
Hope after my name and that would distinguish between them. I'm not a newcomer here there are just days when
get busy keeping our website up to date or life in general that's where the 'catch up came in' :)smile:)
I have had a 'hintz 57' mixture of seizures in my lifetime, but the General Grand Mal during the night was the
one they were most concerned with when first diagnosed. At that time and really until just a few years ago,
all the Neurologists would tell us is that I was having Grand Mal or Petit, so we figured all the rest were
just symptoms as .... I would get auras like crazy..then just be unresponsive and stare into space for a while
... then came the myoclonic jerking of my arm then ... no more I was unconscious and whole body action.
Have also had I guess what they would consider partials (dr. again won't say) where knew I was shaking,
falling to the floor, everything blurry, voices like a whisper, until I passed out into a Grand Mal.
As for how can I tell I am going to have an EP sz....I usually can't as all the above things I would be doing
before hand I would be in or on another planet in a brain fog. I knew it was a real one if ... the next 3-5
days were useless not even knowing what doing or who I was, chewed up tongue, super migraine, not wanting to
eat, and sleeping 24/7. This would be a General Grand Mal that I had no control what so ever over.
A Non EP - for example when our daughter died in Jan here for reasons undetermined yet, knew she was in hosp,
got woke up one a.m. just after hubby had gone to work with both daughter and hubby sitting beside me not
letting me up, but telling me that Tracy had just died. Shock...short story...the stress + shock of it all and
in denial still, had a little grand mal after the funeral and after everyone went home a week later. Knew it
was going to happen as was in a blur the whole time, and several times had to sit and just have a good cold
glass of water. The seizure was on it's way I could feel it coming (you know that funny feeling you get
sometimes) for some reason I picked up the T.V switcher and landed on some program that all I remember is I
got super into it and don't think took my eyes off of nor moved until finished. I had been having staring
flashes before, then my arm started to jerk really bad (took 2hands to pick up the remote right beside me) and
to top it all I very rarely watch tv. The change in thought of 'oh no here I go again' was enough to bring me
out of it.
Have had non-ep ones too when out in the sun with no protection and my seizure threshold was just right and
that was all it took to drop me to the ground. Crawled inside and somehow got a glass of ice cold water and
sat until it passed.
The brain is the most powerful organ in the body and if we can...not saying we can with all by any
means...catch them on time and circumstances are right they may be stopped. Not sure this helps much or not
but know I have had lots more experiences. Vit B12 low and sodium low once when ended in emergency just
because of a non-ep seizure symptom. Seizures of this type have nothing to do with the firing or the neurons
in the brain but seeing the person has epilepsy to begin with, it not only looks identical, is called a
seizure, treated as one (same meds), was told to make sure I got lots of the vit. to keep this from happening.
Sometimes it does sometimes it doesn't. All in what we tell our brain to do.
Write me any time....we have in the past so don't be shy...:))smile:)) Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: <mylmy@bnin.net>
To: <epilepsy@yahoogroups.com>
Sent: Sunday, May 31, 2009 11:41 AM
Subject: Re: [epilepsy] (epilepsy) Mixed subjects ....catchup time

Julie H, We now have 2 Julies

How can you tell whether you are going to have an EP sz
or a non-EP sz?. And if you think you will have an non
EP sz -- what do you do so that doesn't occur?

What kind of sz do you have when you have an EP sz?

Millie

> Hi All and a big warm welcome to all newcomers of late. Do not be afraid
> to ask questions...if memory doesn't
> serve you :( like it does me at times:) and you have forgot, ask the same
> one again. Many times if you need
> to.
>
> Maybe other give you me a label, but hey.....I can't find it on me!
> Many, many others have seizures or
> similar and may be continuously, when I consider myself lucky as only have
> once in a blue moon. I to, because
> I have epilepsy get non-epilepsy seizures if put in the right
> circumstance. Came close last night when got a
> call that someone very close to us (distant family but close enough to
> call 'grandma') died. I had just been
> checking the computer to get the date right as I write a letter to my
> daughter who past on very unexpectantly,
> when we got the call. (It was 4months 2 days and exact time of morning) I
> went into shock for a moment and had
> to watch myself rest of evening that seizure didn't occur. If had it would
> of been what they call
> non-epilepsy.
>
> I has been mentioned being difficult to get SI and disability and all
> those extras, as when go to apply I look
> like a normal person off the street. They don't see what happens during
> the night, or that once in a blue moon
> so am in that case put on a back burner for now. I know one person, that
> instead of having epilepsy put on the
> form, got it for osteoporosis which they had. This is not lying to them as
> the meds was taken during their
> epilepsy lifetime was the cause of this. Something to think about.
>
> One thing that helped me get my epilepsy in liveable shape, was do not
> think of it as a disease!! I have just
> some kind of a condition that attacks me now and again should I not look
> after myself. I are just the same as
> anyone else who maybe gets a cold once and a while, instead I get a
> seizure once and a while. Or like that
> person with diabetes where I take your blood every day and only get low
> and have a seizure, now and again.
>
> Being on most every drug I could be put on, and every type seizure My body
> doesn't like changing types. It
> just doesn't.
> I have been on a lot of generic ones from the 'get-go', but maybe just
> taken more often during the day. Once
> use to them it was ok. If started a drug as Brand, same thing after my
> body was use to it was ok. So for me it
> was whatever I had started with and body use to, that kept seizures under
> control. In today's economy, a lot
> are wanting to go to generic for good reason. Just be prepare for that
> change you may have to deal with in
> the first few weeks.
>
> This may be a mixture of subjects all in one, sorry folks, but don't get
> on here that often these days....will
> call it catch up time ok. Remember just my 2 cents worth too. Think
> positive as you are among a big family
> of friends all in the same boat. Want to write me .... do so any time.
> Julie
>
> Julie Hope
> epilepsyhealth@sasktel.net
> http://www.2betrhealth.com
>
>
>

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