I haven't been diagnosed as epileptic, but I do have seizures. They are
caused by a chemical imbalance in the right side of my brain. No reason
for the imbalance has been given yet. My first seizure was in this last
September and I have had like 10 since then. One day, I had six in one
day. Though I am not really epileptic, is it still okay to post here?
Mary Fisher - 15 Feb 2004 09:53 GMT
> I haven't been diagnosed as epileptic, but I do have seizures. They are
> caused by a chemical imbalance in the right side of my brain. No reason
> for the imbalance has been given yet. My first seizure was in this last
> September and I have had like 10 since then. One day, I had six in one
> day. Though I am not really epileptic, is it still okay to post here?
Of course it is. You'll learn a lot.
Welcome!
Mary
David Ruether - 15 Feb 2004 14:39 GMT
> I haven't been diagnosed as epileptic, but I do have seizures. They are
> caused by a chemical imbalance in the right side of my brain. No reason
> for the imbalance has been given yet. My first seizure was in this last
> September and I have had like 10 since then. One day, I had six in one
> day. Though I am not really epileptic, is it still okay to post here?
I don't know the answer to this (others who post here more often,
or who have been here a while do...), but I very recently started
posting here though I have not been definitely diagnosed with
epilepsy (MANY episodes of "jitters/jerks", "limps", "freezes",
speech-problems, etc., in the last four months [with many a day,
some lasting hours], but I'm always conscious and I have a
normal short-duration EEG and mostly normal MRI), and my
posts appeared welcome here...
--
DR
gaross - 15 Feb 2004 15:23 GMT
> I haven't been diagnosed as epileptic, but I do have seizures. They are
> caused by a chemical imbalance in the right side of my brain. No reason
> for the imbalance has been given yet. My first seizure was in this last
> September and I have had like 10 since then. One day, I had six in one
> day. Though I am not really epileptic, is it still okay to post here?
You found the right place just fine! Most of us don't necessarily
target ourselves as 'an epileptic' although some of us do, or are
comfortable with that phrasing. I prefer to say I have seizures or I take
medications to control seizures. (Since I haven't had one now since 1999,
I figure that's as accurate as an Outsider might need to know.)
Bob did a post on Friday the 13th (!!) under the message thread titled
"Re: Newly Diagnosed" at about 1127 Eastern time (427PM U.Time), where he
lists 4-5 Prime sites we use to find information about living with Epilepsy.
You will find those interesting to look through and might want to Bookmark
all or most of them. Within one of those, I've added one of MY Favourite
Pages below.
Within Julie's Idaho website, you'll also come across a First Aid for
Seizures site that you might find useful looking first at the Symptoms of
the seizure types. Check out --> http://www.epilepsyidaho.org/seizure.htm
and look at some of the Symptoms to see if any of those describe what you've
felt OR what others might have told you had happened if you were unaware
during the seizure.
Some of our seizure types are often recognized first among about 5 Very
Broad types that often have similar but specific Symptoms, Behaviours, and
First Aid (in this case) depending on the area of the Brain where the
seizure might start. In other words what Might work to help someone with
an Absence, might not be adequate for someone who might have a stronger
seizure type or tend to wander off into traffic or dangerous areas. I
found that chart Super Useful for others around me, to show them what my
seizure type is, and what they should do to not aggravate an Already Running
Motor Bike (my seizure), but to safely land it in a more therapeutic way
(for us both) without anyone getting injured and so I come out in a more
rested fashion (and quicker even).
There is also a SECOND First aid chart within the Idaho site, if you
like Swimming. The First Aid there is somewhat different if a person is
already in Water when their seizure starts up. THAT too, is a useful chart
if you need it.
Others will add their favourite sites if they have others. If that
article has expired on your server, re-Post and Bob or I will Repost those
links. It's still UP on my SERVER and the vanishing messages I have are
still 24-30 hours before his Post. That's why I suggested looking for that
one.
(I sort my messages here by Message Thread, so it's easier to find related
messages on a subject, since sometimes a Thread can start and run for 3-14 !
days, depending how often people read the group, or how the conversations
develop.) G.R. Welcome to our Neighbourhood
Bob - 15 Feb 2004 16:18 GMT
> Bob did a post on Friday the 13th (!!) under the message thread titled
> "Re: Newly Diagnosed" at about 1127 Eastern time (427PM U.Time), where he
[quoted text clipped - 7 lines]
> still 24-30 hours before his Post. That's why I suggested looking for that
> one.
Hi Dawn
Welcome to the group!
and Hi GR
Those websites I posted were
http://www.efa.org
http://www.epilepsyidaho.org/
http://www.northeastrehab.com/Articles/seizurefaq.htm
http://www.howdydave.com/
Bob
Dawn Compton - 16 Feb 2004 05:32 GMT
Thanks to all who are welcoming me here. I came searching for somewhere
where I could talk about what I am going through with others who truly
know and understand what I am saying. This seems to be the place. Most
of my family or friends has never had (or known anyone who has)
seizures. So, it is hard to talk to them about it. So, I am very glad
I found people who I can talk about what is going on.
David Ruether - 16 Feb 2004 15:34 GMT
> Thanks to all who are welcoming me here. I came searching for somewhere
> where I could talk about what I am going through with others who truly
> know and understand what I am saying. This seems to be the place. Most
> of my family or friends has never had (or known anyone who has)
> seizures. So, it is hard to talk to them about it. So, I am very glad
> I found people who I can talk about what is going on.
It is difficult to understand, having weird things come over
you unexpectedly, removing control. After about four months
of several things happening per day, I feel "out of control"
(episodes of "jerks/jitters", going-limp, "freezing", having trouble
figuring out how to say even common words, like "did" - plus
babbling nonsense) and like a "marionette" or a "village idiot".
Without a good diagnosis, I wonder about my mental state
(though I appear to be OK [and not depressed] when out of
these episodes). Where I am, there is a support group for
brain-injured people that meets once a month, and I'm thinking
of going (there may be one near you, too) - I've about worn out
the patience of friends with this, since it has been so intense
and persistent. This NG helps, too (though I do not want to
"dilute" it with too much non-epilepsy-related posting, having
not been diagnosed with it...). BTW, for some, the
"alt.support.sleep-disorder" NG is worth looking at, too - it
covers some issues that may sometimes be related (for instance,
for "curling-your-toes", see this web site on "aware sleep
paralysis": www.arts.uwaterloo.ca/~acheyne/S_P.html ;-).

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DR