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Medical Forum / Diseases and Disorders / Epilepsy / January 2005

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Epilespy Chat groups

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jedic24 - 22 Dec 2004 16:44 GMT
Hi everyone!  I'm new here and looking for support.  I really need people to
chat with.  I was wondering if anyone knew of any chat rooms that actually
had people participating in them.  I've been to a few and had no luck.  So
if anyone could help me out I'd really appreciate it!

Thanks!
Heidi
G.Ross - 22 Dec 2004 20:35 GMT
> Hi everyone!  I'm new here and looking for support.  I really need people
> to chat with.  I was wondering if anyone knew of any chat rooms that
> actually had people participating in them.  I've been to a few and had no
> luck.  So if anyone could help me out I'd really appreciate it!
> Thanks!
> Heidi
This might be a quiet time to post, but there should be others around later
today.  This is an International Message board where most questions and
support needs you might have can be answered.    We have people on each of
about 4 of the North America timezones, South America from time to time,
Europe and both Australia and New Zealand.   If you see any older messages
still on your reader from Julie in Idaho or Howdy Dave, they both have
websites with lots of General information, and list them usually at the end
of any of their posts. You should bookmark those if you can, since they're
handy to refer to whether you're reading the Group or not.
 The Idaho site has First Aid Charts, both have  links to http://efa.org 
the American Ep.  Foundation website which has information plus a
medications glossary if you've been prescribed anything new (to you) and
don't get a complete printout from your Pharmacy (or you can get there from
the address above.)
  Both those sites (Julie's and Dave's) have lots of information on dealing
with either being newly diagnosed, or up to date information they've
assembled over last 6+ years.
  If you don't see a topic around that you wish to discuss, just start a
new subject line, and post it onto the group.  Replies can show up over the
next ~24-72 hours or longer, depending how often some of the people read the
group (and allowing for the time of year at the moment).
   I don't know if it matters to how you're currently reading the group,
but I sort my messages by 'message thread' so that even if someone replies
3-4 days after an original question (like yours), they will 'pop up'  under
that message subject line with the (local) date and time stamp.
  Some people  use Google to search for particular subjects that may have
been discussed in the past.  But since a lot of the information changes
frequently anyway, info. specific to e.g. medications or recent research
might be of more interest if it's put up over the last 4 years or so.
   I used to have a Generic post that included the http stuff for above
mentioned sites, but it's currently somewhere in Cyberland after I 'updated'
this to Windows XP home, and might not be available (retyped or googled out)
until after Jan. 1.
   Many of your questions (any you have) should still get some answers if
there are particular things you want to ask about.  There probably isn't a
Seizure type, symptom or medication you might wonder about that won't get a
response of use among the various posters here.    So ask away.

  (There Once was a uk.people.support.epilepsy group, but it got over-run
by a webmaster who was reselling addresses of people who posted there, so I
don't know if it's recovered yet.   This group is largely Clean although
some robots do group harvests without being aware (caring) which support
group they cull. )    G./

(I'm on Eastern Time (5 hrs behind GMT), I think you were Pacific? so 8
hours behind the UK GMT clocks.  I think the one or 2 UK people we had
posting are 'on the road' so they may not be back 'this year'...   I think
some of the people in Australia and New Zealand might still be around.
It's surprising how much is Similar among what we discuss -- either of the
seizure types, possible causes, and medications even if they have slightly
different names, can be discussed across International Lines. )
jedic24 - 22 Dec 2004 17:54 GMT
Thanks for answering me.  I am on EST also although I have no idea what it
shows up on with my newsgroup.

I have progressive myoclonic epilepsy and have for 4 years now.  I didn't
develop epilepsy until I was 20, although now that I look back on it I was
starting to show symptoms much earlier.  The medicine has started to stop
working for me and we are in the process of changing it.

I live by myself and am in constant fear of having a seizure and falling
down the stairs or falling and hitting my head.  I have no aura before I
seize.  A few times I have come to on the floor and only realize what has
happened because my tongue has been bitten to shreds.

Honestly I'm now suffering from severe depression because I just don't know
what to do anymore or how to cope.  My family lives 650 miles away and they
aren't a lot of support anyway.

I live in a very small town and the nearest epilepsy support group is an
hour away and I can't drive.  I would really like to find a chat room so
that I could talk to people in real time, however searching google, yahoo
groups, and msn I have come up with nothing where people actually are in the
room.

Heidi
Satch - 22 Dec 2004 18:31 GMT
> Thanks for answering me.  I am on EST also although I have no idea what it
>
> shows up on with my newsgroup.

I am within GMT+1 time zone which means I live in The Netherlands (Amsterdam
/ Ajax, does that ring a bell?).

> I have progressive myoclonic epilepsy and have for 4 years now.  I didn't
> develop epilepsy until I was 20, although now that I look back on it I was
>
> starting to show symptoms much earlier.  The medicine has started to stop
> working for me and we are in the process of changing it.

I am diagnosed with primary generalised epilepsy and I take 1000mg of
Depakene.

> I live by myself and am in constant fear of having a seizure and falling
> down the stairs or falling and hitting my head.  I have no aura before I
> seize.  A few times I have come to on the floor and only realize what has
> happened because my tongue has been bitten to shreds.

Yes, that certainly sucks. I live alone as well and I am worried too for the
same reasons as you describe though I am controlled by medications right now
but no one knows what happens to me when I shut the door behind my back. I
only had a tonic clonic seizure once and that scared me too death. This
support group help me to find answers to my questions which the doctors
could not answer because they see you as a "study object". Right now, as my
medications have been working right from the start, I am getting my live
back together again which means, going out in public, going out with
friends, sporting, work, etc. Last February, I did not go out, I shut the
door and felt miserable.

What about your neighbours? Can they offer some help here? I know it sucks
because you have to offer some of your privileges / privacy, etc. but this
maybe best for your personal health. I live in a large city in The
Netherlands and to be honest, I do not know my neighbours as I never saw
them. If I need support of them, then they will probably offer me a cup of
coffee and that is it! How useless can that be. Does this apply to you as
well? You say, I live in a small city so there has to be someone out there
that can watch your back sometimes and see if you are doing fine? What about
your friends?

> Honestly I'm now suffering from severe depression because I just don't
> know
> what to do anymore or how to cope.  My family lives 650 miles away and
> they
> aren't a lot of support anyway.

Regarding your original question, I am not sure whether there is a chat room
for people diagnosed with epilepy but what you can do is calling your local
epilepsy center and ask them whether there is one. There is one on MSN but
that is in Dutch language. The Netherlands is, compared to the States, a
really small country so there has to be a chatroom for people diagnosed with
epilepsy in English language. If there isn't one, then they can help you to
get in contact with people that have these kind of issues as well. If you do
not try, you never know the answer and you never get any luck! Of course,
this support group should be bookmarked because it is extremely active -as
you can see, we are almost near Christmas and Mr. Gaross is still writing
his postings, he is posting his links to the Internet, etc., etc. (what is
your typing speed Mr. G.?)

When I had my first tonic clonic seizure in February this year, my live fell
apart (it wasn't but that was how I felt) and no one, could really help me.
Though I do not have a car and I sometimes rent a car, I felt misserable
because the law took away the privilege to drive as they revoke my drivers
license. Because of this and because of some other reasons as well, I lost
my brother in the support process so I do not have contact with him anymore.

Best luck to you and let us know how you go. As Gaross say, people are on
vacation and we are hitting Christmas / New Year, so this support group is
not that active as it used to, but that will certainly improve in January.

Signature

Thanks.

Marco
The Netherlands

Paul Dalrymple - 22 Dec 2004 23:21 GMT
> Thanks for answering me.  I am on EST also although I have no idea what
> it shows up on with my newsgroup.
[quoted text clipped - 18 lines]
> yahoo groups, and msn I have come up with nothing where people actually
> are in the room.

      I haven't been on there in some time (can't find my password to
check it out). But the Massachusetts General Hospital in Boston has
neurology-based chat rooms you can check out. The URL is

http://neuro-admin-e.mgh.harvard.edu:8000/Default.htm
Theo - 29 Dec 2004 02:19 GMT
> I live in a very small town and the nearest epilepsy support group is
> an hour away and I can't drive.  I would really like to find a chat
> room so that I could talk to people in real time, however searching
> google, yahoo groups, and msn I have come up with nothing where people
> actually are in the room.

Undernet has an epilepsy group I think. But the last time I was there not
many people participated... maybe it was the time of year. I think its
simply named #epilepsy.

I just looked and there was only 2-3 there, and they werent actually
there I think. But... this is the season where many people are away from
their computers. Other irc nets (there are lots) are worth a look as
well.

You said you checked out yahoo groups. Join a couple of them, get to know
some people, in time you might exchange Yahoo Instant Messging numbers
with a few. Just a quick look shows about 100 who actually have
'epilepsy' as a word in their profiles. But I expect most do not include
it for privacy reasons.

I dont drive either. But give it time and meet some people in the various
kinds of groups. Opportunities for live chats will come in time... and
its better to chat with someone you are more aquainted with :o)

Good luck.
Chris Lesurf - 12 Jan 2005 11:35 GMT
The British Epilepsy Association (which now calls itself 'Epilepsy Action'
I think) has access to a chat group via its web site. It would probably
serve your purpose but it doesn't use a system compatible with my computer.

Chris L.

> > I live in a very small town and the nearest epilepsy support group is
> > an hour away and I can't drive.  I would really like to find a chat
> > room so that I could talk to people in real time, however searching
> > google, yahoo groups, and msn I have come up with nothing where people
> > actually are in the room.
 
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